One Step Forward, A Million Back

In the past few weeks Miss Sunshine has been actually talking and making sense!! I have been so excited!!! When we go for the private OT (the IU STILL has not found us an OT for her IEP in school or out, but that is another story) and I sit in the waiting room chatting with the other moms which is such great therapy for me, btw, we all swap what is working for us and what is not. They all ask what we have been doing. Miss Sunshine is definitely a bit different than she was when we began way back in November and the other Moms in our little “group” are beginning to notice the change too.

She gets private, insurance paid for OT twice a week, a group music class once a week paid for out of pocket (thanks Mom and Dad for the class!!), IU speech which were aren’t exactly 100% happy with but it will do twice a week and private speech once a week with a speech therapist Miss Sunshine just LOVES!

We haven’t done any behavior modification yet, of course, because the IU sent us through Magellan and even though her initial assessment is complete, go figure (HAHA) they can’t find a provider quite yet.

I am actually a bit surprised with all of the behavior stuff, quite honestly, because with all of her waking up and stimming in the middle of the night and her serious sensory issues, the psychologist didn’t recommend or do a functional behavior analysis.

 We also modified Miss Sunshine’s diet a bit. Not the GF/CF diet but dairy free (her older sister is allergic anyway) and more whole, natural foods. Not sure if that has made a difference but all in all her what we call “off” days have been less.

However, when I spoke to her teacher, she tells me that she hasn’t noticed as much improvement as I have at home. That is a problem. Come the fall we want to be able to have her been in a regular kindergarten class with assistance and all her therapies (OT, speech, behavior…) We have about 5 months and if the IU and Magellan don’t get a move on, I am not sure how that is going to happen.

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One Response to “One Step Forward, A Million Back”

  1. Donna Says:

    Hey there,

    Just reading your note, not sure if you’ve gotten this far yet, or if you know this, but you can request your own Functional Behavioral Assessment from the IU. Like anything, it might take a while, and they will probably tell you no at first and that it’s not necessary. But, as a parent, you can request it, verbally and in writing, and legally, they have to complete it.

    Last year, I requested one in May for my little guy, who was mouthing toys at preschool. At the time, his itinerant teacher, who saw him for about 25 minutes a week said they couldn’t do it until he started school again in the fall and that was if, and only if, he exhibited behaviors. So, I dropped it for about 6-8weeks until I learned from other parents that when you can request it, they have to do it. I then contacted the IU and told them of my prior request and requested again formally and in writing. It was finally completely wrapped up by October.

    While the IU’s provider completed the eval. and report, I was able to get the IU to agree to a minimal amount of ABA hours a week from an outside provider. (threatening to bring an advocate or actually bringing one works)
    And, I have to say the addition of the ABA component has been making a difference.
    ~DOnna

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