Since last spring, I've tried to blog more professionally. I've tried to keep the blog focused on certain topics and use it less as a place to vent. Today, I'm just going to vent. There's a lot going on with my son, Ian, and I just feel like writing about it.
For the newer readers, my son Ian is neurologically atypical. He's eight. He's a beautiful kid.
This fall, he started third grade. He's in a special program for atypical kids. It's a regional public school that specializes in kids like Ian. He gets mainstreamed in a regular classroom for his specials, but does math and reading and other academic subjects in his small classroom. He also gets therapy for speech and handwriting. It's a fabulous program with dedicated teachers and I'm grateful that he's there. No regular teacher could handle his quirks.
He came home crying last week, because as the kids were waiting for the school bus, another kid told him that he was going to put Ian in a package and send him to Ireland. The kid is another atypical kid, so I can't be too mad at him. But Ian took the boy very seriously. He sobbed, "Mom, you'll come get to get me from the bad island. You'll come in a ferry and rescue me. You'll say, 'Here I am, sweetie'." Ian had constructed an elaborate story based on this ridiculous threat from a silly little kid. His story was very real to him.
Ian's speech has always been a problem. He taught himself to read at three, before he could talk. He gets therapy at school and we've supplemented with therapy after school. He's made progress, but a precocious four year old talks better than he does. The literature on children who aren't fluent by age eight is incredibly depressing.
Yesterday, I went to a meeting at the church for parents who are preparing their kids for First Communion. As the volunteers talked about all the steps that the kids would have to go through, I knew that Ian wouldn't be able to do much of it. He wouldn't be able to understand all the abstract religious ideas. He wouldn't be able to wear a scratchy suit. He wouldn't be able to line up with all the other kids and follow instructions. He wouldn't be able to stand the smell of the church if the priest used incense. He wouldn't be able to confess his sins, because he wouldn't understand what a sin was.
The other parents looked so calm. Their kids could go to the workshops and CCD. They would sit quietly in a room and listen to the teacher.
I talked to the church's Director of Education and she said not to worry, because they've had several of those kids before. My kid isn't one of those kids. He's a kid.
I've had so much fun going through the rituals of childhood with Jonah. I've wanted one more shot to do them again with Ian. But Ian can't do them. Everything is different.
We're finally getting Ian into soccer. It's a special ed soccer program, so the bar is low, but even that is complicated with E. On the first day of practice, Steve brought out Jonah's old shin guards. He didn't look excited to wear them until we called them "leg armor." Then he got all excited and let Steve strap them on. Then he went down to the basement to the chest where we keep all the old Halloween costumes. He came upstairs wearing full battle gear for the soccer field, which included a mask and a battle ax. He had to be talked out of slaughtering the other children on the field with a plastic ax from Target.
His program keeps the kids on grade level for all the academic subjects, which is great. He can handle the work, but everything takes longer. Every night for homework, he has to read a chapter in the Ready Freddy reader. We'll sit on the sofa and take turns reading and then he's supposed to answer some reading comprehension questions.
He's able to read the book pretty well. He stumbles with idiomatic expressions, but that's to be expected. His biggest problem is keeping his mind on the book. At the end of every sentence, his imagination goes wild and he plans out alternative plots for the character. When the hero, Freddy, gets into a fight with Max, Max says he'll squash Freddy like a bug. So, Ian imagines that Freddy turns into a superhero and uses magic to turn Max into a cockroach. Ian jumps up from the sofa to draw a fabulous comic strip of his new plot. It can take us two hours to get through a chapter, because of all the new plots and art work. Ian has a florid imagination.
So, why can't Ian talk? I've spent hours reading scientific studies trying to figure what part of the brain isn't working properly. Google is both a blessing and a curse. Over the summer, we took Ian for an audio-processing test at the local hospital. For two hours, we sat in a dark booth as the audiologist piped in sounds into Ian's ears. His therapists and I all believed that Ian was having problems translating sounds into meaningful language. After several weeks, we got the results in the mail. The report said that Ian has excellent audio-processing abilities. In fact, he's above normal. He scored in the hundreth percentile for some portions of the test.
We should be pleased, but we're not, because we can't treat a problem, if we don't know the source of the problem. When I talked about the test results with his therapist, she started crying. She said she felt like she failed him — ridiculous, but understandable.
We have to take Ian out of his mainstream music class at school, because he can't handle the kids playing their recorders out of tune.
When I sent him upstairs to get dressed for school the other day, I told him that he had to wear long pants that day. It was cold. When I followed him upstairs to find out why he was taking so long, I discovered that he had cut up a new pair of pants to turn them into shorts.
Do NOT look for information on the web about adults with neurological differences.
Over the summer, I had a really amusing discussion with some fellow bloggers about the prevalence of neurological differences among bloggers and their families.
Because our child is different, our lives are different. Most days, I am just fine with it. Ian's drawings are stunning. I am in awe of his imagination. (A battle ax on a soccer field!) He's a fountain of love. He talks about his brother so much at school that Jonah is legendary. There's something liberating about being free from the rules and expectations that other parents face. We get to go to the front of the line at Disney Land. Other days, it's tough to be different.
Apt. 11d 
Damn, Laura. I wish this were easier for you guys. I wish they’d been able to identify a target area for ST. I wish you could just revel in the battle axes and the comic drawings and not have to deal with all the rest of it.
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Are you getting support? Are you talking with other parents? Not everyone finds support in the same way, but I know what’s worked for me is finding other people going through similar issues.
Don’t let the literature depress you. Every day, our ability to address the needs of atypical kids is improving. Every day, more and more clinicians become better educated. Every day we learn more about how to celebrate the gifts of atypical kids and play down the weaknesses.
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laura, i love it when you write about your kids. i am in awe of your (exterior, at least) calm through the storms of raising a kid with “special needs” (god, i hate that term). Both Ian & Jonah are obviously amazing, wonderful kids. and it seems like while it might take longer & a more challenging path, Ian is going to find his place in the world as he grows, and he is going to have you guys to thank. I laughed out loud at the leg armor & battle axe – that is one creative, amazing kid. I am 6 months pregnant now & thinking a lot about “what ifs” with our baby – I know that “if” our kid has any similar challenges to yours, I will already have a role model. Thx.
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Our church is wonderful with atypical kids and the sacraments. Perhaps you could ask if Ian could have his first communion with just his family and friends? Or, perhaps they can do a smaller ceremony with less children in it?
At our church there were 300 children last year getting first communion during one ceremony. Even the typical kids were a nervous wreck.
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I’m sure you’ve seen her lectures on the web but I just saw a talk on autism by Temple Grandin the other day. She spent a lot of time talking about audio sensativities. Sounded similar to what you are talking about with music class. Very interesting…
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Our parish doesn’t have the kids go through First Confession and Communion en masse. It’s up to each parent to decide when their child is ready. Can you make an appointment to talk to your pastor, rather than the Director of Religious Education? It might be possible to choose a mass time with less noise and fewer people. I’d personally be tempted to wait until at least next year. You have a priest friend that you could talk to about this stuff, if I’m not mistaken.
C could have done First Confession and First Communion last year, but we decided to wait, and there has been a lot of progress since then with regard to moral and social awareness, physical ability, and self-control.
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I once unknowingly went to the mass where 100 kids were having First Communion. It took 2 hours. That’s how they teach people to read the bulletin.
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Neurological issues are scary, and most people don’t know how to deal with them. I wasn’t aware of how deeply seated this prejudice (or fear) is, until one of my children developed a relatively benign disorder. Stress brings it out, so keeping her on an even keel prevents problems. I did decide to encourage her to hide it, were it to start in her former school, as the teachers would send her to the nurse. The nurse would send her home, and not allow her to return. Unfortunately, with this condition, it does seem that the more fuss you make of it, the worse it gets. Thus, prevention is better, although that prevention involves not-thinking-of-pink-elephants, and playing down any episodes. I have a real sympathy for parents of children with epilepsy, after this small taste of unreasoning restrictions on children, driven by fear.
It gets better, though. A friend’s children have sensory issues, and taking steps to avoid situations she knows will make it hard for them to function well makes a world of difference. Getting older helps as well. We put a lot of pressure on children to be “normal,” even though our idea of a normal environment for children involves noise, chaos and mess. When children reach high school, though, we allow teenagers to seek out quiet. It gets better.
I know many people who work from home, doing really interesting things. It’s possible to control one’s environment to an amazing extent these days, thanks to the internet and computers. It gets better.
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Laura, I wanted to tell you this when we met at APSA, but since you’re writing about your kids here, I want you to know that I respect the hell out of the work, love, and just plain good old-fashioned care you’ve put into Ian (and Jonah, too). As Sarah says, you’re a true role model for many of us. I know that knowledge doesn’t make the hard days or the hard tasks any easier…but perhaps it’ll help make the good days and the finished tasks that much more rewarding. Thanks for the update, and the inspiration.
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When I was a kid (maybe 12 or something) I told one of my sisters (probably 6) that we were tired of her and so I was going to throw her away. I picked her up and carried her out to where the trash cans were. I thought she’d never believe something so crazy, but she did, and cried and cried. I took her back in, but then told her I changed my mind again, and she cried again. I really didn’t think she’d believe it a second time, but she did. So, I can see how the “mail you to Ireland” thing could happen. At least Ireland is nicer than the trash.
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Thanks so much for posting this. We have all followed the story of your ‘atypical’ kids with interest. You know, there’s a lot of discussion of this issue in the Chronicle of Higher Education — with a discussion of how many academics have atypical kids. (I had one melt down once when I took her to the university and wouldn’t take her to see “the tenure track”. Apparently, she thought it was like a race track and she’d be able to run on it.)
Just wanted to mention that if your child is melting down over people playing the recorder out of tune, he may well have perfect pitch — which is a gift, not a curse. Have you looked into Suzuki music education?
Eventually, your child will find his tribe, his people. It will just take longer. We mostly wrote notes to our hyperlexic daughter until about the age of eight when her listening and speaking caught up to the writing. (“Mommy and Daddy were very proud of you you today . . “) In retrospect, it was weird but wonderful.
If you haven’t already, check out the Asperger Oasis — which is a home, of sorts, for lots of parents of quirky kids. Best of luck!
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“(I had one melt down once when I took her to the university and wouldn’t take her to see “the tenure track”. Apparently, she thought it was like a race track and she’d be able to run on it.)”
That is fantastic.
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Me too, Laura. I really respect you as a mother, and gain strength in my own life from how you love, support and celebrate your children for who they are. That always comes through.
You have some more difficult battles to fight than I do, but advocating for differences makes the world a bit better for all of us.
I know you struggle with where you want this blog to be at different times, but these pieces, really, make a difference in the world.
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I too have huge respect for you as a mother and as a person. And hearing your stories about Steve and his friend’s Mustang or Ian and Jonah interspersed with the more academic posts really make the entire blog for me. There are many talking head/smarty pants out there – I enjoy hearing your smarts (and the wonderful commenters) AND about your life. Otherwise it’s just intellectual wanking for me…
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I feel you, Laura. It’s hard when their skills are so uneven, and you don’t have any certainty about outcomes.
One thing that comforts me in a small way is knowing that we don’t have that certainty with our ordinary kids either. None of us knows if one of our kids will get schizophrenia, be in a bad accident, just grow up plain old mean in spite of our best hopes and care–there aren’t any guarantees, just the love we can share with them now.
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I enjoy you writing about your kids, too. Especially recently. Keep it up. H
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do you read amalah.com?
her son has major issues and one is perfect pitch, which in tern makes him unable to understand or deal with music or language stuff. She describes the music with her son as he describes in it Color instead of sound.
Might be worth a look.
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Laura, I wish I could reach out and give you a big hug! As parents we work so hard to do right by our kids — something that is especially hard when the cards seem stacked against one of them. Just know that you are doing your best despite the overwhelming feelings of frustration you may sometimes experience.
I too enjoy reading your blog because of the range of topics and the inclusion of items about your family. You come across as sincere and REAL. It makes up for some of the time and distance life has put between us since grad school.
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Oh, thanks all for your kind thoughts. Please don’t admire me. You would all do the same for your kids. There are others who are truly saintly out there and I’m not one of them. I was in rush for to get to a school function yesterday and I wasn’t able to be patient with Ian. There was yelling and there were tears.
I haven’t joined a formal support group, because Ian is so atypically atypical. But I’ve gotten to know so many special ed parents over the years, and we have chats.
We do, in fact, suspect that Ian has perfect pitch. He howls in pain when I sing. “STOP SINGING NOW,” he’ll shout and cover his ears. heh.
Tina F, so amazing to reconnect after all these years. Three cheers for Facebook and blogs.
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He howls in pain when I sing.
Let’s first rule out the obvious. How many other people howl in pain when you sing?
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Related: A nun intent on having a nice concert once told my dad to just move his lips without singing.
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“Related: A nun intent on having a nice concert once told my dad to just move his lips without singing. ”
People tell me this all the time. Even at birthday parties (sometimes they just eye me with horror). I’ve learned to sing very very quietly.
Laura, I have no fantasy that you’re a saint. I hope I do try to do the same for my kids. And the saints among us are really really rare. I admire you for doing the hard work that people don’t get enough admiration for, because it doesn’t scale up and can’t be sold, and writing about it, not for being a saint.
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I admire you for doing the hard work that people don’t get enough admiration for, because it doesn’t scale up and can’t be sold, and writing about it, not for being a saint.
Ditto. (Though, honestly, is the difference between “doing the hard work that people don’t get enough admiration for” and “saintliness” really all the great?)
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I hate it when people try to categorize youngest because their generalizations not only get it wrong, but seem cast in stone. “She’s autistic, so she’s very visually-oriented and poor at reading.” No! Right now, she’s doing wonderfully at high school in terms of academics, but there have been a few incidents where her violations of social norms were staggering.
Awareness of non-neurotypical behaviours is nice, but so many race to put a label and enact a plan instead of stopping to see what’s needed. Good luck with getting Ian over this rough patch and yourselves ready for the next one.
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