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All About Rett

April 3, 2013



Early autism signs are a VERY big, important topic to me.  To pretty much any family with children on the spectrum.   What we wish we would have known or that our pediatrician would have known or that SOMEONE would have known.  Now we know.  And we try with all our might to share that with as many people who are interested as we can.  Here is my very first post where I go over some of Rett’s early autism signs.   At that point, as I voiced my concerns and what I saw, I had a lot of eye rolling.  I had a lot of ‘you’re a first time mom and crazy’.  I had a lot of disbelief.  People ‘heard’ me but they weren’t hearing me.  Rett was talking, he was pointing, waving, making eye contact, learning, progressing, playing.  But there was something I couldn’t quite put my finger on. But I knew, knew, KNEW something wasn’t right.   And from the beginning of our journey,  I have been learning to listen to the inner mama bear.   Because she is almost always right.   My pediatrician did not catch the autism.   After seeing my boy for over 2 years, she also thought we were dealing with maybe a slight speech delay and was very surprised at the diagnosis.  Do not trust your pediatrician for the answer on this one.  You need a developmental pediatrician or psychologist.   Pediatrician deals with colds and sprained ankles.   Some of them might be educated about autism but if it were my kid.. I wouldn’t count on it.   So this is a post for Rett.  My first born.




From an early age, everyone loved Rett.  Everywhere we went he would end up holding onto some little girl’s hand or making friends.   Adults gave him lots of attention, he was so cute and loved to please people and entertain them.   He was a loving kid, listened and followed directions and was just good.   A really good little boy.   Maybe that is why so many people had a hard time believing and accepting Rett’s diagnosis when he was little.   When you are dealing with a little kid that is 2.5, yah he’s weird.  Along with all the other 2.5 year olds.  I mean, all toddlers are to some point weird   It was not until Rett got close to 4 and is now closing in on 5 that the delays and differences really start sticking out and there is no longer a question of just a developmental delay. Or maybe we’re just dealing with dyslexia or maybe its just a pragmatic speech problem.  People, this is autism.  Not Asperger’s, not PDD-NOS, not anything but.  Its just autism.


When Rett was little he loved to act out scenes from movies.  His little eyes would look over to make sure you were watching.  He could do all the moves to the dance from Wall-E and melted my heart singing the opening song of the movie.  He was singing, dancing and acting out stuff pretty much constantly and got such a happiness from doing that.   Rett and his love for screen time go way back.   When he was just a baby I didn’t want him to watch tv (of course, first time mom).  We joked that if you took him to a restaurant that had a tv, Rett would be the first one to find it.


Rett’s vocabulary at a young age was amazing.  He could say pretty much everything in his little ‘Baby’s First Dictionary’ or whatever that thing is full of real pictures.   He could say dinosaur and skull and all sorts of impressive things.   He learned to identify some shapes and letters and could count and recognize his colors.   He was such a happy kid.  All the time.  And so good.  We used to get compliments all the time, everywhere we went on how good he was.  Out to eat, on the air plane, anywhere in public people would compliment us on what great parents we were to raise such a good child that listened and behaved so well.


Now that Rett’s 4, he loves super heroes.  He loves to dress up and be Bat Man. He tries to force us all to join him in super hero land.  Thad needs to hurry up and grow up.  Neither of us girls are all that interested in the super hero stuff.  He loves his imaginext guys and spends a lot of hours fighting his guys or flying them around in airplanes.   He loves pirates and has a collection of play mobile that sometimes turn into captain hook and his crew.   After being introduced to the Duplo app on the ipad, his love for building with blocks was born.  He can build airplanes and houses and ships and play grounds.  He loves coming and showing off his creations.


Rett and Evie share a bond that is exactly what I was hoping for in two close-aged siblings.  I worried about that a lot after his diagnosis and before hers.  Of what life was going to look like in our family. What the dynamics would look like.  I think they look pretty ‘normal’ whatever that is.   Rett loves to play with Evie and often while he is flying his air plane around, will go get her one too.  He did that even at a very young age, tried to include her in his play and get her to play along.


Rett doesn’t always have the right words to convey exactly what he means.  I can usually guess though. He doesn’t always know to ask permission as he looks at you expectantly to see if you’ll say its ok.  He doesn’t always answer questions right and he can’t always be understood.   But he’s come a LONG way from the beginning when we had to make him say ‘I want’ to get any of his toys.   We had so many tears and so much frustration back then.  But his work had paid off and his speech is coming along.   Right now he is working on ‘behind’ ‘under’ ‘beside’ ‘by’ ‘and ‘between’ along with ‘not’ and ‘don’t’.


Whenever we first began our therapy journey, I begged someone to give me some idea of what we were looking at for the long run.  Nobody would make any promises.  It could go either way, its too early to tell.   We all knew he had a lot going for him with his pretend play and with his interest in other people but he was too little.  Everyone seemed very interested to see how he would turn out.  But just in the last few months, our speech therapist who has taught and worked with children on the spetrum for 12-15 years has started to say he’s going to be ok, he’s going to be just fine.  He’ll have friends and learn well and this is all going to be ok.   That is a first for us.  Its taken over 2 years of therapy for anyone to go out and say anything like that to us.   We treasure those words.


Rett currently gets 10 hours of ABA therapy a week.  It is a special way of teaching him regular information kids would learn at pre school along with working on speech and some other skills that normal kids would just get, like turn taking and playing board games.   He also goes to his speech therapist for 2 hours a week.   Our insurance covers nothing until we hit deductible and then it covers half.  I am currently working on getting the deeming waiver which would allow us to add one day of OT and one day of PT to our schedule.

We have made a lot of changes and sacrifices in our family for Rett.  For our hope and belief that his life can be more than autism.   And as I see the smile on his face and hear him trying once again trying to communicate what is going on in that beautiful brain of his, I know he is worth it.  No matter what he does with his life, I have no regrets of everything we are doing for him now.


“Be strong in the Lord and,
Never give up hope,
You’re going to do great things,
I already know,
God’s got His hand on you so,
Don’t live life in fear” -Sidewalk Prophets

We are blessed to share the journey that God set before Rett.  His life will be amazing.  I can see it in his smile.



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