Suck it up, Miss T
Mr. President and I got into our first little fight a week or so ago when a letter came in the mail for Spawn. And by fight I mean that I got upset and he tried to make me be reasonable and talk me through it. He was right, except for one thing. It didn’t have anything to do with my pride. Wait, this story starts a little further back…
Months ago you may remember a post about me taking The Spawn to Children’s Hospital for a more inclusive and official diagnosis. At the time many of my friends and family spent a lot of time doubting his diagnosis of autism, I imagine this happens a lot with children who are not on the severe end of the spectrum. It was well meant and I understand why they would want such a sweet and charming boy to have something else, anything else, going on. Regardless, I got really good at delivering my “it’s a spectrum disorder and the traits he posseses I want fixed” speech. My position was (and is) that I would rather he get evaluated on his worst day, when he is aggressive and non-verbal, and have his PDD-NOS treated as aggressively as possible than risk not qualifying for the care I know he needs. My goal is to eradicate this disorder; I want him in normal classrooms by first grade. This is a reachable goal and I am willing to fight to achieve it. In other words, while I am lucky that his affliction isn’t very severe I do not want to let treatable behaviors slip through the cracks when there is so much available help. While it still seems odd to argue with people trying to convince them that my son is indeed autistic, I felt vindicated when the diagnosis came in and he qualified for ABA or wraparound therapies. You can call him whatever you want as long as he is getting the very best in treatment available to him.
We are lucky to live in Pennsylvania. I was immediately handed paperwork that explained: regardless of my income or current insurance coverage, any child who has been prescribed this course of treatment for an autism spectrum disorder will receive it for free. I had only to apply for a state issued medical access card in his name and a world of schooling and therapy was his. The catch being that in order to apply for the state aid, you have to apply for Social Security Disability benefits as well. Which brings me to the letter…
I applied for The Spawn because I had to and then sort of forgot about it. And then one day we got a letter telling us that The Spawn had been approved to get disability payments, and I lost it.
“He is NOT disabled!” flew out of my mouth with a fury that surprised even me. I had spent months dragging my son to doctors and specialists, recounting every symptom and behavior in great detail and demanding that he be treated. I spoke openly about his violence and hand flapping and had argued with friends who doubted that he was autistic; but when the Social Security Administration said he was disabled enough to need financial assistance some invisible line inside me was crossed.
I snapped at Mr. President that I didn’t need their money, that as soon as I got a job we would be just fine. I pointed out that other than his special (and expensive) diet the struggles we faced were not financial. He calmly pointed out that, at least for right now, I did need the money and I believe he also tried to suggest that having a little extra money for special toys and learning tools wasn’t going to hurt anyone. I wasn’t in the mood to be rational. I was snappy and hurt that someone out there thought my baby boy was disabled. It was the word that bothered me, “disabled” – yuck. So I argued some more and Mr. President finally just threw up his hands and said,
“It’s stupid to turn down money you are entitled to and I think you know that.”
So yesterday I went and signed all the paperwork and supplied all the remaining information and in two weeks I will learn how much we will get every month. I still do not like it. It has been suggested that I am upset because I do not like the way his diagnosis reflects on me; I can assure you that this is not true. I worry about how it reflects on him. The Spawn was born with the deck stacked against him; troubled and selfish parents, small scattered extended family and then it was all compounded by an ugly separation and divorce. When he was first diagnosed in January of 2008 the thought that played in my head like a broken record for over a year was “really universe? He needs this too?!?” It has never been about my ego, my reputation is as tarnished as it can get, but my baby is brand new and already covered in labels.
So I guess this is just one more. I am trying to file it away in my “as long as it gets him the help he needs I can accept it and face it” file but it’s harder to get in there than the rest were.
As many of you know, The Spawn and I used to live in Illinois. Right now the state of Illinois is planning to drastically cut the budget for autism and other mental disorder treatment programs, which would rob children and adults of critical therapies. If it were not for what the state of Pennsylvania offers to people with autism, The Spawn and I would be lost. Please go here (and anywhere else you can find) to sign petitions fighting these cuts. Please.
