Jill brings up a good point. I sure don’t envy parents of typically developing kids who have food issues — ingesting too much or too little — but I do think Alex should be left out of such debates (I do envy parents who have autistic kids who ingest too much food — I know that’s a nightmare too and I know I shouldn’t envy them but I do, because the crabgrass is always greener).

Photo courtesy of Shawnzam (flickr.com)

Alex’s first food came from a can that had been sealed by a chemical company, so right from his birth we weren’t picky about what he ate.  Alex was, however.  I remember sitting in front of his high chair and running through the Cheerios, Gerbers spiked with cream and maple syrup, strips of crisp bacon: we were at that time in a race to free him from his feeding tube, and any weight from anywhere was a blessing.  Most of that weight came from the floor, where Alex would cast even the bacon (”What’s that? Is it new? No!” or “Get it off my tongue! It’s a serpent from Hell! Serpent from Hell! Get it off my tongue!”).  After Ned, I can see this wasn’t normal.

Eventually we dumped the feeding tube — a near-run decision on the part of the doctor, who figured that the thing was probably hindering as much as it was helping at that time — and moved onto food. Jill was first to realize that moving onto real food for a little New York boy meant moving onto restaurants. “Guess who just ate bacon in a coffee shop?” she asked me on the phone one afternoon. She said his eyes got real big. And why shouldn’t they have?

Every feeding milestone with Alex has been a moment of moments. White rice. A brownie. V-8 juice. Yogurt. Hot dogs. A single strawberry. He turned 11 over the weekend, and he weighs about 55 pounds. I begin to wonder just how much bigger he’s ever going to get.

I guess I’d raise my eyebrows at a doughnut issued in gym class (where was this gym teacher when I was in 10th grade??). But what’s right for one person’s fork isn’t right for the forks of all, and that seems to be what food’s relation to Alex and his autism is all about.

***

Autism, food, and eating, from Neurodiversity.

Tips on tackling selective eating associated with ASD.

Here’s a national awareness day I’d like to see. Or perhaps it should be a freedom-from-awareness day. We’re not a family who does biomedical interventions (although there are all those things Jeff loves to dissolve in water). But we live with and think about autism every day. Am I the only one who finds this exhausting, especially when you throw in the occasional broken night of sleep?

Photo by Elsie Esq. (flickr.com)

If Autism Awareness increases others’ understanding of this disorder, Freedom from Autism Awareness helps people to recognize the burden on families living with autism so they can support them with sympathy and understanding.

So I’d love one day of the year that proclaimed freedom from thinking about, worrying about, reading about autism. Instead, families living with autism would be treated to a special celebration with delicious food (gluten-free, for those who are on special diets), music, live performances.

If you’re someone who knows someone whose child has autism, you can help celebrate by not making suggestions or asking if they’ve read Jenny McCarthy or seen that piece on CNN or heard of melatonin for sleep problems or seen “Rain Man.” I suggest taking your friend to a movie or buying an elaborate gift basket with a lot of fresh fruit. Don’t buy greeting cards. (Though I’m sure the card companies will rush to put out cards that say, “With love and understanding on your Day of Freedom!”)

Strolling jugglers, picnics, shady trees, a child-care center, napping pods, salt-water wave pool, chocolate fountains. Bruce Springsteen, Crazy Frog, the Black Eyed Peas and a philharmonic orchestra or two, and a good high school marching band would be terrific. The day would end with fireworks and a make-it-yourself sundae and martini bar. And an appearance by the Lipizzaner stallions would be a nice touch.

I was speaking last night to the director of the new YAI Autism Center, for which I’ve written two blogs. “Beautifully written,” the good doctor said of them, so naturally I thought he was a pretty sharp guy.

“I’m curious to see how the blog will develop,” he continued. “It seems that often when a center like ours has a blog, it finds itself having to take some stand. I was wondering what your views are?”

Oh. In the whole cause-of-autism thing? Yes.

I have no stand.  I usually answer that better minds than mine are working on this. Premature birth? Vaccines? Phases of the moon? All are good candidates. I’ve read up on the vaccine/mercury versus non-vaccine/mercury debate, most recently in Autism’s False Prophets, and I haven’t settled on either side. I am certain, however, that something’s responsible for Alex still liking “Elmo” and “Dragon Tales” at nearly age 11.

So I dredged what I could recall from Alex’s vaccination schedule from back when Bill Clinton was still president and Godzilla was the hot summer movie, but honestly, when your first baby lives in a plastic box and you must leave him in a hospital night after night and you still have what will be a full year ahead of you of more of the same, the shot slate doesn’t stick in your mind — especially if it’ll be a long time before you realize that slate’s potential importance.

I do know what side I fall on in the debate: on the side of not believing you have a lock on the whole truth, and not on the side of making death threats to those who publicly oppose your views. The unending ability of people in a terrifying situation to fragment, takes your breath away.

The doctor talked to me about the latest research and I agreed it sounded promising, and I assured him that if he stumbled across a cure I’d be one of the first in line. But, last I leaned on the crutch of the Layman Parent Writer:

“My opinion,” I said, ”is that I fear for Alex’s adulthood.” That certainly seemed to be something we agreed on.

***

Visit YAI’s Autism Center Community here.

“Toddler Brain Difference Linked to Autism,” from CNN.

Researchers find first common autism gene, from Reuters.

(Image: taoism.about.com)

Just seconds after Jill announced from the bathroom that Alex could squeeze out the toothpaste by himself I hear her announce, “And we have bleeding gums!”

I’ve always been grateful for any toothbrushing that Alex did for himself. They taught him at school, and after an initial shakedown - he had to remember to brush the tops as well as the bottoms - at least it was another task he could handle by himself.

But bleeding gums? My gums bleed sometime during dental cleanings, but I’m 47. Alex is 10.

So now we turn to all those things they say you’re supposed to do and all of us feel guilty for not doing enough. Floss. A Waterpik on the low setting. Elemental teeth care, which in our case will be taught against the wall of sand that is autism.

“Ned,” I say, “listen…” I fill him in the bleeding gums, and point out that Alex will often do things if he sees Ned does them and they seem like fun. Ned agrees, and flies into using the Waterpik; first thing Ned does is spray the mirror.

We’re no strangers to questions about Alex’s dental care. His teeth are yellow (mine have been too, for decades, until White Strips came along). His upper gums seem swollen, his teeth just little buds in the pink. For a while we worried that he was grinding his permanent molars down to the gums, and we wondered if he needed caps.

For a few years we’ve been taking him to one of the few dental clinics available to special-needs kids in New York. Good place, except every time we went we found a new dentist waiting for us. All nice dentists, who all said Alex was a pretty good patient in the chair (when somebody screams, it’s easy to see their teeth…), and that no, he wasn’t grinding his teeth and yes, he did have a small cavity but it was in a baby tooth he’d likely soon lose anyway.

Bleeding gums. Alex watches Ned spray the mirror, standing there laughing with me sitting on the toilet and hugging him as if he were about three. Alex giggles into his hands, which he holds over his mouth. In the grocery store, I walk Alex by the toothpaste aisle, hoping to find Elmo Dental Floss (Do they make such a thing? They should.) “Alex, this is floss,” I say.

I think we can do this. My first Waterpikking with him goes well: He laughs as the gentle spray hits the swollen pink. I teach him to brush at 45 degrees. All the stuff we feel guilty about not doing. But there’s a world of difference between feeling guilty about not doing something for yourself and not doing it for Alex.

Primer on pediatric dental care for children with autism: http://dentalresource.org/topic55autistic.html

(Image: sxc.hu)

My biggest fear for Alex right now is that one day he’s going to open his mouth and display a horror show of missing teeth, yellowed stumps and strange misshapen gums to the world.

Yesterday morning, I was watching Alex brush his teeth.  His usual method takes him about 10 seconds, so I started singing the Alphabet song to him to make him brush longer. Impatiently, I took the brush from him and did a little brushing for him. His back gums, which seem very overgrown to me, seemed a little puffy. Then his front gums began to bleed a little.

Maybe we haven’t delved deeply enough into special needs dentistry. So far, Alex has had annual checkups with the special needs clinic of an agency in New York City, and it seems kind of lacking. A few dentists have already come and gone during the last few years. One suggested we bring Alex in every few weeks just to get used to going there and sitting in the chair, but she left. I liked this idea - and think they should partner with their occupational therapists to teach kids to sit in the dentist’s chair. I hate to think of Alex being “papoosed” - a term they drop casually, like it’s just a hit of nitrous oxide.

Don’t know what the papoose board is? On this site, I see a caution against going to dental practitioners that use it or other restraints - which makes me uneasy and unhappy. What kind of  subpar dental care have we been subjecting Alex to?

My answer to what might be an incipient gum problem (and I hope it works) is the Water Pik. (An aside: I’ve had my own adventures in dental issues, and I’m a recent convert to the Water Pik. “Your gums look great!” my hygienist said, a few months ago.) So yesterday I filled it, got one of the extra heads, and set the dial on the lowest setting. I let Alex feel it on his finger. So far, so good. A few giggles. Then I tried getting him to put it in his mouth. Not so good. However, he did give in eventually and let me put it against his gums for a few seconds.

We did it again last night and this morning, and my plan is to just keep doing it over and over, using threats and bribes as necessary. (I have cookie dough ready to go, even as we speak.)

Jeff sent me a link to a video that shows a dentist helping a child with autism get use to the dentist’s chair, and I can see it’s going to take a while. Will it be difficult? Sure. But, all I have to do is recall a man I see on the bus now and then. He’s developmentally disabled. He’s always with his mother. His mouth is one of the saddest things I’ve ever seen, and I’m sure it’s because he was frightened of the dentist when he was small, and no one was able to find a way to make him unafraid to open his mouth.

Sometimes when I wish I were writing on some other topic - knitting, say, or clutter - I think how those subjects can find their way via a twisty path back to Alex. Take knitting. Decades passed before I knit anything, and when I picked up needles again, it was because Alex had arrived and was in the hospital, and I was stressed and wanted to make him something.

Wild Foote sock yarn/Deb Roby

More years passed, and I picked up needles again about two years ago to make mittens for Alex and Ned because I’d read them The Mitten by Jan Brett, which reminded me of the great mittens my grandmother used to make for me. (I can’t find a picture of these awesome skunk mittens. Will have to take a picture of the ones I made.) This triggered a full-on knitting mania, which has stuck mainly because, I think, it’s so soothing. It’s my yoga, I tell people. It’s how I stay calm.

Inside, however, I’m not calm. I’m tense. I’m worried about Alex, I’m worried about money, I’m worried about his future and I’m worried about mine. The only time I’m not worried is when I’m knitting. So I guess that’s why I’m doing it a couple of hours a day.

I wouldn’t give Alex just anything that dissolved in water, despite how Jill chose to put it. But soon after we (mostly Jill) broke the glass ceiling of Alex drinking medicine from a little metal cup a few years ago, I began to wonder what supplements he might take.

The trend started with melatonin and continued with his Topamax. He takes also nothing that I don’t take, and not much of that. (The exception is folic acid and multivitamins, which I heard from Dr. Internet were bad for men older than 45.)

Image: Nassaulibrary.org

Alex’s schedule includes one tablespoon of liquid Vitamin Shoppe children’s multivitamin every morning. Then I give him stuff alphabetically, the only way I can keep it straight, two a day, starting with one teaspoon of children’s acidophilus and one teaspoon Benefiber, both dissolved in water. (Benefiber since he stopped drinking V8 juice months back).

The next day: one B12 capsule and one cinnamon capsule, both dissolved in separate metal cups of water. Day three: one folic acid tablet and one ginseng capsule, both in water. Day four: one selenium tablet and one potassium tablet, in water. Next day: schedule starts again.

Alex’s health regimen is much like mine: Not enough of anything to harm, and delivered because somebody said it helped. The recommendation for acidophilus from the head of a local autism support group; B12’s from an autism dad and AutismOne radio host, who said that in moderate amounts it improved speech; and selenium from Jill, who told me it was good for preventing cancer. I figure his diet is so crappy, the odds of him getting too much of any nutrient are pretty long.

I’d love to add fish oil and magnesium, (heard good things), but they don’t dissolve in water.

More on supplements and autism.

Author Paul Collins (Not Even Wrong) has a great piece in the recent Cookie magazine. Collins, whose son is autistic, advises prospective hosts (parents of the typically developing, most likely) on what to expect and now to prepare if someone’s bring an autistic kid to their house. Interesting perspective and smart piece.

I’m not going to say much about Alex’s toilet training because: 1) I wouldn’t want him talking about mine; and 2) Jill handled it. I’ll never be able to thank her enough for causing this bullet of special-needs parenting to miss me. I’ve heard some hard stories about this topic and the autistic, and I’d like to do anything I could to help parents with teaching this sometimes heartbreaking life skill.

Image: sxc.hu

Aim, however, is another matter. (I’m no marksman, either, but in recent years my aim’s been flawless because I’ve been so tired I take the opportunity to have a seat.) I’ve been coaching Alex on a simple premise: hit the target.

“Make it rain, doofus!” my big brother used to say to me (still does, and I’m 47). I object on a couple of levels to calling my own autistic son “doofus,” but I do think my brother’s lesson has some nuggets of wisdom in it. Among them: teach Alex that if he’s making a noise with the water, that’s good.

“In the water, Alex,” I’ll say, “make it hit the water. Not the side and not the wall.”

Generally, he tries very hard to hit the target (harder for sure than I once saw a men’s room full of drunken grown-ups do after a big NFL game). Alex tries hard, except when he thinks it’d be more fun to pull the front of his T-shirt up over his face and play RFK Stadium Men’s Room.

“ALEX!”

So as a family we segue smoothly into our next lesson to prepare Alex for life and to tell ourselves we have a normal kid: We make him help clean up. He doesn’t exactly fly into this unpredicted aspect of toilet training, and I feel a little like an abusive dad making him do it - but God, look at the puddle back by the wall! I finish it off anyway, using Jill’s incredible homemade cleaner.

The lesson here for me: He pulls his shirt up not because he’s autistic, but because he’s being a wiseass. That makes me feel mad and comforted at the same time.

Toilet-training help:

http://baby.lovetoknow.com/wiki/Potty_Training_Autistic_Children

http://www.teacch.com/toilet.html

http://www.starautism.louisville.edu/images/pdf/Toilet%20Training%20and%20Toileting%20Issues%20for%20Children%20with%20Autism.pdf

Jeff is talking about supplements, of which Alex gets several. Potassium, B12 vitamins, plain old ground cinnamon (he buys these in expensive capsules that he breaks open and dissolves), selenium. I really don’t know where he gets his information. Oh, that’s right, that big old database called the world wide intertubes, which is so known for the reliability of its content. (Confession: I take turmeric capsules because I read somewhere that it was a good anti-inflammatory that could offer protection against heart disease and other conditions.)

“If it dissolves in water and I can get it at the Vitamin Shoppe,” Jeff says, “I’ll give it to him!”

I know why he does it. Alex’s diet (Hebrew National franks and Utz Extra Dark Specials and Pepperidge Farm Goldfish) is so terrible we worry if he gets even a half of what he needs. While lots of kids with autism are on dairy-free diets, we are thrilled that Alex now drinks milk and eats yogurt (but only Dannon La Creme strawberry or vanilla). At least he’s getting calcium.

Then there’s the murky evidence that some of these things will actually help him neurologically. We’ve checked with Alex’s pediatrician, and at the doses he’s getting, they’re not doing any harm and might be doing some good.

But I think the real reason he does it is that a parent with a child who has problems wants to feel he is doing everything possible to help. Can’t argue with that.

Apparently I once said to Jeff there should be an autism hotline, kind of like a suicide hotline. I’m not sure what I had in mind, but I guess it would be a kind of clearinghouse for information as well as a source of support during tough moments.

Image: sxc.hu

This morning, I think we might have called the hotline to find out what to do when your son occasionally misses the target. And I don’t mean just a few drops or a little spray. I mean he pulled his t-shirt up to cover his face (because he does that now and then) and let fly. Soon I heard Jeff yelling and went into the bathroom to see what was going on, and Jeff fumed, “He’s flooded the floor!” I looked, and sure enough, it was a flood.

Alex learned to use the toilet fairly easily, and it seems well fixed in his mind that if you have to go, you should wait for a toilet. But he doesn’t seem to care that much (at least at home) about getting it all in the right place. Jeff says aiming is not the problem. “He knows how to aim - he just chooses not to,” he says. I don’t know. I still think maybe we should try putting Cheerios in the toilet and asking him to hit the target. It’s like he doesn’t care, and we’re not sure how to make him care about his aim.

What we did: screamed and yelled a lot, made Alex help clean it up (which he is pretty good about doing - when he knocks over the cat’s water, he always gets paper towels and carefully wipes up the spill), applied plenty of magic cleaner (see recipe below).

What I wish the autism hotline could have told us, if it existed: this is a common problem; there are techniques to try; it will get better; here’s a recipe for really dynamite cleaner that removes the urine odor (see below) and is far superior to ordinary glass cutters and cleansers like Fantastik.

Before anyone feels like jumping all over me for linking to a cleanser that’s formulated to remove pet odors from your life, know that we purchased it because our cat was peeing on things, and it really sucked even more than having your bathroom smell like a public restroom. This stuff really did the trick, but it was incredibly expensive, so I figured out how to make it so we wouldn’t have to spend $11 for 16 ounces or so.

Magic cleaner recipe: It’s equal parts alcohol and hydrogen peroxide. Dilute with a little water. Add fragrance if you want to. Apply liberally to wet spots. We use it on our sheets and bedding when the cursed cat decides she’d like a second cat box, and our bed will fill the bill nicely.