Little Bug Words

Strength in adversity

2012-02-07T12:00:00.000-08:00

I need to get something off my chest. This doesn’t have much to do with Autism. Instead, it has everything to do with strength in adversity. (Please note there is one instance of an F-bomb. Justified I think in this case.)

This is something that autistic children demonstrate every day- whether it attempting to say a new word, motor plan getting dressed, or dealing with judgment from their peers. Little Bug has certainly had his share and is developing ways to do with it. Another kind of adversity that Little Bug has to deal with is discrimination. You see, and you should know if you have been following along, Little Bug has two dads- Daddy Nick and Daddy Blake (that’s me!). Daddy Nick was born male but I wasn’t- I’m transgendered. This has been something that we are honest with the world about- especially with Little Bug. We thought that the people in our lives didn’t care. Apparently we were wrong.

This weekend we had some family over and one of Little Bug’s cousins took it upon themselves to yell at Little Bug about me- that I wasn’t his dad and that because I had boobs I couldn’t be his dad. This child told my son that I was Little Bug’s mom. Little Bug simply stood his ground and repeated “He is my dad and I love him.” I was able to intervene but it has been really upsetting (HA! Fucking understatement) to us all. See this isn’t the first run in about my gender with this child. At first, we figured that it was a normal curiosity from children. It now just seems like anger coming from another source. Given the persistence, I don’t believe that this is coming from tis child. I am sure that this is coming from his parent(s).

Why does this matter? In this day and age, isn’t any child lucky to have an involved parent let alone two involved parents? Do the genitalia of the parents really matter? If you have read this blog or known Nick and I, you know that we have worked and sweated and cried to help Little Bug reach his highest potential- whatever that may be.

What is surprising is that 8 years later, people in our family still have a problem with this. People still call me she or Little Bug’s mom. Why? What is the hold up? It is honestly astonishing to me. I can understand any challenges in the first few months, but years later? It honestly hurts. It hurts because I expected these people to at least respect us. Notice I didn’t say “accept”, “agree with”, “understand”, “empathize”, or “love”- just respect. Respect- something that each and every person deserves and should demand. I don’t have to agree with you or your choices, but I do have to respect them. This should be afforded to you whether it is your sexuality, gender identity, religious beliefs, or the way you choose to treat your child’s autism.

Assume the position

2012-01-31T10:46:00.000-08:00

Of late, that position in our house is lying face down on the floor crying- if you are Little Bug. This move has been the most difficult for him by far. He has begun to have some trouble with potty training. At one point, he had three accidents in roughly an hour. His self injuring- specifically biting, hitting, and scratching himself- has increased in frequency.

Nick and I were kinda taken off guard by how challenging this has been for Little Bug. Last time we moved, we had a week to do it in and although it was challenging, Little Bug was not as stressed. This time we had over a month. The house closed on December 9 and we didn't move until January 20, however the change has been tremendous.

I wish with all my heart there was a way to make this better. We have included him in every step of the way- looking for houses, getting the paperwork signed, he painted and decorated his room, and helping with general tasks around the house. We don't have any more suggestions.

My son the goat

2012-01-25T10:16:00.000-08:00

In the past week, Little Bug has eaten or chewed on the following:

· His shirts (every day) to the point of ruining them
· Chuggington trains
· Forks
· Spoons
· Pencils
· Cars
· Rocks
· A found staple (!)
· Sticks
· Stuffed Animals
· Many things that I have yet to discover

Little Bug has pica as well as a persistent need for oral input. This means that he without understanding the consequences has chewed all of the above and much, much more. He has chewed our furniture and blankets. One time he found a piece of glass at the beach and put it in his mouth to chew. Anything that can fit in his mouth will go in his mouth.

Because of this, Little Bug has chipped 7 teeth. We need to get him to the dentist (again) to ensure that there isn’t any critical damage to his teeth. Right now we are talking about baby teeth, but what do we do when they are adult teeth?

We are at a loss with this one. He has ready access to gum, chewing tubes, Ps and Qs, and we just ordered a chewing bracelet. We are going to see if his teacher will allow him to have gum in class to curtail some of the chewing. Currently he does have a chewing tube at school, but I am wondering if he needs prompting to use it. If you have any solutions or suggestions- no matter how crazy you may think they are, please send them our way.

The final move

2012-01-18T09:09:00.000-08:00

You would think that after moving three times previously with Little Bug, this would be something that we were prepared for. You would hope that we would be able to know when it was going to be too much. You would bet that since he is verbal, he would be able to tell us both of those things. You would be wrong on all three counts.

Just because you have done something that was hard previously doesn't mean the next time will be easier. Especially when it comes to change. It mainly just means that there will be a next time. For Little Bug, moving has always been hard on him. He doesn't like the boxes and people touching his stuff. He doesn't like having to let toys go for a little while until we get into the new house. He also has a hard time verbalizing this.

We thought that he was plugging along alright until last night when we found him sobbing by the fridge because his alphabet magnets were on the new fridge and not the old fridge. All I could do is wrap him in my arms and tell him that we were there for him. I couldn't tell him it would get better or easier, as I don't know that. I couldn't fix it. I can't shield him from it. We can only be present.

One thing he has been pretty excited about is that he has the whole upstairs to himself. We are excited because we have been able to make it into a OT play land- also known as a really cool bedroom. There are window seats for sitting and reading at, a spinning chair for vestibular input, a chalkboard wall for as much tactile and visual stimulation as one could want, a crash pad pillow and tent, and that doesn't include his toys. It has always been a dream that we would be able to really set things up for him so that he had access to all the sensory input he needed but without the requirement of furniture movement and adult supervision that has been needed before. Goal achieved.

It should all be complete and move in ready on Friday, which is a great thing because we are moving on Friday.

Looking forward

2012-01-05T10:51:00.000-08:00

I am a long time follower of Both Hands and a Flashlight and was inspired by their recent post for their 2012 resolutions. Instead of resolutions, 3 words were chosen to act as a compass for the year. I am inspired by this and would like to do my own take on this.

Accept. We really need to work on this principle. We need to work on accepting ourselves and all our wonderful quirks and imperfections. Also, we need to work on accepting help. This hasn't been easy for us to do in any facet of our lives. We are taking steps on this. Little Bug is now spending the night with his grandparents once a month and we have gotten help with our home improvements. This is a principle that we will consistently need focus on. This does not imply that by accepting things they must stay the same. Before you can make a change, you need to know where you are at and understand it.

Do. Especially when it comes to our health. I have accepted that I am out of shape and overweight. I get it. I now need to change. I need to get healthy so that I can be active in life. I don't want to be fat anymore. I don't want to die of a heart attack at 39 like my birth mother. I want to be preset. I want to be for my son and husband. We also need to do things for ourselves. Nick and I are making strides in this, but we need to go further. We need to allow ourselves hobbies and time outside of autism.

Streamline. My current job is all about streamlining and efficiency and while I excel at work, this is something I would like to bring home. Recently, (when we need it the most!) efficiency has gone out the window. It has been chaos. While it is understandable, it needs to change. We are exhausted- partially because of double work and inefficient.

He's really reading!

2011-12-23T12:00:00.000-08:00

Little Bug is in a K-1 program at school which means he does first grade work in math and science and then each student reads at their own level. He is doing really well in math- so well that he is ahead of the curve. He loves math enough to ask for more homework in it.

We recently had our parent teacher conference and were concerned about what his progress would be in reading. He is doing fine. In fact, he is reading- really reading! It is amazing to watch children learn to read. Their excitement is just amazing. Any time he sees a word that he knows he proudly (and often loudly) reads it and beams. In that smile you can see his pride and self esteem.

Now that's what I call a Christmas miracle!

2011-12-20T14:47:00.000-08:00

There are times in your life when you are knocked flat because you get to witness something truly amazing. Something that you never dreamed or dared hope would happen. We have been blessed with a child with Autism and because of him, we are often blessed with miracles. Small miracles that may not change the world for everyone, but they change ours forever.

Little Bug goes to a K-1 Autism program at our local elementary school for the performing arts. From the name, I am sure that you have gathered that there is a huge emphasis on the arts. For holiday season, each age group/ grade puts on a presentation. Little Bug's class joined a regular kindergarten and regular first grade class to perform.

He has been so nervous about this all week that he has dark little circles under his eyes and an upset stomach. Tears and meltdowns have come at a drop of the hat. This morning started with tears and worries- because today was the day. Little Bug woke up "fweakin out because of the people". We got him dressed in his school clothes and let him zone to help him calm down.

Nick and I went to the school for the performance. The auditorium was absolutely filled with parents and grandparents, aunts and uncles. Not a single child was in sight. The noise from the families was enough to make my ears hurt. Suddenly everyone drew quite as the children started to file in. Little Bug's class wore dressy vests and fancy shirts. Some of the other classes had reindeer antlers and snowflakes.

Little Bug stood and looked at us without smiling. He chewed his lip and wrung his hands. You could almost seem him vibrating with nervous energy. Suddenly a Kwanza song bombed throughout the auditorium. Little Bug's face lit up and he began to sing.

He sang and danced to 6 songs. He did this in an auditorium filled with about 60 to 75 people and a big stereo. He did this even though after every song people clapped and cheered. He smiled. He laughed. He didn't cry and he didn't cover his ears.

He was amazing. This is our Christmas miracle.

All alone at a birthday party-

2011-12-13T08:45:00.000-08:00

and he couldn't be happier! Little Bug is now in kindergarten and with it comes birthday parties. Lots and lots of birthday parties. It seems like every other week someone in his class has a birthday. Previously we have always stayed with Little Bug at the parties. You know the drill, chatting with the other parents while watching for signs of a meltdown from over stimulation. At the first two birthday parties, there were some rocky moments. Crying in a tube at Odyssey simply because it is way too much fun. Spinning and flapping at Chuck E. Cheese in the middle of the aisle whenever a game was taken. It was a learning experience for all of us.

As Little Bug has grown, he has begun to be able to really identify when he is tired, when too much is going on, when he is "fweakin' out" as he puts it and ask for time alone. We have made sure that he has a quite place in our house to go to and also tried to make sure that this sort of space is available for him at our friends and families. I think the biggest challenge has been getting our families to understand that he doesn't need soothing or loving- just space. Space to breath, space for quiet, space for himself.

Unfortunately, these spaces don't always exist at birthday parties. Birthday parties are monsters that spew sugar and stimulation. They provide just enough stimulation to leave children buzzing while not enough to get parents to say that dreaded line- NO MORE BIRTHDAY PARTIES! The last birthday party Little Bug was invited to was Sunday- at the gymnastics room at our local YMCA. It was a drop off party. The YMCA had trainers to help the kids with gymnastic equipment and toys for them to play with. Little Bug asked to be left alone and Nick and I obliged- but not before providing the mom with our cell phone number.

We spent the next two hours expecting a call while going about last minute Christmas chores. Any time a phone went off in the store, we would check ours, just in case. No call came.

When we went to pick Little Bug up, he was almost to the ceiling of the Y- conservatively 20 feet up- on a rope that he had climbed. He then climbed back down and up again. Apparently, our child is half monkey and had been "surprising" the staff with his climbing abilities for most of the party. We asked how he did and there were no concerns- apparently, and in a way that made us burst with pride- he was the model party goer. When we asked him for a recap of the party, he let us know that while he had fun climbing, sometimes he had to play trains by himself and run the trains back and forth in front of his eyes before he could go and play.

We are so proud of him- especially for being able to identify his own needs and fulfill them. We also can't wait for the next party- this time, Nick and I can enjoy ourselves!

Our first house!

2011-12-07T10:21:00.000-08:00

I can’t believe I typed that! We are closing on our first house. While there is a general sense of excitement, I feel relieved. I am so glad that we will be able to have a consistent place for Little Bug and our family. As you know, change is not always easy for people with ASD. Little Bug has gone through two moves (that he can remember anyway.)

The first move was pretty traumatic for him. We were new to ASD and not quite comfortable with our tools of the trade so to speak. While we had help from our family, it was still a grueling process as we literally moved from one house and were completely unpacked in 2 days. (Yes, you read that right). We felt a lot of pressure to get things “normalized” for Little Bug. Little Bug had quite a few meltdowns, a couple instances of self-injury, and was overall a ball of stress.

The second move was much better for everyone involved. Nick and I had much more knowledge about ASD and Little Bug which allowed us to help Little Bug with the transition. We were able to have Little Bug’s room completely set up and ready for him in advance. Little Bug was able to pick out paint for his room, put his new bed together, and “introduce” his grandparents to the house. He felt empowered. When he was overwhelmed, we were able to create a quiet place for him to go to in order to take a break.

We are now looking at our final move. Although it comes at a bit of an inconvenient time- Christmas time- it is incredibly exciting. We are moving in style this time- we are hiring movers. We have never done this before and it feels like a guilty treat!

Without further ado, here is a preview of our house! (Be warned, it is a lot of pink!)

backyard

dining room

garages

House!

kitchen

living room

part of the great room upstairs- it runs the length of the house

Difficult conversations

2011-12-05T13:32:00.001-08:00

The challenges at holidays have not gotten any better for Little Bug. A majority of our time at family gatherings is spent with one person either on a walk, in a quiet spot- an upstairs bedroom, an attic, or one time a garage- with Little Bug while the other person attempts to enjoy the family function. Unfortunately, no one *really* gets a chance to enjoy our time. After 5 years of attempting this, we have had to draw the line and have some difficult conversations.

Some have gone really well- totally understanding with alternate solutions like a post-Thanksgiving leftover fest. Others…. Not so much. For some reason, this is taken as an insinuation that we hate our family or don’t have the time for them. It seems like as Little Bug ages people expect him to somehow grow out his Autism. That at the age of 5, large gatherings would get better. That at the age of 5, loud noises and complicated would be welcomed.

I understand that, at times, people who aren’t around Little Bug forget that he has Autism. That only lasts a little while until the verbal stimming, echolalia, and repetitive motions are noticed. It seems that as Little Bug gets older the expectations grow with his age but not in as appropriate for his abilities in areas like communication, patience, etc. We simply had to make a good decision for our family. This is something we are working on and it is very difficult to do. It is a times to challenge to advocate for yourself. As part of our 18 month journey, we have had to really focus on doing this. On accepting things are they are and creating realistic expectations.

Autism Night Before Christmas by Cindy Waeltermann

2011-12-01T10:31:00.000-08:00

This was passed along to me and I thought I would share.

Twas the Night Before Christmas
And all through the house
The creatures were stirring
... Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned.

'Tis the season

2011-11-28T10:56:00.000-08:00

Ahhh, the smell of pine trees, the gentle lights from the Chrismas tree, and the sound of meltdowns. Yep, it is the "Holiday Season" (this should be read in that booming voice used for car commercials and wrestling announcements.). It kicked off with Christmas Part 1- aka Thanksgiving.

We went to our grandparents with hope of more success this year. Unfortuantely, large gatherings- which means more than 5 to 10 people- is still overwhelming for Little Bug. In those times when Lennon is crying and needs to be by himself while the rest of the family is having Thanksgiving, it is hard to be hopeful and remember our blessings.

Little Bug acted out a bit, had a couple of meltdowns, and needed to spend a good amount of time upstairs with Nick or I. As he puts it, "I'm fweaking out because of people. It feels bad in my head and tummy." We have found that although we can bring distractions and remember our tools, Little Bug still needs to be distanced from the events. Although he wants to be alone, he doesn't mean alone. What he means is that he wants you in the room, but not to talk to him. He needs the comfort of you being there without any more sensory input.

We are thankful. We are thankful that he now can identify when he is having a hard time. We are thankful that he can tell us what is challenging for him. We are thankful that we can look at this and help him.

Lastly, we are thankful that we can make different decisions for the next year; that our family will understand and support us.

Comparisons

2011-11-18T14:43:00.003-08:00

Consciously or unconsciously, we make them every day; in fact, they are a big part of how we learn and categorize information. When it comes to children and childhood, life is full of them- height/ weight, milestones, and “baby tricks” are some of the most common.

With Little Bug, we never had a problem with meeting the height/weight or milestones until he was 2. Before 2, everything that was measurable was on track. All those little items that can’t be measured- crying, contentment, independence- were not what they seemed like they should be. Little Bug was often inconsolable for hours and days (yes, I do mean that literally) at a time before he was 1. Once he was mobile, he was incredibly independent seeking out attention only for basic needs.

As new parents, Nick and I didn’t realize how different things were for us and yet I remember a lasting sense of hyper vigilance- SOMETHING WAS WRONG. That ran through my head all the time and yet it was so easy to dismiss. Looking back is incredibly painful and the signs of Autism were there from we would argue day 1. The crying probably had to do with sensory input. Clothing and blankets were a major cause as Little Bug was most happy in just a diaper in the summer. Sounds and light were another. Silence was and is a major no-no in our house. There is constant noise wherever Little Bug goes- whether created through stimming or provided by TV or music. When Little Bug was a baby, there constantly had to be something on. When he cried, the louder the sound we used to comfort him the better. He loved it if you made an shushing sound. I remember walking with him in my arms and shushing until my throat felt raw and I thought my arms would fall off. Some of our happiest times were listening to John Lennon blare from the stereo as Little Bug drifted to sleep.

These comparisons used to be painful for us. At times, they still are. A dear friend of ours has a wonderful little boy who is about 1. It is amazing how content and quite this baby is. How easy it is to get him to sleep. How no alarms seem to go off with him.

The comparisons we are able to make now are wonderful ones as they are self-comparisons. We can look at Little Bug and see him grow. Now when we are in public and he sees another child, he rushes over to say hi and ask them to be his friend. He used to not even notice that the child was there. He now loves math, books, dinosaurs and Chuggington- expanding his world from the land of Thomas and sharks that it was. He looks at us- really looks at us. He reaches out for us to join him to play, to read, to love.

These are the best comparisons.

1000 words (or more)

2011-11-15T11:48:00.000-08:00

A highly condensed 18 months

2011-11-15T11:47:00.000-08:00

Get your coffee, scoot your chair in, and hold on tight. I am about to throw 18 months at you.

April to June of 2010. The bullying child in Little Bug's class finally needed to be moved to a different class with more support. Unfortunately, he just wasn't able to get the help he needed. Little Bug potty trained. That reads wrong as it implies that we had any sort of influence over the process. One day Little Bug simply decided that he had to wear Diego underwear. That was it. This applies only to day time- night time training has not happened yet. It will happen when it does (I have become a lot more accepting about these things in the past 18 months). Nick quit his job to stay at home with Little Bug- partly for money reasons, mostly for relationship reasons. Nick and I realized that we needed to either change our way of doing things or not be together anymore.

July 2010. We took our first family vacation. We went to Oregon and traveled the coast. While we focused on mainly marine animal related attractions (as that is what Lennon was into), Nick and I were able to begin to really appreciate Little Bug's interest. Nick and I also began really working on our relationship.

August 2010. Kismet arrived. Kismet is Little Bug's companion dog. We found Kismet at the pound. She was a 7 month old Australian shepherd golden retriever mix- 100% adorable. Immediately we knew that she was fit for the job. During our "interview" with her at the pound, she kept Little Bug away from the exits, stayed with him through all of his flapping, and he even allowed her to be next to him when he had a meltdown at the pound. This is a huge commitment- not just cost- but training and time. Kismet has since been trained how to locate Little Bug, to walk on a waist leash with him, and also general public manners. While she needs some polishing, she is truly shaping up to be the gift we needed for him.

September to December 2010. Little Bug started his second year of preschool. While he had an IEP and was listed as one of the students who needed support, he was used as a peer model for the other special needs children in his class. You heard me- a peer model. We were so excited to see his progress.

January 2011. Nick and I decided to get married. In a really quiet way without sharing immediately with other people. It was nice to have something that was ours again. To have this delightful secret that we could talk about and share.

February through May 2011. This time flew by. We planned our wedding and were able to include Little Bug at times. Nick and I began to develop our own passions- his for all things domestic (especially cooking) and mine for a new kind of work. Suddenly, the world began to be made up of equal parts of Little Bug and everything else.

June 4 2011- Nick and I were married. We followed this up by taking a trip by ourselves. Yes, you read that right. Our grandparents watched Little Bug for almost a week while Nick and I returned to Seaside OR. Although it is a small touristy town, it was the perfect place for our honeymoon. It was the place where Nick and I decided that yes, we were going to make it. Yes, we were going to change. Yes, we were going to accept our lives.

July 2011- Little Bug turned 5. He had his first sleep over. It was insane. They stayed up until midnight laughing and talking. I remember sitting and listening in on them. Who knew that this would happen?

August 2011. We prepared for the first day of kindergarten. That's right- kindergarten! Little Bug is in a K1 Autism class. 8 students with Autism are picked from the school district for this class. The remaining 12 children in the class are typically developing.

September 2011. Little Bug started kindergarten. Nick and I cried and beamed. Mostly beamed.

October 2011. We made an offer on our first home. It got accepted! We are hoping to close by the end of this month.

An apology and an explanation

2011-11-15T11:04:00.000-08:00

Well, we're back. we have been gone for over a year and half. First, I want to apologize for literally falling off the face of the planet. To be truthful, as much as I wanted to think that we had worked through the shock of Little Bug's Autism diagnosis and we doing alright, we weren't.

Nick and I went through a very dark patch last April- almost to the point of separating. We needed to focus on us and on our family. It felt like Autism and Little Bug had become this all consuming thing where we literally couldn't be anything but parents of a special needs child. It was daunting.

We needed to learn balance. We were at a point where every conversation was about this. We never had time alone. We never followed through with any of our interests. Everything was Little Bug. We needed to learn how to prioritize. We needed to learn how to truly accept- ourselves, our imperfections, our weaknesses, and our successes.

Now, having taken the long break that we needed, I am back and ready to blog. It has been a whirlwind 18 months. I can't wait to share them with you.

This is wonderful!

2010-04-21T07:19:00.000-07:00

Okay, now I’m pissed.

2010-04-06T05:53:00.001-07:00

Little Bug came into the living room last Tuesday, looked at Nick and I and said, “I will kill you.”

Stunned, we stared at him and then each other. This isn’t anything we would ever say to him. When we asked who said this, he told us that his friend, M did. For those of you who aren’t familiar, M is the kid that was giving Little Bug a hard time by telling him that he is “Stupid, weird, and can’t be friends.”

Little Bug then told us that this same child pulls on the back of his shirt to choke him and knocks him down by pulling on his arm or kicking his legs. The straw that broke the camel’s back is the fit that Little Bug pitched on Sunday night. He yelled about not wanting to go to school- without a reason. When I got him to calm down, he said, “No school… M..N…M… are bad. They hurt my feelings… They choke me.” That’s a pretty damn clear picture of what is going on, wouldn’t you say?

We have tried to tell Little Bug to tell the teacher, but he doesn’t get linear conversation really. You can be talking to him about how we need to go to the doctors and what’s going to happen and he pipes up with something about sharks. Meanwhile you can be talking about sharks and he will tell you about something that happened four months ago. It is like he doesn’t understand the flow of time or conversation. At times, I wonder if everything is part of just the same long day and for him there is no way of differentiating.

He also doesn’t answer questions well. In order to elicit the information you want, you have to play 20 questions and often times still don’t get it. He has a hard time giving basic information- who his parents are (two dads), where you live (the blue house),- and more complicated information like what he did at school or what happened at home often times doesn’t come out. It seems like an associated thing has to happen- maybe he sees something that is similar, for example a train like the ones at school prompted stories about school yesterday.

Anyway, we contacted the teacher. I can’t tell you how disappointed we were. I know that if I received information from parents telling me that their kid feels that he is being choked and told that someone would kill him, I would call that parent and schedule a time to meet with them and include the principal. We instead got a letter offering us to come to her lunch hour to discuss it with her.

Nick and I feel like this isn’t taken seriously. Yes, we get that they are 3 to 4. Yes, we get that the children in the class are disabled. What I don’t understand is how no one sees a kid choke my kid. What I don’t understand is how my son can come home with bruises on his neck that no one can explain- oh yes, we have pictures. He had bruises around the front and back of his neck yesterday and yet the note from the school said that he played trains and had no altercations with anyone. Really? So, where did the bruises come from? It’s pretty bad when you check your kid out before sending them to school and check again on the way home.

What pisses me off the most is what this little kid has done. Little Bug was so excited about going to school. He talked about “my kids” and “my friends” everyday. He talked about his teachers. He would beg to go to school on Sunday because he wanted to play with his friends. Not anymore. This excitement, passion, and fun have been stolen. In their place, fear and anxiety have been left. Yes, I understand that they are three. I also understand that this is bullshit. This is bullying- regardless of age and disability. This cannot be allowed.

Stomach update

2010-04-06T05:52:00.001-07:00

Last Monday, we took Little Bug to a GI doctor to follow up on the wizard’s suspicion that he wasn’t actually emptying his bowels when going to the bathroom. He took an X-ray (which took two people to hold Little Bug down for) and confirm that his entire large intestine was filled with crap. He gave us instructions to have Little Bug drink 3 hours of magnesium citrate mixed with soda or juice twice a day.

If you don’t know, magnesium citrate is a saline based laxative that comes in lemon lime flavor. It is beyond disgusting. Little Bug did a great job drinking the first one; however the second dose took three hours to get into him. Unfortunately, none of this worked. We then had to try another laxative the next day- which worked.

Little Bug seem to take it in stride. He was pretty stoked about getting to eat as many popsicles as he could and drinking all the soda he could get his tiny hands on. He is slightly suspicious of us. Prior to drinking anything we give him, he wants us to try it. He knows that we the laxatives in his drinks to get him to take it and also knows that we won’t drink them if they have his medicine in them. This kid is too smart sometimes.

The doctor didn’t give us any real idea of how we can prevent this- other than daily laxatives. While he wants Little Bug to sit on the toilet three times a day, he did say that it could take anywhere from 6 to 12 months in order for the large intestine to shrink back to the normal size and potty training in that time may not go well as there is a lack of body awareness there due to the size of the large intestine.

Anything you want?

2010-04-02T08:42:00.001-07:00

Little Bug has a new game. This is a wonderful game based entirely on pretend play. Its simply called “Anything you want?”

Little Bug will stand at the edge of our kitchen next to our fridge- where the linoleum ends and carpet begins. He stands and asks, “Anything you want?”

After pausing to think, I order, “I want a coffee please.”

“Anything you want to eat?”

“No thank you.”

“You want a salad and fridees. Give me 2…2…4…4…5 please.” (Those are his outrageous prices.)

He takes the money and puts it in his drawer- the letter ‘M’ on the fridge. He then runs over to the kitchen table and cooks. He pretends to chop lettuce and tomatoes. Then he shreds cheese and begin to fry the fridees. Finally, he makes my coffee.

Carefully, he makes three separate trips back to me to give me my food. Finally, he looks me in the eye and says, “Thanks!”

He runs behind me and pushes me into the kitchen, prompting, “Anything you want?” I know now that it is my turn to take his order.

So far, he will only play this game with me. He won’t let other people watch, so we are working on gradually getting him to let Nick watch and then play. Hopefully, we can then generalize this pretend play to other types of pretend play. He has begun to make up pretend stories about his trains and sharks; however no one else can participate in them.

45 minutes

2010-04-01T06:53:00.001-07:00

That is how long it takes Little Bug to get his pajamas on by himself. With the right choices, these can be the best 45 minutes of our day. We could rush and do it for him. We could grow impatient, telling him how it isn't buttoned right and how we need to go to bed. It could take 2 minutes.

We like that it takes 45 minutes. He grabs his pants and struggles to pull them- ensuring that they aren’t twisted and no tags are contained- easily 5 minutes. He has to situate his shirt on the floor so that it is in front of him and upside down- the head is by his feet (give about 3 minutes for this). He then puts his hands in the sleeves and flips the shirt over his head and onto his back. Allow 3 to 5 minutes for celebration.

Now the tricky part- buttons! The shirt has four buttons and each takes about 5 minutes. He must do them himself- he doesn’t want our help, he wants our attention. We patiently watch him do struggle to do the buttons. He talks to himself and chews his lip as he gets frustrated. Right before he melts down, he gets it.

Finally, success. We jump and celebrate for 5 minutes… then we go to bed. These are wonderful moments.

This made my morning

2010-03-25T06:03:00.001-07:00

I found this on graphjam.com made by someone who happens to have both Asperger's and a sense of humor. It made my morning to see someone who was able to talk about ASD and laugh. I hope Little Bug can do this.

Change is always there.

2010-03-24T06:10:00.000-07:00

Last Friday, we had to find a new home for our dog, Frank. Little Bug’s melt downs have become too much for Frank and the dog has gotten more aggressive. Little Bug is heartbroken. We are now at day 11 since Frank and things seem like they are finally calming down.

For a while, we weren’t sure what we were going to do. All the behaviors that we are working on getting Little Bug to stop doing- lining things up, repetitive phrases, and self injuring- were in full force. Now he is at the acting out stage of things. He has been a holy terror and once he is in time out, he cries about Frank.

Unfortunately, there is always change. Soon, Nick will no longer be working. My schedule will be changing. School will be over. For good or bad, these changes will happen. Hopefully, these will be a little easier for him.

Personally, hectic

2010-03-24T06:09:00.001-07:00

Sorry for the lack of posts. Things have been very hectic and stressful for our family- outside from Autism. I have been having some neurological symptoms that we are trying to figure out.

Safety Issues

2010-03-11T05:45:00.000-08:00

One of the scariest things that we experience with Little Bug is a lack of understanding about safety issues. For example, if you blink, he will turn the hot water all the way up in the bathtub and sit under the faucet- never mind the fact that the water is hot enough to cause burns. Cooking is starting to take two people because he doesn’t seem to understand that the stove and oven are hot. He will try to put his hand on the burner because it is red or put is on the front of the oven because “It’s so warm.” Unfortunately, by so warm, it is actually 400 degrees.

He also has begun to actively try to get out of the house. Mind you, we have three locks and a reverse hinge, but he has figured them out. We are now alarming the doors because he can and will get out. At his parent teacher conference yesterday, we found out that when the other students are getting off the bus, he will attempt to run- to the street, to the school, anywhere. Just running.

We don’t know how to get through to him. I can’t convey how agonizing and heart wrenching this is. To know that despite your best attempts, your child doesn’t understand safety boundaries and could be seriously injured or worse. Worse is something I shudder to imagine.

ASD update

2010-03-11T05:44:00.000-08:00

We took Little Bug for his annual review with the Wizard and as per usual, it wasn’t what we expected. The last time we went to see the wizard, all we got was a lecture about our sleeping arrangements (co-sleeping) and not to even consider potty training him until he was 4 or 5.

This time, the wizard told us that we were doing the right thing with the co-sleeping. He also felt that we were right to allow Little Bug to potty train in his own way, however was concerned about Little Bug’s bowel movements.

The wizard seemed less positive on things. Last time, the wizard gave us hope that things were going well and we were doing right. This time, the wizard gave us concerns, worries, and fear.

Going to see the wizard isn’t ever what you expect it to be or what others tell you it will be. Seeing our wizard is usually a mix between frustration and humor. The wizard wanted to evaluate Little Bug’s cognitive skills as we had told him that Little Bug could count beyond 20, count a group of objects without counting aloud, knew his colors, alphabet, and could spell his name.

Of course, none of these things happened with the wizard. When asked to name colors, he named shapes. When asked to count, he refused. When asked how to spell his name, he said, “I no know- too hard!”

Nick and I could only laugh. Once again, we look like pathological liars. We joke that Little Bug is hell bent on having therapy until he is 30. The SLP at his school and everyone who knows Little Bug has seen his language grow to a consistent 5 words (at least) per sentence and now includes self correcting. When he goes to speech, he will only give one word answers- even about his beloved sharks.

Potty Training Update

2010-03-11T05:42:00.000-08:00

It looks like we are going to be changing diapers for a considerable time longer. We took Little Bug to his ASD specialist (a separate update in itself) and The Wizard is concerned that the reason Little Bug isn’t acknowledging that he has gone poop or has to go, is because he is blocked up with poop. There is a special name for this condition, but basically it means the child goes back and forth from constipation to diarrhea, however they are never fully emptying their bowels.
Nick and I was obviously overwhelmed when the doctor began to talk about the surgery that could fix this problem and what tests- x-rays and ultra sounds- would be needed. We were also concerned when the wizard told us that a cause of this could be lack of nutrition. We could only shake our heads along with the wizard when he said that unfortunately a nutritionist would be involved.

Nothing personal against nutritionist, however when you have a child with restrictive requirements about food, nutrition is the tip of the ice berg. Simply eating some days are a battlefield. While Little Bug has gotten more flexible in many ways, food isn’t one of them. He now will only eat plain chicken- there can’t be salt, pepper, or discoloration or grill lines from cooking. If there is any of the above, he will take the time to pick of the marks with grill lines or will rub the chicken on his pants to get the seasoning off. He refuses milk at this point- including chocolate milk. He only wants juice or water. He has begun to become a carb junky- whole wheat, raw pasta, and handfuls of just plain flour are the items he seeks. We have to lock up our flour as he has been sneaking it. Behaviors like these don’t leave much room for nutrition. A good eating day at our house is when he doesn’t find a way to get to the flour while Nick or I are going to the bathroom and he has eaten something other than chicken. At this point, getting 1 serving of fruits or vegetables (that isn’t plain lettuce) is a miracle

“I mean it”, says Little Bug

2010-02-23T06:24:00.001-08:00

Yesterday we went to Ikea and I had to change Little Bug’s diaper. On the way to the bathrooms, there is a play land. At this play land, there are no parents allowed and no diapers. Little Bug kicks up dust every time we go as he desperately wants to play at the play land. I took him to the sign and explained that you have to be all done diapers to play.

He looked at me and said, “I am all done diapers.”

I explained that if he was ready, we can try again when we get to home. We can put on his “pants” (underwear) and he can work on telling us that he needs to go to the potty.

He crossed his arms and said, “No- I am all done diapers.”

When we got home, he looked at the picture of the play land in the catalog. He took off his diaper and put on training pants.

Needless to say, we are going to be doing a ton of laundry- we couldn’t be happier and prouder to do it. He is working so hard. He often pees in his pants and then we walk him to the potty and have him sit on it while we wipe him up and get fresh pants. Nine times out of ten, he pees on the potty as well.

School Update

2010-02-23T06:23:00.000-08:00

Well, we met with Little Bug’s teacher. I was surprised at the conference that she defended the particular peer that Little Bug is reporting problems with. She did agree that this child is assertive and does cause a lot of fights. When we questioned why this child was a peer model, she explained that the child has excellent language skills and was useful in a language preschool. The child does struggle with social skills and this is something that they have explained to the child’s parents and are working on at school.

To be honest, Nick and I were disappointed because we felt like our concerns were a bit minimized. The teacher said not to worry so much because socialization is lifelong thing. She also said that it is probably a good thing that Little Bug acts up only at home- at least he is behaved at school.

Nick and I take his difficult behaviors- crying, whining, screaming, biting, kicking, and arguing- as communication. He is obviously having a hard time with something on Tuesday, Wednesday, and Thursdays and this is his way of communicating the difficulties.

We received a call on Friday. The reason the teacher was defensive is that Little Bug is blaming the wrong child. The teacher didn’t teach class and only observed on Thursday. What she found, was that Little Bug doesn’t like the child that he blames for the bullying and they constantly fight- however, they equally start it and finish it. The child who is actually bullying Little Bug- calling him stupid and dumb, as well as physically hurting him- is a child Little Bug calls his friend and wants to come to our house.

Now, instead of one set of problems we have three:
1. Decreasing the aggressive instances with the child he doesn’t like
2. Working on defensive phrases and teaching him to get help when he is bullied
3. Our child idolizes the child who calls him stupid and dumb. The kid who tells him because he is stupid and dumb, they can't be friends.

What do you do when your child loves their bully? When they have only nice things to say about the bully.

Not sure what to call this

2010-02-12T05:46:00.000-08:00

Little Bug goes to a special education program for 3 to 4 year olds that includes peer models. The peer models are usually chosen by the teacher based on their ability to fit into the program and the classroom dynamics. In Little Bug’s class, there is a peer model causing some trouble. This boy is incredibly assertive and Little Bug can’t let things go when someone does something to upset him. They have been in two fights- actual rolling across the playground and class room fights. Little Bug has come home with marks on him from these fights. The teacher insists that Little Bug isn’t starting this and is defending himself.

We are trying to work on this with Little Bug. We talk about how people can have accidents and how we should respond. We also talk about how we can use words in order to get help. Recently, Little Bug has been in quite a mood whenever he gets home from school. With him, it is incredibly difficult to get information in a linear fashion. He still can’t consistently answer who, what, and where questions. Often times, he comes home to tell us that he hurt someone at school. We have called the school and they have confirmed that while there have been altercations; Little Bug is merely defending himself.

Yesterday, we finally got some information from him. He looked at Nick and said, “You aren’t my friend- you weird!” A light bulb went off. After asking him why he said that, he told us that a certain peer model calls him weird and that Little Bug isn’t his friend because he is weird. Apparently, this peer model also says this to a couple of non verbal children in Little Bug’s class. Little Bug talked about how sad and mad this made him. How when this peer model says this, he hits him. (Thank goodness for honesty so we can address this). Little Bug says he doesn’t like school when this peer model is there.

On one side, this seems pretty normal for kids. Kids learn from these altercations and children this age have horrible impulse control. At the same time, this sounds targeted to the just a few children in Little Bug’s class. I am unsure whether I am over reacting and how far to stick my nose in. What kills me is that he doesn’t want to go to school anymore of Wednesday and Thursday. He *loves* school- to the point of being hysterical on Sunday morning because it isn’t Monday yet. This child has taken that away from him and made him feel anxious and unwanted repeatedly. What is the right way to handle this?

Lennon John

2010-02-09T05:25:00.000-08:00

Little Bug’s name comes from one of my personal heroes- John Lennon. The Beatles and John Lennon specifically have also resonated with me. When I was little, the happy memories I have center around their music- dancing in the kitchen with my mom or standing on my dad’s feet to dance. Theirs were the songs of my childhood. I identify with John Lennon. I understand his family life in a deeply personal way. I love his message of hope and challenging the status quo.

From the time Little Bug was a tiny bug, the Beatles and their solo projects have been a good send. When he wouldn’t sleep, we would turn up Blackbird loud enough to wake the dead and Little Bug would be still and listen- not sleep, but listen. When Little Bug has a hard time with transitions and new places, I sing “Blackbird” and “All You Need is Love” to him. He has discovered “Here comes the Sun”, “Yellow Submarine”, and “Octopus’s Garden”.

In the course of rearranging some furniture, I found a print of John Lennon in the house. I sat with Little Bug and explained that this is where he got his name from. Little Bug took the picture and said, “That’s Lennon John! He mucusinging blackbird!”

Little Bug decided that the print needed to be hung in his room. I grabbed the tape and went to his room to find his eyeballing for a special place for Lennon John. Finally, Little Bug decided above the head of his bed.

I found him in his room yesterday singing “Here Comes the Sun”, laying on his bed and looking at the picture. When I asked him what he was doing, he said, “just watching. I like Lennon John.” All I could do was smile and say that I do too.

Are you sure you want to cast the first stone?

2010-02-09T05:24:00.000-08:00

The responses to the newpaper on the article I posted floored me. I can’t begin to understand the judgment of the mother. It was suggested that her child wasn’t really disabled. People cried foul that any 4 year old would be on the bus at all- let alone a disabled one. One person even suggested that the mother sent the daughter to school so that she could rest.

My stance on this is very clear- no child should be forgotten. This exact situation is something I fear for Little Bug. When we first signed him up for school, he was slated to go on a bus that would take him to the school for emotionally disabled 18 to 21 year olds. When we called, there wasn’t an apology- just it’s a good thing you called, because we would have sent him to Park Ave.

The judgment of that mother and child infuriated me. Maybe people outside the special education system don’t understand that here they push busing of all kids. Little Bug lives 6 blocks away from his school and rides the bus. We had several meetings about it as Nick and I were concerned with his safety and the ability of the driver to care for him. The school felt that he should ride the bus to encourage independence and to assimilate with his peers.

I was surprised how off track people got with this story. Questioning whether apraxia is really a disability or not and the motives of the mother. Who gives a shit? What matters is that a child was left of the bus for hours. I don’t care whether that child was disabled or not and why they were on the bus- it shouldn’t have happened. This would be terrifying for any child and parent. This would make any parent demand the bus driver’s job and then some.

I can't even imagine

2010-02-05T09:45:00.000-08:00

Girl, 4 and developmentally disabled, left on school bus for hours

By SHOMARI STONE

KOMO-TV
BAINBRIDGE ISLAND -- A mother is outraged after her developmentally-challenged daughter was left on a school bus for nearly three hours.

"There's anger. There's outrage. There's hurt, just sadness," said the mother, Sarah Rowe.
Rowe put her 4-year-old daughter, Ava Rowe, on a small bus around 11:15 a.m. on Wednesday. The bus driver dropped off two kids at Ordway Elementary School, returned to the bus barn,and forgot all about Ava Rowe, even though the driver was only responsible for three passengers.

The forgotten girl in a car seat on the bus, alone for three hours. The shy young girl has speech apraxia, a neurological disorder that hinders her ability to speak.
When the bus dropped Ava Rowe back at home, her mother noticed something was wrong. Her daughter looked sad.
"She (my daughter) said, 'She (the driver) left. She said, 'I waiting, and waiting, and waiting.' And she told me again and again. She cried, and cried, and cried," Sarah Rowe said. "Eyes all puffy and really upset. With her speech apraxia, she really couldn't verbalize what was going on."
Officials from the Bainbridge Island School District called about an hour later and admitted the driver had made a mistake by failing to follow procedure.
Superintendent Janet Chapel said the bus driver didn't walk through the bus as instructed, but she doesn't know why.
"I don't know if there's an explanation. It certainly did not happen," she said.

And it appears the driver wasn't the only one who didn't follow procedure. Ava Rowe's teacher did not notice she was absent, even though teachers are instructed to check attendance.
"That procedure was not followed," said Sarah Rowe.
Sarah Rowe demands to know why the bus driver still has a job. The driver has been placed on paid administrative leave, but the mother believes she should be fired.
"Absolutely. Now. This second," she said.

District officials expect to wrap up its own investigation into the matter over the next few days.

He can do it!

2010-01-26T05:27:00.001-08:00

The newest thing for Little Bug to say is “I can’t do it- too hard!” He now says this at least once a day about any number of things. Personally, this is a pet peeve of mine. Anyone who knows me, knows that I am determined- to the point of bullheadness- and value independence. While we don’t know how independent Little Bug may turn out to be, we want to ensure that he has every chance to be independent.

Little Bug has begun trying to undress himself. At first, shirts were being shimmied down the body in some elaborate dance; however he has finally figured it out. He looked at us and yelled, “I can do it!”

Yes he can- and we always will push for that answer.

Teaching someone to be a good friend

2010-01-26T05:26:00.001-08:00

One of the things we struggle with the most is the lack of empathy. Little Bug has an incredibly hard time understanding that other people feel things completely different from what you do- you know, mind blindness.

A new child joined the school last month and has cried every day since- on the way there, during all portions of preschool, and on the way home. Needless to say, this is a bit much for Little Bug. Every time he gets off the bus, he tells us about the little boy, “E was fying fying fying. I said No fying- be quiet!”

We have told him how to be a good friend- you could say that we practice this. Nick will pretend to cry and I tell Little Bug things he could say to make Nick feel better. We talk about how Little Bug cries sometimes and the things we tell him. No change. Every day, he comes home with stories about how he told E to stop crying.

I don’t know how else to teach this- Nick and I are empathetic and caring- for each other, him, our family, and friends. Little Bug sees this modeled all the time. However, it isn’t picked up. Is there another way to teach this?

A Dream is Born

2010-01-19T05:38:00.000-08:00

Sometimes, dreams are wonderfully born from a pivotal occurrence in someone’s life. Other times, they grow from steady determination and immersion-with a sprinkle of kismet. For Little Bug, I believe it is that later.

We all know that he has been obsessed with sharks; however he has now added whales, dolphins, turtles, and fishes to his repertoire of marine life. He has basically given up regular kid shows, favoring Discovery and National Geographic specials.

Yesterday, we took him to the aquarium again. It was an amazing trip and the realization of a dream. He watched the sharks and fishes in the tank and began to explain why some were fish and some were sharks. He pointed at a big Sturgeon and explained that it couldn’t be a shark because it only had one dorsal fin.

His light bulb moment came from the Seattle waterfronts new problem- tons and tons of jellyfish that shouldn’t be here and they can’t figure out how to get rid of. Little Bug and I were waiting for Nick on a pier and looking at the water. Suddenly, a bit of pink could be spotted. He yelled, “Jellyfish!” and began to jump up and down.

I watched and waited to see what it was. I was a little nervous that it was trash and he would be disappointed. More and more pink began to become visible along with some white and orange. Finally, a huge jellyfish appeared. Right behind it came a flock of tiny opaque jellies. This was Little Bug’s first experience with sea life outside of an aquarium.

He looked at me and said, “I’ma learn bout sharks.”

“Do you mean watching your movies and reading your books?”

“No! Ima swim with sharks- tiger sharks….whale sharks… bull sharks… jelly fishes…. Squid”

“Do you mean a biologist?”

“Yep. I’ma beelologist!”

Dreams are fragile, fragile things. This is something we weren’t sure we would ever get to experience with Little Bug. Nick and I will move mountains and go to hell and back to make sure he has every opportunity to become a beelologist.

Talk about Pretend Play!

2010-01-19T05:36:00.001-08:00

Little Bug has been on a Toy Story kick recently. One of the parts that he finds the most amusing is when Buzz is made to wear and apron and a hat and has a tea party. Recently, he decided that this would be a fun thing to do with his Sharks- Blue and Bull.

He set up his Lightening McQueen table and chairs- making sure that the chairs we opposite so that Blue and Bull could sit facing each other. He gathered his plastic dishes from the kitchen so that he could serve the food. The food he cooked was his cut up veggie set that had been lovingly cooked into a soup in a colander.

He gathered his guests around that table and passed out food. They took turns telling him how tasty the food was and asking how he was doing.

Nick and I stood and watched with our jaws hanging open. He only other version of pretend play is driving cars and trains around or making his sharks and fish swim. This was so far beyond what we thought he could do.

He wasn’t done.

After the sharks were done eating, they had to go home. He disabled the table and put the soup away and then put the chairs in a line. At the front of the line, he put the stairs to his bed. “A bus!” The sharks rode the bus home- all the time telling Little Bug that they had fun and would see him soon.

Growing Pains

2010-01-06T05:29:00.001-08:00

Little Bug keeps advancing in sudden and surprising ways. Some are mundane and others are extraordinary. I wanted to share with you all the exciting things that have happened on our vacation. (By the way, sorry for the delay in posts- Christmas time is crazy personally and professionally.)

• A big boy car seat- yep you read that right. The booster seat kind that he only buckles into. In general, this is the more worrisome to Nick and I as he can get out of it and likes to talk about the “red button” (the seat belt release) every time we’re in the car. We are looking for a cover for it so that he doesn’t escape.

• Pretend play- as in self directed lengthy pretend play. He will set up his trains and have them pretend to go places- the garden, school, and Target. They talk to each other, fight, and play. He describes their emotions- cross, happy, excited, and sad. He will play independently for upwards of half an hour in his imaginary world.

• Big boy bed. He has chosen to sleep in it by himself. While he still makes trips back to our bed, he is pretty good about going to sleep in it and staying there. I am sure the reward goal of a Thomas Blanket has helped him stay motivated.

• A normal childhood fear. Rather than a sensory based fear that is mind boggling, he has become afraid of the dark. While this may seem strange to rejoice in, it is nice to have a straight forward problem that tons of kids (and some adults too) deal with.

• Choosing the play place over his parents. At a local grocery store, they have a play place where the children can be watched while the parents grocery shop. The one caveat is that parents aren’t welcome. He has always wanted to go, but never without us. Finally, one day, he decided that he could do it. He stayed in there for 45 minutes and Nick and I waited for the page of doom. They take your information and page you should your child become out of hand or stink. We didn’t receive a page.

• Last but not least, peeing standing up. He has decided that this is the way to do it. He will not sit on the potty ring anymore- for babies is what he says. Granted, he hasn’t successfully peed this way in the bathroom. He has however peed this way in the bedroom and the kitchen. He also has provided us with a ton of laughter. When he first tried to do it, he stood in front of the toilet and frowned. He looked at me and said, “It’s not working!” Trying to keep a straight face, I explained that he didn’t have to pee. He felt that I was incorrect and took to tapping it- like you would to see if a microphone works- and yelled at it, “WORK! WORK!” I haven’t laughed so hard in my whole life.

This vacation was amazing because it was the first time that he was able to understand the holiday. To me, Christmas is about kids. I know that a lot of people celebrate it for religious reasons, but I personally celebrate it for family and most especially the kids.

Little Bug had a blast. He would open each present and say something nice about it and then say thank you to whomever gave it to him. He wasn’t the greedy hoarding present type, the truly excited and wanting to unwrap everyone’s for them type. Our family had a great time.

The hardest thing about the growing process is the growing pains for the parents. Nick and I found ourselves in tears of happiness and sadness. When things are changing, you notice the impact that the little person has had on your life. We are overjoyed to see this development and truly grateful. We are also a little sad…

Santa Claus

2009-12-10T06:09:00.004-08:00

We took Little Bug on the local Santa Train, thinking that this would be a better way for him to meet Santa. While he didn’t cry or yell, he did banish Santa to the other side of the train. Santa was permitted to sit next to him briefly for a picture- a very tense picture in which Little Bug appears to be attempting to will Santa to move with his glare of doom.

That night, Little Bug decided he wanted to write Santa a note. He first had to scour the magazines in the house for the picture of the toy he wanted. Then he taped it to a piece of paper and wrote his name at the bottom. Yep, wrote his name. Not necessarily in a linear fashion, but all 6 letters are there clear as day.

Next, he instructed me to write the letter. I started with Dear Santa-, however Little Bug felt that we should address him by his first and last name. So, we wrote Dear Santa Claus. Next, Little Bug instructed me to write “I want Hiro and Sodor Steamworks.” This was to be followed by “PSTUV” and then signed by Daddy Nick and Daddy Blake. Little Bug then took over the letter and drew a picture. When asked what the picture and PSTUV where for, he replied, “A supise for my daddies!”

Spelling

2009-12-10T06:09:00.002-08:00

Little Bug has become fascinated with spelling recently. He stands at the fridge for hours ordering and reordering his letters. Not stimming, but trying to make a word. He will yell out the letters and I will tell him if it is or isn’t a word. So far, he has spelled Up, Dog, and Nice on the fridge.

Orally, he can now spell Up, Dog, and his name from memory. He has begun to beg Nick and I how to spell our names and then works through the finger spelling of them over and over. If he gets it wrong, he asks us to spell our names and then begins to try some more.

School Conference

2009-12-10T06:09:00.000-08:00

Well, we had another parent teacher conference last week and it went amazingly well. His teacher said that she is amazed at his progress- he is now able to share with another child without prompting from an adult for 10 minutes. She didn’t expect him to be as comfortable as he is until his second year in the program.

She impressed us by going to an Autism conference at our local children’s hospital. We spent time talking about the spectrum and the differences between each kind of Autism and how basically every person with Autism is unique. We also discussed the possible changes that the DSM V might contain and how that would affect diagnoses and as well as school eligibility.

Finally, she told Nick and I a few things that we didn’t expect to hear. First, that Little Bug is the best behaved child in the class and she uses him as a peer model for all the other kids- including the peer models. She looks to him as a little leader in the class. She also stated that he is making progress on all his goals and well on his way to meeting some already. Nick and I thought it would take a lot longer than it has for him to make this progress. Finally, she said that except for the speech delay- his MLU is 2.2 and the typical range is 5 for his age group- she doesn’t feel that he qualifies for special education. She is glad that they are only evaluated every 3 years as she is afraid he would be denied next year and she wants to keep him in her class. We do too. He is flourishing there and learning a ton- letter recognition of the whole alphabet, counting to 39, and vital social skills.

It's holiday time again...

2009-12-01T06:29:00.000-08:00

And this year is going to be fun. Little Bug has decided that he believes in Santa. This is huge. He is willing to accept the reality of an idea. Don't get him wrong- he isn't going to sit with him or hug him, but he will write him a letter or talk to him. Whenever Little Bug sees his dream toy, he says, "I'ma talk to Santa.".

Last year, the Christmas tree had to be tied to the wall and we had to fight Little Bug away from the light. This year, he has embraced it. Literally. When we put the tree up, he walked over to it and put his arms around it. "I love you fee." He gave it a hug and a kiss. He decorated it with fervor- directing where all the ornaments should go and what colors can be next to each other. The bottom half of our tree is regemented- same shapes with same shapes and same colors with same colors.

Little Bug has also decided that messy crafts are okay. He is able to tolerate paint on his hands as well as glitter, flour, sugar, and dirt. He still has a hard time with sticky stuff, but we have been able to do a ton of crafts. He has made four different kinds of ornaments, felt presents, and a paper chain for Christmas.

Nick and I are so excited. Its like a brand new experience. Last year was a bit hellish at times- he couldn't tolerate the family events and we didn't get to see many of our friends. This year is turning out different. He did amazing at a small Thanksgiving- he only needed 3 breaks in 4 hours. He was able to play with J and E this weekend for about 5 hours and only needed about 6 breaks. What's more exciting is that this year, he understands and is excited. Last year, there wasn't any understanding or excitement.

First School Pic- no words necessary

2009-11-19T05:52:00.000-08:00

A short essay

2009-11-18T06:15:00.000-08:00

Recently our family was asked to submit a short write up about Little Bug's biggest accomplishment and how Early Intervention has helped him. I expected this to be easy- I would know what it was and get it done. It was incredibly difficult for many reasons.

The first I struggled with is that it is hard to make people see the amazing in the struggles and accomplishments our children have. For example, Little Bug took his shirt off for the first time ever last night. That's huge! He has to sequence the events in order to get it off. He had to use motor planning in order to ensure that his arms, torso, neckm and head all worked towards that common goal. To most people, it would be assumed that our children can do this. We know that isn't always so.

Secondly, it was hard to pick out his biggest. We had a hard time looking at all the work that he has done and picking one part. How do you pick out the most amazing change? I know that no matter what our situations are, our children are constantly moving forward.

Lastly, we really wanted to make sure that we gave credit. While Nick and I work hard to help Little Bug achieve his highest, we have had a lot of help.

I would like to share our essay with you.

“Woooo-wooo! Hi, Thomas!” Little Bug said. He drove Percy past the shed so that he could say hello to Thomas. He then drove Percy to the freight yard in order to pick up a mail car. “Let’s go get Thomas!”

He lined up his trains and then began to count, “One, two, three, four, five, six, seven, eight, nine, TEN!”

We used to count the words Little Bug had. Each one is a gift that is treasured. Each word is met with exultation. Each word is a foot hold on a mountain getting us one step closer to Lennon’s highest potential- whatever that may be.

Little Bug was diagnosed with Autism and severe speech delays in July of 2008. At that time, he had 10 word approximations- Da (dad), la (water), go, ca-ca (car), Yu (yes), bu (bus), bo (boat), no, pu (puppy), fish. He never played functionally; instead he spun wheels, lined things up, and rolled cars back and forth. He couldn’t tell us if he was hurt, scared, tired, or hungry. Every day was plagued by uncertainty for us.

We were recommended to contact EI by our Primary Care Physician. Through our FRC, we were connected with the Birth to Three Development Center School. Little Bug was assigned a play group, a one on one Therapist, as well as an Occupational Therapist. When he first started, he tried to bite the therapists and other children. He would hide from his FRC and his therapists when they came to the house. Out of an hour of therapy, up to half would be spent getting him to work up to them. It paid off.

With them, he flourished. Every week, they would challenge his repetitive behavior- moving cars out of line so that they would be driven. Stacking blocks were made into bridges. Trains were used to make deliveries rather than spinning wheels. They broke down playing into sequential steps and made it click for him.

They endlessly strove for personal contact between Lennon and everyone else. They taught us how to get him to look at us. They hid toys around the room so that he would look and point to request. Nick and I were challenged to make every interaction an opportunity to teach Little Bug a skill- saying hello when someone greets you, pointing to what you want, making a car pretend to drive, tolerating bathing and dressing, and a million other tasks that are assumed to be achieved but that we knew were not guaranteed.

We have lost count of words. Little Bug says so many that we can’t keep track. He plays- really plays with trains, cars, puzzles, and us. He says hello to his peers and is learning to share. Nick and I have learned to be the kind of parents Little Bug needs because of Birth to Three and our FRC. They have given Nick and I the tools to begin to do this independently. They have given us future resources for help.

His therapists and FRC will always be dear to our hearts. Their dedication, talent, and love for our family is amazing. They do things that people find impossible. They deal with families who are suffering and struggling. They deal with children who can be aggressive and have meltdowns that last for hours. They treasure rewards that other people would overlook- the joys of seeing a family succeed, messy hugs, and sticky kisses. We will always be grateful for what they have done for us.

Words

2009-11-10T07:52:00.000-08:00

Its is raining wonderful and glorious words at our house and I wanted to share some:

hullabaloo
delicious
wonderful
awesome
flamingo
beautiful
amazing
great
Correct use of I, you, me, etc.
his/her

His speech is blossoming. Sentences are running out of him faster than I can keep track. He now comes up to you and says, "I want to talk." He then will pick a random topic- snow, frocidols (crocodiles to you), the dog, the school bus, and talk about them.

He can now answer questions like- What do you do when it is cold? What is a bed for?

What makes you special?

2009-11-10T07:46:00.000-08:00

Little Bug, Nick and I have been having lots of conversations regarding boys and girls and moms and dads. It started last Wednesday when Little Bug looked at me at dinner and said, "MOMMY!"

I didn't get upset. I didn't get angry. I simply asked, "What do you mean?"

"...says you are a girl." Interesting. Apparently, someone has taken it upon themselves to discuss with Little Bug who really is a daddy and who isn't.

Now, I am not naive- I know that Little Bug and I will talk about this a lot- to the point of making me crazy. I know that he may hate me for a while when he gets older and his friends give him shit. I know that he will always know, above all else, Nick and I love him more than our own lives and that is what matters. I believe that he will accept it and be proud of having two daddies- even if one is a special daddy.

What I do mind is that someone took it upon themselves to get into this with my son. While he has told us who said this, they deny it. It's a tricky situation.

But I digress and want to get back to the really cool part of all this mess. As I said, we have been talking about daddies and mommies and parts etc. I explained to him that I was born a girl, but am a boy. Whether he understands that at 3, I don't know, but I want to be honest with him. Regardless, he seemed unphased and went back to calling me Daddy Blake.

Yesterday, he brought it up again. He began counting the number of boys and girls in our house. He stated, "4 boys- you, me, Fink, Nick. 1 girl- you."

I looked at him and asked, "Am I a special boy?" I asked this hoping that it would ease us back into the whole transgender thing.

Little Bug looked at me and beamed, "Yes! Me special too!"

"I know you are, bug. You will always be special and amazing to Daddy Nick and I. What makes me special?"

He looked at me and beamed again. "Because I love you."

I am happy to special that way above all others.

New Skills

2009-11-03T06:30:00.001-08:00

This has been an amazing week for our family. We have gotten to see some truly amazing things come from Little Bug. For example, we were at Hama and Bumpa’s and were able to show him how he does simple subtraction. I asked him how many pumpkins you would have if you had three pumpkins and took away 1 pumpkin. He didn’t even blink before saying, “2 punkins!”

Later, Bumpa and Little Bug were drawing on their chalkboard and Bumpa was trying to get him to spell his name. That didn’t take much work. Bumpa started with L and paused. Little Bug looked at him and said E…N…N…O…N. Hama and Bumpa were just amazed. So were Nick and I- we had no idea that he could do this.

His drawing skills are blooming as well. This week he has drawn the following- a jellyfish, a recognizable happy face- eyes (with pupils) nose, mouth, teeth, ears; and a correctly drawn pumpkin.

Finally, he impressed the hell out of his teacher and us yesterday. At the end of their day, the staff in his classroom goes around to each child and asks them what they did today. When his teacher asked Little Bug, he said, “I played outside with my friends- J, M, and L. It was fun and they make me happy.” First of all, those are the longest unprompted sentences that I can think of. But more importantly and impressively, he spoke about feelings and friends- something that he almost never does.

Want Potty Feet Pease!

2009-11-03T06:29:00.001-08:00

Little Bug had a huge break through this weekend- voluntarily putting on his Thomas the Tank Engine costume in order to go trick or treating. We tried asking him and that didn’t go well. Nick and I had already decided we weren’t going to make it an issue, because at that point, it would be for us and not him.

Well, it took 3 trick-or-treaters before he changed his mind. You could see his little brain turning it over again and again- ridiculous outfits and saying tick or feet gets me candy… I can do that. As soon as he broke this down, he grabbed his costume and but bolted out the door.

We had a great time doing this. He went up to the doors on his own free will. He knocked on the door and, at first said, “TICK OR FEET PEASE!” Gradually, he forgot that you should say trick or treat and began to say, “Want potty feet pease!” Some people wanted to know what the heck he was asking for while others just laughed hysterically and gave him huge handfuls of candy for being cute.

Nick and I had a great time. It was amazing to see him do this. We felt lucky because we were able to witness a huge milestone for our child. Something we weren’t sure would ever happen. Something that we gave up. We are so grateful for this. We are given opportunities to appreciate milestones and events that everyone assumes will always happen.

General Chaos

2009-10-28T07:57:00.000-07:00

This is my new nickname for Little Bug and how things have been recently. On Thursday, we had to take Little Bug to the Urgent Care because he had a fever and a horrible cough that started on Tuesday. Friday and Saturday were much worse for him- he started to not eat and say that it hurt to drink. Luckily, he is much better and able to go back to school.

Starting last Sunday, Little Bug has begun waking up at 4 or so every morning. Yesterday he woke up at 3:30. As he doesn’t take naps- of his own volition- we have tried having him go to bed earlier- which only results in waking up earlier.

The bright side of this chaos is that he has some wonderful emerging skills. He has learned two new games- “I am…” and “I see…” “I see” is the same as I Spy. “I am” involves picking an animal and either acting it out or telling some details about it. He has become very good at pretending through this game and has begun to do it independently. He will stand on the couch and flap his arms and say, “I am a bird!” He will hop on all fours and say, “I am a frog.”

He also demonstrated the concept of wanting- something besides food, water, etc. While this sounds like an annoying thing- the beginning of the I want monster even- it is cool to watch him understand that people have wants besides needs. He doesn’t say “I want (insert toy)” like most kids his age without seeing the toy or touching it. All three year olds who I know immediately begin asking for a toy when they see a commercial or activity in a show. Maybe Little Bug is delayed because we don’t have TV, but I doubt that. He has plenty of advertising aimed at him. Just look at the inserts they put in DVDs for children- stocked full of toys, books, games, etc.

He was watching the new Thomas movie, which now includes commercials for toys at the beginning, which I hate, but I digress. He began to flap and jump when he saw the Spin and Fix Thomas. Well, Little Bug wasn’t done with just wanting. He looked at me and said, “I want that toy. Santa bing it for me on Pissmas.” Not only has he demonstrated an understanding of want, but an understanding of a concept- like Christmas and Santa. I guess we all know what Santa is bringing him on Pissmas.

On Sunday, we carved pumpkins. He did a great job of touching the nasty, stringy gunk in the middle- I think my sensory issues with that showed more than his did. He loved getting to say whether the faces were happy faces or scary faces. That he was willing to allow us to carve the pumpkins at all was huge. Last year, when we attempted to carve pumpkins he lost it. He didn't want the pumpkins to change- they had to stay just the way they were.

On Monday, he asked to sit on the potty. We were excited because he fell off the wagon at home since he has started going to the bathroom on the potty at school. Well, he not only sat on the potty, but he pooped on the potty. While Nick and I were totally surprised, he seemed absolutely shocked. He stood up and pointed at the toilet,yelling, “POOOPPPP!!!”

All in all a chaotic and amazing week.

Pica Update

2009-10-21T05:59:00.000-07:00

We received the results of the blood work in the mail yesterday- CBC, iron, zinc, and lead levels. We are relieved to know that he doesn’t have lead poisoning. Unfortunately, this debunks our doctor’s hope that rather than being caused because of his developmental disability, it was caused by iron or zinc deficiency. He was hoping this because, in his experience, children who exhibit pica from those deficiencies usually no longer exhibit the behavior once the deficiencies are addressed with a customized supplement. At this point, we have to wait to for our doctor to be in office so that we can talk about appropriate interventions.

We wanted to share some basic information about pica. Pica is a pattern of eating non food items that must persist for longer than a month in order to qualify for a diagnosis. Commonly eaten non food items are:

Clay
Chalk
Soil
Paper
Soap
Glass

Additionally, it includes the persistent eating of things that could be considered food or food ingredients:

Ice
Salt
Flour
Raw Potato
Raw Rice
Raw Noodles
Raw Beans
(items in bold are items that Little Bug eats)

Complications that can arise from pica can include:

Lead poisoning
Bowel problems
Bowel obstructions
Dental injuries
Parasitic infections
Malnutrition
Iron or Zinc deficiencies

At times, having information is overwhelming. It is difficult to read these things and think about our son. The worry we feel about this is only compounded by the limited pain response that Little Bug exhibits. In reviewing the articles provided, we noticed that children with developmental disabilities often exhibit pica for a much more prolonged time. No one understands why this is something that sticks with this group of children longer than other children.

The interventions for pica sound mostly rooted in behavioral interventions.

Interesting article

2009-10-20T07:44:00.001-07:00

Mercury levels similar in kids with, without autism: study

by Jean-Louis Santini Jean-louis Santini – Mon Oct 19, 5:38 pm ET

WASHINGTON (AFP) – Blood levels of mercury are similar in children with autism and in those developing typically, a study released Monday found.

The research at the University of California-Davis, however, does not address whether the heavy metal, known to be able to cause developmental problems in children, plays a role in causing the disorder.

"We looked at blood-mercury levels in children who had autism and children who did not have autism," said lead author Irva Hertz-Picciotto, a professor of environmental and occupational health.

"The bottom line is that blood-mercury levels in both populations were essentially the same. However, this analysis did not address a causal role, because we measured mercury after the diagnosis was made," she added.

Earlier research has shown that mercury can adversely affect development of the nervous system.

The research, published in the journal "Environmental Health Perspectives," is the largest investigation to date on mercury levels in the blood of autistic children.

The study was done as part of the California-based Childhood Autism Risks from Genetics and the Environment (CHARGE) Study, of which Hertz-Picciotto is lead investigator.

CHARGE is a comprehensive epidemiological investigation that seeks to identify factors associated with autism and discover clues to its origins.

Children who took part were aged between 24 and 60 months and diagnosed with autism as well as children with other developmental disorders. Children who developing typically were used as controls.

The study probed sources of mercury in the participants' environments, such as fish consumption, personal-care products (such as nasal sprays or earwax removal products, which may contain mercury) and the types of vaccinations they received, researchers said.

"The study also examined whether children who have dental fillings made of the silver-colored mercury-based amalgam and who grind their teeth or chew gum had higher blood-mercury levels," they added.

"In fact, those children who both chew gum and have amalgams did have higher blood-mercury levels.

"But the consumption of fish -- such as tuna and other ocean fish and freshwater fish -- was far and away the biggest and most significant predictor of blood-mercury levels," they stressed.

The study was carried out on 452 children: 249 were diagnosed as autistic, 143 were deemed to be developing normally and 60 showed retarded development such as Down Syndrome.

"Just as autism is complex, with great variation in severity and presentation, it is highly likely that its causes will be found to be equally complex. It's time to abandon the idea that a single 'smoking gun' will emerge to explain why so many children are developing autism," said Hertz-Picciotto.

"The evidence to date suggests that, without taking account of both genetic susceptibility and environmental factors, the story will remain incomplete," she added.

Fallen off the wagon....

2009-10-20T05:44:00.000-07:00

Well, Little Bug has fallen off the potty training wagon- at home that is. He is back to avoiding it and creating quite a fiasco when asked about. At school, however, he loves to go potty. His teacher says that he has asked to go everyday and goes every time he asks.

We are unsure how to handle this. On one hand, there is the desperate want from the parents to not have to buy diapers. To not have to deal with the judgment in public over having him in diapers still. It is amazing what people feel okay saying. Yesterday, I was called a "lazy parent" because my son still wore diapers. I looked at the person and said, "You have no idea what my life is like. Go judge someone else."

On the other hand, we don't know what we are doing. Every time we push him, he goes back. Every time we think we have it figured out, it goes awry. At this point, we still think that giving him time is the best.

Little Bug and tried an experiment the other night as I wanted to know if he could recognize the need to go to the bathroom and the sensation of wetness. I let him put on his big boy underwear and hang out. He peed in them and didn't acknowledge it. He didn't acknowledge that they were wet or that he had to pee. Given this, maybe we are putting the cart before the horse and rushing him. I know I'm not an expert, but to me, it seems that a child should have an understanding of the sensation of wet versus dry and the need to pee or poop.

If anyone has tips or suggestions, please pass them our way.

Conversations

2009-10-14T05:34:00.000-07:00

A couple nights ago, Little Bug cuddled up to me in bed. “Daddy Bake?”
“Yes Bug?”
“I swim whale sharks.”
“You want to swim with whale sharks?”
“Yeah… tiger sharks, bee white white sharks, sand tiger sharks, blue sharks, hammer sharks- scawy for me. Just look. Bee hurt me.”
“You’re right; all those sharks could hurt you. Can whale sharks hurt you?”
“NO! No teef!”
“You’re right, they don’t have teeth.”
“You come with me?”
“You want me to go swim with whale sharks with you…. Anytime.”

He rolled over, content in this conversation. He closed his eyes and cuddled in between me and Nick. Within seconds he was asleep.

When Nick and Little Bug come pick me up from the bus stop, I always ask Little Bug about his day. He normally says that he “paid twains” and that’s about it. Sometimes, I get a garbled sentence about his teacher with lots of hand motions. Yesterday, he surprised us all.

“How was your day, Little Bug?”
“I paid twains.”

I rolled my eyes and sighed thinking that this would be the usual end of our conversation. “How was your lunch?”
“I ate. Raidins. Ham. Capcakes.” He frowned furiously. It was obvious that he was really trying to figure something out. “I shared with O. O is my friend. N. too!”

I burst into tears. He has never mentioned friends. He has never mentioned people from his class before. He went to his last school with O and although O was Little Bug’s favorite person to play with, he never talked about him. In fact, they never talked to each other. They would hold hands during Red Light, Green Light, and play next to each other. Apparently, he always holds O’s hand when getting off the bus and going to lunch.
Little Bug has also decided he has a west fiend- which I am assuming is a best friend… our dog Frank. He gave him a hug last night and said, “Frank, you my west fiend.”

His own system

2009-10-09T06:23:00.001-07:00

Little Bug has taken over his own potty training. He has developed his own system:

1. Yell, “I WANT POTTY!”
2. Remove Pants
3. Run through the house (allow for several laps)
4. Eventually arrive at bathroom
5. Put step stool in front of toilet- make sure to spend a few minutes positioning it just so.
6. Put potty ring on toilet in a haphazard manner that seems to increase the chance of butt dunkage by 500%.
7. Take off diaper
8. Climb onto toilet
9. Pee
10. Laugh and Clap
11. Run through the house- as these are victory laps, make sure to yell, jump, laugh, and seem pretty damn proud of yourself.
12. Ask for a “potty feet” (potty treat in Little Bug words)

I personally think he has a great system. It involves more steps than I had expected, but hey- we all have our own methods. Nick and I have decided that we aren’t meddling. He obviously felt like he needed to control the situation in order to do it.

In the past three days, he has gone potty on the potty 10 times- twice on Tuesday, 3 times on Wednesday, and 5 times yesterday! All by himself and always when he needs to go. He doesn’t sit on the potty for hours- like he did before. He doesn’t need the incentive toys. He just does through the above system- which in itself can take 5 to 20 minutes- and is done.

Pica

2009-10-08T05:37:00.000-07:00

Little Bug has been eaten foreign objects from the time he could roll over. When he was really tiny, he would roll over and pick carpet fuzz off the carpet and eat it. When he could crawl, all bets were off. Anything- and I do mean anything became fair game for eating. Here is just a sampling of some of the bizarre crap our wonderful Little Bug has eaten:

Carpet Fuzz
Grass
Flowers
The pins from a screen door- which he disassembled while Nick was peeing
Paper- towels, TP, notebook, etc.
Sylica Gel
Packing Peanuts
Wheels- off of trains, cars, etc.
Legos
Pieces of my table- we have bite marks to prove it.

No we aren’t bad parents. We don’t abandon him for hours and not watch him. It is a compulsion. He literally cannot stop himself. He can tell me that the pictures I took of his birthday at the zoo should not be eaten, but when I let him look at them, he immediately puts them in his mouth.

Anything and everything is an option for consumption. He has eaten salt, dog food, laminating paper, stickers, tattoos, parts of toys, sticks, leaves, etc. than I can remember.

We are and have been worried about the potential for bowels obstructions and lead poisoning. He plays with lots of toys from goodwill, which ofcourse means toys made who knows when by what standards and where. He loves Thomas the Tank engine, which means he eats a lot of paint of the engines.

His doctor wants to rule out a zinc or iron deficiency as well as anemia, but believes that he has Pica and has diagnosed him as such.

What we do about this, we are a bit lost. We watch him like hawk because in this way he like every 9 month old- if it’s in my hand, it goes in my mouth. We don’t leave things out. He can’t be left alone at all because he eats things. He tries to eat things when we’re there. (We jokingly call it stealing) When there aren’t small things to steal and eat, he goes after big things- like the furniture. No lie, we have several bites out of our table and anyone who has been over has seen it. We have tried the OT solutions- providing a chewie, trying to make sure that he is modulated by given him a more robust sensory diet, providing food choices that are very resistant (carrots, celery, red vines, etc.). It doesn’t matter. He finds a way to eat this stuff.

For example, when I do laundry, he has to come too for obvious reasons. Unfortunately, he has figured out that he can bite the wall in the laundry room as well as the insulation around the door when he can’t get a hold of things like grass, dryer lint, or dryer sheets to try to eat while I am busy. (By the way, I know I make it sound like he plans this and I *know* he doesn’t because regardless of the reaction, he still does it.)

We should find out about his blood work on Monday.

It’s potty time!

2009-10-08T05:36:00.000-07:00

The past two days have shown an emerging skill- asking for the potty when needed. We had basically given up on potty training for a while. It seems like when parents get really excited and really want something to happen, that is normally when things seem to fall apart. I think children feel pressured and just can’t perform under the stress of the parent expectation. Even if we don’t tell them that we expect it, I believe that through emotion and subtle facial and tonal cues, they can sense the importance and weight of the expectation.

Like I said, we gave up. It wasn’t worth the tears, the screaming, the self injuring, and stress. It wasn’t worth trying to force him to comply because that’s what you do.

So imagine Nick’s shock when on Tuesday Little Bug walked up and said, “Want to sit on potty.”

Little Bug walked into the bathroom, dragged the stepstool over and put the potty ring in. He then took off his pants and diaper and sat on the potty. Nick was reaching for the basket of incentives- toys only played with on the potty- when Little Bug peed. He clapped for himself and smiled. Flushed the toilet and ran to get a diaper and a potty treat.

He has now repeated this feat 4 more times. Each time he asks, he actually needs to go. He sits on the toilet, pees within seconds of sitting, and gets down.

This is wonderful! We’ll see how long it lasts and how often he can do it in a day without interference. We really don’t want to force him into this.

Apparently at school he has been trying to go potty. It was part of his IEP, however because we weren’t having success at home, the school wasn’t trying. Several times during a class, the teacher and aides will prompt the kids who are either potty trained or actively potty training to go to the bathroom. The little kids all go in and go potty. Little Bug feels that he should be allowed to participate and has been going in with the other kids.

He will now be potty training at school- but only if he wants.

I AM A LIAR (at least my son wants you to think so)

2009-10-08T05:35:00.000-07:00

During Little Bug’s parent teacher conference, we talked about one of his new behaviors- he gets stuck repeating the following, “I’m Little Bug. I’m three.” He will say this over and over again.

Nick and I have tried to get him to say “What’s your name?” but this never works out because when we prompt him, he tells us his name. During the conference we explained that we think (operative word here) is his attempt to initiate social interaction, unfortunately he can’t ask what someone’s name is.

(If you know anything about foreshadowing and children, you know where I am going here.)

On the way to the doctor’s office, he looked at me in the car and seemed to really think. His little brows furrowed and he frowned. He opened his mouth and would start to speak and stop. I knew that whatever was going to come out was really hard for him.

Finally, he looked at me and said, “What’s your name?”

A huge smile stretched across my face as tears spilled over. “I’m Daddy Blake. What’s your name?”

We continued this game all the way to the doctor’s office. Where he asked for the nurse's name.

I am happy to be this kind of liar.

Showered in Praise

2009-10-08T05:34:00.000-07:00

“Best behaved in the class…” “Extremely intelligent…” “Outgrow the program…” “Academic path…”

We had Little Bug’s first parent teacher conference and were astounded at just how well he is doing. The teacher stated that he is the best behaved in the class. Some of the other children, including the peer models, are “out of control” and at times he helps bring them back to a normal behavior range through his calm, quiet play.

She also stated that he shows a great aptitude for academics and is concerned that he will outgrow the program before he “graduates”. Speaking of graduating, when we wrote his IEP last year, we were told that he would be in this program for 3 years- when he is 3, 4 and 5. He would be expected to start kindergarten when he is 6 because he wouldn’t be ready emotionally or cognitively until then. He teacher explained that she will have a hard time challenging him until he is 5. 6 would be extreme. She feels that we should start looking into the K1 integrated classrooms now in order to find the best set up for him.

She stated that during class, he has demonstrated that he knows letters, the sounds letters make, and at times, possible word recognition. She has been doing “alphabet” cards in which she shows the circle a card that has the letter- capital and lower case- a word with the letter and the sound the letter makes. Little Bug is always first in line for this and always the first to answer.

We gave her some more supports- a picture schedule for sequencing for potty training- and a “choice box” based that I made based off a commenter’s suggestion (THANK YOU, by the way). For his choice box, I took a regular gift box and wrote “Little Bug’s Choice Box” followed by “FIRST” and “THEN”. I explained to the teacher our concern about his perseveration on trains. Basically, you put a couple of pictures of choices from a picture schedule and tell the child that first they can play trains, but in 15 more minutes, they need to make a choice from the choice box. He was incredibly excited for this yesterday and seemed really interested in it.

The conference went amazingly well. We came away with some great suggestions for supporting Little Bug in his letters and writing- Handwriting without Tears for Toddlers- and learned about a new teacher store.

We are so proud of him and glad that he wasn’t limited by people’s expectations of what a child with ASD should be. One of the specialists seemed surprised at all the things he could do while having ASD, which I have to admit made me a bit agitated. This person kept saying, "Well, it is shocking that he can do this. Normal ASD kids can't do XXX." (BTW, the whole NORMAL ASD KIDS made me laugh.) I think I said four times the following:

“ASD doesn’t mean that someone should have lower expectations of their potential because of their deficits. It doesn't mean that their obvious skills should be written off or abandoned. It means that they have challenges. Those challenges however do not limit the potential. While we spend time working on the deficits and challenges, we need to embrace the child’s strengths and encourage growth there. Many people on the spectrum, like Temple Grandin, have strongly encouraged this and we believe it.”

The teacher thanked us for our passion about our son, our willingness to help her and be his advocate. She stated she was excited for his abilities and that he was a fresh challenge to her teaching skills.

New Autism Study

2009-10-06T07:19:00.000-07:00

Autism May Be More Common Than Thought
Survey Shows 1 in 91 Children May Have Autism Spectrum Disorder
By Kathleen Doheny

WebMD Health NewsReviewed by Louise Chang, MD

Oct. 5, 2009 -- About 1% of U.S. children, or about one in 91, may have autism or an autism spectrum disorder, according to two new national surveys.

The new estimate is a dramatic increase from the previously accepted number of one in 150. But experts who discussed the findings of the two new surveys -- one released today and the other due out before year's end -- urged caution in interpreting the new information about the developmental disorders.

A new survey by the CDC found that about 1% of U.S. children are affected by an autism spectrum disorder, says Ileana Arias, PhD, deputy director of the CDC.

No further details were available on the CDC survey, due to be released in full later this year.

What do we do for adults? If 1% of children are diagnosed, what services and resources do we have for the over half a million children who become adults?

ASL update

2009-10-06T07:09:00.000-07:00

I give a lot of credit for Little Bug's language to ASL. ASL is what we turned to between diagnosis and services- those horribly long months on wait list after wait list. His first language understanding was ASL- that was where the first phrases, questions, and comments came from. ASL is what gave him a voice. When asked what languages he speaks, we always add ASL because he still uses it.

We are now using ASL for letters. This weekend, Little Bug learned the alphabet in ASL. I am amazed at how quickly he picked it up. We went through it twice, and now he is randomly saying letters and signing the correct sign.

In other updates, he knows the days of the week. How and where he learned this is beyond me, but he does know them. He looked at Nick and I on Sunday and said, "Ride school bus morrow- Mondy." He was right.

He is having a hard time with stimming again. He has begun to go to his room and open and close the doors on his dresser and yell "Open and Shut! Open and Shut!" over and over again. If something is red, brown, green, or blue (Thomas people know where I'm going), he has to sing the Thomas the Tank Engine theme song.

Biting and hitting are creeping up in instances. It seems like this is his way of modulating himself as he is doing it whenever he is feeling something extreme. For example, he and I were wrestling and goofing off yesterday. I was tickling him and he was laughing hysterically- those belly laughs that shake his body and make everyone in the room laugh as well. Well, he bit my face. I didn't get mad or loud, I just said OW! He immediately apologized and we went back to playing. He later was biting himself because he was laughing.

I am thankful that we will be starting OT in 17 days.

Expected Outcome

2009-10-06T06:33:00.000-07:00

In the reading homework of the studies that most insurance companies use to decide medical eligibility, I was shocked. Over and over again, the words “normal child” was used. The studies regarding therapies such as LOVAS, TEACH, PROMPT, LEAP, etc., it appeared that these therapies were often discouraged because the outcome was not of that of a “normal child”.

I cannot understand. If the assumption is that ASD is a lifelong disability as stated in the studies, why are we expecting an outcome of a “normal child”? Shouldn’t the expected outcome be that of less dependence? A chance to learn skills to be as independent as possible?

Maybe we are weird, but we have pretty much accepted that things will not be normal. With this diagnosis come a different path and set of expectations. While we absolutely still hope and push Little Bug to do his best, we have also changed our expectations. We want him to reach his full potential. We want him to be as independent as possible. We want him to have a life defined on his terms as successful.

It seems like information is missing from these studies. How many families were studied from the time the child was diagnosed into adulthood? Have we verified how many children who received any of the denied therapies were less dependent on adult care? Have we looked at how children grew into adulthood after these therapies and were able to have a job?

HOLY CROW!

2009-10-02T05:34:00.001-07:00

I want to be "hopefully cautious" when I blog about this. Little Bug is exhibiting some interesting skills:

-Letter recognition- 19 of them baby!
-Possible word recognition- open, up, no
-Writing- to date, he has written, correctly and untaught- "N" "O" "A" "C"

I don't want to get to excited.... oh, forget! We are thrilled! What we do with these new found skills is a bit beyond us, but we will figure it out.

Insurance Update

2009-09-30T06:01:00.000-07:00

This week, we got a little more bad news and some really good news. The bad- Little Bug's therapy will need to be reviewed every 25 appointments to verify that it is medically necessary. Based on their communication, this will be based off his records as well as clinical criteria- which is about a 25 page document that we need to read and understand.

The good news is that just about everyone involved in this situation messed up. The information provided to us was wrong again. This time, confirmed with multiple people as my company and our insurance company, we were told that he has unlimited visits for OT and speech based on the fact that he has a neuro-developmental clause.

We also found out that the insurance company wasn't paying attention to the fact that Little Bug was diagnosed with ASD. This in turned messed up the billing, which is why several hundred dollars of claims were denied.

This means, that our average monthly health bills will go from $1166.00 to $700.00 a month! This is wonderful!

All by himself

2009-09-30T05:35:00.000-07:00

On Monday, I was asked to attend part of the school day with Little Bug in order to make a picture schedule for his teacher. This entailed creating many transitions based on his daily schedule. This also gave me an opportunity to see his class in action.

I was really impressed on the sensory options that were available- sand and water play, play dough, a quiet spot, as well as an indoor fort. I also liked the way the room was set up- lots of options, yet displayed in a way that was not overwhelming.

I was concerned with some of the other things I saw. Little Bug was allowed to play trains for an hour without any interaction encouraged. By the staff, he wasn't prompted to share or have conversations. He wasn't encouraged to pick a new task by anyone but me.

The teacher and I had a discussion about his picture schedule. She stated that she had wanted a picture that says, "I share toys!", however the SLP stated that was a more behavioral approach. I told her I agreed with the SLP. The behavioral approach needed to be consistent as well as direct. For example, you could say, "Little Bug, share a piece of track with L." Once he complies, get excited. Do this over and over again.

I don't know how to nicely explain that the support level in class needs to be stepped up a bit. Little Bug should be directed to make new choices as he will perseverate on the trains all day if you let him- and they do. We get a letter telling us what he did each day; each day, it says I played trains!

I am concerned about our approach. This teacher is kind, patient, flexible, and willing to learn. She has asked for help and opinions. She has been very open in her communication. I want to make sure that we aren't telling her how to run her class, but what our son needs.

&)#^%*# Insurance

2009-09-25T09:43:00.000-07:00

Nick and I were given a nasty surprise in more ways than one from our insurance yesterday. Let me give you a brief outline of our insurance situation.

Our insurance premiums are $400 a month. Our co-pays are as follows:
• Regular doctor appointments: $25.00
• Specialist Appointments: $35.00
• Urgent Care: $75.00
• Emergency Room: $100.00
• Hospital Stay: $300.00

Additionally, we each get 60 visits to short term rehabilitation a year- part of the specialist bucket and cost $35.00 each. Originally, we were told that Little Bug’s OT would be considered short term rehabilitation, but not his speech. We were also told that we would need a referral for each service ($25.00 each appointment) every three months- to be sure he still needs the therapy- from his PCP. Also, they would need confirmation of diagnosis from his neurologist ($35.00 each appointment) as well as updated case information, every 6 months. Just to be able to have therapy, we are looking at $170.00 in co-pays.

We found out yesterday that we were misinformed and his speech is part of his short term rehabilitation visits. This means that we only have enough visits for 6 months a year. The co-pays for these visits total $2,100.00. After the six months, we will have to pay for speech and occupational therapy out of pocket. Our speech therapist’s rate is $145.00 and the OT clinic is $210.00. For a conservative estimate of 20 visits each, that will bring our out of pocket expenses to:

SPEECH: $2,900.00
OT: $4,200.00

Our total therapy costs for speech a year will be $3,950.00. Our total costs for OT a year will be $5,250.00.

One year of medical bills for items solely related to Autism is:

$9,200.00

This doesn’t cover a behaviorist. Even if Little Bug only saw a behaviorist once a month that would be another $1,200.00. If he saw them 4 times a month, $4,800.00. Our total medical bills for Autism would be between $10,400.00 and $14,000.00.

This doesn’t include home therapy supplies. This doesn’t include doctor’s appointment for things that happen because of his Autism- when he hurts himself because he doesn’t seem to feel pain, when he eats glass or like last night, scratches his actual eyeball when self injuring.

Nick and I are lost. We don’t know what to do. We will run out of visits for this plan year in February. Our visits will renew in April, and then run out again in October.

There is one side that wants to say, we need to set reasonable goals and just do the best we can. Fudge a little- every other week appointments for speech and OT to get them covered with more home therapy. Maybe see a behaviorist on a consultant basis only- think, in case of Autism emergency break glass.

The other side of us says that we should sacrifice everything. Give up our jobs, apartment, and current lifestyle, move in with our family who has so graciously offered, and get it done. Again, this is a huge risk. We don’t know what we would qualify for in terms of assistance. We don’t know if Nick would be able to find full time work we are considering moving as it is a severely economically depressed area of Washington. We know that the area is much more conservative and this will create a whole new set of difficulties for Little Bug and our family.

Bottom line, this is with insurance. Total bills, including premiums, co-pays, and out of pocket expenses for just Speech and OT a year is $14,000.00.

I am assuming that this is normal or even low. Most people don’t put these numbers out like this. I know- its taboo to discuss money. But you know what? If people don’t discuss it, it will never change. People need to see the raw numbers. The debt. The choices faced. We are left wondering what enough is. What is enough for us? What do we do for Little Bug? How do we make this right?

I am certain we aren’t the only ones facing this. Unfortunately, I don’t have the answer. I don’t have a solution.

Bus Update

2009-09-24T06:43:00.000-07:00

Little Bug has had a substitute bus driver since Tuesday. Monday was an awful day for the bus- screaming, yelling, hitting, biting, etc. Tuesday onward was a complete 180. He was willing to get on the bus on Tuesday. The bus driver had an aide who helped Little Bug to his seat.

Yesterday, he was jumping up and down with excitement about the bus! Now, to me, this says that the root problem was probably with the bus driver. She is nice and all, but she did speak loudly with an incredibly high sickeningly sweet voice. If she comes back, we are going to try to give her some suggestions about dealing with Little Bug.

One final note about the bus- he saw a school bus last night and said I love the bus. I like Ms. Carla (Ms. Carla is the substitute who was done something amazing.)

Confessions

2009-09-23T08:08:00.000-07:00

This post isn’t really about Little Bug or ASD, although they are featured heavily. It isn’t about getting suggestions or brainstorming, although that is always helpful. It isn’t about health insurance or co-pays, although they are a part of it. It is simply about some things I struggle with and wanted to get out.

Confession- this isn’t getting any easier. I expected that over time, it would. Somehow, I would accept certain things and move forward. I thought that I would be okay with people not understanding by now. I thought that at some point, I would let go of the sorrow I feel when someone brags about something their 2 year old can do. Something I watch Little Bug struggle with and can’t do. At some point, I wouldn’t be jealous for Little Bug.

Confession- money makes me insane. Now that Little Bug is out of the Birth to Three program, we are trying to cover all of the therapies ourselves and with insurance. Our insurance, good insurance, covers Speech and OT with a $35 co-pay visit. In a month, that is $280.00 of just co-pays. It doesn’t cover a behaviorist at all- who we have decided we need because for some behaviors, we are at a loss. The behaviorists I have found through my own research and recommendations from friends and local hospitals start at $100.00 an hour. One was $190.00 an hour. If we go with the cheap one, that’s another $400 in therapy costs a month. A total of $680.00 a month on just therapies. I have a feeling that the above amounts are typical for a family with ASD and probably on the low end because we have insurance. Like Ted Kennedy says, it does feel awful to look at someone you love and know that there is something that could help them, but not be able to afford it. If we try to pay for all of the above therapies, we are $200 short a month. Nick and I are left with the following dilemmas-

Do we save for retirement or pay for Little Bug’s therapy? How do we do either while keeping our heads above financial water?

Confession- I feel guilty a lot. I feel like I should have known what was going on with Little Bug earlier. I was so depressed and felt panicky about him all the time (even if I didn’t let people know it). I feel like I should have listened to myself. I feel like if I don’t spend every waking minute with him, something will go wrong. I feel guilty at times for the growth that Little Bug has made. It seems unfair the way this works out. How some kids progress and others progress differently. It makes my heart ache and tears spring to the surface.

Confession- I hate the term splinter skill. There are lots of people- NT people- who are really good at one thing; in fact, most of us are. This achievement isn’t looked at as an abnormality. It is expected. Yet when people with ASD are good at something, it is called a splinter skill and minimized as though somehow, because they are Autistic, having amazing skills is less amazing.

Confession- I worry insanely for the future. I worry about whether he will be able to work or live on his own. I worry about how to prepare for the worst case scenario. I worry about Nick and I being able to last through this turmoil of split shifts and only seeing each other part of two days a week only for another three years. I worry about what happens when Little Bug is too big for me to make him do anything. Right now, he is too heavy to carry for long and is over three feet tall. What happens when he is over 4 feet tall and 70 pounds?

Confession- his self injuring isn’t stopping. It scares me. It makes me hurt so badly to watch him bite, scratch, hit, and throw his head on the ground. I feel so small. At times, it is all I can do to stay with him and hold him while he thrashes. I hate watching him hurt himself. I hate that there isn’t anything that I can do. This weekend, he hit himself hard enough to bruise his face and hand and cause them both to swell.

Final confession- I realize that the answer lies within us. I realize that I must give myself absolution. I realize that I still need to work on myself in order to make this work. I realize that I can’t worry so much. I realize that I need to listen to Little Bug and be in the moment. I need to stop mourning for things that haven’t happened yet and appreciate what is happening now. I realize that I need to do my best and accept that mistakes will happen. I realize that I have the power to make a difference, in Little Bug’s life and in others. I realize that there is always hope.

What do you realize?

I know you're trying to tell me something!

2009-09-22T05:30:00.000-07:00

Little Bug had a really hard time at school yesterday. It all started when he had to ride the bus. This week he has begun to ride it by himself both ways. Apparently, he cried the entire way there and also bit the bus driver when she attempted to buckle him in.

He also had a really hard time with transitions and his teacher has asked that we help make a better picture schedule for him as the one that they have simply isn't working.

When we asked him why he had a bad day, he sai, "On da bus.... lowyang."

We have asked the following questions and are no closer to the answer:
-Is there a person name Logan? NO
- Was someone laughing? NO (laughing is disturbing to him at times)
- Did someone touch you? No
- Did you sit with someone? No
- Was the bus driver nice? Yes...sad...lowyang

We have no idea what he is taking about. We both are somewhat frazzled as we can't figure out what the hell that word means and why it is so scary for him.

First Day of School Part 2

2009-09-17T05:36:00.001-07:00

The actual school part went well yesterday. From Little Bug's perspective, it was awesome because he was able to play Thomas and sign Wheels on the bus. He even ate some of his lunch.

From our perspective, it has worked out better than we had ever dreamed. Little Bug doesn't have an aide required by his IEP, but it has ended up that one aide in class is dedicated to him. The aide stays with him through out the activities to encourage social interaction, sharing, and to be an anchor for transitions. This is all because of his teacher. She has learned about ASD and feels that him having an aide is the best approach.

His teacher is AMAZING! We took the time to write a letter with areas that he struggles with and suggestions as well as commonly used signs. She not only read it, but responded with thanks as well as how she implemented our suggestions.

She has gone above and beyond. She and the SLP have created a picture schedule for him. The SLP is hoping that he will not need it based on language growth by the end of the year.

Last night, there was an open house- which Hama and Bumpa came up for. They loved his classroom and his teacher. We loved his teacher. She spent half an hour with us, asking questions, taking feedback, and actually writing things down. She was open minded and asked for help. Being that Little Bug is the first Autistic child she has taught, she was very eager to learn.

I was amazed that she listened to us. I am used to having our concerns down played and minimized. Suggestions ignored because we don't have a degree. Not her. She asked for help in making a support for "How is your engine running?" to help him stay on track with the speed of the class. We taught her how to pick him up when he is aggressive and she took our suggestions on how to create a better quiet spot. Hers was in the middle of the room under a play structure and bright lights.

Needless to say, we are happy and have lots of homework. I am glad to do it. She is willing to learn and try and it is our job to set her up for success and support her. For her, we are creating transition cards, "How's your engine running?", and providing feedback on how we are implementing goals at home. For the SLP, we are providing the sight words that Little Bug recognizes, what goals he has with his SLP, and how we are working on it at home.

There were some bitter sweet moments last night. When we walked into the school, a little guy from his class began yelling, "That's my MAN! I like him! We play trains!" Little Bug didn't even notice or acknowledge it. It took 6 prompts to get him to look up from the patterned tile floor to say hi. A little girl came over and introduced herself to me. She looked at me and said, "I play trains with him. I like him." Again, no acknowledgement from Little Bug. On the bright side, the kids didn't seem phased by his lack of response. They just accepted him for who he is.

I don't know how to say this in a PC way, but it is different seeing him with typical peers. At the last center, most of the kids had Autism and they all ignored each other except for rare spontaneous interaction. It is such a drastic change to see him with NT kids. I never realized completely how delayed his social skills are. How delayed his speech is compared to other kids. Don't get me wrong, he can chatter a mile a minute, but not in the same functional conversational way that these kids do.

First Day of School!

2009-09-16T10:49:00.001-07:00

Well, it's official- Little Bug is in school. This morning was a bit rocky. In general, he was pretty high strung and resistant to any diviation from routine. He cried about having chocolate milk and not white milk. The wrong kind of cereal sent him into a 15 minute fit. The shower this morning sounded like he was being murdered.

We thought that things were getting better because by 8:30, he was playing with his toys. Unfortunately, not. While he voluntarily put on his shoes and harness, waiting for the bus was another story. There was lots of stimming and ear covering; verbalizing and trying to fling himself on the ground.

When the bus showed up, she had us hand him through the door so she could strap him in. Big mistake. His screams could be heard over the bus and soon she was asking for help. He was hitting and pinching his face while flailing and making it near impossible to finish strapping him in. It took the two of us to get him in. The driver asked me to ride with him this morning to make for a better transition.

He seemed to be doing beter once we got to school and he recognized the buildings and the aides. Hopefully, the rest of the day goes better.

School Woes

2009-09-01T06:41:00.000-07:00

Little Bug has reached a new low when it comes to school. Any mention of school, school bus, new friends, results in NO. We saw a school bus yesterday. He looked at me with tear filled eyes and said. “No bus, daddy. Pease no bus?”

Hopefully this is normal, although he seems to be taking it to an extreme. We took him shopping for shoes yesterday and I stupidly mentioned school. That tanked the whole damn thing. He screamed and cried and stimmed and lashed out at the boxes and his parents.

This weekend, to try to ease the transition, we made a paper chain to count down until school. We thought he might like to pick one of his favorite colors- red or blue- for the first day of school. When I asked him what color should be the first day of school, he looked at me and said, “BLACK”. He *hates* the color black and yet this was the color for the first day of school.

When watching Thomas the Tank Engine, we saw an episode were Thomas had to help the children get to school. He immediately covered his ears, turned off the TV and then put away Thomas.

We have tried taking him to the school in order to make him excited about it as well as talking about other people who go to school. No dice. He isn’t interested in school.

He has also begun to regress and his speech therapist is concerned. He is unable to answer yes or no questions correctly 80% of the time. He has begun to show much more echolalia in his speech.

I need to email the school and tell them that they have a storm brewing. They need to know that he is petrified. They should have some sort of supports on the bus and to get him off of the bus. We also should get a recap of his first day.

Sleep issues

2009-08-25T06:36:00.000-07:00

Not sure if I shared, but when we last saw the wizard (as we like to call Little Bug's neurologist), he diagnosed Little Bug with Sleep Distrubances NOS (Not Otherwise Specified). Basically, this documents that Little Bug still doesn't sleep through the night. That he still has an incredibly difficult time falling asleep.

We have a new wrinkle- sleep walking. He has begun to do things at night that he would *never* normally do. I know, you say, you can't know that. I know that he would normally not trash the house. Last week, I woke up to get ready for work and at first thought we had been burglarized. There was stuff everywhere. Every cupboard in the kitchen was open. Any stitch of fabric in the kitchen and bathroom had been tossed onto the floor. All the coasters and mug rugs the Hama makes were tossed all over the living room.

Last night, Nick and I found out that he has been sneaking food. I had been finding wrappers during the last week and thought that Nick was having a late night snack and just didn't see them. Nope, they were Little Bug. Which explains why when he wakes up at times his face is sticky.

I have found dried beans and spaghetti noodles on the floor. Again, I thought Nick was looking for a snack and didn't see that he had made a mess. But, no it wasn't Nick.

At this point, for his safety, we are going to have to consider all options. He already sleeps with us- heaven help us if he sleeps in his own bed. I worry that he could hurt himself or choke with his midnight eating. As he gets bigger, I worry that he will be able to get out of the house easier- we already have special locks installed and are now figuring out how to adjust the door alarm we bought.

I just want him to be able to sleep. To not wake up looking like he didn't sleep at all. He often carries steamer trunks under his eyes.

Ri Da BUS!

2009-08-19T07:29:00.000-07:00

School starts in less than a month. While we aren’t sure how much Little Bug understands about this concept, we do know that it makes him incredibly anxious. His flapping has increased one percent; if his arms were actually wings, we would never see him again. He whirls like a dervish- a tiny, sharky, vocalizing dervish. He has also begun to get aggressive again- verbally and physically.

His anxiety feeds mine. I can see him struggle and yet can’t cross the gap to understand and help process the anxiety. I have begun to make a list of things I need to do in my mind- write a letter to the teacher, get chewie rope, get fidgets for the bus, stock up on diapers for school, get a hold of the transportation department, make school pictures for his picture schedule, start How is your engine running, make a weighted vest, make a lycra tube, etc.

Even though the school is only 6 blocks from our house, Little Bug will be riding the bus. Because of his mad Houdini skills- he can unbuckle his five point harness and get wedged between the seats while the car is going 60 mph on the freeway, he has been sentenced to wear a reverse safety harness. I want it now so that we can get him used to it. Unfortunately, we haven’t had any luck in getting a hold of someone.

It is amazing how the stars line up sometimes and suddenly- kismet. This morning, as I was reading a book about video modeling for children with ASD (more on that later), a woman sat down on the bus and introduced herself. It turns out that she is the director of special education transportation for the Seattle School District.

We started talking about Little Bug, IEPs, and transportation and she offered to help me. She gave me a different phone number from what was listed for the SPEC ED director in Tacoma. Additionally, she is bringing Little Bug a squishy bus as a fidget- apparently on the first day of school in Seattle, all the little guys get one to make the bus ride better.

Its times like these that remind me that my family isn’t alone. That we aren’t the first people to do this and won’t be the last. That by being open, we can make connections and get the help we need. It reminds me to repay the kindness and be that resource for someone else.

An Interesting Article

2009-08-19T07:05:00.000-07:00

This article is written by a dad who's daughter has PDD-NOS. He describes the experience of taking her to the movies for the first time as well as the experience of finding his daughter in the film Ponyo.

http://www.npr.org/templates/story/story.php?storyId=111960817&sc=fb&cc=fp

Your answers only lead to more questions

2009-08-13T06:51:00.000-07:00

I have been trying to get Little Bug to tell me what he did during the day. When I get off the bus, I sit in the back seat and ask him about his day. I have found that he cannot tell us what he did in a day. Our conversations go like this:

B: Hey Bug! Did you have a good day?
L: Uhmm, no.
B: What happened today?
L: Rode Fains (trains)
B looks into rear view mirror to see Nick shake his head no, indicating that they didn’t ride trains. : Did you play outside?
L: No, inside
B looks into the mirror again to see Nick shaking his head yes, in fact they did play outside.

This goes on every day. This causes an insane amount of anxiety. We are going to send him off to school and yet not have any way to hear from him what happened. While I want to have faith and hope that the school will do the right thing by him, it breaks my heart that my son will not be able to tell me if something isn’t going well.

Little Bug had his first melt down about school this week. We can tell that he has been upset about something- which we assume is that lack of Birth To Three and the structure that they provide- as he has been flappy, jumpy, extremely quick to emotion and hurting himself more.

He was playing with a school bus on his road rug and Nick and I decided that we could use that time to talk to him about riding the school bus. We told him that he was going to get to ride a bus like that. His face was overtaken with a huge smile.
He looked at us and pointed to the bus, “Daddy Nick and Bake too!”

We told him that we weren’t going to be able to ride the bus, but he would ride it with his friends. He became panicked and threw himself on the ground, crying and hitting his head. He began to yell, “No BUS! NO BUS!” and then bit himself.

I wish we could make this easier for him. Nick and I have decided that we are going to have him ride the bus- even though the school is only 6 blocks away from our house. If he struggles with it or is truly unhappy, we can always withdraw him from it, however he needs to give it a shot.

No MUCUSINGING

2009-08-10T06:42:00.000-07:00

Going in public is becoming difficult for Little Bug again. His auditory sensitivity has greatly increased recently. Yesterday, we went to Goodwill- which he normally loves. Once inside, he immediately covered his ears and began to yell, “No MUCUSINGING!!!” (That’s his word for music. Think MUCUS and SINGING mixed together. Fitting when you think about how offense it is to him.)

We were able to calm and soothe him and get him involved in other things- mainly rummaging through the toy bins while only every so often yelling about the music. Our house is a bit muted recently- no music, not as much sporadic laughter, because when he isn’t in the room, causes him to cry real tears, throw himself down and cover his ear, and the TV at an acceptable level per Little Bug.

While I know some people would say that we coddle him too much, I don’t think so. I certainly don’t think this is behavioral as he does it in public and private and to a variety of noises. Given that, I have a hard time imagining myself telling him that he just has to get over it. To me, that seems like telling someone who has a broken leg to stop being a baby and walk already. While it may not be a common or easily understood difficulty, we have to remember that it is very real for him.

I have even tried home therapy- my idea of it anyway. In this, I have Little Bug pick out music and then we put it in together talking about how fun it will be. I turn on the TV and hit PLAY. He immediately covers his ears and starts crying, “Daddy Blake! Pease, no mucusinging! Pease, Daddy Bake?”

I have tried to let him control the volume- all with the above results. We have tried telling him to say hi to the airplanes, but to no real success. He still runs to the bushes and covers his head and ears when he can’t. A car backfired on Thursday night and he literally climbed up me and then assumed the covering the ears position. Fire trucks, motorcycles, loud cars, yelling, clapping, chopping sounds- like at a restaurant, etc. have all become too much for him to bear.

Before we go out, we now have to discuss the noise levels. A trip to anywhere has to debated with regards music, potential for clapping, etc. We weigh Target versus other stores- other stores lose because they have overhead music. Target at times losses because they have those walkie talkies from hell that blare every three and half seconds (they are offensive to Little Bug and were to me when I had to wear them.)

Going out to eat means we have to decide whether we want to eat super early or late. We have to weigh what day of the week it is and whether it is a holiday as that means more noise. When we forget, like on Super Bowl Sunday and go out to eat, the consequences aren’t pretty. $15.00 meals are left uneaten and boxed to go home while I run outside with Little Bug, who is screaming, crying, and covering his ears.

We took him to Pike Place Market thinking that he would love to see the fish thrown. (If you haven't been there, look it up on youtube, but the premise is that you order your sea food, and the fishermen yell and toss the fish that are in the order.) That was a disaster. Little Bug wouldn't stop screaming, strangers wanted to know if we needed help, and Nick and I ended up frazzled and sniping at each other.

For example, my company picnic is coming up, but due to the three different kinds of sports being played- all with laughing, yelling clapping by the happy crowd, as well as several hundred people and children, an extreme motorcycle show, and several bands we aren’t going.

The wait list for Occupational Therapy is 3 to 6 months. I am also trying to research Therapeutic Listening; to see if that will help him. The rub will be if it is or isn’t covered and how much it costs.

An Interesting Letter

2009-08-07T06:27:00.000-07:00

Let me tell you, our adventures with our insurance company our never boring. They are full of interesting correspondence- back and forths about Speech Therapy, Face lifts, and OT and whether they are *really* needed.

Yesterday took the cake. In June, my neck was broken by Little Bug. I was taking a bath and he wanted to get in. So, with no intent of harm, he jumped over the side of the bathtub and landed on my upper chest, driving my neck into the edge of the bathtub. The force of this jump caused a small fracture in one of my vertebrae.
I went to the urgent care and received x rays and some pain medication. I went over the cause of the injury several times. It was clearly documented that it was a harmless accident and not a big deal.

Imagine my surprise yesterday when I received a letter from my insurance company stating that they had reviewed my injury and had asked a law group to review my claim to see if “another party involved in the accident should be held responsible for your accident and help pay for your medical costs.” They provided several forms that needed to be filled out in order to avoid “complication with your claims”.

I appreciate in this situation; it was probably a miscommunication on the part of the doctors and insurance company- in that they didn’t communicate as the record of the claim filed reflects that this was an accident in my own home while taking a bath.

I thought of the families with older autistic children who had injured someone- people who are considered adults. There have been several articles surrounding the subject of adults with Autism who have hurt someone. Would an adult child with Autism have been held accountable? When we first meandered onto this path called Autism, I would have thought no, of course not! After reading about people being arrested at the age of seven at school for biting a teacher, held in federal prison for killing their parent, and more examples than I can provide, I know these things are no longer let go.

I have to admit that I am scared for when Little Bug goes to school as he self injures and injures others when he isn’t understood or lacks a way to communicate his needs. The little girl who was arrested- over a tussle about a sweatshirt which ended in her kicking and biting a teacher- was in Washington.

Often times, the reaction to behavior can be extreme- like arresting a 7 year old or seeing if a 3 year old can be legally held responsible for an accident. Another example is found in the video link below- be warned, it is extreme.

http://www.cnn.com/video/#/video/us/2009/07/10/boudreau.behind.school.walls.cnn?iref=videosearch

On the Wait Again

2009-08-05T06:06:00.000-07:00

We received contact from a local hospital and their therapy clinic. They are highly focused on OT and more specifically, Sensory Modulation Disorder. This Disorder isn't in the DSM so it is an undiagnosed but suspected disorder.

Unfortunately, this means another wait period of 3 to 6 months. The nice thing about this situation is that we have ample time to create better goals for Little Bug. Our last goals were focused on bathing, dressing, not biting himself or others.

This time, our goals are going to be more focused around the following:

1. Sensing HOT versus COLD.
2. Sensing and identifying pain.
3. Sensing and identifying bodily sensations- hunger, thirst, heat, etc.

You may think these goals seem basic- they are. They are also incredibly difficult for Little Bug. He will touch items that are burning hot and have no reaction. He played in ice on his birthday until his little fingers were bright red and felt frozen to everyone else. Didn't bother him. He can have a fever of 102 and up and yet act no different.

How anyone would go about meeting those goals is beyond me. What I do know is that we need to do it. Our hope is that the more he learns to modulate his system, he will be able to do the things above.

Yeah, I'm a lurker

2009-07-31T06:33:00.000-07:00

I love to read the ASD blogs, but rarely comment on them. While most people are more outgoing online, I clam up (except here in my own little world).

I do have to acknowledge what I think is an amazing post:

http://www.blogher.com/worst-parenting-day-ever

I read the parent blog http://www.squidalicious.com/ often. I like this blog because it usually gives my perspective a good kick in the butt.

103

2009-07-31T05:36:00.000-07:00

That was this weeks high point. This has been a really rough week for everyone involved, but especially Little Bug.

See, we will in WASHINGTON. We are not equipped for this as most homes and some businesses don't have air conditioning. Ours would be one of those homes.

Little Bug didn't notice the heat. We are pretty sure based that he can't really modulate temperature. For example, on his birthday, he sat and played in a bucket of ice. While that seems normal, he played with it until his fingers barely moved. It didn't bother him. In fact, he was more upset about not being allowed to play in the ice than anything else.

What Little Bug has noticed this week is a complete change in his routine. Nick is on vacation. He isn't allowed to play outside in the afternoons- way too hot. He is being nagged, reminded, prompted, and prodded into drinking water. None of the food he normally eats is being served- too hot to cook. He isn't allowed to wear anything he wants.

For the most part, he did well until yesterday. He hit his breaking point. He is tired. He is covered in heat rash. He wants to play outside. He doesn't like the food. He is sick and tired of being yelled at for trying to climb out our windows. (Side Note- I mean that literally. We don't normally open the windows as he will push the screen out and try to get out. With it being over 100, we had to suck it up and do it. He has made several escape attempts.)

Fortunately for him, we are going to Hama and Bumpa's. There won't be yelling because with the marine fog, the low will be in the 50s and the high will be in the 70s. He will get to see two of his *favorite* people in the whole wide world and his second favorite dog.

Parents and Self Advocates

2009-07-29T10:05:00.000-07:00

Recently in the NY Times, two perspectives were provided of a life with Autism. One was that of a parent and the other of a self advocate. These perspectives were provided in response to the following study-
http://www.sciencedaily.com/releases/2009/07/090708153233.htm

An excerpt:

“"Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers," said Annette Estes, lead author of a new study and associate director of the UW Autism Center.

Surprisingly, the research also found no link between a child's decreased daily living skills and increased parental stress and psychological distress.

"This finding was counterintuitive," said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. "If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay."

These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.

For this study parental stress was defined as being the stress directly related to a person's role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.”

The parent’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/the-unvarnished-reality-of-autism/

The mother states that she despises euphemisms like “tantrum” or “crying”. She gives examples of her reality with her son.

The self advocate’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/autism-from-the-inside-looking-out/

The self advocate gives suggestions regarding behaviors and insight into the behaviors. She also describes how reading the mother’s perspective made her feel.

I have read the comments on the articles that include these posts. Often, a line is drawn in the sand and people are choosing sides. I believe that both perspectives are valid as they are the authors’ experiences. I struggle with the idea that a line has to be drawn in the sand over these posts and a side chosen. I think that these items show two very valid and real sides of the emotional coin that is ASD.

I understand when the mother states that often the reality of raising a child with ASD is varnished over to make it more palatable to the masses. I too hate when I talk about something that is hard for Little Bug and its results, only to receive a reply of “all kids have tantrums” or “all kids do X.” While I appreciate that the person saying it may be trying to either make me feel more secure in a situation I am having difficulty with or truly not understand, usually I feel isolated.

When this happens, I feel like people *don’t* understand. They don’t understand that some of the “tantrums” Little Bug has at times last a couple hours and are uncontrollable tornadoes of emotion and physical injury. To me, that isn’t a tantrum. To me, it is a crisis in which I worry about my child injuring himself or others.

I laughed when I read the words “irritability and agitation” in the study. Little Bug has an acute need for sameness. All the bottles in the shower must be placed on the same shelf every time and labels must face out. If they aren’t that way, he will refuse to get in the bathtub. While this may seem minor to you or be described as being “irritable”, it is crippling to him. He becomes incredibly “agitated” by loud noises- trucks, motorcycles, and airplanes. By agitated, I mean that he covers his head, hides under something and screams. To him, it seems to appear that there is some kind of imminent attack.

I disagree that our life is a nightmare. I believe that it has nightmarish moments- like when he tried to eat glass, tries to break out of the house because he sees something he wants outside, or when he has a fever of 102 but cannot tell me what is wrong because he doesn’t feel pain and lacks the verbal skills to understand what I am asking.

I wish that I could better identify with the self advocate. I have found myself reading more books written *by* people with ASD rather than parents. I want to know what drives the behaviors and feelings. I want to help.

I love my son deeply and fiercely. I can’t change the fact that he has Autism. I am not ashamed of him. I also am not ashamed of my feelings. I fully intend to have Little Bug read this blog. I know that he may be hurt by some things and enjoy others. I know that regardless, he will know that it was written with love and concern. Most of all, I know that I will listen to his experiences and feelings- even if I don’t like them or feel hurt by them. I will because they are real and valid.

Birthday!!!!

2009-07-28T10:10:00.001-07:00

A sharky day. A day filled with new experiences. A day to celebrate the wonderful little boy we have.

Another article regarding Gastrointestinal diseases and ASD

2009-07-27T09:02:00.001-07:00

http://news.yahoo.com/s/hsn/20090727/hl_hsn/withautismdietrestrictionsmaydomoreharmthangood

MONDAY, July 27 (HealthDay News) -- Children with autism do not have a higher incidence of gastrointestinal problems than other children, a new study has found.

However, autistic children do have a higher rate of constipation and eating issues, such as eating the same foods over and over, according to the study. But any number of factors, including medication, could cause these issues, the researchers said.

The findings appear in the August issue of Pediatrics.

Dr. Patricia Manning-Courtney, medical director of the Kelly O'Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital Medical Center, said that the study is an important one because it was the first to scientifically compare the incidence of gastrointestinal (GI) problems in an autistic population with incidence in children who are developing normally.

Even so, it's unlikely to quell a controversy that has been raging for more than a decade.

"A couple of highly publicized cases of autism and loose stools in the late 1990s led to an impression that children with autism had a higher rate of GI dysfunction," she said. "It wasn't well characterized, but that got the story onto the national scene."

This, in turn, led to theories that diets free of gluten and the milk protein casein might help the problems, along with treatment with the hormone secretin. Some even proposed that problems with the gut might be the cause of autistic symptoms, giving the matter added urgency.

But the evidence in favor of these hypotheses was "fuzzy," Manning-Courtney said.

For the new study, researchers followed 124 children with autism and 248 children without autism until they turned 18.

Gastrointestinal diagnoses were classified into five groups: constipation; diarrhea; abdominal bloating, discomfort or irritability; gastroesophageal reflux or vomiting; and feeding issues or selectivity (people with autism often stick with the same food choices and have other "ritualistic tendencies" in eating).

The frequency of GI symptoms was about 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.

However, almost 34 percent of the autistic children, compared with nearly 18 percent of the others, had constipation. Feeding issues were present in about 24 percent of the autistic children and 16 percent of those who weren't autistic, the study authors found.

Those differences could stem from what the researchers called neurobehavioral issues connected with autism, such as the ritualistic practices, they said.

"Many patients with autism insist on eating the same thing and might not consume enough fiber," said the study's lead author, Dr. Samar H. Ibrahim, a fellow in gastroenterology and instructor in pediatrics at the Mayo Clinic. "We think this may be contributing to the constipation."

Medications that autistic children take can also interfere with appetite and eating.

"In our study, around 50 percent of children were on stimulant medications, and those might affect appetite and might have something to do with issues with food," Ibrahim said.

Keith A. Young, vice chairman for research in the psychiatry and behavioral science department at Texas A&M Health Science Center College of Medicine, said he thought "the really interesting thing they found was that there wasn't any indication of celiac disease."

In the group studied, the researchers found just one case. A possible link between celiac disease and autism was proposed as far back as 1961.

"The only difference [between the two groups] was the constipation, which they kind of dismiss," Young said. "And I tend to agree with their conclusion that constipation might be related to the dietary habits of autistic kids."

The constipation and feeding difficulties identified in the study, though, are not the symptoms that people have been buzzing about, Manning-Courtney pointed out. It's mostly been about diarrhea and loose stools.

But the study was a small one and did not rely on rigorous, comprehensive diagnoses of autism for the participants, so it may just stir the pot for people on both sides of the debate.

The researchers, however, are urging parents away from restrictive diets.

"Patients with autism should be investigated the same way as normal patients when they have GI symptoms," Ibrahim said. "And doctors should do a thorough investigation before labeling them with any GI disorder because the overall incidence of any GI disorder did not differ from that of the overall population."

Manning-Courtney concurred. "For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets," she said. "They're dangerous and risky. You have to think long and hard before you, as a parent, make that choice."

Gastrointestinal diseases and ASD

2009-07-27T08:01:00.000-07:00

A new study regarding the above is out and demonstrates the following:

Autism not tied to bowel movement patterns
Thu Jul 23, 2009 3:12am IST Email | Print | Share| Single Page[-] Text [+] By David Douglas

NEW YORK (Reuters Health) - Despite some reports to the contrary, children with autistic spectrum disorders do not have bowel movement patterns that suggest gastrointestinal problems, UK researchers report.

Autistic spectrum disorders are a group of developmental conditions that hinder people's ability to communicate and build relationships. Previous studies, though inconclusive, "have described gastrointestinal symptoms in children with autism," Dr. Alan Emonds, of the Center for Child and Adolescent Health, Bristol, and colleagues note in their study in the journal Archives of Disease in Childhood.

However, based on their results, "The bowel habits of young children with autistic spectrum disorder, in general, are no different from the rest of population," Emond told Reuters Health.

Emond's team came to this conclusion after studying data from 78 children recognized as having autistic spectrum disorders and 12,906 other children without such disorders.

During the first three and a half years of life, there were no major differences between the groups in such factors as stool color, consistency, the frequency of diarrhea or constipation, and of stomach pain.

There were some children who began to have more stools per day at 30 months of age, but that "may be a secondary phenomenon related to differences in diet," the authors note.

Nevertheless, Emond noted that some older children with autistic spectrum disorders do have bowel symptoms. "It is not clear whether these symptoms are due to dietary changes or abnormalities in intestinal function associated with autism. Further research is needed."

SOURCE: Archives of Disease in Childhood, July 2009.

© Thomson Reuters 2009 All rights reserved

When reviewing this on msnbc.com, the video showed their head medical specialist stating that this means special diets do no good. While I don't necessarily agree with all of the Bio Medical interventions- chelation for example, others, like fish oil and the GFCF diet seem rather harmless.

My question is to whether from the study above, you can invalidate the experience many parents go through? While I don't think it is a cure all and firmly believe that intensive early intervention helps the most, does it hurt to try this diet or oil?

By the way, Little Bug's birthday was this Saturday and as soon as I have the pictures, you'll get a post.

Little Bug's Superhuman Feats of Oral and Gastro Intestinal Wonderment!

2009-07-23T05:32:00.000-07:00

Yesterday was like any other day. Any other day in which your child can't distinguish food items from non food items at 2 years and 362 days of age. In the past month alone, he has eaten, attempted to eat, or mouthed the following items:

Velcro*
Playdough*
Raw beans*
The plastic ring from a milk jug
The faucet on the bathtub
Paper clip
Rubber band
Matchbox car wheels*
House Keys
Yarn*
Sticks
Rocks*
Sand*
The kitchen Table
The living room table
The coffee table
Baby wipes*
Soap*

(the items with astericks next to them were successfully consumed.)

Yesterday far exceeded all previous performances. We were in the yard playing with our neighbor's daughter. In the time it took me to turn around to say hello to our neightbor, Little Bug found a piece of glass that was 2 inches long and BEGAN TO EAT IT!

I rushed over to him, which means that he tried to swallow it as that is what he does, and tackled him to the ground and forced his mouth open in order to get the glass out. My poor neighbor is standing there as I force Little Bug to keep his mouth open so that I can see if there are any shatters of glass. (There weren't, just several cuts along the sides of his mouth.)

She looked at me and shook her head. "But that was glass! He didn't cry? Can't he feel it?"

I tried to explain that we don't know. Her response was to look at Little Bug and say, " You will be the best side show performer ever!"

We are lost and don't know what to do about this. While I understand that *nothing* happened, what could have happened plagues me. Please, if you have any ideas, send them our way.

Book Review

2009-07-22T05:57:00.000-07:00

I have gotten back into the swing of ASD research and wanted to share some of my experiences.

The first book is "Daniel Isn't Talking" by Marti Leimbach. It is a fictional account of one mother's trip down diagnosis lane. I found this book to be comforting. It speaks honestly to the fears, worries, and greif that I went through. The difficulty that the main character- Melanie- had pre-diagnosis, the waiting for something to go wrong, knowing something was wrong but not really "knowing" it, was familiar.

The second book is called "Autism Life Skills" by Chantal Sicile Kira. I found this book to be informative as it provided a nice insight into the what people *on* the spectrum want. So often we speak for our children and write the books ourselves. We speak from our experiences and view point. While most of the items on this list are common sense, the perspective provided and the why's and how's were interesting.

I did find it a bit overwhelming emotionally. Reviewing items such as abuse prevention, living situations, and employment are difficult to digest. This will be a book that I keep on my shelf and refer back to.

Recently, I have found myself back at that point where the ASD diagnosis is painful. Most days, it is okay, however like any grief cycle- which most of us go through- you come full circle and find yourself experiencing the same difficutlies. As a person who has lost three parents, I can tell you that it doesn't go away per se, it just gets easier. The times when it hurts gets further and further apart.

Right now, it is raw again. Maybe because of it is the anniversary or because of the books of nerves from taking the training wheels off. Regardless, I have found that trying to look at the long term- like the material above- is overwhelming.

No more training wheels

2009-07-21T06:00:00.000-07:00

This is Little Bug's last week at Birth to Three. Nick and I are a bit panicked. For us, this means that we no longer have a team of 5 highly educated, informed, and dedicated people supporting us through this.

This journey has been amazing. Everyone wants to give Nick and I all the credit- "Your follow through at home is amazing!" or "You two must work really hard with him!"- forgetting that we couldn't do this without our team.

Our team has helped us come up with such simple strategies that we never would have thought of. They have done crisis interventions for when Little Bug's self injuring behavior was getting worse.

They have been there to set realistic expectations for us as parents and to set the bar high for Little Bug. They have never accepted can't or won't but will.

I feel a huge sense of loss at this turning point. I also feel lost. I know we will get through this and innovate and come up with therapies. For now, all I can think is that I would love to give them the world and yet I know that that would never be enough. I can't ever tell them how grateful we are.

Seriously hair raising

2009-07-14T06:57:00.000-07:00

So last night, Nick and I apparently lost our minds because we decided to do our twice a year hair cut for Little Bug. I remember now why it is only twice a year.

Even before a single hair on his head was cut, the screaming began. Nick tried to distract him with some sea life, however, that can only do so much. I began to wet his hair down in order to cut it and he began to gag himself.

Once I began to try to cut his hair, he began to shake his head as fast as he could while pinching and biting himself.

Amazingly, he still has both of his ears and eyes and not a scratch on him. His hair is even- how that happened I don't know. Nick and I both needed a break and half a beer in order to bring the nerves back down.

Once he was done getting his hair cut- or if you were walking by my house, tortured and then murdered slowly- he took a bath and was absolutely fine.

I wish there was a way to make this better. I have tried cutting his hair with and without clothes on. With hot and cold water. None of it matters. While I understand that I could pay someone to do this, I can only imagine how traumatizing that would be to them and Little Bug.

It is a gift

2009-07-09T07:19:00.000-07:00

I marvel at Little Bug every day, but have been more so recently as the anniversary of his diagnosis has come. I know I have neglected this blog, but I needed some space to appreciate from a distance this gift. Granted a year ago, this was not a gift in any sense of the words. This was a cruel joke that knocked me on my ass and took my breath away. It paralyzed us with fear and tortured us mentally.

I look at where he has come from and I am astonished. A year ago, he had ten words. Think about that for a minute. Ten. Words.

He couldn’t tell us whether he was hungry, thirsty, soiled, or tired. He couldn’t tell us what he wanted to do. He didn’t look at us in the eye almost ever. Little Bug couldn’t dress himself; he couldn’t use a fork or spoon. He didn’t play with other children or even tolerate them in his general vicinity.

When we started at Birth to Three, he didn’t participate in the activities. He still had 10 words but several signs. He couldn’t sit at art time or circle time. A majority of his time was spent screaming and biting himself. When he wasn’t doing those things, he was screaming and trying to bite other people.

Gradually, he has become more tolerant of other children. He is now taking turns with his therapists and seeking out a familiar peer consistently. A friend.
He can now say so many words that I have lost count. I wasn’t sure that we would get to that day. He is saying sentences and asking questions, “What you doing?” or “What happened?” He is now asking to play with the neighbor’s children.

This is a gift that we marvel at every day. We stop and look at each other when the amazing things happen. Our mouths hang open and tears rush to our eyes. We are left speechless and breathless.

And yet, there are people in Little Bug’s life who don’t see this. To them, this is boringly normal. Of course he would say sentences. They don’t grasp what obstacles all of our children in this community overcome. The 40 hour work week our children endure to learn how to play. They don’t understand that it takes for our children to simply be okay with loud noises, people, or bright lights.

To them, everyone can do it. It is assumed that everyone will go to school with “normal” kids. That they will graduate, get a job, and form relationships.
We know that the above goals are not assumed. That our children will work arduously in order to achieve each and every one of them. That we will work strenuously to give them each and every opportunity to succeed that we can. We will hope fervently and worry insanely.

My heart aches that the experiences our children go through are belittled as normal. It is funny how normal has become such a dismissive term to me. I realize that most parents of children with disabilities and most people with disabilities strive for normalcy in their life. Just don’t forget that what we all do to achieve normalcy is extraordinary.

I am in awe of the parents who work with their children in order to help them achieve goals- whether it is being able to go to school or tolerate hugs. I am in awe of the people with disabilities that remind us to look at life from a new perspective. Thank you all- Little Bug, J Man, Bee (you know who you are) Uncle, and your families and therapists for giving me this perspective. You are an extraordinary gift that I will always treasure.

IEP meeting results

2009-07-08T11:51:00.000-07:00

Sorry for the delay... things have been a bit hectic in a mundane way.

We had the IEP meeting, and for the most part, it went well. Little Bug will be going to a special education preschool for 2.5 hours a day 4 days a week.

The meeting starting off a bit rocky as the school district had the IEP completed and stated that they would review it so we could sign it. Given that Nick and I had created three IEP goals for Little Bug's social, adaptive, and speech concerns, this didn't go well.

Luckily, the school backed down quickly and included our ideas. Surprisingly, the only idea they seemed hestitant to include was a goal about him sitting in a chair for at least 5 minutes. Of all the goals to argue about, that was the one I never would have expected.

They thought that if he watched other children do it, he would. We explained, and his current therapists confirmed, that it doesn't work that way. It is simply difficult for him to sit in a chair.

For additional services, he will receive 30 minuts a week of speech and OT.

As we are winding down his stay at Birth to Three, we are trying to flesh out our home program for the summer. We are getting on some waiting lists for OT, will be continuing speech therapy with his current therapist, and have asked his Autism therapist for a list of 10 things to work on for the summer.

All in all pretty successful.

Fourth of July on the other hand, was not successful. Little Bug's auditory defensiveness is increasing. He spent the whole day hiding in the bushes- first because of the airshow practice, then the airshow itself, then the fire trucks, and finally the local fireworks.

He has begun to scream and cover his ears in public whenever there is music, clapping, chopping- at restaraunts, and any other loud noise. We are unsure how to deal with this without going down the noise cancelling head phone road.

In other news, he will be three in 17 days.

IEP tomorrow

2009-06-29T05:29:00.000-07:00

Like it says, its tomorrow. Hopefully, things will go as planned. Hopefully, we won't have to be the total hard asses we are planning to be. I really think that with the SLP and the special education teacher we met at his evaluations running the IEP, it should be fine.

Regardless, we are prepared. We have a list of three goals for Speech, Adaptive, and Social/ Emotional development that we have come up. We are also trying to come up a Positive Behavioral Intervention Plan. Given the information about corrective actons- strapping a child into a chair designed for low tone without an explanation- we want to be sure that we have something in place.

Little Bug is humming along marveously. He is beginning to pretend in unscripted ways. Last night, his trucks had a conversation:

TRUCK 1- falls down and says- DAMMIT! (i know we need to work on that)
TRUCK 2- Help you?
TRUCK 1- Peese help!
TRUCK 2- One second, one second. (drives over rather slowly) What doing?
TRUCK 1- Fall down
TRUCK 2- It otay. Get up! (pushes Truck 1 upright)
TRUCK 1- Thank you!
TRUCK 2- Welcome! Be safe! (crashes repeatedly into our dog Frank's leg and then is carried away by his jaws of death)

Minus the swear word- which is mild considering what his daddies' have unthinkingly said- this was amazing! He didn't have anyone prompt him or help him. He just did it. Now, we just need to transfer this over to actual interaction with people- especially peers. Interaction never goes this way in real life.

Dare I say it?

2009-06-18T07:23:00.000-07:00

Little Bug got a new big boy bed last night courtesy of the Nas-Nas. He was so excited that he shook. He ran around telling us about his big boy bed- BROWN! BIG! Yeena's!

After Nick and I got it put together- which for an Ikea piece of furniture involved very little cursing or yelling- Little Bug immediately scrambled up on to it.

He demanded sheets, which we didn't have for a twin. I managed to oragami style make the bed with a queen sheet. He asked for his pillow, a minky- that's binky to you, and a milkshake (that is what he calls his milk. It gets him to drink it, so really, I am not going to be too specific.)

He wanted to lay down in it and go to sleep. He was pretty miffed that I wasn't going to sleep with him. Yells for Daddy BAKE echoed for a while. He finally quieted down and then came back to our bed.

It seems as though we won't be co-sleeping too much longer. He is becoming more independent every day.

He has begun to sit and pee on the potty- of his volition. He has, in fact, earned two potty reweards.

He can now take most of his clothes- damn those shirts- off by himself. He can also put his pants, little swimmers, and socks and shoes on by himself.

I know that most people are excited when their kids can do these things. For the most part I am. I have to admit that with school coming in the fall and these independent actions, I feel a little lost. Little Bug has been so dependent on us for so much longer than most kids, that these bursts of independence leave me feeling a little lost.

Little Bug's evaluations

2009-06-06T05:27:00.000-07:00

They went amazing! The team involved were really personable and took the time to really get to know Little Bug and us. I am sure that this is built in to a certain degree- as it was obvious that they had an interview portion for the parents with a list of questions and then moved on to the evaluations- but they seem to go above an beyond with us. They scheduled our time away from the normal cattle call affair.

For cognitive, they used the Battelle test and Little Bug scored a 95 without hitting a ceiling. He was having trouble sitting, so that made all the tests take longer and they gave us the option of moving on to a new test or hitting a ceiling with him. We chose moving on because he still had fine motor evaluations and it was getting to be nap time.

For gross motor, they cancelled the evaluation based on his performance throughout the day. The PT came by, but stated that because what she had seen him do, she didn't feel an evaluation was necessary. Nick and I agreed as that has never been a concern with our little Houdini.

For Speech, they didn't hit a ceiling and he was performing with some errors into the 42 to 47 month range. She was concerned about the amount of echoing he was doing and also about some of the pronunciations of words. She also said that his utterances weren't long enough and that he wasn't forming functional sentences- more just commenting by placing two words together.

For fine motor, he aced everything at a 4 to 5 year old level except for the writing portion which he did at a 3 year old level. The OT gave us recommendations for activities to better his grip at home.

Recommendations:

The ASD Program director was with us during the interview part and made it clear that she felt an Autism Preschool would be good for Lennon because of the extended day program. She really advocated for class from hell, but we calmly and politely explained that we didn't feel it was structured enough based on our visit and that it appeared to be to made up of a lot of unstructured play time. She thought that we might wasnt to go visit another program. It was interesting that in this discussion, recommendations weren't made by her and the PT based off of the closest school, but which school they felt he would have the best peers. This was different from when the Special Education director came to our house because he stressed closest above all else. I don't think we heard him say "appropriate" without including the phrase "the closest school with"...

speech- one on one speech at school as well as group
OT- available to deal with sensory issues but no individualized therapy.

The SLP and the Special Education teacher felt that Little Bug should be placed in general special education preschool. The teacher felt that he was past a lot of the kids placed in the ASD program and that the regular special education groups would make better peers. We stated that we felt that this would be the appropriate route, however we did not feel that 2 days a week would be consistent enough for him. They said that its normally up to his teacher to make that determination, but that they could ask the director on our behalf if Little Bug would be allowed 4 days. I heard them ask him and his response was- Damn straight he needs 4 days.

Its funny how nothing turned out as badly as we thought it would. Now, Nick and I are going to focus on writing starter IEP goals as well as a positive intervention plan to bring to the IEP meeting. We are hoping to have them done so that our team can review before the meeting and give feedback.

Funny side note, I received my own set of recommendations during the meeting. They continuously asked if Nick and I were educators or therapists, and our answer was no- we read a lot of books and pay attention. The ASD director and I talked about video modeling, ABA, task analysis and she asked me, have you thought about being an educator? You could at least be a consultant to other parents. It was a huge ego boost.

They kept telling us that they were amazed at how far he had come- based off of his report from our Neurologist, his original Vineland, as well as his IFSP from the county. They stated that we must do an amazing job of following through at home and that he was lucky to have us. We said thank you over and over again and were honestly quite surprised. We were expecting the no nonsense abruptness that has been our previous contact with the school district and we treated amazingly well.

Transition Report

2009-06-03T05:35:00.000-07:00

As we get ready for Little Bug's IEP evaluation and meeting, we have been getting his reports in order. I wanted to share with you his transition report for his current program.

Attendance history:
Little Bug receives education services from XXXX in the form of 2 60-minute one-on-one sessions (one at home and one at the center) per week and 3 90-minute developmental playgroup sessions per week. Little Bug has excellent attendance and has only missed playgroup and one-on-one education sessions due to illness and doctor’s appointments.
Little Bug also receives 1 60 minute occupational therapy session and one speech therapy session every week. Information regarding occupational and speech therapy services can be found in separate reports.

Student’s interests & strengths:
Little Bug is an extremely bright, endearing little boy who enjoys playgroup and playing with his therapists. Some of his favorite activities include playing with play dough, drawing with markers, stringing beads, completing puzzles, and playing in the sandbox or sensory table. Little Bug loves sea life, particularly sharks, and will happily point out any shark or ocean creature that is visible to him. 

Little Bug is very social and will initiate play with adults. When he started our program, Little Bug primarily used signs (up to 60 signs were used without prompting) and single words to communicate. Currently, he uses 2-3 word utterances unprompted.

Little Bug also uses a point to request and comment. Lately, he has become extremely proficient at using a point paired with eye contact to comment.

Student’s areas of challenge & helpful instructional strategies:

Little Bug has moments where he is inflexible in his play. For example, wanting his trains to go only a certain direction on the tracks, getting frustrated when a shark is drawn on his paper without a fin or eye, or becoming upset if he gets the wrong color bowl at snack time. Little Bug has been working through these incidents with adult support encouraging him to “be flexible.” Little Bug also may become stuck on a highly preferred activity such as outdoor push cars & lawnmowers, trains, and other toy vehicles. He usually needs adult support to calmly transition to a new activity. Occasionally he needs to go take a break in a “calm down” area when these events happen. Little Bug has begun spontaneously choosing to go over to the “calm area” and look at a book when he becomes upset. He typically calms within a couple of minutes and makes a new activity choice.

Notes on IFSP goals & present levels/progress:
Little Bug will use a variety of two-word combinations to request, comment, and protest. To request, Little Bug will often use the sentence stem “want ____.” Lately, he will often self-correct himself and say, “I want ____ please.” We are now working on expanding Lennon’s expressive language to include more of a variety of commenting stems. For example, “I have ___,” “I see____,” and “It’s a ____.” Progress made.

Little Bug will use at least 5 descriptive (i.e. big, little, pretty, soft, etc.) words when he comments on an object or picture. Little Bug has independently used “big” and “little” when commenting about objects, as well as saying their respective colors if applicable, but has not expanded beyond that. He will imitate an adult who uses “pretty” or “soft.” Progress made.

Little Bug will correctly answer yes/no questions when asked. Little Bug answers “yes” and “no” to both preferred and non-preferred objects as well as answering to the identity of an object (i.e. is this a dog?) the majority of the time. Lately, Little Bug has been repeating the name of the object instead of answering “yes” or “no” to preference questions. Goal almost met!

Little Bug will receptively identify a) shapes b) colors c) actions in pictures d) attributes. Little Bug is able to identify circle, star, square, triangle, and triangle, as well as blue, green, red, yellow, orange, and purple. Little Bug has identified many actions in pictures including walking, jumping, crying, blowing, sleeping, and eating. For attributes, Little Bug is able to identify big and little independently. a) Goal met b) Goal met c) Goal met d) Progress made.

Little Bug will follow two- step directions a) with contextual cues b) without contextual cues. Currently, Little Bug needs contextual cues to successfully complete a two-step direction, although he has followed a few directions independently. Progress made.

Little Bug will interact with peers by a) initiating social interactions with peers in a variety of ways (throws a ball to another child, asks for a turn with a toy) b) maintaining a social interaction (waits for the other child to throw the ball back, waits while the other child takes a turn and then asks for another turn).
Little Bug will give peers a high five or give them an item with a verbal reminder from an adult. Little Bug consistently holds hands with familiar peers with a verbal direction from an adult. He rolls a ball back and forth or plays chase with a peer with adult physical and verbal support. Little Bug independently maintained an interaction of holding hands with one of his peers during a game of “Red Light, Green Light” and is beginning to independently seek out a peer to hold his or her hand during this game. Little Bug also maintained rolling a ball up and down the slide to a peer for multiple turns with minimal adult support. Little Bug has begun identifying familiar peers by their names. Progress made.

Little Bug will remain calm when told that it is time to be all done with a preferred activity and transition to a new activity with a verbal reminder. In one-on-one, Little Bug does a nice job of ending a preferred activity and choosing a new activity when given a warning. Occasionally, Little Bug needs help choosing the next activity and needs an adult to give him a choice, but is mostly independent in this task. In a playgroup setting, he is now doing a nice job of ending play with push toys & ride on toys during outside time, but continues to struggle with ending play with highly preferred toys like trains and vehicles during indoor play. Little Bug is given a warning that an activity will be ending and sometimes a timer is used to make it clear when it is time to be all done. If he becomes upset, he is given a chance to “take a break” or sit in a “calm down” area until he is ready to make a new activity choice. Progress Made.

Little Bug will identify objects by a) function (what the object is used for) b) feature (identifiable characteristics) c) class (i.e. animals, food, etc.). Little Bug has identified the following items by function: fork, spoon, bed, book, car, toothbrush, and chair. Feature: wheels, tail, laces, wings, and house. Little Bug has sorted the following items by class: animals, food, vehicles, shapes, colors, and people. a) Goal met b) Goal met c) Goal met!

Little Bug will demonstrate a concept of one (i.e. when the teacher holds out a handful of crackers and says “Take one,” Little Bug takes only one cracker). Little Bug does a fantastic job of taking only one item when asked to do so. He has demonstrated this skill with fish crackers, pegs, balls, and markers. He demonstrates this skill in a group setting as well. Goal met!

Little Bug will engage in turn taking exchanges a) first with adults and b) then with peers by requesting a turn, taking his turn, & giving the item back to the other person when they request a turn. a) When taking turns with adults, Little Bug has become better about waiting his turn. He sometimes needs an adult to say, “wait” and help him count (usually to 5) while the adult takes his turn. Little Bug can play a simpler version of Cariboo or Barnyard Bingo with up to 3 adults. b) With most items and simple games like Cariboo or Tic Tac Tony, Little Bug can take short turns with peers with adult support. Adult support may include verbally reminding Little Bug to give the item to his peer, verbally reminding him to “wait”, or helping him count while he waits. Little Bug struggles some with sharing highly preferred items like vehicles or sea life, but has made a lot of progress! For example, Little Bug will calmly play with trains alongside other children that are playing with trains. With an adult near him, he will play with his trains with few to no attempts to grab the trains other children are playing with. Progress made.

Little Bug will independently participate in group activities, such as snack time and circle time, by: a) sitting and attending for 5-10 minutes b)imitating adults actions with & without objects c) following routine directions. a) Little Bug sits and attends to snack times without an adult sitting behind him, but needs verbal reminders to stay seated on average three times during a 10-15 minute snack time. Little Bug and joins and participates in routine group games like parachute time & “Red Light, Green Light”. Little Bug attends to circle time without a parent sitting nearby. He sometimes needs adult support to join the beginning of circle and a teaching assistant sits a few feet away during circle time. Very recently, Little Bug has had difficulty with inflexibility during circle including crying or laying down on the floor when he gets the wrong color of circle prop or when a song is selected that he doesn’t want. If the rest of the group continues with the song, Little Bug is usually able to self calm and participate in circle time. Goal Nearly Met. b) Little Bug imitates a wide variety of routine actions at snack time and actions with and without objects in preferred circle time songs. Goal Met. c) Little Bug follows familiar directions within the context of group routines like snack, circle, and parachute time. Goal Met.

Again, Again!

2009-06-03T05:29:00.000-07:00

That's right, Little Bug did it again! He asked to go on the potty last night and successfully went.

He won't go when we ask him- only when he wants to. I am not sure how hard core we should be about this. To me, it seems like the more casual we are about it, the more likely there will be success for him as he will feel that he is in control.

Unbelievable!

2009-06-02T05:54:00.000-07:00

I believe that Little Bug has a check list of ways to one up our expectations. For example, yesterday during therapy, we were telling therapist A that Little Bug was counting to 7 by himself. She congratulated him by saying, "Little Bug, I'm so excited to hear that you can count to seven!" He answer, "Eight... Nine... Ten..." very casually while playing with his toys.

Of course, that was a small feat compared to his other development. On Saturday, I was giving him a bath and he stood up and said, "Want potty!". He then climbed out of the bath tub and sat on the big potty. He didn't do anything on it, but it was super exciting to see him be interested.

Not to be outdone by himself, on Sunday, he took his diaper off, and asked for the potty again. This time, he used it. He peed in the potty! We were so excited for him.

Now, not to say that he is anywhere close to potty trained- he very much is about doing this on his terms- but this is a really exciting development. We haven't been offering or even thinking about it, so for him to suddenly be interested in it is amazing.

Wish us luck and dryness! ;)

Chewbacca Defense anyone?

2009-05-28T06:20:00.000-07:00

I don't know if any of you watch South Park, but yesterday's conversations with Little Bug reminded me of the Chewbacca Defense. Here's the link, but be ware that there are plenty of bad words in it...

http://www.southparkstudios.com/clips/103454/?searchterm=Chef+Aid

Little Bug has been having difficulty with eating again, but more in a "I'm finally 2 developmentally and I am going to push your buttons" way then in a sensory way. This of course means that at dinnertime there are tons of negotiations. I put food on his plate and he immediately yells Yucky and pushes the plate away. We eventually divide up the plate to the point where I get him to eat what he wants and he doesn't complain so much.

Last night, he used a beautiful argument- HIPPO! This was shouted, whispered, and said every time we asked him to eat. What might you ask does this have to do with dinner? NOTHING! That is what makes it a beautiful argument. It distracts you from the point at hand and is ridiculous and forces you to not be so frustrated. All the while, the child gets to not eat his dinner as you are mulling what Hippo could mean- was there a hippo on his plate, did we talk about hippos, is it animal month at school?

Nope, just Hippos. Much like the Chewbacca Defense, it has *nothing* to do with the subject at hand, and yet is hard to argue with.

One day, Little Bug may well create a new defense- the HIPPO defense. Heaven knows that he thoroughly distracted me with it many times last night. Now, if I could only use the Hippo defense as a grownup....

That's what I said!

2009-05-27T05:41:00.000-07:00

On January 30th, I wrote a post about the Transporters. The short of it is that while is it great that people are looking into creating more resources for the social emotional development of children with ASD, why are we reinventing the wheel? I talked about how we use Thoas the Tank Engine to help Little Bug work on emotions.

Apparently, we aren't the only ones:

http://www.cnn.com/2009/HEALTH/05/27/autism.thomas.engine/index.html

Autism Spectrum Australia (Aspect), a nonprofit that provides services to people diagnosed with the developmental disorder, unveiled the game on its Web site Tuesday.

The game asks players to recognize which engine has a sad face, or which is happy or angry.

Children with autism often have a difficult time distinguishing different facial expressions.

Each time a child plays the game, he/she is presented with a different sequence of emotions. In doing so, the game takes advantage of the single-mindedness of autistic children to assist in their development.

"It's a great way to help develop social and communication skills," said Anthony Warren of Aspect

A study conducted in the United Kingdom found that autistic children were far more fascinated by the television series, "Thomas and Friends," than they were with other fictional characters.

The study, by the National Autistic Society, summarized that the show held such appeal because of the clear facial expressions of the characters, the pacing of the program and the easy-to-follow story lines.

"We got those results down here, and we thought, how could we leverage that strength and give a little back to the community?" said Tom Punch with Haven Licensing, the company that handles licensing for the characters in Australia.

I have often joked that a singled minded obsession with Thomas should be added to the DSM for ASD.... maybe I wasn't that far off.

The IEP Saga continues

2009-05-20T06:33:00.000-07:00

We received the email from the school district that we have been dreading- the testing and IEP dates and information. Little Bug's evaluations will be done independent from the normal cattle call affair on June 5th. They usually have 10 or more families come in and run the kids through stations. Because we have requested the ASD specialist for the district attend, Little Bug will be tested by himself.

We also received the date for his IEP meeting- June 30th. We were originally concerned that because this occurs after the last day of school it would result in a generic IEP and another meeting specific to Little Bug's needs in the fall. Luckily, it won't.

Unfortunately, that is where the bad news comes in. The attendees will include the evaluators from whatever area Little Bug qualifies in as well as the ASD specialist and the teacher from the our last classroom visit. The classroom that we hated. The classroom that was utter chaos. The classroom that made us feel it would be better to leave Little Bug with wolves for 5 hours a day than the school district.

The school district has tipped their hand. By including this teacher, they have shown us that in their eyes, Little Bug is destined for an ASD environment. You see, the teacher the student will have is the teacher who helps create your child's IEP.

Nick and I are at a loss. This doesn't match with what we want for him. It doesn't seem like the most appropriate environment for him. It also doesn't match what his current therapists are recommending. They feel that because of how far Little Bug has come and the amount of work and follow through that Nick and I put into this, Little Bug should be able to do the Special Education classroom as well as see a behaviorist every other month. He will need weekly speech and OT.

We are trying to wrap our heads and hearts around this and come up with a plan.

Honesty

2009-05-16T06:10:00.000-07:00

Please click through the link below and read the article. While it isn't a pretty or happy reality- for anyone involved Noah, his parents, and his brother- it is incredibly honest.

http://www.time.com/time/magazine/article/0,9171,1898322-1,00.html

I am touched by the honesty of the author. He realizes that this resolution isn't a happy or ideal one. He acknowledges that he may not always be able to be the stable influence that his parents were. He acknowledges that his brother will never recover.

Another article that I found this week that left me reeling was this one:

http://news.yahoo.com/s/ap/20090509/ap_on_he_me/us_med_autism_recovery;_ylt=ApAU33Cxt5qcB.l52vsO4hjgcbYF

I couldn't help but read it and wonder at my own view. Do I not believe in recovery because of my fear of hope? If you haven't realized yet, I am a realist- that means that I deal with the facts and try to squash any hope as I don't want to delude myself into wishing for something that may not happen.

In reading the article, I found one line that I couldn't let go of-

Many also have above-average IQs and had been diagnosed with relatively mild cases of autism. At age 2, many were within the normal range for motor development, able to walk, climb and hold a pencil.

While Little Bug isn't diagnosed as mild- he is in the middle of that bell curve of the spectrum- everyone who meets him talks about how bright he is and how is able to do all those things listed above.

I know part of me is afraid of the idea of recovery as I don't know if people can change that much. While a tremendous amount of change has happened, my argument has always been that a person is never cured from Autism. It never leaves them, but simply changes. The severity lessens and the manifestations changes.

Could I be wrong? Should I hope for recovery? Or prepare for nothing to change?

Knowing me, I will most likely trudge on without hoping for a change. Without planning for a recovery. We will prepare for Little Bug to never be independent or get a job. We will continue saving for his future while neglect our own. We will continue finding resources for after we are gone. I would rather be the ants who are prepared for winter and be pleasantly surprised when winter never comes.