Autism Watch: 2007

Archive for the ‘Biomedical’ Category

Lately I shared with you how much I enjoyed the new book, The Autism Revolution, by Dr. Martha Herbert. This book is truly a whole-body approach on helping your child, in layman’s terms, with resources and realistic recommendations. If I had my way, every doctor, therapist or teacher would read this and use it to help their patients and parents. It is *that* good.

Courtesy of Harvard Health Publications and Dr. Martha Herbert, I have two copies of it to give away!

To win the book giveaway, you can do one (or more!) of the following three things — each thing counts as one entry, max of 3 per person.

1) Respond to this entry with a brief answer to the following question: what area are you working on with your child? (Such as: anger issues, verbal skills, potty-training, eating problems, stomach pain, behavioral, etc…)

2) Follow me on Twitter (@autismwatch2007) and come back and respond here to let me know your Twitter name and that you’re following me.

3) Follow my blog and post to let me know that you did!

Thanks for playing! 😉  (And this book is so worth the time it takes to enter!)

I’ll close out this giveaway on  Sunday, May 20 at 9pm EST and randomly choose two winners. I’ll then email you for your mailing info, so keep an eye on your mail. (I’ll also announce the winners here!)

Yesterday was BB’s six month dental exam and cleaning. I’m not sure who dreads them more — him or me? Hmmm, me. Yes, definitely me. I have to drive him down there, almost 1.5 hours in one direction, then all the way home in awful tourist and end of the work day traffic.

If you’ve been reading my blog for a while, you know dentist appointments and BB haven’t always gotten along. So what changed? Finding a new dentist. It may be work, it may take a long time, you may have to pay a little out-of-pocket by going out-of-network on your insurance plan, or you may have to drive a long time, but it’s worth it.

BB used to be afraid of the dentist. Hated it. Now? “When are we leaving, Mom?”

However, it’s still not always good. For some reason, he gets anxious about it and he’s kind of a boogar by the time we get there. You know, the kind of boogar where the other parents in the waiting room look up from their magazines and try to surreptitiously check out what the mouthy kid looks like or if the mom looks abashed. (If you looked, yes, I was abashed. Very much so.) The mouthy kid looked cute, comfy with his bandanna around his neck (should he need to become incognito, you know) and bored, playing with the stress ball in his hand.

It continues in the dentist’s chair. I answer questions about his dental history and habits while he’s being worked on, and he starts to squirm. More and more, in irritation at my responses. Finally, when he gets a clear chance to talk, “Mom, you don’t know what you’re talking about. You’re not in my mouth. Let me tell her.”

Sigh.

My sweet boy disappeared halfway through the drive to the dentist and only started to re-appear about two hours ago. It only got worse from there, though he did cooperate for the rest of the exam, the cleaning (minus the fluoride, thank you very much) and the x-rays. By the time we were 30 minutes from home, he wanted a new family, he didn’t like me and I was NOT his mom anymore.

Who knew?

It was a long night, made worse by the fact that I’d postponed an appointment to the podiatrist for my plantar fasciitis and my foot was killing me. The husband made dinner, and I sat with ice on my foot. Exhausted. Totally drained from his behavior and the rush-rush-rush of the entire day.

Today, he didn’t get better until I finally sat him down and told him he could not yell at me anymore. I sat there, with him unhappy at my presence, explaining why I wasn’t going to allow him to yell at me, or anyone else, anymore. And as for the constant complaining? Three per day. Period. No more. You complain a fourth time and the computer gets taken away. Same consequence if I have to remind you more than once not to yell at me.

I realize it’s an issue of control. He wants his room to look a certain way so when I move the water bottles or turn the nightlight off, I’m changing the way he wants it. When I tell him it’s school at 10am today instead of 10:30am, he doesn’t have control and it’s a change. I get it, really, but that doesn’t make it okay. It’s not an excuse to yell and be mean. So we talked about it, and beginning next week, after we’ve had a couple of uninterrupted days to reinforce the new rules, we’re starting a behavior program that I hope will address his anger and control issues.

I have hope. I just know it won’t be easy. He’s smart and he recognizes that he’s being mean…it’s just after the fact. Tonight, he stuck a note on the door saying he was sorry. Cute, but not enough. It did, however, open the door for him acknowledging that he needs to find some better ways to cope. He actually googled it, he said. I believe it, google is a big tool for him, and he uses it as a springboard for further research and study. If he’s interested, get out of the way, he will do it thoroughly.

Tomorrow we have a homeschool event…same place that “The Issue” happened a few weeks ago. I told him we’d ignore her and it wouldn’t change anything. He won’t let me sit next to him in the class, so maybe he’ll sit in back with me. Not sure. I want him to learn from it, but not be afraid or let her intimidate him. He doesn’t need to stop asking questions, he just needs to be mindful of how he does it. If he does it wrong, I will address it, as always. We’ll see how it goes. If nothing else, I’m super-proud of him that he’s not letting her possible attendance influence him going again. Way to go, BB.

 

I live in a small town. A four -stoplight kind of town. (Wow, I never saw that coming given that I’m from the busy ‘burbs of California.) Our library means well, the staff is nice and they have some great offerings, but as far as books, it doesn’t house the new stuff. (Unless it’s a book on the south or a fictional southern-based drama, but I digress…) To get something new, I have to utilize their intra-library loan system and sometimes get on a wait list.

Last week, I was uber-surprised that a) the county library system had the new book I was looking for, and b) that there was no wait list.

I didn’t expect for a new book on autism to make it onto their shelves, in an area where the word often gets you the “hmmm, I think you just need to spank him” response. I should not have been surprised at all though that there was no wait list. That was the California part of my brain, where I am used to there being a lot of people who research autism, acknowledge autism, and read the latest and greatest books on it. Sigh, I’m digressing again.

Here’s the book I’m talking about: The Autism Revolution   Check it out.

One week later, I’m two-thirds done and I have learned SO much, but more importantly, I’m stuck on “Someone gets it!!! Finally!”

Dr. Martha Herbert gets it. She not only gets it, but she puts it out there in an awesome book so the rest of us can get it, too. I want to hug her. (If I ever am lucky enough to go to a conference, I want to at least tell you the major thanks I am feeling. I did meet her about five-six years ago, but I highly doubt she’d remember me.)

I want to give this book to every doctor and teacher I know. (The cynical part of me thinks most teachers wouldn’t read it. After the years of hassles and hardships at schools, I don’t know if BB will ever go back to a public school. In an ideal situation, he’ll be attending a magnet school for computer skills, a perfect world for both of us.)  This book breaks down, in no uncertain terms, how autism is a whole-body issue. The brain and body work together. If one is affected, the other will be affected. Someone gets it! Finally!!

It also highlights what so many of us parents have seen but not so many doctors acknowledge: autism, in a high percentage of kids, includes a list of medical issues that are frequently treated as ‘just a coincidence,’ unrelated to autism, yet so many of our kids experience. When BB was young, he was a medical puzzle. Chronic diarrhea. Years later, encopresis and constipation. Skin rashes. Frequent ear infections. Swollen lymph nodes. Reflux. Food intolerances. The list goes on. The first 15 pages alone of this book sucked me in, and I had my husband sitting down to read it. (And this is a guy who doesn’t want to sit and read books — he’ll be the first to tell you, read this book.)

I’m not done yet, but I’ve already made a trek to the health food sites and ordered B-6, magnesium and more probiotics. DHA (fish oil) is next, but I’m a big believer of one new thing at a time, so if there’s any difference — positive or negative — you know what to attribute it to. Someone gets it! Finally!!

Get a hold of this book and take notes. It’s well-worth your time to read a book that will prove invaluable.

 

It’s day 4, and we almost didn’t make it to school this morning. After yesterday’s headache, he was ‘off’ all night. Edgy, easily irritated and seemed unable to focus on one thing for too long. At bed time, we had a major meltdown on our hands. Apparently his service dog hasn’t slept well the last two nights and it’s keeping BB up at night. I knew about this, but I didn’t know it was to the point of near hysteria that he’d have a third night like this and keep BB up again. After 15 minutes of him yelling and crying, hitting himself and us having to stop him and try to talk him down, he decided to listen to some of our suggestions for keeping his dog happy at night, thereby allowing him to sleep.

It took a while, but with some furniture rearranging, we moved the carpet over to one side and angled BB’s bed so that the service doing, who we’ll call “C,” was only able to roam one side of the room, and with the carpet there, BB wouldn’t be able to hear his nails on the hardwood floor. C’s bed was over there, and BB could still be near him without the noise. We then watched Dragon Ball Z Kai together (not the world’s best show, but he loves it) and he went to sleep, 30 minutes later than normal, but it was barely dark out. He insists on being in bed no later than 8:30, some nights as early as 8:20, so I was worried this would upset his sleeping pattern but he seemed fine.

Fast forward to 6:15am, when I wake him for school, and I hear him moaning as I walk down the hall. He said he’d woken up about 30 minutes prior with a ‘super bad’ headache. I get him a pain reliever immediately, massage his head, offer him water, and do all I can to get him to be willing to go to school. That’s where I felt like a really bad mom, because I don’t want to leave my bed when I have a migraine, yet the schools out here have the world’s most ridiculous policy for attendance. It doesn’t conform with the state’s policy, so we’ve pushed it a bit as the state allows for 10 days of unexcused absences, and four that you have a doctor’s note for, which is fair — I really do believe kids need to get to school and it’s important to make rules — but what’s not fair is that our school starts threatening truancy at day four and makes you attend an attendance meeting. You quote disability laws and they state that we have to have a document on file. Uhm, I think the IEP and medical diagnosis of autism and migraines should suffice, yes? But no, we have to have a note each year on file and even then, they want to make sure we’re ‘being truthful’ and not taking advantage of that. So you end up taking your child to a doctor for a mild cold that’s given them a temp of 100, not enough for a doctor to do anything more than write a note that you were there and enough for you to pay the bill and expose your child and yourself to even worse illnesses.

I digress.

I finally got him up and moving this morning and got him out the door..a few minutes late and with him being oh so slow that it was really hard not pushing him to move faster. After all, tardies count against the 10! We have to weigh the balance between being a mom not making your sick child go somewhere that he’ll only be in pain, and the school hassling you. I partially think it’s the area — we’re ex-homeschoolers and we believe that while schools are important, they’re run by humans and parents have the utmost choice, and people locally tend to believe what school staff says without question. I also think that I’m just burned out on years of expectations that are unfair. He’s sick, he shouldn’t be at school where it’s only going to make him worse. If school is making him this anxious, it’s not up to me to just continuing to increase his medication, but to them to find out what they can do to decrease the anxiety.

So I sit and wait for them to call and give me an update. I’ve already spoken with the nurse first thing, but it’s up to the teacher to let him go to the office if his head hurts, and if she doesn’t let him..well, I’ll be there in the office first thing, but that won’t fix the day for him. For him, when he has a problem with something once, he’s put off from ever trying it again. Let’s just say that the day that It’s a Small World at Disneyland broke and we were ‘trapped’ for 15 minutes, five years ago, assured that we’ll never ride it again. I liked that ride.

For those of you dealing with anxiety, what do you do? BB’s headaches were far less frequent over the summer, in the environment without bright lights, too much noise and stress. Now that he’s back at school, we can see him getting stressed and anxious, and we feel the headaches are a side-effect. We want to try something to help — biomedical is the first goal, followed by medication but only if absolutely necessary. How do you handle autism and anxiety? Where do you see it cause the most problems?

First, I don’t really think that, but I was told again yesterday that if I didn’t try xxx on BB (for his autism) then I was a sheeple going along with the general public, just because my doctor said so. Well, I’ll be! Baaaaa-aaaaa. 😉

After all these years in the autism community, I still get shocked at this mentality, the “I research, I talk about it, therefore  I am more educated than you” mentality. We’ve probably all run into that here and there. (Or am I just lucky?)

So many things are wrong with this picture. I won’t list them, because I have Valentine’s day cookies in the oven and quite honestly, don’t want to devote to much (more) time to nonsense, but the holier-than-thou attitude doesn’t fly well with me. I don’t go around tooting my own horn, telling you how many hours every day I research autism, how much I advocate for autism, or how many people I’ve helped; what’s the point of that? So just because I don’t tell you about it doesn’t mean that I don’t do it. So when you tell me that the new headache medicine I’m trying for BB is wrong simply because it’s not biomedical and instead is a prescription from the pharmaceutical industry given to me by a ‘drug-pushing’ doctor? You’re wrong.

Somehow this society has confused caring for another and looking out for their best interest with judgmental nosey-ness. There’s a way to share your feelings without putting down those who don’t agree or choose another path. You aren’t ‘better’ than someone, nor is your child necessarily any better off, so get off your high horse.

Just one of those days where I wonder why (not) the autism community can’t do something with the power of numbers: we can’t even get along with ourselves without inflicting the same judgment and nastiness the rest of the world inflicts on us simply because they don’t (choose to) understand autism.

Until that is fixed, we’re not going to make the change we want.

And with that, I’m off to get another tray of non-gluten free cookies out of the oven. (That didn’t work on my child, which makes me a pariah in some circles, imagine that. Autism isn’t bad enough, but because a remedy for only approximately 60% of the community doesn’t work for us, we’re fair game for questioning on that, as in ‘are you sure you did it right?’ It’s not rocket science, folks. But I will stop now.)

Happy Valentine’s day to all!

Is there such a thing? Because I feel like I’m getting it. Well, maybe not, because the more I learn, the more I realize I don’t know. But I do know I don’t have a DAN within reach and it’s up to me…and the autism community that thankfully shares information on a regular basis. But if I could get a PhD based on time, count me in.

Little guy’s having his headaches, some intestinal issues, hyperactivity and less attention/focusing in school. He also still won’t sleep without melatonin. Time for a change.

After a lot more research, we’ve decided to go with Theanine Serene. Living where we do, we had to order it so it won’t be here for a few days, but I’m anxious to try it.

Then what’s next? It may be time for another round of anti-yeast protocol. We want to see if the theanine (which also includes magnesium) makes enough of a difference. Too many supplements and additives and BB catches on to what we’re doing and becomes resistant. Not that I blame him.

Autism research can be a full-time job, and I work on keeping the balance between finding what I can do to help BB, and just being BB’s mom. Sometimes he needs that more than anything else.


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