So- Zach's fever broke over 2 days ago, and he has been extremely grumpy lately. Eye contact is greatly diminished once again, and he has muttered a few words, but no where near what he was up to this past November. Like I said before, this was one of my fears (that he would regress again that is) and the experts told me it was highly unlikely to happen again. I don't know what good it would be to call them and let them know what happened, but I may do just that, just in order to get it on his records.
Despite his grumpiness, he had an OK session with the therapist. I was shocked when I heard him go from screaming to an occasional giggle. L. said the session went OK, and that he engaged with her a bit.
I am wondering if there could be progression in one area (perhaps his motor development) that may end up causing the lack of language. I have noticed this sort of pattern in Sophie in her 4 years on Earth, that some things look like they are lagging for a bit, only to be regained after another area went through some new phase or growth. In fact, I can recall even a growth spurt could seem to put developmental issues into a plateau. But this is more than a plateau, he has actually stopped language again. I hope time will tell. I am still interested in looking into if there could be other allergies creating a problem for him.
As part of ABA therapy, you have to come up with incentives to motivate the kids to do their work. You start off with tangibles hopefully to lead into praise alone as the only incentive. I thought a first pass of incentives would include some food: (chocolate chips and pretzels), his Thomas the Train wooden train, bubbles, his shape sorter, holding him upside down, and of course tickles and hugs. I let L. know these. Hopefully in the next few weeks, will see what really delivers.
He is becoming more difficult now - which emphasizes the language deficit. I have a feeling his tantrums and crying episodes are largely linked to the fact that he observes more in the world, wants more of the world, yet hasn't figured out how to express it. My poor little guy. This really is wearing us down a bit. My sister-in-law had named the kids "Velcro and Elmer's" after wtinessing how "attached" they are to me. Zach literally wants me to hold him every waking second of the day. This is wearing thin- and makes it really difficult to get done even the most basic chores - it's like having a 30 pound newborn - and you can't use the Bjorn to keep your hands free! Needless to say, the house aint looking to pretty lately.
I knew as he became older that the situation in some ways would become more difficult. For the most part, Zach's autism is undetectable to the passer by - he is really cute. But his smile is not as frequent as he gets older, he has begun to scream and squelch along with tantruming, and he is always in my arms or pulling on me. It would become more and more noticeable I can see now, all because his frustration level is growing. My poor little guy!
Called and advocate yesterday in hopes of finding a way to get services for Zach and was pretty saddened by the outcome of the situation, which basically can be summed up as follows: "Yeah - that's too bad. That's the way it is. Once you are processed through the Central New York Disabilities Services Office, you can contact our agency to provide respite care." Not exactly the advocacy I was looking for. She herself was a parent of an autistic child who wanted ABA and drove to a nearby city to get it. I wonder if the system wore her down. I wonder if it will do the same to me.
With this in mind - I ask you to lend a hand in this advocacy thing - I will likely be distributing an email to this affect within the next few days - but will post about this now.
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From Autism Speaks: Although there has been no increase in the state supplement for 20 years, this year the New York Executive Budget is proposing to cut the state supplement to Social Security Insurance (SSI) payments for New Yorkers who are aged, blind or have a disability, such as autism. The proposed legislation would cut benefits by over 25% for individuals and couples living alone in the community and 45-70% for those living with other and are scheduled to occur in June 2009.
From Leanne: Did you know that most parents of autistic kids end up going down to one job in order to manage the care (and paperwork, research, phone calls, etc.) of their child? Do you know at this same time they end up paying out of pocket expenses for their child's care that usually ends up in the thousands? See the report finding here. Of course I know this - we already have spent over $5100 out of our pocket on Zach's care since November of last year, and we just began the private therapist that insurance will not cover, nor does it looke like we can get reimbursed for through our reimbursement account. I have taken a few leaves of absence, and am cutting my schedule that will result in a loss of pretax income of around $17,000 a year. I want to give everyone a look at the real numbers to get a feel for the financial stress this puts us under. And we are lucky, because we can still do these things.
What about those "working class" blue collar folks? It makes my blood boil to know that there are many kids not receiving the services they should be, and parents are forsaking their futures (I know of a few families who wiped out their retirement 401Ks) in an effort to get their kids the services they need. This is not about what is best for the child or what the parents want - this is about what the kids need in order to become self-sufficient adults at some point in their lives. I know the investment now saves the taxpayers a lot later on when we start talking about continuation of services, group homes, possible institutionalization that has been shown to be avoided when the necessary therapy interventions are put in place. People can be so shortsighted.
So - I ask each of you that reads this to contact your legislators and ask them to let them know you don't support this. I know we need to reduce spending, but lets get rid of pork-barrel superfluous type expenses - not for things that help those who need it the most! To look up your legislators go to: http://www.autismvotes.org/c.frKNI3PCImE/b.3932687/k.F652/Find_My_Legislators/siteapps/advocacy/search.aspx. I will likely create a form letter and distribute this by the end of this month for those who would like to help.
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