Teen Autism

I’ve unfortunately been having some dental work done this week – on myself. And as much as I would rather not be doing it, I’m glad that I’m the one, and not Nigel. As I sat there in the chair this morning, getting my mouth shot up with novocaine and then having my teeth drilled, I wondered how he would handle it.

I brushed Nigel’s teeth for him until he was six or seven years old. I just didn’t want to risk having him brush his own teeth poorly and getting cavities, which would mean having to take him to the dentist.  He used to get upset by lawn mowers and leaf blowers that he could hear from three blocks away, so how on earth could he stand a dentist’s drill in his mouth? He shrieked whenever I would try to trim his hair with scissors (because clippers were out of the question), so naturally I dreaded having to take him to the dentist. I figured that if I brushed his teeth for him, he wouldn’t get cavities.

So, when he was seven, I had him start brushing his own teeth, because it was time. After about two years of him doing it himself, I noticed that his sound sensitivities seemed to be waning, and I thought that it was probably high time that he saw a dentist and had his teeth checked. I prepared him with social stories, played dentist with him, and promised a reward after the appointment. He seemed ready. I stayed with him the entire time, of course, and notified the dental office ahead of time that he had autism. They were very accommodating, letting Nigel touch the instruments before they placed them in his mouth. I felt like I was holding my breath the entire time, hoping that nothing would upset him. Drills were going in other rooms, and he reacted to them and seemed a little nervous, but I assured him that they wouldn’t be using those on him that day. I was so glad that he was able to filter out the sounds and remain seated in the chair.

And, in fact, he’s never had to have his teeth drilled. Not that day, not ever. Nigel has never had a single cavity, thank God. He’s never had to be restrained to receive shots in his mouth, and he’s never had to try to sit calmly while someone drilled his teeth. I suspect that many autistic kids have had to be sedated to have dental work done on them, and I wonder if Nigel will need that at some point. But we’ll keep our digits crossed – he’s been to the dentist every year for the past five years, and no cavities. I find that fact astounding considering that he barely has the toothbrush in his mouth for thirty seconds and won’t do it at all unless I remind him.

I go in next week for my last bit of work, and then I’m done – with any luck, for good. Maybe I should just start brushing my teeth for thirty seconds – it seems to work for some people in this house. And anyway, as Nigel says, “Who cares about hygiene?”

That nasty stomach-bug thing that’s been going around has made its way to our house. Right before bed last night, Nigel ran to the bathroom to throw up. I thought at first that it was because (I’d discovered) he drank way too much soda that afternoon and evening while I was working in my office. But typically if his stomach’s upset for that reason, it’s a one-time elimination deal. And, unfortunately, Nigel’s trips to the bathroom occurred several more times throughout the night.

Usually, he makes it on time, but at one point in the wee hours, I heard him (the sound at which all parents groan) and went to check on him. It wasn’t pretty. I cleaned him up, got him back in bed and reminded him about using the old pot that I’d put by his side for the next episode, and then cleaned up the carpeted hallway, the bathroom door, sink, mirror, and floor. I didn’t even want to know what time it was.

Nigel has always been a trooper when it comes to being sick. Even as a young child it didn’t seem to faze him. He never whined about being sick – he just took it. He’s still the same way. And he loves saltine crackers, which I only buy when the kids are sick. I think it’s like a consolation prize in his mind – he requested the saltine crackers moments after he vomited his entire dinner. Not yet, I told him. Your stomach needs to rest. I’ll get you some tomorrow. And he accepted that. His stomach probably made him sense that it was best to wait.

Fortunately, though, our family doesn’t get sick much, especially in recent years. Two and a half years ago, we started eating organic food. Not everything – in fact, probably about half of the food we consume is organic – the stuff that we eat every day. But it really makes a difference in our health. In two and a half years, both boys have only been sick twice, and it was mild – over in two days. I’ve only been sick once, also mildly.

But still, even in my children’s teen years, I’m cleaning up puke. At some ungodly hour, no less. Afterward, I manage to get a little sleep. In the morning I get up and get Aidan off to school, check on Nigel, empty and clean out his used pot, wash my hands, and come in the office to work. Suddenly I hear retching sounds in the hallway right outside my office door. It’s one of the cats, about to yak on the carpet. I leap up from my desk and grab the poor thing, herding him into the bathroom and holding him over the linoleum. Then I clean that up, laughing at the fact that I have cleaned more puke in the last nine hours than I have in the past four years. I wash my hands for about the thirtieth time, put on my shoes and coat, and go out to buy non-organic saltine crackers. And maybe a new mop.

I took one of those online tests today to evaluate my stress level. I mean, I don’t need an online test to tell me that I’m feeling a lot of stress, but I just wanted to see how I would score. It was high. It actually said, “You have high stress. Take action now to reduce and manage your stress. Stabilize the amount of changes in your life and avoid unnecessary stress. Evaluate how you communicate, manage your commitments, and prioritize your time. Make stress-reducing lifestyle choices a priority: seek therapy or exercise.”

I scored high even without the following questions:

• Do you have a special needs child?
• Is your children’s other parent involved less than 50% of the time? Less than 30%? Less than 20%?

And that’s probably good that the test didn’t ask those questions, otherwise my results might have said, “You have immeasurably high stress. We’re amazed you haven’t had a stroke yet. Check yourself in at your local mental health facility before you completely lose it. Don’t bother seeking therapy or exercising. Those things can’t help you now.”

I feel like I’m teetering on a cliff and, at the same time, being pulled in several different directions. Homeschool, work, work projects, household stuff, autism stuff, SPD stuff, appointments, errands, meetings, trying to write. There are not enough hours in the day.

I try to schedule downtime. This past weekend, I visited a friend at her house one night, and the other night I watched a movie at home with my boys. And those things are important, so I do them. But they don’t eliminate any of the other dozens of things I have to do. Giving myself downtime doesn’t seem to solve the issue of not having enough time to do all that I have to do.

So I go back to what the little online test advised: Evaluate how you communicate, manage your commitments, and prioritize your time. I think this is the crux of the matter. Autistic kids aren’t the only ones who benefit from schedules – their parents do, too. I’ll make myself a schedule so I’ll be better organized. I’ll just put that on my to-do list.

Eventually I’ll get to it.

I have often said that I have a gray hair on my head for each time the school called me about some behavioral issue, each IEP meeting, and each public debacle we have survived. But I have more gray hairs that were caused by my son getting lost than by everything else combined.

Nigel is a wanderer. Up until he was about seven I had to have a lock high up on the front door or he would just run out and take off down the street. I wondered how I would handle it when he got older and could reach the lock. Implant one of those tracking devices? He was a runner, and it worried me. But something happened when he started to talk. He seemed to have less of an inclination to want to escape, and saying, “Stay in the house” was something he could understand. I felt like I could breathe a little bit more.

But the wandering nature is inherent. Whenever we are away from home, his exploratory urge kicks in, and he takes off if I’m not constantly watching him. Sometimes, in recent years, he tells me where he is going, but the odds are that he will not still be there when I come to collect him. Something else will have caught his attention, and he will have moved on. And I will spend the next half an hour running around looking for him, wringing my hands, imagining someone taking him, considering notifying the police, and basically driving myself into near-hysteria.  And it just happened yesterday. Again.

We had gone to a large park in a nearby city where an international fair was being held with lots of booths, exhibits, musicians, dancers, and food and craft purveyors. Nigel informed me that he wanted to go to the playground. I said okay, later wishing I had added, “and wait there for me.” After about ten minutes, we made our way toward the playground, and as we neared it, I glanced around for Nigel. I saw him scaling a mini climbing wall and started walking in that direction, briefly looking at some traditional Mexican dancers off to the side.  A moment later I reached the climbing wall, and there was no sign of Nigel. I went around the back of it. Not there. I looked at every playground feature. No Nigel.  Not again! I wanted to yell. How does he continue to do this to me?! He was just here!

I looked at the surrounding area, up in trees, around bushes (in case he had followed a bird or squirrel), all around. No sign of him. I informed the rest of our party (Aidan and my boyfriend) that Nigel had taken off, and they joined in the search. We walked through all the booths, went beyond the playground where there was an inflatable jumping/ball-pit thing attracting lots of kids, and even checked the belly dancing show going on. No Nigel. Then I retraced our steps back to the band we watched when we first arrived. Then I went back to the playground. I ran into my boyfriend and he suggested notifying the police. I said I wanted to make one more sweep first. I went beyond the playground, past the inflatable jumping/ball pit thing, past the belly dancing, and there, there, around the other side of all of that, was a fire engine. I saw Nigel’s head in the side window of the fire engine. He was seated with a bunch of little kids less than half his age, smiling and excited to be sitting in a fire engine. Oh, my son.

So many times have I felt this emotion without a name. It is a combination of intense relief, but also frustration, a little anger, and exasperation. The relief, of course, overpowers everything else. But how many times must we go through this? How many times must Aidan help look for his older brother? How many times must our plans be disrupted? How many times must I fear that he’s been taken? It is still so hard to bear, that sense of dread. The hysterical fear that he has been taken.

And yet, somehow I bear it. I must and I do. I say to myself when I find him, He’s okay, and that’s all that matters. And I admonish him for not staying where he said he’d be, and he apologizes, and we go on our not-as-merry way. And I think some more about implanting a tracking device in him. Or getting walkie-talkies. That is, if his could be strapped on to him somehow. Otherwise, I’d have a lost son and a lost walkie-talkie. Not to mention more gray hair.

Last night when I went to Nigel’s room to say goodnight to him, I noticed that he had dried blood smeared on his cheeks. “Did you have a bloody nose?” I asked. “Yes,” he said with nonchalance. “I took care of it.”

That’s what I was afraid of.

During warmer weather, Nigel gets bloody noses as often as once or twice a week. This has not been a lifelong occurrence, fortunately; it’s only been for the last few years. He doesn’t seem bothered by them, but he insists on handling them himself. Meaning, he doesn’t tell me until after the fact. Or he doesn’t tell me at all, and I happen to discover it.

I went to the bathroom and it looked like someone had been murdered in there. Drops of blood splattered up to the ceiling, blood was smeared all over the mirror, sink, and floor, blood-soaked tissues filled the trashcan and spilled onto the floor, and wadded up towels encrusted with blood were wedged into the space between the towel bar and the wall. How on earth is this level of carnage caused by a simple bloody nose?

I know I need to teach him to clean it up, but it is late, I am sick with the flu, and I decide to deal with it tomorrow. I go to bed wondering why he does this with his blood. I’ve read articles written by parents whose autistic children handle their feces this way, and so I’m glad that it’s blood, and I’m glad it’s usually confined to the bathroom (the living room couch was stained once or twice). But why does he do it?

I think blood fascinates him. During one of his bloody noses last year, Nigel stuck a small test tube up his nostril in an effort to collect his blood (and he was successful, apart from the mess). He said he wanted to test his DNA. For what, I have no clue. He was going through a Hulk movie-watching phase, watching the DVD every day for a week, so the test tube incident might have been motivated by that. Maybe he figures if he has such a profuse amount of blood on hand, he might as well do something with it.

I need to buy stock in Spray ‘n Wash, considering the amount of Stain Sticks that I go through, what with the bloody towels, clothes, and couch. Such is my life. With that sense of resignation, I took some Nyquil and crawled into bed. I slept well, random dreams of blood splatters notwithstanding. I got up late this morning and, noting the empty house, remembered that the boys’ dad was taking them river rafting today. I still felt weak with flu as I trudged passed the bathroom and peeked in. It was clean.

Most likely, their father had cleaned it, even though he doesn’t live here. But he knew I was sick, so that was thoughtful of him. I still need to teach Nigel how to clean up his own bloody-nose carnage, but there will be plenty of other opportunities for that, I’m sure. For now, I better get out the Stain Stick. The towels got it pretty bad this time.

I mentioned in a recent post how eating organic food has made a big difference in our family’s health, and I wanted to go into more detail about that. In the past two years, I have had only one mild illness, over in two days, and the boys have each had only two mild illnesses. I used to have spring allergies so bad that I would need to be on Claritin-D for two months straight. Not since I started eating organic food.  My nose still gets a little itchy and I sneeze a bit, but at least I can breathe at night.  I have not experienced any major congestion in two years.

The great thing about organic food is that you don’t have to buy everything organic to notice the benefits. All you have to do to get started is to look at what you consume every day and choose one of those items and buy it organic. For me, I almost always have cold cereal and milk for breakfast. So do my sons. We started drinking organic milk and noticed the difference right away. For one thing, it tastes so much better than non-organic, somehow fresher and more flavorful. I switched my cereal to an organic brand, and Nigel’s also. (Aidan is addicted to his Crispix. He’s an even pickier eater than Nigel.)

Next I looked at what else we eat a lot of in our house: fruit. Both boys eat apples every day, so I started buying organic apples. Yes, they are more expensive, but our health is worth it. And neither of the boys got sick at all until almost a year later, when the next school year started. A nasty flu was going around, but they were only down for two days. And I didn’t get sick at all.

I started buying more organic fruit, yogurt, eggs, and tried some organic meat. Words can’t accurately describe how much better it all tastes. I’m not saying that I’ll never go back to non-organic. On the contrary – I would say that at this point the percentage of my diet that is organic is probably only half, or less than half. I’m not the type of guest at a potluck who passes up a great-looking dish because it’s non-organic. And on the rare occasions I eat out, I don’t ask if anything’s organic. Eating organic isn’t like being a vegetarian or vegan – it’s not all or nothing, unless you want it to be. Another great thing about organic food is that it cuts out all the chemicals – the artificial colors, flavors, sweeteners, and preservatives present in most non-organic food that can be so detrimental to the functioning of an autistic person, as I mentioned in my previous post.

Try switching to organic even for just one or two items that you eat on a regular basis. It’s definitely worth the effort.  

It can be extremely difficult to regulate your autistic child’s diet. I know that song and dance all too well. But it is something we parents must attempt. Diet – what we put into our bodies – affects our health even more than most of us realize, and this is certainly true for autistic individuals, as evidenced by the success of the GF/CF diet. But since we did not have a successful experience with that, I have modified Nigel’s diet over the years to one that seems to work the best for him. Following are seven suggestions for diet modification:

1) Try the GF/CF diet. It might benefit your child. Be sure to maintain consistency with it for several weeks to accurately gauge its effectiveness.

2) Limit sweeteners, especially artificial ones. Nigel is okay with the occasional bit of natural sugar that crosses his path, even a little corn syrup now and then, but he absolutely cannot have any artificial sweeteners. He becomes completely agitated and unmanageable, reverts to echolalia, and general chaos ensues. That means mainstream sodas (Coke, Pepsi, etc.) are out, but once in a while I allow him to have some even though I regret it later. He is particularly sensitive to Aspartame, which I’ve read many bad things about on the internet.

3) Limit other chemicals: artificial colors, flavors, and preservatives. I’ve read that the Red No.-whatever colors are the worst, but the rest can’t be far behind. We frequent the natural foods section of various grocery stores and buy all of our cereals and snacks there. No Trix or rainbow-colored goldfish crackers!

4) Try organic food. Yes, there’s been a lot of debate about if it’s worth the extra cost or if the money’s all in the organic labeling. That may be true in some cases, but know this: In the past two years since I started buying organic food, and not everything – just about one-third of the food we consume is organic – I have only been sick once and it was extremely mild. Both of my sons have only been sick twice. Twice, in two whole years! And those were also mild illnesses. For kids, that’s pretty amazing. I am sold on organic foods no matter what I read or what anyone says. They are so much better for your health. They automatically exclude artificial colors, flavors, sweeteners, and preservatives. And pesticides! And they taste far better, too.  I think I’ll write a whole post about organic food.

5) Push fruit. Fruit aids the digestive system and is full of vitamins. Of course, consuming vegetables is just as important, but if your child balks at most vegetables (like mine), you may have better luck with fruit since it is sweeter.

6) Encourage water consumption. This will be very difficult if your child acts like water is poison. My younger son used to fall into that category. I was able to get him to drink more water by bargaining with him with what he wanted: If you drink half a glass of water, then you can have a glass of lemonade.

7) Limit meat consumption. Meat is more difficult to digest, so I cook with smaller amounts and on fewer days of the week. You don’t have to cut something out completely to see the benefits of scaling back.

This seems like a no-brainer. When someone is diagnosed with cancer, insurance (minus deductibles, etc.) covers radiation treatment. When someone is injured and needs physical therapy, insurance covers it. When someone is diagnosed with autism, why is treatment not universally eligible for coverage? According to a recent article featured in the Medford Mail Tribune, thirteen states have currently enacted an insurance mandate for coverage of autism treatment. Thirteen. Out of fifty. How lousy is that? 

We shouldn’t have to fight for this. We shouldn’t have to put on our advocate hats and write to our state representatives and lobby for something that should already be covered. We’re not talking about cosmetic surgery. We’re talking about treatments and therapy that will improve our children’s health and their ability to function.  How the proven benefits of autism treatments come into question by insurance companies is beyond my comprehension.

But even though we all know this issue to be a no-brainer, we will write to our representatives, we will fight for this. Because that’s how things get done, that’s how our children’s needs get met. That’s what we do with the school district and how we raise awareness within our community. We need universal insurance coverage for autism treatments and therapies. Since this is accomplished on an individual state basis, contact your representatives by going to http://www.senate.gov/ and http://www.house.gov/. Let them know you support insurance coverage for autism treatment and therapy and urge them to do the same. 

I plan on telling my representatives about what a difference these treatments have made in my son’s life, and that every parent of an autistic child deserves the opportunity to improve their child’s health, whether they are able to pay for it or not. After all, that’s what insurance is for.

As I contemplate making old-fashioned macaroni and cheese for dinner tonight, it reminds me that I have been meaning to write a post about the whole GF/CF (gluten-free/casein-free) topic. Over the years, and especially lately with the hey-day surrounding Jennifer McCarthy’s book, my family and friends have forwarded various articles about the GF/CF diet to me, asked if I’ve read the book, or asked me if I might like to try the diet with Nigel. Here’s the short answer: Been there, done that.

Back in 2000, when Nigel was five and a half, I was on one of my every-three-month trips to Barnes & Noble in search of new autism books. Facing Autism by Lynn M. Hamilton had just come out, and that’s when I first heard of the GF/CF diet. I thought, This is it! This has to work! It made sense. And I was so motivated after reading about the positive results: the increase in language, the decrease of problem behavior, the ability to focus and improve cognitive skills. I so wanted this to work, believed that it would. I immediately went to our local natural foods store and purchased GF/CF bread, cereal, cheese, soy milk, yogurt – everything Nigel would eat. And he ate it. I could tell he didn’t really like it and wasn’t too enthusiastic about it. But I had him stick to it because I knew consistency was key to having the diet work. I told his teachers and therapists so that they wouldn’t give him regular milk and bread or crackers at school. I was so optimistic. Thought I had all the bases covered, that my years of research would finally pay off.

And so I watched my son, hoping to see some improvement after the first week or two. And then going into the third week I began to realize that, not only was he not improving, not talking more, he was actually regressing. I thought, Okay, maybe it will take a little longer. We’ll stick it out. And then going into the fourth week I began to notice that he was looking sickly, he had dark circles under his eyes, was lethargic and had very little appetite. By the fifth week he was even worse, and I had to admit that it was not helping at all. So I scrapped the GF/CF diet, let him start eating the foods he had eaten previously, and within a week he was back to his normal, healthy, neuro-diverse self.

I’m really glad that I tried the diet. If I hadn’t, I would have always wondered, every day. And I’m truly happy for Jenny McCarthy and all the many parents who have experienced such wonderful success with the GF/CF diet. I wish I could be in that group. I would be a huge advocate of GF/CF, shouting it to the world. And I’m glad that Jenny McCarthy wrote her book, so that more awareness could be raised about the diet and its effectiveness. But the fact is that it doesn’t work for everyone, like every other type of autism intervention therapy out there. In a way, though, I am an advocate for GF/CF, because I highly recommend to every parent of an autistic child: Try it. It might work for your child. And what would be more wonderful than that?

Just when you thought it was safe to go back in the water . . .

I’m not against vaccines. But today at Nigel’s 13-year physical, the nurse informed me that he should have three more vaccinations: tetanus (with diphtheria and pertussis), hepatitis A, and meningitis. And they offered to give all three at once, as a convenience to me. I blanched at the thought.

Deep breath. As I have mentioned before, I don’t think thimerosol-laden vaccines are the sole cause of autism. I do, however, believe that they are (were – if we trust the labeling of thimerosol-free vaccines) a contributing factor to the presence of autism. A notable contributing factor, in some cases.

Nigel’s last “booster” vaccinations were seven years ago. In 2001, I don’t think I had heard of thimerosol. I think at that point, thimerosol had not been isolated as the culprit. There were groups of so-called fanatical parents who supposedly believed that the vaccines themselves caused autism. And I didn’t think that the vaccines themselves were to blame. So I agreed to the three boosters (did I have a choice, school district?) and unwittingly injected my son with more mercury. 

And now that the thimerosol-laced vaccines are no longer being produced, I should feel fine about continuing to inoculate my son, right? On paper, I do feel okay. But something nags at me. Something makes me feel like I should avoid the vaccines. It’s just a little feeling. I wish I didn’t feel it, because I think at this point it’s irrational. It’s this “here we go again” feeling, a deja vu feeling, an I-know-better-now feeling. And I will shelve it, because I believe it when they tell me that thimerosol is no longer being used in children’s vaccines. Maybe I just want to believe it. But I sure as hell hope it’s the truth. It’s the least we deserve.