An old friend drove here from Connecticut to have lunch yesterday. We reconnected after many, many years through Facebook. Somehow, she figured out that one of my kids has a disability. Maybe I posted a link to one of my articles in the Atlantic.
She drove all this way, because her youngest daughter has some challenges, and she wanted to pick my brain. We talked for 2-1/2 hours in a fancy diner in town. I’m five years ahead of her, so I offered some elder stateman’s advice on parenting a special needs kid. Even though our kids have different challenges, our parenting experiences were identical.
All special ed parents are the same, even though the kids are all different.
1. The Label Hunt. Some kids have really obvious disabilities. Parents know immediately that their child has Down Syndrome. But on the lighter end of the neurological disabilities, there are a dizzying array of options. Your kid might have SID + OCD + some language disorder or they might have autism. The pediatrician, the neurologist, your parents, and the school district will each put a different label on a kid. No parent is born knowing what all those words means, so they are torn in different directions.
2. Fighting for services. I’ve met some parents who were remarkably on the ball on day one and didn’t spend much time in the label hunt phase. They got the right label quickly and were able to demand services from the state and the school district. I wasn’t one of those parents. The longer that you spend hoping that the problem will just go away, the longer that the state and the school district will not provide your kid with therapy. Still, almost every parent that I’ve met, even the on the ball parents, have to fight. Schools want to give the least amount possible. All special ed parents have to put on their bitch hat on at one time or the other. You’ll come in contact with bureaucrats who lie to you. You might have to hire a very expensive lawyer or education advocate to support you. It’s very hard to keep your anger in control and to still have faith in human nature during this time. It’s hard not to envy other parents who just send their kids off to Kindergarten without sleepless nights of stress.
3. Learning about your kid. You can’t parent a special ed kid the same way that you parented your other kids. They have challenges. Some don’t sleep. Some can’t understand what you’re talking about. Some don’t eat. They don’t meet milestones. They might make very embarrassing scenes in a supermarket. You’ll want to push them, but you can’t push too hard. It takes a really long time to learn how to encourage them to succeed, while remembering to chill out and love them.
4. Finding your gang. If your kid is typical, then you meet people at nursery school and the PTA. You make friends at the bus stop. People call you to set up playdates. If your kid is different, nobody calls. It can be very isolating. Eventually, you’ll meet other parents of special ed kids at after-school activities or in the waiting room of speech therapists. From them, you’ll learn about services and get gossip about the school bureaucracy. This is extremely important information that you can’t find on the Internet or a book. Also, many special ed parents (not all) are awesome people, who aren’t angling to get their kids in the honors classes in high school or bragging about their kids’ SAT scores. It’s refreshing to meet people who aren’t caught up in the suburban rat race.
It’s incredibly unfair that special ed parents are tortured like that. Some of the torture is self-inflicted. It takes a while to get over the grief. But other torture is completely unnecessary. Schools shouldn’t lie to parents; they shouldn’t angle to give kids as little help as possible.
Apt. 11d 
I don’t know how generizable this is, but I know one couple who were in the “hoping the problem will go away” phase for a very long time, until their son was almost ready (age-wise, not ready at all otherwise) for kindergarten. Five years and a lot of difficulty later, they are divorcing, and these are the greatest, most generous, and (I always thought) well-matched people. It’s hard to know what other people’s problems are, but when the stakes are so high for your child and you disagree about what to do, it’s very hard on the marriage.
LikeLike
My husband is a speech therapist, and he talks frequently about how different subcultures in the US deal with special ed differently. For example he believes recently-immigrated families have more trouble absorbing this news.
Sometimes the denial you speak of results in attempts at home schooling. The families where home schooling was attempted, and failed, and the kid shows up at school at perhaps age 7 with almost no skills – this is the worst case scenario. What a nightmare.
LikeLike