Special Needs

I hate waiting

We have three boys.  The older two are diagnosed with AS and PDD-NOS.  Since the moment I found out I was pregnant with our third, I feel like I have been in a pattern of waiting to find out what his life was going to look like.

For our good and the good of the autism community, we enrolled the baby in an at risk infants autism study at our state University.  We had R's 12 month appointment for the research study last week. The appointment was very inconclusive, so now we wait some more.

One of the tests they administer is basically an ADOS for babies.  They have found that this test perdicts with I think about 75% accuracy if a child has an ASD diagnosis still at the age of 3.

During the testing, R did some really great things, but he also did some concerning things. Some of the concerning things we saw were that he had a very flat affect for longer than the dev. ped. would have liked, he made a few facial expressions that concerned the dev. ped., he did not engage in imitation and we are concerned that he did say mama and dada, but quit after he gained other words that got him stuff (like up, down, go, out, etc.). He also has started to engage in head banging. His language is ahead of the game (which sadly is a concern when you have a sibling with Asperger's), so we are keeping a really close eye on how that develops.

He does some really great things too.  He plays peek-a-boo, he responds with eye contact when his name is called, he had a few instances of good joint attention during the session, and like I said before, he has lots of language. 

This was the last appointment for the research study, but we are going to schedule a short evaluation at 18 months with the developmental pediatrician we were working with during the study. After that appointment, we will determine if we need to do a longer, formal evaluation. If anything of concern comes up between now and then, she will want to see us right away.

The waiting continues. I was honestly kind of hoping they would just say, yep it is time to call EI. Is that crazy? What is wrong with me that I just wish we could say he is going to have an ASD too and get going?

Lilypie First Birthday tickers Lilypie Fourth Birthday tickers Lilypie Kids Birthday tickers

Re: I hate waiting

  • I totally understand what you are saying.  We are almost 3 years out from my older son's diagnosis and just over 2 years out from my middle son's diagnosis.  I feel less certain about their lives now than 3 years ago.  For one, I know more about what the typical development curve looks like than I did 3 years ago. And two, I see my boys moving farther away from their peers and their deficits are so much more obvious.  It sucks.

    I think having some sort of diagnosis or confirmation that there are deficits present would help give me a sense of control. I could call EI and do something to start working forward. I can see where his deficits are and on one hand I want so badly to start working on them, but then I get worried that if I work too hard, I will mask those things and if he does have some developmental delays, I will cover them up and further put off getting services. He is developing SO MUCH like my oldest did at this age that I would be shocked if he doesn't come out with an ASD diagnosis at some point.

    Lilypie First Birthday tickers Lilypie Fourth Birthday tickers Lilypie Kids Birthday tickers
This discussion has been closed.
Choose Another Board
Search Boards