There's a great video by Elizabeth Aquino that shows parents of special needs kids giving advice to themselves the day they got the diagnosis. The parents hold up a piece of paper with the advice written on it.
The video made me cry. I want to tell you to watch the video, but I'm not sure if it made me cry only because I'm the mom of a special needs kid. Anyway, here's the video.
The thing about the day you get the diagnosis is that you already knew something was wrong. You just didn't know how bad.
The first hint that I knew things were bad is that raising our son was so, so, so hard, and we couldn't believe that people did this for three and four kids at once. "How do people have more kids?" we would ask. "How is it possible?"
Then my sixteen-month-old son was starving to death. Literally. The doctor told me I had to start force feeding oil and butter to get calories into my son.
I went home and did nothing.
The doctor called me back into his office the next day. Because he knew that parents cannot comprehend terrible news about their kids. Parents are slow to process. He knew I would do nothing.
That was six months before my son actually got the diagnosis of Aspergers. By that time I was in constant disbelief that this was my life.
Kids with special needs get individualized education plans (IEP). I looked around and noticed a very wide range of IEPs for kids with a very narrow range of special needs: the sign of a corrupt system.
Schools enforce IEPs very loosely unless there are lawyers around.
It was clear to me that the only way to get an IEP that gave my son everything he was legally entitled to was to fight for it. And it was clear that even after he had a great IEP, the schools cut corners with enforcing it. Not because teachers are bad or administrators are dishonest, but because there's simply not enough money.
So by the time my son was in first grade, I had hired a lawyer to fight New York City social services, and I won. And I had hired a lawyer to fight Madison WI public schools and I won.
About a year later, when it was clear that I would need to sue the schools again, I gave up. And here's why.
The public school system is under the legal obligation to give an appropriate education to all kids. But it's too expensive. The public schools simply don't have the money. I could sue the school district every year to get nearly a million dollars in extra services for him. Because it's his legal right to get them. But the school can cut corners every time. There is no way to enforce that they give my son what they say they will give him unless I take them to court.
When I won the argument that he did not receive the services he's legally entitled to in the Darlington WI schools, then I had to fight for how they will make it up to him. And who would deliver the services. And by the time I'm done arguing that, it's the next year.
Giving your child what is legally mandated is too expensive for your child's school.
And here's the bottom line: It's cheaper for the school district to fight one or two parents in court than it is to give in on all the services. Unless there is a huge number of parents who will take the school to court, court is cheaper than giving kids what they are due. (It's no coincidence that places with great services have very wealthy parents who can hire lawyers: NYC; Newton, MA; Bellevue, WA.)
And I can't really blame the schools. The people who make the laws about what schools need to provide are not the people who have to balance the school budget.
And, if you're reading this blog you are probably thinking that no kids receive an appropriate—this is the legal term—education in public school, so why should special needs kids get all the money? It's a decent question.
One that I couldn't answer.
It's more cost effective to pay for services out of pocket than fight for them in schools.
So I stopped fighting for services to make public school good for my son. I gave up all the free benefits he qualified for because he's special needs in public schools. And instead I paid for everything out of pocket.
It's working out so much better. Now I can focus on figuring out what my son really needs instead of what my son qualifies for. I can spend my time earning money instead of navigating public school IEPs. And I can figure out how to pay for services rather than how to pay for lawyers.
The problem that comes with having a special needs kid is actually the problem of just re-imagining what your family is, so you can make a family where everyone is growing and feels loved and supported. And you don't need to spend time in the schools to make that happen.