When I go into the boys' bedroom in the morning, I turn the lights on and raise the shades. I give Ian a rub and say, "wake up, little boy." He slowly opens his eyes and, then he smiles. It's a huge, toothy smile. Every morning, he wakes up smiling. How great is that?
Jonah is a happy camper these days, too. He turned to me the other day and said, "Mom, I don't know why, but I have a lot of joy in my heart today."
It's just swell that both my kids are thriving right now. It's a pleasure not to worry. There were those days several years ago, when Ian spent most of his days screaming with frustration. Things are so easy now that I feel like I'm on vacation.
Five years ago, we noticed that Ian was not meeting his speech milestones, and we started down the disability path. Here's what I've learned in the past five years:
- If your child isn't talking by two, is super picky about food, doesn't like long sleeve shirts, can't sit still in nursery school, doesn't like bright lights or loud sounds, doesn't respond when a stranger says hi, doesn't like being touched except by you, walks in circles, spends a lot time doing one thing, doesn't like getting his hair cut, doesn't like taking a shower, suddenly starts crying a lot at age two, hums, or can't run, then go get him/her checked out. If he/she is doing just one of those things, then get him/her checked out.
- If he/she maybe, sort of does some of those things, and, in addition, does some super cool things, ie can read by age three, is super verbal, is extremely knowledgeable in one thing, can make wonderful patterns, can memorize entire dialogs from a movie, or draws fabulous pictures, then get him/her checked out.
- Do not seek advice from your aunt, your pediatrician, the nursery school teacher, the neighbor, the school district, or a psychiatrist. They will either tell you that:
- "Nothing is wrong. You were a little weird when you were a kid, too."
- "The problem is that you are a bad parent. You just need to be stricter."
- "Let's just talk about things."
- Go to a pediatric neurologist first. You don't have to go to a fancy hospital and have a team observe the kid for two days and get an itemized breakdown of all the problems. Just go see a pediatric neurologist who will give the kid a once-over and write a letter. That letter is very important. More later. The neurologist will also attempt to give you drugs. Put her off, until the child is six or seven.
- If your child doesn't talk or has other quirks, you qualify for state sponsored therapy until the child turns three, when the school district has to take over. Getting qualified for the program is a PAIN IN THE ASS. It takes up a ton of time dealing with all the tests and the paperwork. There are going to be some very annoying people tromping through your house and asking inappropriate questions. And chances are the therapy that you get is going to suck. You get what you pay for. Free therapy sucks.
- Pay for the therapy yourself. Get as much therapy as you can. How do you know if the therapy is good or not? If your kid screams through the whole session, then the therapy is bad. It took me months to figure that one out. If your kid makes no progress, then the therapy is bad.
- Switch therapists a lot. Studies show that kids make the most progress in the first few months of therapy, but progress levels off after a while.
- Yes, therapy is expensive, and insurance doesn't cover enough of it. Tough. Get another job.
- When the child turns three, the school district is responsible for the child's therapy. Well, that's the way it's supposed to work. School districts think that the health insurance companies and the parents should be dealing with it. They want to give all that money to the football team and not the disabled kids. Nobody gives them a gold star for helping out your kid. You have to make them to do the right thing.
- The first weapon that you have is that letter from the neurologist saying that your child has autism. Ooh. Oooh. Scary word, I know. Chances are your kid doesn't fit neatly into the autism category. Maybe it's just one or two things that are off. So what? As soon as the school gets that letter with the A-word, then your kid automatically qualifies for certain services. That is why your school district will never diagnose your kid with autism. Never. So, don't rely on them for that. They might even persuade you not to go to the neurologist.
- You want your kid to go to a school with high-functioning kids with neurological problems. You do not want your kid to go to some lame, district-run, special ed program with teachers who have no training in your kid's problems. Avoid at all costs.
- If you show this letter to the school district and are very specific about what your kid needs and they still refuse to help you, then you should move. Do not waste time learning about your legal rights. By the time you get your a law degree by reading all those legal rights websites, your kid will be ready for college. If you can afford a lawyer, then you can afford to move. Move to the highest income town around. If you can't afford a house there, then rent an apartment. It's not an iron-clad rule, but, in general, wealthier towns have better special education programs.
- Sign up for every special education sports and art program. Get over the special education label right now. I mean it, get over it. You need these programs to find other parents and then pump them for information. Ask a million questions. You are not going to find this information on the Internet, so don't even bother. YMCAs have a lot of special ed programs. Start there.
- You have to network with real people. You aren't going to find information about local schools and programs on the Internet. People are too beat to post this information. They also don't want to tell the world about what they found out.
- Do not construct the perfect world for your kid. Leave your house. Take the kid every where you go. Take them to parties. Never, ever have routines. Stop them when they talk to themselves. Punish them when they have temper tantrums. Make them go to the park and into the pool. Gently push them to eat different foods and to wear the itchy shirt.
- Don't worry too much. Things get better. They get a lot better. Quirks dissolve. Speech improves. Hopefully, your kid will smile in the morning, too.