Autism Watch: 2007

Posts Tagged ‘medication

On Tuesday, BB had to go back to the neuro to discuss his migraines. It’s a drive to the neuro, about 40 minutes, and includes crossing several bodies of water and even more two-lane highways. It’s not a rough drive, but I do prefer to do it during daylight. By the time we’re there, BB is already impatient, and on the drive home? We’re required to make a pit-stop, either at a store for something cool, not a habit I want to encourage, or at a drive-thru for fries or nuggets. Since we’re very particular about what fast food we’ll allow him to eat, it’s not a slam-dunk, so I have to plan to drive a certain way in order to pass an ‘approved’ drive-thru. Nothing like turning a simple doctor visit into an event!

This visit, I told BB we’d stop by and get nuggets on the way home. He’d had a rough day at school, and I witnessed, when I picked him up, a teacher snapping at him, pretty loudly and over-the-top harshly about dropping a piece of paper on the ground. (Get a grip, woman, and remember, he’s someone else’s child. Discipline your way at home, but at school, there are nicer ways to reprimand.) He railed on and on about it all the way to the doctor, but the minute we got out of the car, his mood changed. Phew. He loves the doctor’s office, and is especially fascinated with the little door from the bathroom into the office. You know, the specimen door. I had to remind him, dude, look, urine tests sit there. Imagine what you’d be touching if you put your hand there or get your face too close to the door. It did not deter him enough, so I was really excited when he ran to the nurse counter to ask for a piece of note paper. Then he grabbed my check-writing pen out of my hand, as I’m paying the $30 co-pay, to write on this note paper. Then he drops it into the comments/suggestions box. Scary?

We get called in right away. He gets weighed, and I learned he’s gained 3 pounds in 3 weeks. Periactin anyone? That’s the nudge I needed to change medications, as it wasn’t doing enough for his headaches anyway. On into the room, where he regales the nurse with lovely stories from tv shows I wasn’t home when he watched (no, nothing that bad) and then tells the nurse “I’m serious, this is a serious story.” Doctor comes in, we do the exam, talk about migraine med changes, and BB starts with another story. And another. Thankfully, the doctor understands and was interested, quite possibly even entertained, but I’d lost all control. Short of taking him out of the office or physically restraining his mouth, he wasn’t stopping. Yep, ADHD and OCD displays their ugly heads quite evidently, and at least it’s in the doctor’s office, right?

The nurse empties the suggestion box. Finds the note. “Dr. XXX is epic!” We had to explain that epic means cool, but they seemed pleased. Phew. I’m really glad, as we have to go back in six weeks if the new medication isn’t working.

Epic. I guess if you have to go to the doctor a lot, it’s good to have an epic one.

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I had an IEP yesterday afternoon. Lately, these IEPs have been pretty standard — we know what’s going to be discussed, we laugh a little, we agree on further services, sign the attendance sheet, and leave with the IEP paperwork to review once more together, at home, before we sign. Pretty simple, especially given that our school is up-front and offers services without hassle. Dh couldn’t go with me, and I wasn’ t worried; I figured I’d be in/out in less than an hour and we’d go on as usual.

Just when you least expect it….wham, the punch to the stomach.

First, the teacher came in to meet me early. I like the teacher, she’s good for him, and I trust her, so when she laid out several issues he’d had yesterday, I believed her. Then she started talking about Tuesday…then Monday. Then another teacher came in and added to it. Then the special ed. director/teacher concurred as she’d seen it. They were very nice about it all, and their approach was fine. It was just that the information, the surprise of it, was a bit…overwhelming?

I know my son has social and behavioral issues. I love him to pieces, and we work daily to fix things and help him improve and learn how to be independent and function in the world, but when you hear there are more issues, or things are worse, it’s still difficult to hear. That’s when I got butterflies and started to do the smile and nod. It wasn’t a ‘how funny!’ smile, but a ‘yes, I’m listening, thanks for sharing’ kind of smile. The kind of smile that signifies I’m holding together just fine, and am rolling with the punches. Inside, I’m sighing and wondering what the heck just happened.

The questions came, and I didn’t have any good answers: had there been a recent medication change? (No, he’s on no meds.) Had there been a dietary change? (No, we eat primarily homemade healthy food, same as always.) Had we noticed any change? (Yes, we’d noticed a few weeks ago that he was more active, his attention span was shorter and he was having more mood swings and control issues.)

While I already knew he was hyperactive — ADHD often goes hand-in-hand with autism — and I knew he had social issues, to hear that he’s now acting out in order to fit in, that he’s trying harder to manipulate situations in an attempt to control his environment (not necessarily to be devious), and that he’s showing lack of focus, lots of fidgeting and difficulty getting and staying on task, well, it was a lot to hear.

New and increased services are in place, and we’re working with the school to be sure we’re consistent and employing the same tactics and strategies at home. Bigger picture, we’re revamping his diet, which is a real challenge as he already eats pretty darn healthy. We’re working on solving his intestinal issue, trying another round of anti-yeast protocol, and seeing what we can do to decrease his level of activity as well as eliminate his headaches…all without medication.

Not sure where to start, but away we goooooooooooo………..

I haven’t blogged recently — busy (like everyone else), migraines, dd having seizures, sick kids, and in general, just not sure what to say. I don’t want a blog full of only rants about how bad my neighborhood is, how mean people are, and how tired I am of being afraid to answer my doorbell. Until I had something non-rant like, I decided silence was golden.

But — you knew there was a but coming — I wanted to come out of hiding to add my opinions to the topic-at-large right now. You know the one, the one where we as a community in general are pretending we actually have a right to know, or a right to know better, than what another family should have done or has gone through. You know, that kind of judgment that we absolutely hate to have pronounced on us.

I love the friends I’ve made in the autism community. I’ve learned more from these fellow trenchmates than anywhere else, yet I still feel, and have mentioned before, that sometimes we’re the least tolerant of each other, yet we expect, or demand, that tolerance from anyone outside of the autism community. This seems like an extreme of that, and it’s pretty sad, for lack of fancier adjectives. Sad.

Without repeating everything others have said, my thoughts are this: the Travoltas are humans. They are parents who love their children, except they have money and celebrity. Why does that money or celebrity make them responsible for sharing their personal trials or tribulations? So they didn’t tell the world their child had autism. If that was me, you’d not blink an eye. But throw in money and celebrity, and I should share? Where’s my privacy? Where are  my rights? My child’s rights?

Leave the Travoltas alone. Their child died. He is gone. They are suffering the biggest loss a parent can suffer. Leave them be. They didn’t owe us any facts. No celebrity does — if they do, it’s a bonus and we should be thankful instead of expecting it. In fact, now, I’d expect less celebrities to come forward. Who wants the scrutiny, the judgment, the “you should do xxx and not do xxx” that the Travoltas are seeing now? How dare people hassle them for their choice of medication, or no medication? People, we weren’t there. We aren’t there. They owe us NOTHING. Back the flock off.

There, I said it. And on the other side, I do wonder why autism is seen as something, by Scientology, that cannot be recognized, but I’m not a Scientologist (thank God) nor will I ever be, so I can’t speak further to that. If they find it shameful or fictitious or unmentionable because it may require psychotropic drugs…well, I’ll just leave my thoughts to your imagination in that regard, though I will say, doesn’t God love us all?

On that note, I hope something else happens soon to distract from this situation. There are so many more urgent things to discuss, like my son’s new social skills program, YAY! I say we all talk about that, until something more exciting comes along. Sound good?

Okay, so he doesn’t really say that to me in those words exactly, but I know he’s thinking it.

I’ve explained Crap Week in a prior post, probably a couple of times (crap is pervasive and insidious) and thankfully, I think it’s improved. In all things but ds. We’re considering a medication increase — not something I would just randomly share with people, but his behavior, with aggression, temper tantrums, self-injuries, lashing out at others, refusing to listen, being outright defiant, it’s just over the top. He’s only on a ‘baby’ dose but he’s put on 8 pounds since he started the meds and I guess it’s time. Behavioral therapy helps, but I can’t have him marking himself like he’s been doing.

Every time I turn around, he’s telling me what to do, correcting what I do, and telling me what I’m doing wrong. And yelling. Yelling a lot. He wakes up in the morning and starts. It happens as he’s going to bed. Did I mention he yells?

Autism is a nasty monster. My son is a sweet boy. Mix the two — a sweet boy with some monster behaviors, and we’re working on our ‘what next?’ list. It’s a 24/7 battle for him to listen and do what he should. It makes for long days. I guess there’s a good thing in this: I am exhausted and sleep better. Always a silver lining, right? 😉

I’m still seeing so much in the press and on the net about Weiner. The articles that agree with his inaccurate and harmful information are frequently agreeing with the theory that parents just want to medicate their kids for their behavior, and all will be good. Thing is, if he knew anything about autism, or if anyone who agreed with him actually did their research, they’d know their is no magic pill for autism. Or is there? If there is, why have I been paying out-of-pocket for therapies? Why am I fighting for services? Why is my son on waiting lists for things that will help him? Heck, sign me up for the ‘cure the behavior’ pill and I’ll take a look.

Oh, that’s right…more misinformation and ridiculous theories or “knowledge” based on other misinformation…probably based on more misinformation.

There is no pill/medication for autism. Yes, there are some medications that may help — for example, when your child is pullling out his fingernails, hurting himself or others seriously, or scraping his face every five minutes, to the point of blood, we can try Risperdal or Clonidine…and we can hope it makes a difference. If they are older and/or suicidal, and therapies aren’t working, we can hope an available medication may work. But no pill out there…NO pill…actually ‘fixes’ autism or its behaviors enough for any parent to chase it down. ADHD may be helped by a medication, but ADHD is NOT autism. Some autistic kids are ADHD, but that’s just a by-product. If you know so much, get your diagnoses correct.

Non-verbal kids’ parents probably wish there was a pill to help their child speak. I’d venture to guess many parents of autistic children wish there was something as easy as a pill, but the fact remains, a pill is a band-aid, and a pill won’t fix things permanently.

Mind boggling that we’re ‘after medication.’ Buy a clue, people. If Weiner had said “99% of <insert race/sexual orientation/gender/descriptive word> were all <insert derogatory word>,” the general public would be all over it. But why not, autistic children have been kicked out of school/class, thrown off of airplanes, legally restricted from church, and told to leave restaurants. Easy targets I suppose. And illegal if it was anyone else. Hell in a handbasket if it continues…and people wonder why parents of autistic children speak up so much. Wouldn’t you, if your rights and your child’s rights were disappearing by the second??


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