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.
I watched a lot of Temple Grandin this morning, so it's time for a disability post.
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:
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- "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.
Apt. 11d 
Well, I do agree that you need to go with your gut and not waste time with therapists you feel are giving you false reassurance or off-base diagnoses, but lots of that wasn’t true for us. We had the SPECIALISTS at the big-time teaching hospital with the autism program tell us our kid was just fine at three–then a year later they abruptly decided the opposite (and that our kid was, suddenly, clearly retarded) but they didn’t make any useful therapy suggestions. Whereas the school district gave us great, reality-based feedback and an educational diagnosis of autism right off the bat. (And yes, our kid is weird but quite verbal and interactive, and doesn’t have the standard markers. They diagnosed her anyway.)
I also don’t agree with “get as much therapy as you can.” Kids need to be kids and autistic kids should be able to have unstructured time to learn and grow too. I would say to play with them at their level as much as possible, and find places (our non-therapeutic preschool was one) where the caregivers really, honestly include them and give them a chance to step up.
Our lame-o district-run special ed program coexists with a mainstream school and my kid gets to spend time in both classes. I guess I don’t think it’s lame, in fact.
Expertise is local, I guess.
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“Expertise is local, I guess. ”
I think this is true — and it’s ’cause there are no clear and simple answers to the issues.
“Never have routines” and “push them to wear the itchy shirt” were what struck me.
I have neurotypical kids (I’m pretty sure no one would diagnose them), but I’d never push them to wear the itchy shirt. I’m also not going to push my daughter to wear uncomfortable (but attractive) shoes that pinch her feet. I miss the days when my son thought it was fun to dress up in a suit and tie to travel (looks just like daddy going on a business trip), but I’m not going to force him to do it.
My take home lesson from what you’ve written is that you should be fierce in advocating for your child (be that ignoring the advice of the school district to turn to the university pediatric center, or in ignoring the pediatric center and turning to your school district). You shouldn’t turn the issues over to someone else and assume that they know what they’re doing and that they’ll do the best for your child.
Looking forward to hearing the Grandin interviews.
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PS: Has anyone read Grandin’s mom’s book? (“Thorn in My Pocket”). I want to read it, but haven’t been willing to pony up the money without knowing more (our library doesn’t have it).
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“Expertise is local, I guess.”
Indeed. I know a spectrumish child who went to a pediatric neurologist for headaches when she was 4. The neurologist saw the child several times but never said anything about Asperger’s, autism, etc. The diagnosis only came a lot later, from a psychologist.
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Asperger’s is hard to diagnosis till age 6 or so, from what I’ve read. The child presents at a fairly normal rate of development till then.
In August, sandwiched in the middle of 4 days of testing, E saw the pedi for an annual checkup. The pedi seemed to feel E had no developmental issues, even though I had been discussing my various concerns with him for the past two visits. *eyeroll*
E’s 1st grade teacher was the first to suggest something spectrum-related, but then she said he didn’t seem like other kids with AS she’d known. I started to wonder if E had giftedness issues that might be complicating his presentation. I didn’t see a pediatric neurologist, though maybe I should have. I went straight to a developmental psychologist who specializes in kids with attention deficits and giftedness.
“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.”
Yes, this. The only thing the first comment ever did for me was to reinforce the idea that I must’ve had undiagnosed AS when I was a kid. And I probably still do.
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“Mom, I don’t know why, but I have a lot of joy in my heart today.”
Awww. So lovely.
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Insofar as this advice is about state or school district services, it’s important to keep in mind that it will all be different in each state, with some much worse than others.
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My comment grew out of control, so I wound up posting it on my own blog.
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We’re in Northern NJ. We have excellent special ed programs here. People move from other parts of the country to use our services.
Ian was in a town special ed program for two years. He made minor progress in that program. But it was a general ed class with kids with all sorts of issues. The teacher wasn’t specifically trained in autism.
When he was five, he was moved to a regional special ed school geared at kids with mild autism or autistic-like symptoms. It’s a public school program housed in a regular elementary school. He’s mainstreamed for part of the day, but most of the day, he’s working in small groups on academics and speech. After six weeks in the program, he started speaking better. After two months, he needed a whole new IEP. Maybe his brain just matured on his own. But more likely, it was the help that he received. He’s doing so well that he’ll probably be completely mainstreamed in a year. He’s doing grade level work. He could probably be doing third grade level math, but no school would let him advance that much.
Even though our district gave us a hard time for two years, they are willingly footing the bill for this program. I’m forever grateful.
re: the scratchy shirt. Kids have to function in society. If a kid just doesn’t like fish or hates a hot sweater, no big deal. But if the kid has so much going on that they can’t go into restaurants, movie theaters, or auditoriums without shrieking in pain, then they have to be gently nudged to get over it. Baby steps.
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Great post, Elizabeth!
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“Do not seek advice from your aunt, your pediatrician, the nursery school teacher, the neighbor, the school district, or a psychiatrist.”
Aren’t psychiatrists mainly just for writing prescriptions these days? I was talking to my mother-in-law (who is a mental health professional) about this stuff over Christmas, and from what she said, it sounds like the further you go up the mental health hierarchy of jobs, the less they can actually do for kids like Ian. Overgeneralizing, psychologists do more than psychiatrists, and therapists can help more than psychologists.
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MIL also thinks that the most cost effective and just plain effective way to work is to train a college student to do social skills stuff with the child. That way, you can get a lot more hours in.
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I would add this to the list: “If your school gives your child extra services, with no notice, and no explanation to you, the parent, have that child evaluated privately. Do not trust the school’s evaluation.”
I have friends whose children should have been evaluated, but were not. The more affluent the parents are, the more likely the school is to evaluate children in self defense. Conversely, if the school thinks you are unlikely to request services, they may be able to overlook certain behaviors for a long time.
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There’s a fine line between pushing to make your kid fit in and structuring your lives so s/he can spend most of their time comfortable. I opt for the latter more frequently, and feel that when my son is older he’s more likely to see the purpose and reasons for engaging in uncomfortable activities and can then better make the choice himself. This has already happened (at age 9)- he wanted to play Settlers more often than his father or I were willing to, so he made a friend who was willing to do it. I feel that this approach is more respectful to who my kid is (rather than who I or the world may want him to be).
He does end up in many situations he doesn’t like because we can’t always leave him at home. This has helped him learn that other people’s needs sometimes override his preferences, and he’s learned to handle such situations when need be. But he also knows that we do our best to consider his needs too, and this makes him less resentful about doing things he’d rather not.
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We have constantly pushed Ian to do things that were uncomfortable for him. He had to overcome stuff when he was four. At seven, he is mostly quirk-free. He goes and does everything his older brother does. Sensory problems are extremely minor and don’t restrict his life at all. I’m not sure if constant pushing or maturity is responsible for the changes.
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