I have a new job. It's a work from home opportunity. I'm a newly appointed advocate for my son. A full time job, no pay, and if I fail it can largely affect my son's future.
So, what does an advocate do?
When a child has autism the state mandates a certain amount of hours for therapy to be completed by Early Intervention (EI). So it sounds like if you need 20 hours a week, you'll get it, right?
The problem is how the hours are used. Yale suggested that Garrett start out with 10 hours a week of therapy. Specifically, 5 hours of speech and 5 hours of ABA Therapy - the leading proven treatment for people with autism. EI doesn't require their therapists to be ABA certified. Initially EI only offered us a half hour of a week of speech. There are various other therapies that they will give us, but not what has been recommended. They won't give us the max hours either. They are understaffed and will make any excuse to give less than what is mandated.
Being a new "advocate" I had to arm wrestle EI for more hours. I can't say I won, but I did get another hour of speech added. That's only 1.5 hours a week. Not even close to what Yale has suggested and it still leaves us looking for 5 hours of ABA and 3.5 more hours of speech. Obviously I need more training in this new job of mine.
Tomorrow we are going to look at a private school for Garrett. It is 45 minutes away and will probably cost more than most colleges. It may give him an edge. It may help him become the best Garrett he can be. So we will take a look and if it is the right fit, we'll find a way. How can we not?
We are hopeful that we can be partially covered by insurance. So far they are really giving us the run around. We may consider putting Garrett on medicare, if they provide more coverage.
Meanwhile, Angelina has started pre-school and she absolutely loves it! I think taking a break from her brothers has been really good for her. I already see strides in her language and social skills in only 2 short weeks.
AJ is being evaluated for autism by EI in October and by Yale in November. The odds of a sibling having autism are 30%, according to Yale. An identical sibling is much higher. It is hard to tell if some of his behaviors are picked up from Garrett or if they are truly his own issues.
So for now, we wait and see.
We are all advocates for our children, if they have special needs, if they are typical - no matter who they are. Even though I'm new at this, I have a suggestion for you. If you feel like your child needs advocating, don't hesitate.
Go kick some ass. No one will fight like a parent will.
we have a bit of the opposite problem, but with similar results. Katie has PDD-NOS, supposedly. To be honest, I agree that she has had some verbal / communication delays; however, she very infrequently displays any other attributes of autism- but here we are. After the diagnosis, we were informed that Katie had to have at least 15-20 hours of therapy, rotated amongst 5 different types of therapists. One day Katie had 3 visit her at once at her daycare, and they complained to me that they thought it was too much, and at times, they were showing up without even telling us! One day, a new therapist we didn't even meet yet called and left a message while I was out that she was going to go ahead and visit Katie at day care -- a person I HAD NOT MET thought that she had every right to move ahead with her agenda without my consent. When I complained about it to the service coordinator, I was asked if I had "anything else going on in life going on that was causing me to be upset" and then she recommended that a "social worker" come to my home. A SOCIAL WORKER?! So, I'm a bad mom because I complained?! Bottom line: they figure that because they work for the state, they run the show (even though I have to PAY the state over about $200/month for their services).
ReplyDeleteLong story short, we eventually capped the hours of therapy. We also have noticed that the therapy doesn't focus on speech as much (only 3 hours per month out of 40ish) even though that is what Katie's major problem is. Instead we have a ridiculous amount of "behavioral" therapy. This means: training. They call it a "Holistic approach" but what it all comes down to that the state is mandated to train our children in obedience. Very little focus on cognitive. The other day, Katie wanted to turn the page of a book when the therapist didn't want her to, and it resulted in them discussing amongst themselves the issue that "Katie still has a part of her that refuses to do what she's told." I told them that I liked that aspect of her... ;)
Basically, you could have 10 hours or 20 hours of therapy and it doesn't matter how much but the quality of those hours. If the state's teaching philosophy doesn't mesh with what you think your child needs, I think either you need to argue it (probably futile- they may add the hours but still not use them effectively) or seek out a private system that you think is best for Garrett, which is what you seem to be doing.
Don't let the state tell you what's best for your children. No reason not to fight for your own child's best interests. Go you! :)