Autism Watch: 2007

Posts Tagged ‘biomedical

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.

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………..

No clever title for this one, just a one word question from a worried mom.

These last few weeks, BB’s been ‘off.’ No one thing seems to be the cause. No changes in diet, no new meds, supplements, treatments. No new activities. Something’s just off.

Today, I’ll wonder every time the phone rings. Will it be the school? If it yes, will he be sick, or will he be having a meltdown? Will I have to pick him up?

I am thankful for a few things despite what appears to be one of those downs on the rollercoaster of autism. I am thankful for a good school nurse who works with our son, and with us. She comes up with good ideas to help him stay the whole day of school, and to make that day easier for him. I’m thankful ds can tell us what’s going on in his day, though speech doesn’t equal communication so I really wonder what we’re missing as he interprets things differently and is so literal, he may miss the big picture. I am thankful for a good school admin to help us make some changes for the upcoming year. It’s clear now he needs more social skills help, and we can’t risk starting a new school year without it. I am also thankful we live so close to the school and that my job/employer/supervisor allows me the flexibility I need to take their phonecalls and run over there as needed. And, I am thankful for Clairol, a haircolor I can do at home on my own schedule at a price that won’t make me compare it to how many doctor appointment co-pays or expensive child’s slip-ons I could buy with that money.  (Gotta be thankful for the little things, and be willing to laugh at where your mind can go sometimes, too.)

Every day, getting BB out the door to school is a battle. It’s not that he’s entirely uncooperative. It’s not that he’s refusing to walk away from the TV or computer like he used to. It’s that he’s so stressed about school it appears to be causing anxiety that’s manifesting in tummy aches and other physical issues. It’s hard to explain, but you autism parents will get it: he will get so upset about something, to him, he feels like a tummy ache but it may be tension. Or, it may outright be a tummy ache because he’s so upset about something that it really is making him sick.

When I left him at school yesterday morning, I again left him at the picnic table. Alone. I hate it. I’m so tired of leaving my sweet, funny little guy alone in a sea of children. They walk past him and he tries to play but they run off. Or he calls to one of them and the child(ren) ignore him. He’ll get a couple “hi” or “hello”-s when hanging up his backpack, but if my son responds (obviously, an issue we need to deal with) they still aren’t the ones wanting to play with him. I’m glad for those kids but I want him to have someone that says “Yay, xx is here! Let’s play!” Don’t we all want that when we go to work or anywhere on a regular basis? I tried a different tack and told him that those kids that didn’t want to play with him were missing out. “You’re a fun kid!” “Mom, only to adults am I fun.” What do you say to that?? He’s right, adults love him, but adults aren’t in second grade.

As I sat with him at the table, he told me he was tired of getting picked on. My hair stood on end. Picked on? Was it finally happening? I’d worried about this for a long time, someone teasing him for something he can’t control. Kids tease, and I expect this, and he’ll have to learn, but to tease him for a physical thing — a tic, a stim — just shouldn’t happen in second grade, yet it is. And by a surprising child, one who earlier in the year seemed to be an ally who understood him. So much for that. Apparently she sees him make a face, mimics it, and they laugh. He went on to tell me how he’s tired of other kids not including him, and this one girl talking about him. (“But, she made a mistake she doesn’t know about. She tells xx and he tells me what she says!”) It’s time for a change. I can no longer leave him unhappy, wondering, hoping that his day gets better and that he doesn’t stress himself into a tummy ache.

On Monday, the phone rang from school. He’d hit his head on the table but we’d told him to make the whole day at school without a nurse visit, and he of course took it so literally, he thought he’d be in trouble. Poor little guy, of course you go if you’ve got a boo-boo. Tuesday, the phone rang. Twice to the office for a tummy ache. Once he talked about it, he went back to class. I already have a mail from the school about excessive absences, but what do you do? How do I fix this? If he’s sick, he needs to come home. If something there is making him sick, they need to resolve it. So now we work together to find out why, and hope the rest of the year goes quickly.

And on other fronts — his appetite has increased so he’s eating bigger, fuller meals. He’s easily upset by things, and you just never know where a conversation will go. Will he blow up? Yell at me? Not want to talk to me for half an hour (or more) because I asked him to stop picking at the dry skin from his lip licking? At therapy last night, he had to be pried off me, and then wouldn’t come out from under the table. He refused to cooperate and had what was probably his worst night there in 15 months. Yet, when we got home, after the bath that I practically had to hogtie him to take (he goes into this non-listening mode where he completely ignores us and it’s really convincing), he pulled out “Diary of a Wimpy Kid: Rodrick Rules” and read out loud for a while. And read good! What an ability to sound out words he doesn’t know, which aren’t many, and to hear him laugh at a book….ahhh, not much better than hearing your child spontaneously laugh.

So things aren’t all bad, but what’s causing the regression? The stress from school? Just going through a phase? We see the neuro next week to have the MRI and bloodwork discussed. I want to talk about the anxiety then, too, see if he has any ideas. We’ll work with the school, and continue to talk to ds. It’s so difficult when things seem to be in one of ‘those’ phases.

If you haven’t seen it already, try to find a transcript or clip from Larry King Live on Friday night, with Jenny McCarthy, Jim Carrey, and Dr. Jerry Kartzinel. Oh, and Dr. Bernardine  Healy, the voice of reason who understands that we parents need to be heard, that biomedical treatments shouldn’t be ignored, and that vaccines may be one of several toxins in our world that are contributing to this huge increase in the number of children with autism spectrum disorder. Leave your opinions or biases behind as you watch, and listen to the numbers. It makes sense.

Gotta run. He just woke up and I need to go give him a cuddle snuggle…something about his eye hurting….

It’s been one of those weeks — actually, a ten-day span of one crappy incident on top of another, interspersed with fun things and relaxing moments…followed by another crappy incident. Today, it was going outside to pick up ds from school to find that something (someone?) had 100% shattered my driver’s door window, rendering it undriveable. Here I sit, a birthday dinner to attend in two hours, waiting on an auto glass repairman. Ka-ching. Ka-ching. But what’s another $210, right? (It’s got after-market tinting, so of course it costs more. Sigh.)

Anyway, I had one of those autism conversations last week, one where you wonder later if you should have just shut your mouth rather than actually share your opinion and help someone else see the other side. The kind where you wonder why you should have to be the one to cave dare we lest ‘offend’ someone, when in reality, I was really hoping to share something that no one may have shared before.

I’ll back up.

We attended a Halloween party on Saturday. Family-style, with kids running all over. As usual, it was a blast. Lots of activities for the kids, and accommodations for my little guy so he didn’t have any (as many?) meltdowns. While sitting with some other parents, a woman married to teacher was telling me about vaccinations. I (mistakenly? stupidly?) shared that my friend had just experienced a vaccine reaction in her child, quite a severe one. Pretty banal comment actually, as we’d been talking about kids needing help in school. Well, the ‘teacher in the family’ light went on, before I even had a chance to realize it. Apparently this woman’s husband doesn’t believe in the GFCF diet, doesn’t believe in anything biomedical or anything, basically, outside of school- or doctor-provided therapies. Okay, fine, sad, because I have seen it work firsthand, but you don’t have a child on the spectrum, so it’s understandable she’d have no experience because she’s not living it daily. But, here’s where the enlightenment comes in. Turns out, her husband was outright angry at parents who do believe the diet because he doesn’t believe in it, and instead believes that the improvements in the child must be from the work the teacher does; in return, when a parent claims that their child is improving, it somehow takes away from the work the teacher is doing.

Thankfully, the games started so we were interrupted. I had no intention of getting into a heated discussion, so it was a welcome interruption. For me, it was enlightening — I had no idea before why teachers didn’t want to cooperate with the diet. I’d always thought it was the extra work involved. It never crossed my mind it was something as petty as resentment. Aren’t personal feelings supposed to be removed from the equation when it comes to teaching children? I mean, I know they’re not, but wow, the vehemence, the irritation towards the diet or anything biomed that could help the child. But, I don’t feel she was, and hence, he was enlightened. Instead, I think there was just irritation that yet another person felt that the teacher wasn’t the primary reason for improvement in an autistic child. And that’s just sad. It speaks volumes about why the different sections of the autism community can’t get it together and just agree to work together, letting each do their part and cooperating with only the benefit of the child in mind.

There are some great teachers out there, but until they all agree that we parents still know our child best, that they only see the child a small portion of his life and therefore need to listen to us, and that we are entitled to making the decisions about what a child needs and receives, there’s still so much work to do. There’s no place for resentment, irritation or hurt feelings when it comes to doing whatever it takes to improve our children. Even if something only helps one child, who is ANYONE to say it’s not a proven success? Isn’t that one child a success? Does a success have to be 100% of the time to count? 50% of the time? Who determines success? Would teachers be cool with us telling them how to raise their children? They’re there to educate our children, not raise them — vast difference. As long as school is mandatory, we’re a team and any good teacher will acknowledge that.

The more I think about this whole conversation, the more it worries me. We parents are supposed to be openminded and entrust our children to virtual strangers all day, but some teachers don’t trust us in return. It really does work both ways. Unless teachers are willing to truly listen and try to learn, we’re going to be butting heads for years to come. Don’t take it personally if parents don’t thank you for the GFCF diet improving their son’s bowel habits or removing rashes or stopping headaches; those aren’t your realm. A chid that feels better will behave better and may speak. It makes sense. You’re one important part of a big picture — if we can make it a co-op, we’ll all benefit.

If a parent talks with you about something, you don’t have to agree, but at least remember that you’re not dealing with the child 24/7. The parents are. They’re paying the bills. All of them. The diet, the biomed, it does more than help things that you’ll ever even see or hear about. Those hours with our child, it’s just a portion of the day.

I think we’re really, really lucky. We have an excellent teacher for our son right now, and we did the last 1.5 years. She works with us, and the more stories I hear about things friends deal with, or conversations I have like the one explained above, I thank God. Seriously. So to ds’s teacher, thank you. You are a blessing.

When I started this blog, I had intentions of covering all aspects of autism, but focusing mainly on sharing news as well as day-to-day things that occur. Lately though, with all the news happening, I’ve gotten caught up. I’ve posted on so much of the hype that I’ve gotten away from my original plan. So, I do promise to get back on task to a more rounded blog about autism…but I do want to talk about the new “Just let him be” campaign that’s supposedly growing in numbers, those who want us to just ‘accept’ our child the way he is, and stop all the treatments. (For more info, see ABCNews.com for this: Autistic and Proud)

What??

That was my first thought — stop all treatments? Stop looking for a cure and accept them for who they are?

I thought about this further, and couldn’t get past the thought that anyone who thinks we haven’t accepted who are children are really doesn’t know what they’re talking about. I think everyone other than those dealing with new diagnoses, those who haven’t had a chance to grasp it all yet, accepts their children. I accept my child’s autism. I accept his differences. I accept his tics, his stims, his rituals, his needs…but that doesn’t mean I’ve given up on thoughts of happiness and functioning as he wants to within society, and I don’t see him being able to do that if he’s on the floor in a tantrum, biting himself, wetting/messing himself, or not understanding a change in routine. For non-verbal kids, I don’t think their parents should have to just ‘leave him be’ when it comes to not ever hearing their child speak. I don’t know, my child’s verbal, but from parents I’ve met, they’d give their right and left arms to hear their child say “I love you” or “I’m happy, Mom.” Who can blame them?

So moving on past ‘acceptance,’ what about finding a cure. Why wouldn’t we want to stop another generation from watching their child bang their head on the floor, line up their toys for hours, or flap their hands so much they can’t pay attention to anything else. Sure, I love and accept my child for his uniqueness, but does that mean that I should be okay with autism being out there, and I shouldn’t want other children to not have to go through this? It’s okay for some people, but why make that decision for others?

Heck yes I want a cure. I don’t believe we’re going to find it in genetics though — maybe partially, because these kids are genetically predisposed to autism, but we need to focus on why these children develop normally, even if they have a few oddities, then suddenly don’t. There’s something in our environment causing this, and the research needs to go there.

I accept my son for who he is. The differences that autism has ’caused’ him in make him unique. I often envy his outlook on life, and I don’t necessarily want to change it. I really wish I didn’t care what others think and would just dance in the aisle if I felt moved. I wish I could be comfy in flame-patterned lounge pants and a purple Pokemon t-shirt if I wanted to…in public. My son can. My son is a very unique individual, and I’m so very proud of him.  I also know that until the world accepts his differences, he could be in for a hard time as he gets in higher grades in school. But that’s not his problem, that’s society’s. Autism’s often teased, harassed, bullied and ignored, where other disabilities are accommodated. Still though, if I can help him feel more happy, more safe, more comfortable, then I’m going to do that. If that means biomedical treatment to help heal a funky rash, to stop a stim that leaves him with clown mouth, to help him sit down long enough to eat, to eat more than 7 items, to help him be, ahem, regular and not have a hurting tummy, then I’ll do that. In my opinion, to allow your child to suffer just so we can be prideful is wrong.

My child will be old enough to make his own decisions eventually. Until then, I’m going to do any and everything I can to make him healthy and happy. If autism takes away from that, I’ll be first in line to fix it as he deserves nothing less than healthiness and happiness. I can do that while still being proud of the unique little guy that he is.

Autism & Medical Breakthroughs 2008 (TACA — Talk About Curing Autism Now)

I wish I could go — this one looks great, with Dr. Jerry Kartzinel and Dr. Rossignol both presenting. Affordable and not too far away from me, in Long Beach, California. Any event with either of these speakers is well worth the money and the time.

Did you just hear that high-pitched scream? The kind that makes you wish you were only hearing nails on a chalkboard? The kind that makes dogs howl and cower under a bed? The kind that you think “wow, my kid’s tantrums don’t look so bad now.” That’s what just occurred here. We haven’t seen them this bad in a few weeks, and I didn’t miss them. Nope, not a bit. In fact, for a second, I was thinking “how did I ever deal with this all day every day?” Then he sat up with monstrous strength unknown to small children, and I remembered that this is why we decided to put him on medication. I couldn’t deal with it all day, every day, and neither could he.

I don’t know what is wrong that caused this. Well, I do know what caused his anger, but for it to get to that level? Who knows. On a ‘normal’ day anymore, finding his Gameboy case on a shelf other than where he put it would cause some annoyance and yelling, but not the “Curse you, Bubba, curse you!” that it caused today. This week, he’s out of school, had some Easter candy (though none since Tuesday) and there’s been a few dietary infractions…but this seems extreme for that. Then again, who knows. Maybe the dyes are still in his system from the Easter candy he ate on Saturday/Sunday. Yep, who am I kidding, I helped bring this on.

Right now, he’s calm…after he exploded, the extreme sadness and sobbing kicked in. The heartwrenching, saddening sobs that make you wish for anything that could stop your little one from feeling that sad. That out of control. That much hate. (And hate it was, based on what he was yelling.) There’s gotta be more that can be done, but we’ve tried behavioral therapy…a lot of it. At one point, we were told that without medication, he may never truly get a grip on it. Now that scares me, though I have hope.

During Autism Awareness month, I truly hope not just the non-verbal, handflapping children are in the spotlight. Not that they shouldn’t be, don’t get me wrong, but people need to see ALL types of autism. They need to see the aggression of little kids with strength of someone twice their size, hear the venom coming out of their mouths, and hear a list of what little is available to help. We can’t let the public think that there’s two kinds of autism: non-verbal, and Asperger’s. They need to realize that there’s a spectrum, and this population of kids like mine exist, in big numbers. They aren’t spoiled. They aren’t products of bad parenting. They aren’t lacking self-control..well, they are, but not of their own or anyone’s choosing.

So now he sits eating a milk-free brownie. My older ds is astounded by his brother’s complete and utter lack of an attention span anymore, and I am in a way, too. He’s never had a long one, but this week, he’s bounced from watching Wonder Pets, spreading Pokemon all over my bedroom, spreading stuffed animals (his friends) all over his room, starting to make a book, playing a round of Guitar Hero, and back to Wonder Pets…all in about 8.4 minutes. How is he not exhausted, but everyone in his wake is?

Life with autism is unpredictable. As the saying goes, “If you’ve seen one person with autism, you’ve seen one person with autism.” They’re all so different. Yet, ironically, they’re each predictable in their ‘issues,’ if you will. I know my son will get up and want his pancakes heated on a plate, stacked, then cut in two directions, then slathered in syrup. He wants his ‘coffee’ (chocolate almond milk) in his white cup with the blue lid, and placed at his chair. From there, on a non-school day, all bets are off, but I know it’ll be a whirlwind of activities, many odd, in a short period of time. I know if we talk quietly so as not to interrupt him, he’ll accuse us of talking about him. I know that if a show he’s Tivo’d is deleted, he’ll scream and yell that he’s going to beat up the stupidhead that did it. I know that when his sister gets a phonecall and he doesn’t, he’ll flip out that he has no friends, and we’ll have to limit his talking about no friends to three minutes, or we could fall asleep to that same discussion ten hours later and he’d barely notice, only to have to start the conversation over, verbatim, if our snoring disrupts. And I know that when he falls asleep at night, finally, and only after his clonidine helps, I’ll cuddle him and hug him and tell him he’s the sweetest boy in the world.


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 35 other followers

Twitter Updates