So, as I have mentioned before, Zach has shown little progress, and as of late, his speaking any words has really tapered off a lot. I was starting to be concerned that he was becoming nonverbal once again. The correlation I see here is that things have been hopping around here, and I haven't spent time doing a lot of the reinforcement type stuff I would like to . However, yesterday while watching a video with big sis and grandma, after grandma said "baby" when one appeared int he video, Zach repeated it right back. We were so glad to hear him say something again.
So why have we been so busy that we aren't working with Zach as much? Well, first off, my mom has undergone some new things that I haven't written about. Last week, she was taken off her coumadin (used to treat blood clots) so that she could undergo a pain block procedure. Mom has been doing fairly well with the affects of the cancer and its treatment, however, the fact that she has no longer been able to take her arthritis medication because of the coumadin (it's a blood thinner and so are most pain relievers) has left her in a pretty decent amount of pain. Add to this sciatica in both legs, and it has been downright debilitating. My heart aches for her as I see her suffer and know that it has nothing to do with the stinking cancer! At this point, we believe the pain block plus and alternative pain medication that a doctor just discovered for her have given her some relief. Let's hope it continues.
The next business around here has been the attempt to getting Zach the ABA therapy that both evaluations has recommended for him. I have been utterly baffled why this is so difficult. Zach needs ABA. ABA has been around a long time. ABA was recommended by the surgeon general back in 1999 as the best course of therapy for autism. The New York State Department of Health Early Intervention Program recommends a minimum of 20 hours a week of ABA for those with autism. Onondaga County reference it in their Autistic Dpectrum Disorders guide for children under age 5. So why are we told we cannot get it? There are no resources for someone Zach's age, we are told.
So today is the day we meet with Zach's service coordinator to address his Individualized Family Service Plan (IFSP). THE IFSP is supposed to be document and guide and early intervention process. If it aint in there, you aint getting it. So somehow we have to get ABA in there. To me, it sounds like a no brainer. But the pushback is amazing that we have felt regarding this in the various phone calls we have had from his service coordinator and the program coordinator.
Thank God I came across FEAT - Families for Effective Autism Treatment of Central New York. We had contacted a professor at SU who is involved in behavioral treatments and she referred us to them. Oddly enough, I had seen references to them in a few books that I had taken out of the library (the group had donated the books to the library and placed stickers in the front covers) and yet ignored the reference. DUH! Sometimes I am more with it than other times. I will meet with a member on Friday who said they are there to help - although they themselves cannot provide the resources - they are not an agency afterall, but can help us locate resources and make calls, etc. What a relief. The first good news I have heard in awhile. Someone telling me that we will not be cast aside or told to wait.
But as for today - we will see how this IFSP will go. Cross your fingers, say a prayer...
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