Monday, November 11, 2013

What's Autism?

Autism.  What is it?

To some it's defined by characters they have seen in movies.  To some it's something they hear about in the news and see with a puzzle piece ribbon.  To some it's the 2 ends of the spectrum, either being a non-verbal child who rocks uncontrollably in the corner pounding their head against the wall OR the child who is just a bit socially awkward.

What is autism to us?
It's sometimes all of the above.
It's a daily part of our life.  It brings extraordinary amazing surprising pieces into each and every day and it brings frustration, exhaustion, sadness and sometimes blood boiling pieces into each and every day.

As most of you know our 8 yr old is Autistic, and he also struggles with OCD, anxiety and sensory issues.  This makes for interesting life situations.

Things that are so easy for the rest of us aren't always so easy for Benjamin.
Some examples?

He has to be called the correct name at the correct moment.  That is sometimes Ben, Benjamin, Mom, brown bear, snuggle bug, his best friends name, or whatever name pops into his head at that moment.  If you pick the wrong one he can get frustrated, angry, or simply acts silly.

He can't handle clothes shopping, trying on clothes, or sometimes clothes in general.  This will result in all out loss of control, where he screams and panics to the point of almost being asked to leave stores.

He can't handle restaurants as they are crowded, loud, he has to sit still way to long, and waiting for food after ordering is to much for him to handle.

He doesn't like to go to the park, the zoo, outings, fun activities, family visits, shopping, or any of those other places.

He doesn't like to eat or drink.  He has no desire and will go days without drinking if not prompted.  He will eat if he's being strongly encouraged and bribed, unless it's a good day then he'll eat a bit on his own.  This means he's tiny and gets sick and dehydrated easily.

He can't sit still.  EVER.  This makes for interesting times at home, in school, and out in the wild.  We have had to use door alarms to know when he's taking off, he's required to hold hands in public or he just disappears, his teacher has him sit as far from the door as possible AND keeps her door closed so she has more warning to catch him before he walks out of the classroom, and he has been lost at school and the sheriff's department has had to shut down the whole place and search for him.  He spins and flips and kicks, which means he can't be to close to people or they will get hit by him.

He yells and squawks randomly.  He says horribly inappropriate things whenever it comes to his mind, and he usually says them as loud as possible.  He needs constant prompting to speak properly when spoken to.  Someone says "Hi", we say "Ben what do you say?", and this goes on for the whole conversation.    I don't know how many millions of times a week do I say "Ben what do you say?".

He has obsessions.  Huge obsessions.  They change at the drop of a hat.  When we are in an obsession it's all life consuming.  Right now it's minecraft.  Sometimes it's toys, or books.   Heck it's even been berries in the middle of winter in Iowa.  His one constant obsession is brown bear.  From the book "Brown Bear, brown bear".  This is the book he learned to speak with and it's his life love.  He has a stuffed brown bear that goes everywhere with him, and when he's not in the mood brown bear will answer yes and no questions for him, sometimes.

Ben struggles to use silverware and write legibly.  He also struggles to walk down stairs and can't seem to get the foot coordination for it.  He can't handle words that have multiple meanings, he can't handle abstract thoughts and he hates figurative speech.

Ben is also incredibly smart.  Oh so smart.  School work is a breeze for him if you can just get him to focus.  He is a good reader, and can do math in his head.  He loves art and can draw some really neat intricate drawings.  Origami is a favorite of his and he can make his own creations without the help of a pattern.

Ben has a great memory and can memorize songs and many abstract facts.  He has learned some jokes and loves to say them in his little Ben way.  I'm not sure who laughs more, us or him.  He can be such a little cuddle bug and loves the sensory of being snuggled so tight.  He laughs easily, and his laugh is so very contagious.  He sees so many things, although he struggles alot with emotions.  He loves video games and is really really good at figuring them out.

Benjamin is in the 3rd grade and school is getting rougher for him.  This move has been amazing for him.  Today was his IEP team meeting.  A lot of changes have been made.  Ben simply can't handle being in a regular classroom with 1 teacher to 24 kids.  He roams, gets into trouble, shreds his work, walks out of the room, throws sand, doesn't do his work, and so many other things.  It's been decided that Benjamin now requires 1 on 1 support at all times.  He will have a para always with him at school to completely focus on Benjamin, as his behavior is disruptive to the class, it hinders his own learning, and can be dangerous.  He is also needing more sensory breaks and input so the OT is looking into compression garments and such to see if we can get more results than we are currently with the weighted vest.  He will also be getting further evaluations from OT and PT.  He will be needing accommodations on testing.  His speech goals have also been slightly adjusted.  His teacher is having problems finding things that motivate Ben and we also have these same issues.

These changes bring mixed emotions for us.  We are glad they are pushing so hard to find solutions for Ben and to help get the perfect fit.  We are excited to see the changes that everyone is hoping for.  BUT  I'm feeling a bit heartbroken by yet another regression, by needing more help, more interventions.  It's tough as a parent.  We know that this is the right choice, but that doesn't always make it easier.

So what is autism for us?  It's all these things and sooo much more.  It's our life.

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