Oops - nope. Batteries are dead.
You know the Lego thing my son was working on last night? It started as a Predator, but turned into a Darth Vadery kind of bathroom guard. You probably think of them as superstitious nonsense, but they really work. I took a bath tonight and not one single ghost accosted me.There's good news: my son is eligible for services provided by the Lanterman Act, a state funded program for people with developmental disabilities. We were very concerned that he might not be eligible because they said he wasn't autistic enough. Can you believe it? All that fighting to make sure he got the right care, the right school placement and trying to shape him into a life as un-autistic as possible, and suddenly we have to prove he's autistic enough for services. After meeting with him and doing a FOUR hour evaluation of him as well as interviewing teachers, doctors, etc., they gave him eligibility.
If I had withheld his meds that morning, they would have approved him on the spot.
This means he now has access to: diagnostic evaluations, lifelong case management, advocacy in securing services from schools and other organizations, assistance in locating and using community resources, community resource development, genetic counseling, prevention programs, community education and outreach, parent support services and program monitoring, evaluation and technical assistance to service providers. It means that they'll help him train for jobs if he needs that, they'll help him find a place to live if he needs that and for the rest of his life, they'll help us support him however he needs it. Financially and emotionally.
That's a big deal. My son has a very high functioning form of autism. He's brilliant academically and in the scope of his interests, but he has serious social defects that make it difficult for him to fit into the world. There's nothing about him at first glance to suggest he's any different from any other fourteen year old. You don't realize he's different until you talk to him for a few minutes. People tend to think it's all laziness at first.
I don't know - I didn't really think about how much autism had impacted him until they interviewed me and I had to go through back through his development and life all at once. I think that in getting through every day I just kind of focus on the issues of that day, which usually involve the issues of that week, or that month or the coming week or month. The rest of his life.
Maybe it's just too scary or heartbreaking to think about it all in one breath. I just didn't realize how affected he had been by it, how affected I had been by it. If I didn't have enough to worry about before, it became clear during that interview that he was going to need help for a long time and what if I am not always there to give it to him? To hold his hand at school, to go into the doctor's office with him, to prove he will be safe in the world?
TIME magazine has a recent article titled 'Parents Behaving Badly', which discussed the way teachers feel about over involved (or under involved) parents. An excerpt:
"Long gone are the days when the school was a fortress, opened a couple of times a year for parents' night and graduation but generally off limits to parents unless their kids got into trouble. Now you can't walk into schools, public or private, without tripping over parents in the halls. They volunteer as library aides and reading coaches and Mentor Moms, supplement the physical-education offerings with yoga and kickboxing, sponsor faculty-appreciation lunches and fund-raising barbecues, supervise field trips and road games and father-daughter service projects. Even the heads of boarding schools report that some parents are moving to live closer to their child's school so that they can be on hand and go to all the games. As budgets shrink and educational demands grow, that extra army of helpers can be a godsend to strapped schools.
But parents, it turns out, have a learning curve of their own. Parents who are a welcome presence in elementary school as library helpers need to learn a different role for junior high and another for high school as their children's needs evolve. Teachers talk about "helicopter parents," who hover over the school at all times, waiting to drop in at the least sign of trouble. . . They're mama grizzly bears. They're going to defend that cub no matter what, and they don't always think rationally."
. . . As children get older, the parents may need to pull back. "I believe that the umbilical cord needs to be severed when children are at school," argues Eric Paul, a fourth- and fifth-grade teacher at Roosevelt Elementary School in Santa Monica, Calif. He goes to weekend ball games and piano recitals in an effort to bond with families but also tries to show parents that there is a line that shouldn't be crossed. "Kids need to operate on their own at school, advocate on their own and learn from each other. So in my class, parents' involvement is limited," he says.
. . . When a teacher asks parents to be partners, he or she doesn't necessarily mean Mom or Dad should be camping in the classroom. "
This is all fine and well when you have a normal kid. But when you have an autistic child, you're forced into the role of Uber Mama-Grizzly Bear. Especially when your kid is autistic the way mine is. An obviously autistic kid will be catered to from the start. An Asperger's kid has to prove themselves all the time. They have to prove they aren't lazy, aren't deliberately disrespectful, aren't being maddeningly literal to obscure issues or avoid discipline.
Before my son was diagnosed with Asperger Syndrome, he was assumed to be deliberately disruptive and disobedient. I had teachers threaten to remove him from the home, tell him he or I would go to jail. One teacher taped his mouth shut with duct tape, taped his hands behind his back and made him run laps. Kids regularly tortured him.
You learn to do a lot of fighting that way. You learn to be involved with your kid's school environment that way. You camp out in the classroom because you have to in order to protect your kid, to keep him from being eaten alive by the system.
Once your kid is diagnosed, they make you fight for every inch of space they give you. They don't tell you about available services; you have to go looking on your own. Once you begin to understand what you need to know, you have to fight to get an evaluation by the school, fight the school district for services, fight the school itself when they want to know why you aren't sending your kid there.
They make you fight even when they know what the teacher did to him, when they see the bruises on him from being hit by classmates, when they literally have to peel him off your leg, screaming, because he's afraid to be there without you.
When your kid has been so badly misread by the system designed to educate and protect him, when your kid has been made afraid to be there without you, they have a lot of nerve complaining that we Mama Grizzlies are too involved.
No one knows how bad you want your kid to be normal.
No one knows how badly you want to trust the school to do the right thing.
No one believes that you aren't using him to avoid having your own life. When you have to protect your kid this way, when they make you fight that way, you don't have the room or time or energy . . .no one knows how badly you want to have a life of your own, how badly you want to be un-involved for a while or how guilty you feel for wanting it.
How quick you would be to hand him over to the school every day if you could trust them. And when your kid has been so terrified that he literally cannot sleep in a room without you there, you worry about what may happen one day if you aren't there.
So. Anyway.
Knowing that there is finally going to be some help is a big deal.
Diatribe over.
