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He’s More Than a Label

December 16, 2012

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With so many news stories being thrown around lately about autism and what autistic individuals are like, it breaks my heart that my son is lumped in with such over generalizing foolishness.  Are some autistic people violent and mean? Sure. Are some non-autistic people violent and mean? Sure.

I spoke with a friend this week and an off hand remark was made about Rett that made me really wonder how I portray him to people that don’t see us very often.  When all you have are blog updates and my words to describe our everyday life and this little guy.  I wonder what people think living my life is like.  And if I’ve victimized myself too much if people think that raising Rett is so terrible.   So I’m dedicating this post to all things Rett.   Because this blog is supposed to be an honest portrayal of our family’s journey through diagnosis, therapy and life.  And I fear that I haven’t done a very good job of that.

Rett loves Bat Man.  He loves to dress up as Bat Man.  He loves to tell us he’s the good guy.   He likes to force other people to be Robin.  He likes to play with his Imaginext men.  Sometimes he plays more appropriately then other times.  If you don’t pay much attention he seems pretty much like a normal boy playing.   He puts his little guys in boats and pushes them around in the great ocean that is our couch.   Recently he’s into playmobile. He loves all the swords that the pirates have.  He could play for hours with people he’s named Captain Hook and Peter Pan.

Rett talks.  A lot.  Does his language sound completely appropriate? No.  It doesn’t.  I of course between mommy intuition and just a lot of practice can typically understand what point he’s trying to make.  And he tries.   Today we were standing in a check out line and the lady next to us had her arms full of Christmas and Hanukkah decorations.  He told her they were so beautiful.   He pointed to a plastic candy cane full of Hershey Kisses and said ‘What’s your name? Its candy cane!’  He is trying to make conversation about this lady’s items that he is excited about.  Does it sound completely appropriate? No.  Speech therapy is working on that.  Can we celebrate him noticing someone else’s things and trying to share how he feels about them? Yes we can.  Rett has some difficulty answering questions. But its not because he doesn’t know the answers.  He doesn’t understand the question.  He doesn’t understand what information you want. ABA is working on that.  He can answer informational questions ‘What color, how many, etc’.  He can answer Where questions.  He is just now starting to answer some Why questions that are on his Why? teach to talk dvd.  Rett mostly talks about things he sees.  He likes to look out the window and tell me about the school bus, trash man, lady walking her dog.   He likes to talk to Evie and try to make her play with him the way he wants to.  He’s excited about the holidays and wants to talk about Santa and Rudolph and Frosty.

I can take Rett in public.   So many Autism moms are in a much worse situation than I am because taking their children out overwhelms the child and ends in tantrums.  Rett has always been very well behaved in public.  We can go out to restaurants, shopping, visiting friends or pretty much anywhere. Rett loves to leave. He will often go get his shoes and request to go ‘play with friends’.  Which means go somewhere to play with other kids be it the park or chick fil a or whatever.   Our biggest public behavior with Rett is him talking too loudly basically all the time.  He just needs an ‘inside voice’ reminder and he tones it down.  He gets excited and it shows through his decibel level.

 

Rett loves us.  He tells us he loves us spontaneously.  When Evie is not in the room he will ask ‘Where is my Sissy?’  and go looking for her.  He loves it when Thaddeus is in the jumper and he can come make funny faces and make him giggle.  He calls him ‘my brudder’ and gives him kisses.  He tells me I’m so sweet and can’t wait to see daddy if we are out of the house.  He often runs in yelling ‘Daddy! Daddy!’ so excited to see him again.

 

Rett is smart.  He knows almost everything at an appropriate age level as far as facts.  Letters, letter sounds, recognizes his name, counts to 20, identifies shapes and colors.  He knows all sorts of different types of birds and lizards.  A few days ago we went to the Bass Pro in Georgia to have our Santa photos done.  He said ‘Look its the fish castle!’ which is what we called ours in Oklahoma.  He is just now this year sort of letting us know how good his memory recall is. Sometimes you just have to show him once.  Rett has to be what I call directly taught a lot of things that typical kids just pick up on.  Its not a lack of intelligence, his brain just works differently.  So where a typical kid just learns what stripes are, Rett had to be taught that.  Now he knows.  Sometimes you just have to show/tell him one time directly.   And he has it forever.  Sometimes, especially in the case of numeral identification, he has it for awhile and now he’s mixed up and its gone.  When his brain is ready to learn something he soaks it up, when its not, its an uphill battle and I wonder sometimes if its just better to wait till he’s ready.

 

Rett does have some behavior issues.  Rett whines more then is age appropriate.  He doesn’t like to be asked to do things he doesn’t want to do.  Its hard for him to try if something gets difficult (like taking off his shoes).  Rett cries more then is age appropriate for similar reasons. His frustration tolerance is low.  When we first started ABA, Rett would ask for things in a whiney voice pretty much all the time.  It was some sort of bad habit. They have stopped that.  He also spent hours screaming and crying when they tried to get him to answer questions instead of just play like he wanted to.  He still has a hard time if he’s bombarded with a lot of new material that he hasn’t been taught yet but overall, his ABA sessions are quiet and he loves seeing Miss Kristi.

 

Rett does have sensory issues.  I am hyper aware of them as his mom.  He likes to crash things together. He loves to tear his play doh into a million bits.  If something is on his hands, he wants to clean them off.  He needs some nice reminders that its ok for hands to get dirty and when we are all done, we can wash up.   But I can’t say that Rett’s sensory issues have ever really hindered us from doing what we wanted as a family.  Or kept him from doing anything.

 

If Rett is so awesome, why am I so stressed out?  Because when your child has a list of 50 goals that they are working on with speech, behavior, questions/answers and you have to basically listen and pay attention to their every move all.day.long it is stressful.  Its stressful just to wonder if what we’re doing is the right thing.  If we’ve made the best choices.   Trying to navigate resources and manage appointments is just overwhelming.  I never thought my life would be like this.  I imagined soccer practice and cub scouts.  I have spent countless hours pouring over magazines that I could not care less about in speech waiting rooms.   So much of our family’s monetary resources have went to therapy that there is little left for all the fun things I thought we would be doing.   I haven’t given up the would have’s/could have’s yet and it takes a toll on me mentally.

 

Rett and our family is more than just a diagnosis.   My boy has interests and favorites and things he gets excited about just like every other boy.  He has a long way to go still but Thank God, he’s come SUCH a long way!

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