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I am a parent of an autistic child

October 8, 2011

You know how weird humor sometimes comes in weird situations. You know its completely inappropriate but its there in your head anyway. When I came back to tell everyone what the diagnosis was it struck me as being almost like when the doctors used to tell you what you had in the delivery room. Except instead of ‘Its a boy!’  it was ‘Its an autistic diagnosis!’  Not quite as happy and heart warming.

Before I launch into the huge story of what we were told, I’ll just tell you that as a parent, watching your child being diagnosed is SO hard. They are being put to a test. Except unlike a normal test where you just find out what they need to work on, this one is life altering.  This one is labeling. The tests they do are play based so a bunch of toys and see how they react.  And you can’t help/coach or lead them.  So you sit there on pins and needles as the ladies (there were two of them) point out to each other the things he is doing. And they ask you if he does that. And in confusion you say yes but you never realized that the things he did all pointed to autism.  And you feel like your child failed the test. And you feel like you failed your child.  All of this while you just have to sit there and watch.  We have another diagnosis today but we already know the first doctor was right.  I really don’t want to do it.  I am so sick of these stupid tests.

 

So we spoke with the lady for an hour talking about when our first concerns came up, what they were, what he is displaying now, what everyone else has said so far and all the stuff we’ve repeated a hundred times now.  Then he came in and had to play with toys.  It was basically the screening test but a lot longer. Its called the ADOS and you can google it if you want to see what types of stuff he was working with. Basic kid toys.  Only 3 doctors in Oklahoma give this test. 63 in Georgia do. I guess that explains the 6 month waiting period we would have faced in Oklahoma.  Luckily we got to come to Atlanta.

During the testing Rett got stuck on his door thing.  He also did his shifty eye thing. Which she told us is an autism thing. We thought he just did it for attention.  They did some things that caused the hand flap reaction.. which they said is very mild and why we never noticed.  Basically a lot of signs that it was nothing but autism.  She explained that there are delays and there are disorders.  A delay is when a child either hasn’t progressed past something that is developmentally appropriate or hasn’t progressed to something that is developmentally appropriate. And then there are disorders. Which are things normal children just don’t do.  And Rett shows disorders.   The lady was really good at knowing what you would tell yourself later to make the test wrong.  She broke through our excuses before we even came up with them. And when they did come up, I remembered what she said and let it go.   She told us that if you feel that your child would perform better if only the question had been worded this way, that is an autism sign. Scripted parent speak is a natural way of coping with the disorder.  You never notice yourself doing it.

 

Rett’s vocab during this exchange was so limited that she said if someone went on vocab alone he would look like he was mentally retarded.  Even though he does have a lot of vocabulary he doesn’t use it as conversation. He uses it mostly to label objects.

 

Some good things she told us from the diagnosis.  Rett does have pretend play.   He does have speech. He explores and is curious.  He invites you to play with him, asks you to ‘look’ at things and is observant of what other people are doing/looking at.  He has eye contact. He is loving.  His autistic things are mild enough that most people wouldn’t even think that ‘oh look at that weird behavior’. Well besides his waterfall thing. Because Rett has such a great foundation of skills that he was just born with, she said that she felt with intense therapy that by age 7 he could reverse his diagnosis. This does not mean Rett won’t be autistic. It means he will function so highly he can fool the test.  He will take his skills and be trained by someone on how to use them to appear normal.

 

She told us even though we haven’t seen sensory issues YET, they will come. Most children do not get diagnosed until 4/5 because the sensory issues come later. So we wait and see.  She told us about different therapies and what she thought would work best for Rett’s personality and abilities.  She told us its a miracle we caught it because he is verbal, social and has some play.

 

So what now? Now we go back to Oklahoma and see if we can find someone who can help us with the therapy he needs. We all have to go through training to know how to use it.  I need to see if I can find someone we can hire to be trained and go to mother’s day out with him.  I need to figure out how much speech and OT he needs and get that scheduled.  Basically I need to figure out a routine so that when the baby comes, this is all done.  The doctor urged us to just try a little of everything to see how he reacted and to see what it worked on so that at a certain point if we say ‘Rett really needs to work on X’ we have an idea of what therapy that is to seek out.

 

So I am a parent of an autistic child.  A proud parent of a very adorable, loving, smart, capable autistic child.  And its going to be ok.

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One Comment leave one →
  1. Joslyn permalink
    October 11, 2013 7:58 pm

    Very interesting. I am blown away by your comment about the wording of questions because i want to tell ppl “word it this way and she will understand” all the time. Our neuro wants a second look done for E.

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