He's really reading!

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!

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-

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!

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

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

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

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

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)

A highly condensed 18 months

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

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.