Saturday, September 18, 2010

And then we knew...

Last week we took our youngest daughter Avery to the Erikson Institute in Chicago for a medical diagnostic assessment. I mentioned this in the thread titled Being a Parent of Special Needs Children.  This is basically an exam done by a developmental pediatrician and a team of therapists. Two of Avery's therapists believed before we went into this that she would be placed on the Autism spectrum because of the way she acts or reacts to certain situations. Last year when we took Paige there for her exam they told us before we left that she wasn't Autistic.

The day we left with Avery they didn't tell us that.

They said they would go over everything and talk to us next week. I knew then we were definitely look at her being on the spectrum. Actually I've had a gut feeling for awhile that her issues which are really a lot of sensory processing issues that impeded her ability to function would put her on the spectrum. Sensory processing disorders are not recognized by the insurance industry so they have to give it or put it in an Autism diagnosis for services.

Within 2 minutes of sitting with the Doctor she had told us that she does indeed have Autism. As much as I was expecting those words it still was hard to hear. All we wanted to know is now what? More therapy. What does she need from us to thrive? Direct Floor Time Therapy  How can we help her? Let her lead us to how she wants to engage with us. Will she have a normal life? They hope with therapy yes she can.

Will she mainstream in school? Maybe. The school is the hardest. The hardest part of it. In about 8 months she will be evaluated for Early Childhood preschool. Most schools do not use the Direct Floor Time Therapy program. Will the program for Autistic kids at our school district which honestly I think is great for kids with slight delays like our oldest but might not necessarily be great for an Autistic child. There are NO schools for Autistic children in our area. And most programs follow the Applied Behavior Analysis therapy which is not what is best for her.

Do we have to start a trust for the "what if's" of who will take care of Avery if she can't take care of herself after we are gone? That was brought up by the Doctor as well. I think that made me the saddest to hear that scenario. Who plans that? You expect when you have kids, they grow up, get jobs and leave the nest. You just never really expect to have to plan for that.

She currently is attending a Parents Day Out program at a local church that our oldest attended at her age. I gave the director a heads up about Avery's abilities and inabilities and brought her in early on the open house day. So as to not give them a "surprise" on the first day. After the first week we know we have some things to work on with her but I am hoping that her interaction with other kids will be a good model for her to follow like it was with her sister. As long as we can get her to stop stealing their snacks and drink cups then hopefully it will get better.

So now we are in a waiting/holding pattern for ALL of the equipment her therapists have asked from the state. Now with the diagnosis of Autism hopefully we'll get these items faster but if you haven't heard the state of Illinois is in horrible financial straits and well it can take forever.

Nothing about our love or devotion to our daughter has changed. We just now know what we are dealing with and have a game plan to work on which is a lot better than not knowing, IMO.

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