I think I'm in confidence-debt, but I can't really afford to stop spending it now.
For those of you who don't know, my two-year-old son is autistic. He was diagnosed in February when he was 20 months old. He's been receiving ABA since then. I have to say, my whole family really snapped into action when I told them. My husband's parents came out of retirement from Hawaii, flew back here, and set up their house with a bunch of toys. It looks like a daycare. This benefits not only us, but my in-laws. I have a neuro-typical (non-autistic) nephew who is eight months younger than my son, and my parents-in-law are just as happy to spend time with him too. They've taken some of the burden of my son's therapy schedule, so I don't have to miss work all the time and subsequently, make up those hours on the weekends.
But we haven't been supported in every arena. The Regional Agency we've been using fights us on every request. I understand why. They're overloaded with cases, and the less they do for my son, the older he gets, and the closer he is to aging out of the Early Start Program. In addition to ABA, I'm sure that my son needs Occupation Therapy and Speech Therapy. I was denied the OT by my caseworker. So I've had to fight. I started by sending adamant emails. I then stepped up my game by attending the agency's board meetings, meeting the board members, and my caseworker's boss. That seemed to work. I have a meeting scheduled to talk about the OT again, and am preparing for it by gathering the notes from my pediatrician, and from the head therapist who has been working with my son.
I have a big binder with tabs. I am organized AF.
But I'm also SO exhausted. I realized how lonely I am when I listened to my daycare provider complain (in a rather racist way) about people on welfare and how they exploit the system. Sadly, she's a person who complains about a system she doesn't understand, and lumps all people into one category. This made me sad. And lonely. I miss my friends. My friends are critical thinkers who can hold rational dialogues without resorting to logical fallacies.
So. very. lonely.
You are a freaking super woman for getting those guys to look at your case again. I so hope it goes well, you all deserve all the support.
ReplyDeleteI'm sorry about the lonely thing, that sounds exhausting and awful. :( Is not seeing friends a time thing or a losing contact thing?
I have a small amount of time to get him these services, because when he turns 3, he ages out of the Early Start Program, and then I have to deal with the school system. By then, I will have a fat binder with information on his disorder, and I will also have absolutely no patience for douche-baggery.
ReplyDeleteThe not-seeing-friends thing is partially a scheduling problem, but mostly my own psychological road-block. I can't justify sitting in Coffee Cat kitting a doll and chatting about recipes when I could be at home spending time with my son. It doesn't make total sense, because I know that it helps him if I'm helping myself too, but the guilt factor is SO HUGE. Before the diagnosis, I was easing into being a toddler-mom from being an infant-mom. I was getting more free time, I was planning some activities for myself, and then we got the diagnosis. Now, I can't justify doing a single thing for myself unless it benefits him too. I'm my own prisoner.