Category Archives: Health & Safety

Lost and Found

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.

Blood and Noses

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.

The Organic Difference

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.  

7 Dietary Changes to Try

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.

Insurance Coverage

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.

Our GF/CF Experience

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?

More Vaccines

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 a possible 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.

Vaccinations are never a pleasant experience but are essential when dealing with certain diseases, especially if traveling abroad. For UK readers, there are a range of vaccination services for fighting diseases at your local private clinic in London.

Medication Check-in

Yesterday I forgot to give Nigel his Zoloft. All day long I was wondering why he was being so difficult: irritable, non-compliant with any little thing, lashing out, complaining, and then, sometime after dinner, it hit me. I had forgotten to give him his medication that morning.

It was good to note that the Zoloft really does make a difference for him. I had already forgotten (or probably blocked the memories of) how he had been the months prior to medicating him. His anxiety level was so high that he was constantly irritated and often lashed out. I remember one afternoon going into his room and noticing that his desk chair (the kind with the adjustable, pedestal-supported seat on rollers, with a curved metal bar covered in ribbed plastic connecting the seat and the chair back) had been broken. He had ripped off the chair back, wrenching it off of the bolts that connected it to the curved bar. I tried to fix it, but the damage was beyond repair. I ended up removing the curved bar so that the chair is now just a rolling seat with no back.

I asked Nigel what had happened to the chair. He said in a low voice, “It was because of my anger. I feel different from everyone. I have a defective brain because of the a-word.”

He has referred to autism as “the a-word” for a few years now, ever since he asked “What’s wrong with me?” and I told him about autism. That day with the vandalized chair in front of us, I assured him, as I have on so many occasions, that his brain is not defective, it’s just wired differently. I reminded him that he has a very good brain that taught him to read at age three and a half. He seemed to feel a little better.

But since going on Zoloft almost two months ago, he has not destroyed anything because of self-esteem issues. He is more relaxed, more comfortable in his skin. He sleeps better. He no longer eats his hair. He doesn’t talk about his brain being defective. He is happier, I think. It pained me to think of him breaking his belongings because he feels angry about being different, that his self-esteem should suffer because of autism. If Zoloft can alleviate any of that, then I’m sticking with it. Nigel never balks at taking it. It makes me wonder if he notices the difference in how he feels. I think he does. He just isn’t able to put it into words.

Vaccines

Often over the years I’ve had relatives and friends ask me what my stand is on the vaccine/thimerosol issue. I’ve devised my own theory.

I believe that thimerosol is partly responsible for some cases of autism. What I emphatically believe is that in the last thirty years, large amounts of chemical toxins in our environment (including our food, air, and water) are contributing (not causing, but contributing) to the increase of autism cases, along with increased awareness for diagnosing the milder cases. Thimerosol in vaccines is included on my list of chemical toxins. But I certainly don’t believe that all cases of autism were caused by thimerosol.

When I was six months pregnant with Nigel, I experienced pre-term labor and was hospitalized while I received terbutaline intravenously. I have often wondered if the presence of this chemical affected Nigel’s development in utero. I believe he was genetically predisposed to autism, and the introduction of harsh chemicals through medication I received as well as the aggressive inoculation program thrust upon him after birth caused him to develop autism. It was the combination, not just one or the other.

Hence the variance of the spectrum. I think this theory also helps to explain why some severely autistic children can, with therapy, progress to mid-functioning or even high-funtioning levels, while others do not. It also explains why some autistic individuals respond so well to GF/CF diets, while others do not. Autism manifests itself differently in each individual because there are so many different causes and contributing factors.

I hope I live to see the day when we understand more of the complexities of autism, and maybe have some concrete answers. But for now I’ll have to be satisfied with my own interpretations, which will more than likely continue to evolve. What are yours?

Medication

I struggled with this one for a while, not just for Nigel but also for myself.

In late 1997, after crying one afternoon because I could not stop rearranging the chairs around the kitchen table, I realized that the anxiety wasn’t going away on its own. I had several other symptoms as well: peeling skin off the bottoms of my feet until they bled, systematically pulling out my hair, and chronic insomnia. I finally went to a doctor and was diagnosed with obsessive-compulsive disorder. The ‘when it rains it pours’ adage is unmercifully true: my diagnosis came one month before Nigel’s autism diagnosis and my husband’s announcement that he wanted to be separated.

For six months prior to obtaining medication for myself, I had struggled with believing that it was necessary, that it wasn’t a sign of weakness. The doctor had to remind me that if something was wrong with any other part of my body, I wouldn’t hesitate to obtain the medication I needed. If I had a heart disease, I might need antiplatelet drugs. If I were diabetic, I would need insulin. I agreed to a low dosage of Zoloft, and I experienced relief from my symptoms within days of taking it. I took it for a year and a half.

Within the past year, I had noticed that Nigel exhibited signs of anxiety, possibly OCD. He pulled out his hair so much he would create bald spots. He would rub his lips so hard that  he had rough, bleeding patches around his mouth. He had chronic insomnia. I had thought that his anxiety was environmental, due to the constant stress of the middle school. When I pulled him out of the school, his lips/mouth area improved, but he still had insomnia. And the worst thing was that not only was he still pulling out his hair, he had started eating it. I knew then that, even though he was only thirteen, he needed medication. Also, I have read that autistic teens are highly susceptible to depression, and with that running in our family as well, I figured getting him on Zoloft now might cut the depression off at the pass. There are some in my family who think I jumped the proverbial gun, that he’s too young to be on medication, that I should wait and see. But pulling out your hair and eyelashes and eating them indicates a definite need for medication, and I do not regret my decision.

I am happy to report that Nigel is sleeping much better now and has a full head of hair. Life goes on. And I am far too busy to be rearranging the chairs around the kitchen table, thank God.