Weekend Wrap up

We went down to Grandma and Grandpa's house this weekend and we had so much fun! Grandma and Grandpa once again prove that they are AMAZING! They took the opportunity to make copies of the sign DVDs and began using sign with Little Bug. This makes my heart so happy- they really believe and they really want to try. It was so nice to see them. Luckily, we get to spend more time

We had a great time hanging out down there. We put our dog Frank outside with their dog and I have never seen such a tired puppy as Frank. He must have thought that he died and went to heaven.

We started Little Bug's Autism Education class yesterday. Amanda came to our house and she was so nice. We got to decide his goals and begin to nail down some of the questions we had regarding them. She seems really willing to help above and beyond what she needs to do- for example, I told her about the picture schedule I was making, and she offered to laminate things and print off pictures. She agreed with us that a PECS - Picture Exchange Communication System- should not be used for Little Bug as he is doing so well on sign.

It nice to hear *good* things for a change. It seems like it has been a really long time that we have been told that he is good at something or that he is excelling. Amanda said that the toddler level puzzles she has are too easy for Little Bug and that she needs to find things that will truly challenge him.

Pizza, Candy, and Rootbeer- OH MY!

So last night, Little Bug must have thought the he went to heaven because he had vegetarian pizza for dinner, a few sips of rootbeer, and more gummi worms, etc. than I care to admit. He did really well at the play therapy yesterday and this was sort of a treat. For all those concerned about associating foods with emotions- get over it. Last week, his treat was getting to visit the fish at Pets Mart.

The person who did our intake and did a very bad job at our meeting with Birth to Three was his substitute teacher yesterday. She was amazed at how much eye contact he was making and that he had over thirty signs.

DN and I reviewed his goals and have lots of feedback for his Autism teacher on Monday, so that should be a great meeting. it will be here at the house. This was one of Birth to Three's strokes of genius- have therapies both in home and at center so that children develop skills that are not specific to a location, but to a behaviour. Often time, kiddos with ASD will develop scripted behaviour based on a location and are unable to easily translate that skill to another location. For example, a child may learn how to appropriately self soothe in the classroom environment, but be unable to do so at home as they do not have the correct script in place for that behaviour. By mirroring the therapies at home and center, this will create a ton of consistency for Little Bug and provide him with skills that follow him through life. This is a huge and incredibly important challenge. We aren't just talking playing games and teaching manners, we are talking about providing him the skills to be a independent functioning member of society.

Well, time to get in the deep end of the pool. But first, I would like to leave you with a song that I absolutely love:
http://www.youtube.com/watch?v=OF9UB_xrhMI&feature=related

Nobody expects the Spanish Inquisition!

Nobody expects the Spanish Inquisition. That has got to be one of the *best* lines ever from Monty Python and it is also in one of my favorite movies- Sliding Doors. If you haven't seen it, rent it. If you can't rent it, let me know and I will loan it to you. It sums up how random ASD can be- basically, it is consistently inconsistent. Sensory issues come and go and change. Progress and Regression are interchangeable characters in our world. You never know what to expect, but you continue to hope and wish. There are days when your heart aches because of something another child does that you know your child can't do. There are days when you heart explodes because you see your child do something that you never thought they could do. It is a roller coaster- keep your hands and arms inside the ride at all times.

I was looking over Little Bug's list of words, and realized that I left off some words that he can say:
APPLE
Fo- foot
Fish
Bus
Ca-ca- Car (and you thought it was dirty ;) )
Rek- Shrek
Shoes
Rocks- Socks
Nice

This makes my heart explode- as MA says- because in a month, his vocabulary has increased from 10 spoken words to 20 spoken words and over 30 signs! THIS IS AMAZING! While some people would point out that he is still behind, I say AND? We must always celebrate each and every accomplishment. We have to also look forward, and while that is a scary thought some days- I know that Little Bug will continue to grow in his own way and at his own pace.

Yesterday he went to the Play Place with DN and met M and J. They were able to stay for an hour and a half because Little Bug did so well. Normally, the Play Place is a feared place for parents as we worry for other kids. Not yesterday- he only pushed twice!

Last night, Little Bug did the funniest and most disgusting thing I think I have seen. He licked DN in the face- which made DN laugh. So OF COURSE you have to do it again! So eventually Little Bug had DN laughing so hard, he was laying on the ground which allowed him and our dog Frank to both advance their licking attacks on DN.

Yeah, we’re weird- get used to it.

Off with his feet!

We had a bit of a stressful night last night. Little Bug had several meltdowns- which are specifically different from a temper tantrum in that he *can't* stop them. There isn't any distracting him from them and they can take an incredibly long time to go away. This is one of things that we are going to be working on with his therapists.

The huge problem of the night last night was his pajamas. We have only one car and that means that at 3:45 AM every morning I work, DN and Little Bug have to take me to work. So, I thought, lets make things easier on everyone and get him some footy pajamas. WRONG! He hardly slept last night because of the feet on his pajamas. He continuously woke up and would put his feet in the air and cry. Obviously, this is a *huge* sensory issue.

This means that his pajamas will be losing their feet. Hopefully, once the feet are removed things will go smoother.

Another issue Little Bug has is repetitive behaviour. It is compulsive and he cannot control it and should you interrupt the cycle, there will be hell to pay. However, there comes a line at when to let the behaviour continue and when to intervene. Last night, Little Bug was smashing his fingers repetitively in a DVD case- over and over and over again, taking turns on each hand. It was leaving red marks and no amount of saying "no!" or "owie!" would get through to him. So I took the DVD case away. He cried himself to sleep because he couldn't smash his fingers. It made my heart ache and all I could do was hold him and cry too.

There are times when I feel like what we do to shelter him- like not letting him smash his fingers or any other kind of self injuring- hurts him a lot more than the action. But there is a fine line as to when to intervene and when not to, I just don't think we have it figured out yet. I hope he knows that while we don't understand all his choices and he doesn't understand all of ours, all of our actions are done out of love for him.

One step forward, Two steps back

So the wonderful speech therapist our FRC found is not covered by our insurance and we simply cannot afford to pay for it out of pocket. It breaks my heart that Little Bug's learning is based on how much we make.

Someone suggested that we look into Disability for Little Bug to cover the cost of therapy. We did their online survey and we make too much money. Talk about a rock and a hard place. I imagine this is the theme for a lot of families dealing with Autism.

We received his goals for Play Therapy and they are quite lofty. It makes my heart race to think how we are going to help him accomplish this. He is a brilliant kid and I know that he can do it.

Falling into Place

We have got great news!!!! Our amazing FRC found us a speech therapist in Federal Way who has an immediate opening for Little Bug on her roster. She uses the PROMPT method of teaching- which is basically a serious of rapid prompts to get a child to complete a specific task- speech, dressing, self soothing, etc. Our FRC is referring us and *hopefully* we should hear something soon.

Yesterday we meet Little Bug's Autism Education teacher and got the schedule for that- she will be doing a home visit on Mondays and Little Bug will be doing in center on Wednesdays. The point of this is to get Little Bug to be able to take skills from the center and apply them at home. I am not sure what this entails exactly or what we will be working on.

We should be getting his goals for playgroup shortly. I know one thing he will need to work on is receptive language- i.e. understanding what is being said to him. I have to say, this is a bit overwhelming because we are doing the best we can. I know that they will give us lots of tips and tricks.

On the upside, while days are becoming more and more packed with therapies, Little Bug will be getting the help he needs. This is really exciting and I am hoping that we will see a lot of progress. The only piece left is Occupational Therapy.

To keep track of his progress, I thought I would document what he can say and sign at this point in time. This will let us check in and see how he is progressing.

Spoken Words:
Ma
Da
Bubble
Do- dog
La- water
Bo- boat
diddy- kitty
Des- Pleiades- MA's dog
No
Go
Yup!

Sign:
My Turn
Together
More
Eat
Drink
Go
Sleep
Bath
Potty
Cat
Dog
Cow
Horse
Duck
Bird
Fish
Milk
Apple
Cereal
Boat
Water
Mom
Dad
Please
Thanks
Help
Ball
Baby
Caterpillar
Sign
Time
Shoes
Socks
Diaper
Car
Train

Round Two!

Yesterday, Little Bug's biting had improved a lot- only two attempts and 1 hit landed. Much better than 7. He has play therapy again today and we are all a little nervous about it. I know that this is best thing for him- I'm just hoping that he will realize that too after he gets used to it. Right now, I realize that this is all super stressful for him- lots of kids that he can't escape, new routines and expectations, sudden touches, and lots of attention. All of that is pretty much a recipe for stress. Hopefully, it will become a recipe for success.

MA will be attending for the first time today and we gave her the list of tips for him- basically, keep him out of the play kitchen, take him to the sand box when he gets too excited, and be ready to be bitten to keep another kid from being bitten.

We'll see how it goes and let you know.

Bruised but made it!

Yesterday, Little Bug started Play Therapy at Birth to Three. Overall, he did really well. They started out with really little goals for him-at Snack Time while most other kids are expected to stay the entire time, they asked him to stay for a minute and a half. He stayed for much longer than that, but did get up before the other kids.

He did his usual whirlwind action- going from toy to toy to toy- like a particle bouncing around in space. He didn't stay with the group much- there wasn't really any playing with other children. He did take part in art time- they were super impressed that he could color. We also found out that he knows how to use a paint brush properly- holding it correctly, dipping it in the glue, and putting it on the paper.

He sat through circle time- on my lap- and even seemed happy about the singing.

Little Bug did have a few run ins. The first was in the play kitchen. He was playing in there and a little boy came in too and tried to take his toy. Little Bug went to bite him, but luckily I was there and got bitten instead. Later, at "all done time", which is where the kiddos have to clean up their toys before moving on to the next task, he tried to bite the therapist, but again I was there and got bitten.

All in all, the therapists said that he had a really good first day- apparently the best first day they have ever seen! GOOD JOB LITTLE BUG!

I have to admit, I do have some concerns-

• They don't really have a solution for the aggression- right now we are simply working on prevention.
• There are a lot of kids there and not a whole lot of organization to playing- they all just kinda float like particles occasionally bumping into each other before continuing on their current trajectory. How do you get them to play TOGETHER or even begin parallel play?
• Not all the therapists know sign language. This means that Little Bug is limited in what he can say and that we have to translate for him. Hopefully, they will learn more by having him in their class.

Finally, the last concern I have is twofold- the biting and how therapy affects the rest of his day. All said, I was bite 7 times yesterday- twice at therapy and 5 more times at home. It seemed like when we got home, he was doing everything in his power to misbehave. He was climbing on the furniture to jump off it, kicking and hitting the dog, and biting and lashing out at me. I have to say, that by the end of the night, I was a little nervous every time he came over to me as I was tired or being bitten and intentionally hit in the face with things.

If anyone has suggestions on this, as I believe that this is pretty typical of a child who starts therapy, please let me know. Also, if anyone has suggestions about the biting- that do not include biting him back or hitting him- let me know.

All in all, it was a good day. Yes, I am severely bruised. Yes, Little Bug was very crazy afterwards. Yes, I still have some anxiety about the therapy. As Dorie says- Just keep swimming.

An update on Speech Therapy- it appears that Mary Bridge, with a four month waiting list is the shortest. I have called over 10 places and some of them are out a year. I have only called places in Tacoma, Gig Harbor, and Puyallup, so there are still alot of rocks to turn over. We'll see what creepy crawlies are there.

The Good, The Bad, and The Ugly

So we had our meeting with Birth to Three. I want to start on a positive note and go from there:

• Little Bug will be starting Play Therapy this week- hopefully Wednesday if we hear from our FRC (Family Resource Coordinator) and Autism Education within the month. This is pretty exciting.
• We received good information and recommendations regarding school placements and IEPs (Individualized Education Plans). We realized that we get to start that fun in January- 6 months before Little Bug's birthday.
• We got the results from the cognitive evaluation and Little Bug averaged at 17 months. She felt that the test was not a true measure of his skills and that he has really good skills, but because the test had to be done in a very specific manner, his scores were lower.
• The wait for the Occupational Therapist will be 1 month. That isn't too bad. We should be getting a call from the OT to set up an appointment.
• The wait for the Speech Therapist is not determined but apparently is so bad, we were told to contact Mary Bridge and other private resources.
• We are now responsible for co-pays for both OT and PT. This was just changed and not told to us. This was a huge shock for us as when we began with our FRC, we were told that *everything* would be paid for- no charge to us. While we appreciate that they are asking us to only pay the co-pays, when you are looking at 2 to 3 (as OT is sometimes split into two appointments) co-pays, that is between $280.00 to $420 a month. This is not something we can afford.
• There is an option to apply to Pierce County to have them cover the co-pays. If they do not, then we will need to work with the Insurance Coordinator at Birth to Three.

So our general impressions were as follows:

• A good majority of this could have been done by mail- the results and letting us know when therapy would begin. There wasn't an option for discussion or give and take- it was this is what we have, take it or leave it. Advice- Find out what the purpose of the meeting is and decide if you really need to attend. This meeting yesterday was one where just one representative of the family could have gone.
• They were very surprised to have a family that actually knew about therapy tools and that challenged the status quoe. In fact, they had a really hard time dealing with confrontation and that is something they could improve on.
• There is nothing for children to do at these meetings. Either bring someone who is okay to have the information relayed later or hire a babysitter. Little Bug quickly became bored with toys- which is kinda typical of a kiddo with sensory issues- and began to wreak havoc.
• The communication is poor- we were not informed of the change in financial policy from Birth to Three. Birth to Three seemed very hesitant to give us bad news.

This has been an emotional roller coater. We are very frustrated that the area Little Bug is struggling is the last place to get help. To me that seems incredibly unfair and hard to swallow. While we are not stating that he doesn't have difficulty in social skills, stereo typical ASD behaviors, safety issues, self help issues, it seems that the more communication skills he gets, the more the rest of it will come together. For example, how do you teach a kid to put on their clothes if they do not understand the words that you are using?

We always have a backup plan. DN is calling Mary Bridge today to find out what the waiting list is and adding Little Bug to it. I will be contacting our FRC to begin the process of proving financial hardship for Little Bug's co-pays. Finally, we are going to be buying a HUGE amount of Signing Time! as Little Bug loves it and it is increasing his sign abilities daily.

Righteous!

We had a great weekend! It started on Saturday with a trip to visit M and J. Little Bug did very well when playing with J. Normally, playing together involves lots of yelling and hitting and time outs, etc. This time, while there was the usual brotherly fighting on both sides, they did very well. It was great to see J and M.

Little Bug also premiered some new signs- please, baby, daddy, play, and apple. Apple is so cute and he can actually say it!!! YAY LITTLE BUG!!!! I know that to a lot of people, these are just 5 words and we still have miles to go. You know what? You're right, but we are going to celebrate each and every accomplishment no matter how little- because he works hard for all of them.

So our wonderful Saturday continued with an excellent trip to Goodwill- found winter coats for both DN and Little Bug. He did a really good job of listening and getting back into the cart after playing with the toys.

Finally, we decorated cookies on Saturday night. I will have to post pictures as he is rock star baker- he and I had so much fun rolling out the dough and pressing the cookies. He didn't really want to ice them, but eventually did. We gave him a bath afterwards and he must be allergic to the food coloring because he had what looked like burns on his body from the icing. They didn't seem to bother him, only the parents.

Our great weekend continued on Sunday. We had a really good time playing in the yard and going to the park. All in all a great weekend. Our only bump in the road is that he doesn't really want to each much. DN is going to make a big breakfast today to tempt him- Little Bug is a sucker for pancakes and sausage.

Today we should hopefully- *crosses fingers*- find out when therapy will officially start. Wish us luck.

Show Me a Sign

There are three little words that we can't wait to get from Little Bug: I LOVE YOU. I can't wait to hear/see it from him. One of my most treasured moments with him that brought me to tears was when he almost said it. He and I were having an awful day. We were out on our deck getting ready to go somewhere with MA and I looked at him and realized I hadn't told him I loved him today. So I looked in his eyes and told him. He put his little hands on my face and said, "me, Da."

A recent discovery in our house is Singing Time. It is a kids' show based on ASL created by Rachel de Azevedo Coleman. It has amazing songs in it and really good signs. We are hoping that this will be another way to help Little Bug with his signs. Last night, I discovered the song at the end of the episode and had to share the lyrics and her reason behind the song:


Show Me A Sign
At 2 years of age, my daughter Lucy had no words and no signs. Lucy has spina bifida and cerebral palsy, both of which affected her ability to communicate. Her doctors cautioned that we should be prepared for Lucy to be diagnosed as mentally retarded, unless she could show them a sign that she wasn’t. I wrote this song as a prayer; a prayer that Lucy would prove her doctors wrong—she did. She is the first “Signing Time Miracle.”

How are you doing little one?
My little one, my little one
I’d like to know what’s on your mind
Our days together, time together
You and me, our one on one
These are the times that make me smile
You make me smile

Tell me that you love me
Tell me that you’re thinking of me
Tell me all about the things you’re thinking
Day and night, both day and night

Tell me that you’re happy
And you love it when we’re laughing
Tell me more, oh, tell me more, show me a sign
Show me a sign

Every day you grow up more
And teach me more about what I’m here for
And every day I love you more
I love you more. I love you!

Tell me that you love me
Tell me that you’re thinking of me
Tell me all about the things you’re thinking
Day and night, both day and night

Tell me that you’re happy
And you love it when we’re laughing
Tell me more, oh, tell me more show me a sign
Show me a sign—show me a sign—show me a sign

Here is the link for the song-
http://www.youtube.com/watch?v=P6D-6OUquuU

This song gives me chills when I hear it. It has become my prayer for Little Bug in a way that I could never express it.

I love you, Little Bug.

Vaccinations, Autism, and Fairy Tales

Normally, this blog will be dedicated to Little Bug specifically- his daily activities, how he's growing, and just the funny things he does. However, I feel the need to just get some basic facts about ASD out there and some personal thoughts. Lets start with the facts:

1 in 150 births
1 to 1.5 million Americans
Fastest-growing developmental disability
10 - 17% annual growth
$90 billion annual cost
90% of costs are in adult services
Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention
In 10 years, the annual cost will be $200-400 billion
http://www.autism-society.org/site/PageServer?pagename=about_whatis_factsstats

Now, anyone who has read the news recently knows that some people believe that ASD is caused by vaccinations. Please, before believing someone because you saw their movie, they were on Oprah, or because you are scared of ASD, do you research. While I believe that our vaccinations are safe, if you are nervous, try an adjusted schedule for vaccinations- many parents have done this with success.

Let me tell you a little more about Little Bug. He is a giant- 3 feet tall and 30 pounds at 2. He has this look about him that makes you want to know what he is thinking, because you can tell he is thinking. He has amazing problem solving skills- when he wanted a cookie, he gave the dog his toy. He did this so that I would be distracted by the dog and he could get the cookie. He flaps for joy- it has to be one of the cutest things I have seen. He calls everything FISH. One last thing about him- HE WAS NOT LOST. Nothing has changed about him because he has the title of ASD. I will give you that there are days when he is so distant, it makes my heart ache. There are days when we both cry as we are both frustrated with his communication delay. He is an amazing person and is truly my world.

Personally, I would prefer to have Little Bug *alive* and have ASD- if you truly believe vaccinations cause ASD- than have him die from a disease that is preventable. For those interested, here are some links:

http://www.nytimes.com/2008/09/09/opinion/09tue3.html
http://www.livescience.com/health/080905-bad-autism.html

I will be honest- these are articles that support my view. If you want information regarding how vaccines cause ASD, you will have to find that yourself. I will not provide fodder for ignorance.

Please, go out and do your own research. Open a book, read up to date ASD studies, discuss your concerns with trusted physicians and ASD specialists. Please don't read just one book and assume that you know everything. ASD is hardly completely understood and we will continue to learn more about it everyday- join in on that.

Words by mail

Today I had a realization- Little's Bug current vocabulary is limited by how fast sign language DVDs can get here. It makes me laugh and cry at the same time. He is an extremely visual learner as are all his parents, so unfortunately, books are a no go for learning sign. I open this books and instead of learning how to sign something as simple as OPEN, I find the Statue of Liberty play for Michigan. Needless to say, this is not helpful when attempting to sign OPEN.

So, our interim solution to this has been DVDs. Now, many people will say go to the library and test them out. Oh friend, if only it were that easy. A bookstore or library seems to activate a dormant gene in Little Bug that tells him to scream as loud as possible, run like a bat out of hell, and cause general mayhem. While it can be tolerated in small intervals, it is not something that is conducive to picking out his vocabulary.

We recently realized that he has his first sign DVD memorized. At first, we thought he was getting confused, as he would sign FISH while the video was still on BOOK. After careful observation, we realized, he knew the order of the signs and was signing what was next and then go back to stimming with his cars.

Hopefully, UPS will deliver his words on time today- I know he wants them.

So we have a little bit more information

The evaluation at Birth to Three went pretty well. Little Bug seemed to be more attached/in tune with these thereapists than the ones from Mary Bridge. He was more willing to contribute to activities and play along with their tests.

The therapists seemed really impressed with how much he was signing- they said that for a child to learn 20 signs in a month is tremendous and speaks well for his ability to learn.

We won't know the outcome of the cognitive evaluation for a while and I am okay with that. I honestly think that he has a lot more potential and knowledge in that little noggin than we are aware of. We just have to figure how to get it out.

On the upside, we found out that he will be doing Play Therapy- with a peer group, Education- at home and center, Speech Therapy, and Occupational Therapy. The play therapy will be three times a week for an hour and half, Education twice a week for at least an hour, and Speech and OT will each be one time a week. He should be starting his Play and Education therapy by the end of the month! YAY PROGRESS! There is a waiting list for both Speech and OT- longer for Speech than OT. Once a therapist comes available, we will get a call and have a meeting to create another schedule. Although, I expected to be upset by the waiting lists, I have to say that it feels like we are taking a step forward.

Here's wishing him luck and encouragement- we know that he can do it.

Captian, MOOD SWINGS AHEAD!

So before I go into the details of what has been this morning, I want to first point out the many steps forward Little Bug has taken this weekend:

1. He wanted to play with other children at the beach. This is big for him. Normally, he tries to jack their toys and run, leaving them with their mouths hanging open. Not on Saturday. He was all about being close to them and wanting to join in. While he didn't make eye contact or talk to them, the fact that he was in very close proximity- 1 foot- and stayed there peacefully is huge. GOOD JOB BUG!
2. HOUSTON, We have pretend play. I repeat, pretend play. So in case you are unfamiliar with ASD, a lot of kiddos on the spectrum have a really hard time with pretend as it deals with intangible and non literal ideas. But, Little Bug did it. He found a chunk of wood and made it swim in the ocean and called it fish. This is big for him. Normally, if it wasn't an actual fish- toy or otherwise, it would not have been made to swim- only chucked back to the waves to once again be regurgitated to the shore.
3. He shared. We went to a good friend's house this weekend. Now, we have been there more than 6 times for at least 4 hours each time, but each time he acts as though he has never been there before and has never seen these people. This time, after warming up, which didn't take as long as usual, he shared with them. He let them touch him- huge, a lot of people would get in serious trouble for touching him. He let them tickle him. This is an amazing accomplishment for him. It also speaks volume about this family- he knows they care and can feel it.

(NOTE: RANT BEGINS NOW, so for the squeamish, please run.)

Now, I received an email from our FRC this morning regarding the wizard's wonderful diagnostic screw up. She let me know that she received the letter from him, but Little Bug's diagnosis needs to be on paper before our meeting in less than 12 hours with the Birth to Three center. Birth to Three has a very intensive Autism program, but children *must* be diagnosed prior to being recommended.

So, what I am being told is: THE WIZARD'S FRACKING MISTAKE MAY COST MY CHILD'S THERAPY TO BE DELAYED. *queue ominous, you better fracking run music* The wizard and his staff got off light when DN called. DN is my better, more patient, and less quick to anger half. He is also much nicer than I am. Ever watched National Geographic specials that include mama animals- elephants, hippos, tigers- and their babies? Ever watch what happens when the baby is threatened? Lets just say this- a mama tiger ain't got shit on me.

In exactly 1 hour and 31 minutes, I will be talking to the wizard. We will be picking up Little Bug's diagnosis in hand today so that we can take it to the center today. I will not settle for less as no child deserves less than the bare fracking minimum.

On the upside, we have been invited to attend a weekend class for therapists and parents of children with Sensory Integration Disorder. The city is going to pay for it. I simply have to work out the work schedule and Little Bug sitting schedule with DN and MA.

Hopefully, we will have a positive outcome from today's meeting with Birth to Three. Stay tuned.

FISH!

One of our most recent struggles has been repetitious use of words out of context. One example is that Little Bug now says- buh bye Fish!- to everyone. More and more objects are becoming FISH!

While Little Bug is very proud of his words, he is also very adamant that what he is saying accurate- even when corrected. Case in point, the other night, I ran a bath for him and then put him in it. He looks at me and smiles, "Lice, da, Lice!" I am most certain that he meant NICE, but there was no convincing him the LICE was not the same as NICE- nice is also stated as MICE in our house.

Needless to say this makes every day an adventure that is sometimes filled with discussions.
A typical dialogue:

Little Bug points to a waiter- FISH
Daddy Blake- No, he is a person.
Little Bug- FISH!
Daddy Blake- No, PERSON
Little Bug- adamantly and louder- FISH! FISH! FISH!
Daddy Blake- turns red and wants to disappear- Bug, he is a PERSON. NO FISH!

We are unsure of how to help him with this. Certainly, more signs will help. As his vocabulary grows, so will his ability to express his knowledge. I truly believe that he knows the difference between a fish and a person, and yet, without the right words, how does he demonstrate this?

Does the fact that he can't say person mean he is behind? No, it means we have to find a way to get that information out.

On Monday, we have a cognitive evaluation- basically, what's going on inside his little noggin. I am very nervous about this. This field is *not* level. I am unsure how you would accurately test some one's cognitive ability when they have only 40 words- between sign and speech. At this point in time, we can't really tell what he truly understands when spoken to.

All I can say about Monday is this: I will be his advocate and try to represent his cognitive abilities the best I can. I will voice my concerns regarding the test. I will also allow him to have his say... whatever that will be.

For now, FISH!

A double edged sword

Recently, we have begun to realize that while Little Bug's sign language is helping him immensely in communicating with us, its does just that- *only* helps him communicate with people who already know sign language. This dramatically decreases his potential social circle- with peers and caregivers alike.

At first we were so excited to teach him sign, that I have to admit, I gave no further thought to it. We were very focused- eye of the tiger, even- get him words, now! But what I believe we failed to realize was the whole picture. There have been many positive things to come from it- he is happier and less frustrated as he can communicate with us. It has improved his spoken vocabulary by giving him a visual and physical cue for what a word is. He is truly excited to learn about them.

Unfortunately, there is always a downside. Little Bug is still unable to communicate with a majority of his peers and any caregiver that isn't me, DN, or MA. That's kinda limited. This struck me on Monday when we took him to the park. There was a little girl, J, there who at 1 had full sentences. She was telling him your turn! good job! Little Bug didn't seem to notice her company, but did seem to get that she didn't understand the sign for more- as in more slide so get out of my WAY!

In the months to come, I am hoping that we can build bridges between sign and speech. As for right now, I have offered his sign video to his relatives and we try to give them mini sign lessons. You know the essentials- MORE, EAT, DRINK, DOG, CAR.... those really important things in life :) I have also reached out to our FRC (or Family Resource Coordinator) to find additional support for times when all three parents need to do something together- IEP meetings, an occassional- read as 1 time a year- break.

For now, we will explain that Little Bug is different boy from other kids- like a friend of ours so adeptly put it to her son. We will explain what he is signing and teach other kids. I know, some people would say that it isn't worth the effort and why make an example from him. Let him be a kid. You can only change the world by opening yourself to it and letting others see what is inherently different and amazing about who you are. Little Bug will always know this and hopefully will continue to create awareness through honesty and respect. It may be just a question at the playground or just a snide comment in a store, but in that moment, you have the opportunity to teach someone.

Holy Soap Bubbles Batman!

Dear Little Bug,

I hope that when you can read, you read these posts and know how much we love you. I also hope you can explain some things so that we can better understand each other.

For example, last night you stole a bar of my beloved sandalwood soap from the bathroom while I was making dinner. You then proceeded to eat the bar of soap while sitting in your tent. Yes I checked in on you several times, but with your super stealth ninja skills, somehow hid the fact that you were *eating a bar of soap*.

You then came into the kitchen and proceeded to foam soap bubbles and vomit more soap bubbles. Now, hopefully, we can all look back on this and laugh. But for now, all I have is why? Why did you eat it?

I wish I could understand what you are thinking. I want to understand why you ate a whole bar of soap. I want to know why you began looking for more soap to consume after taking a bath to get rid of all the soap bubbles and vomit from the first bar of soap. I want to know why you signed "more eat" and pointed to the shampoo. It doesn't taste good! Believe, I know, having my potty mouth has landed me in the corner many times with a bar of soap in my mouth. Didn't learn not to swear, but did learn this: soap=vile.

Trust us that we do not withhold soap because we are evil, villainous parents- we do it because it is not good for you and makes you throw up.

Love,

Daddy Blake

P.S. What does FOOT BUTT FISH mean? You rolled over and told me this again for the second night in a row. I love you, kid- you make my heart happy and every day an adventure. I wouldn't change a thing.

Went to see the wizard and didn't even get a lousy t-shirt

So, we went to see the wizard. A "wonderful" doctor- supposedly the best neurodevelopmental specialist in Tacoma Our appointment was to get the results of Little Bug's evaluations and to also find out what was going on. It began with graphs- lots and lots of graphs. It continued on to explain how Little Bug has his own kind of autism. We shook our heads and left as we already knew these things. Unfortunately, the wizard wasn't so wonderful and also had nothing behind the curtain we hadn't already seen. He had lots of "tips and tricks" to provide us- mainly ignoring behavior we didn't want and time outs.

WOW- we hadn't thought of either option. Call us crazy, but when your kid is biting his arm so badly he breaks the skin, you get a little nervous. You get even more nervous when you realize it isn't a ploy for attention- as he does it when people aren't looking. It just feels good to him.

This Saturday, we got a letter from the wizard contradicting just about everything he had told us. As expected, much anger ensued. After calming down and getting back to our semi-happy places, DN was charged with contacting the wizard on Tuesday.

So it appears that the wizard appeared ridiculous for two reasons- a mix up of records and bad transcriptionist. REALLY??? Somehow this is supposed to give us more confidence in him, rather than further detracting from it. Yes, I realize that even doctors with tons of letters behind their names and the title of "diplomat" are human. Apparently, I thought incorrectly, that they were organized humans- who do their follow up work after the appointment rather than a week later. Humans who make sure that the information a patient and his family is getting is accurate as it will shape the therapies and education these patients will get. Nope- apparently, just run of the mill humans.

Welcome to Little Bug's world!

To me, Little Bug is a genius- perhaps an evil genius but a genius none the less. He has excellent problem solving skills. One of the many good uses for his problems skills is tricking adults- with distraction and covert operations usually involving our dog as an unwilling co-conspirator. I have to admit, I have fallen prey to more than one of his dubious schemes. He has an amazing smile and a laugh that stops our hearts. He can wrestle like nobody’s business. Like most parents, our world revolves around him.

Little Bug also happens to have several developmental delays- receptive and expressive speech, daily living, and social. He was recently diagnosed with ASD- more specifically, PDD NOS. He also has Sensory Modulation Disorder- which means meals are interesting and going out of the house is *always* an adventure.

Before we continue, let me introduce you to the team:
Blake- that’s me- I am one of Little Bug’s fathers. Now let’s set some things straight- our son was not adopted. Although, I have the title of father- or da! in Little Bug words, I am the person who carried him for 10 months and gave birth to him. I am a pretty neat/orderly kind of person who like my schedules and likes plans.
DN- Little Bug’s other spectacular father. He is a wonderful person with more patience than I can imagine. He is also a fierce drag queen and a dedicated partner. He makes a mean smoothie and thinks of some of the most interesting ways to create makeup out of everyday household items. DN is more of a go with the flow kind of guy, which means I drive him insane on a daily basis.
Ma- This is Bug’s mom. She is a wonderful friend with the biggest heart I have ever encountered. She also retains that child like side that so many of us “grown-ups” lose. Just to further clarify- she had nothing to do with the conception nor does she live with us. That doesn’t change the fact that she is Bug’s mom.

As you can see, we are quite the family. That aside, we all truly love our Little Bug and want nothing in the world but for him to reach his highest potential, whatever that may be. Here are some of our current missions, struggles, etc:


Get Little Bug to go to sleep without a fight- whether this means giving up naps, changing work schedules or a weighted blanket, we have yet to discover.

Beef up his sensory diet with daily activities that help him regulate his sensory system

Continue down our road of learning sign language with him. A little background on his speech, previously, his max speech capacity was 10 words. Some- like da, ma, away- for airplane, wuwu- for train, were constants. Others, like down, up, couch, sit- they would come and stay a while. Then like nomadic words, pack up their things and leave. Since beginning sign language, he now has 19 words- constant words that stay and build homes- and almost 20 signs- that currently have long term leases and we are hoping that they will buy the property.

Prevent self injuring behavior- like biting and head banging.

Help him realize and reach his full potential through realistic challenges.