Autism In Big Flashing Neon Letters

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Some days are just plain disappointing.  You know the days when you can see your child really fighting to keep some of the Autism symptoms at bay but he is  fighting a losing battle.  It always seems to be the day when you want someone to see your child for who they are and what they can do and not see Autism in big flashing neon letters.

 

Today I had to take Johnny to a school that specializes in helping children with speech production to see if he would be a good candidate for their summer camp.    He was so excited to go in and participate but when he found the toy bins in the waiting room and started dumping stuff out I saw the signs of his anxiety rising.

I sat back and tried to observe Johnny through the teacher/speech pathologist’s eyes and I really saw the Autism.  He had trouble focusing on what she was saying and hence processing the directions.  Sensory was taking over as his anxiety flared with each new request in this new environment with this new person.  He was just getting over a cold as well so this is adding another complication and another thing for him to try and ignore and just do what the person wants.  I tried to prompt him that it was his turn to talk but after a few suggestions by the teacher/SLP I realized that she was not wanting the correct answer but wanting to see how he would process and and if he required extra help.

What does “his” Autism look like during moments like this?  Johnny looks at other things in the room instead of at the person talking to him.  He starts fingering or playing with the item in front of him instead of answering the person’s questions about it.  He gets distracted by the touch, feel, sound of an object and doesn’t want to move on.  He gets fixated on trying to fix the broken toys that are in the toy bin or bag instead of moving on.  He looks like he doesn’t comprehend the questions let alone understand what he is suppose to do.  He speaks very quietly almost mumbling because it almost seems like a monumental effort to talk.  The Autism is now very much present in these moments.

When we came to the “let’s practice speech” part of the assessment where Johnny had to try and repeat everything she said he did well.  He said some words clearer then he normally did and showed that he was trying to say ALOT of words but just couldn’t make his jaw move in the right way to say them properly.  You can visually see him moving his jaw side to side and up and down over and over again trying to find a the right position. She brought out stickers as a reward (reinforcerer) which I didn’t think he needed until we finished the whole exercise.  He did repeat after her but he was distracted by the stickers and trying to grab them from her hand.  Another clue that he was REALLY anxious was that the stickers were of cars and he had drawn lines to make a road and was placing each car sticker carefully down in a line or row one after each other.  This is his way of trying to self-regulate use motor-planning skills that are not too challenging for him and that bring order to the chaos he must be trying to process.

I was hoping that a camp where he would be 1 of 6 other children with similiar needs that in this social setting he would blossom but the teacher felt he needs “one on one” therapy to really target the Apraxia of Speech and they only offer that during the school year in 10 week blocks with one session a week.  She did offer to help me connect with colleagues that used to work in her school who now have private practices and specialize in Apraxia and Autism so he could get the “one on one” therapy using the Prompt method.

In all honesty I think because Johnny was showing how he could be distracted by sensory processing disorder which can be part of Autism that she felt he wouldn’t be successful in the 1:6 setting and would need someone assisting him.  This can happen to him but once he is comfortable in his environment (like his JK classroom) most people would have a hard time picking him out from the group of children.

I was disappointed when we left and had the overall feeling that this was not a good fit for Johnny anyway.  A year after his diagnosis I have found that I have to look into places/people to help him and if it doesn’t work out then it was not meant for us.  It is not healthy for me to get lost in the details of what went wrong and what could have been and instead to move forward and try something new.  When I write it down and share it on my blog it helps me deal with what happened, learn something and then put it in the past.

Today Autism won.

But its only one battle in in his life…our life and I was born stubborn.

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6 Comments Add yours

  1. Marieta ivanova says:

    Cyn, do not worry! Today autism win, but this is just one small battle against the big “war.” I’m sure the end the winner will be you .. I have no doubt that you will find the best way and funds to help Johnny! Go ahead!

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    1. Cyn says:

      That means a lot Marietta:) Its not easy and some days I feel like I’ve run out of patience but I’m learning to move on when I have to and learn from the things that go wrong or don’t work.

      Like

  2. vaughanmom says:

    We have those days too. It’s hard when you feel that you did everything you could and it still beat you. But like you said, that is just one battle. You and I both know there are still many to fight. You want to find those special people to help you fight those battles in your child’s life, and when it doesn’t work out it is so disappointing. Focusing on what is ultimately best for your kiddo is the only thing you can do. Fight on!

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    1. Cyn says:

      *hugs* thank you:) I felt when I started this blog that I had to share the ups and downs but wow its hard to share the downs. But after I did I felt a lot better. On to the next battle..right? plus enjoy the little victories.

      Like

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