Autism Watch: 2007

Posts Tagged ‘regression

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….

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When I am out-of-state, and I tell people I’m from California, I usually hear something akin to “Ahh, sunny California, must be nice!”

Well, let me tell you, this non-California-Native is not loving California on a good day but right now, if someone asked me where I was from, I’d say “windy hell.”

To back up a bit, I was raised back east. I grew up with snow in the winter, beautiful leaves in the fall, rain in the spring, and tolerable temps in the summer that made us appreciate the sun. But here? One day looks like the next, most of the year. For example, it’ll be Thanksgiving in a couple of weeks; we were wearing shorts and the temps were pushing 90. Hottest “fall” on record. Normally, we’re in the 70s now, lower temps at night, and enjoying some long sleeves.

Contrary to popular belief, not all of California is sunny 24/7. And not all Californians want it! I thoroughly enjoy cooler temps, sweaters, gloves, wearing my heavy coats, boots and turning on the heat or using the fireplace. I moved to my location years ago, and one reason we like it here is because it is more of the ‘burbs, with mountain views (we’re in the foothills) and we experience more seasonal weather than we’ll find in many areas of SoCal…except when it’s blazing hot, 115 or so, days on end in August, and electricity bills are $500 a month or above. I’m not here because I love this state, but because this is where our support system is. Our friends. Our doctors. We’re considering an out-of-state move, and one huge reason? NO wind like what we have here. Seasons. Changing leaves. The kids can play outside without worry of getting knocked over by 75 mph gusts weeks on end, without worry of embers blowing around or the air quality causing asthma. They can enjoy the snow or the rain and Christmas feels like Christmas.

So, back to windy hell. And fires. Yet again, another batch of days on end of Santa Ana winds. All my plants were brought inside. Our patio furniture — heavy wrought iron — is affixed to the concrete. Our natural gas barbecue unplugged and moved to a safe location. (And it easily weighs 100 pounds.) Trees blown over everywhere you look. Trucks on their side on the nearby freeways. Crappy air quality, and you can’t enjoy your backyard, the school playground or a walk from the car in the lot to the door of the store because you literally are blown sideways, and even sturdy people have difficulty standing in a real gust. Day after day after day of this gets old — and we’re lucky in that there’s no fire in our area.

That said, you can see the Corona/Yorba Linda fires from our front windows. The air is a nasty grey-orange, and it smells bad. Yet, our homes are unthreatened so we’re fortunate. (Flashback to the 2003 fires when we could see them out our back windows, on our own foothills, and we had to evacuate.) But it still sucks. Fires not only kill people, and hundreds of homes are gone with their families displaced, but the crap in the air, and the stuff they drop out of the tankers isn’t stuff you want to be breathing.

Knowing how fortunate we are that our home isn’t threatened by a current fire, I still am so tired of this. When you can drive and point out various fires, even seeing flames, it’s just wrong. My heart goes out to those whose homes are damaged, those who are evacuated, and those wondering. The TV coverage is riveting, walls of fire and clouds, it sucks you in and it’s hard to turn away yet hard to watch at the same time.

What does this have to do with autism? This is an autism blog, afterall. Well, on one hand, it gives me an opportunity to clarify to those who’ve wondered that the fires aren’t near enough to us to be a threat. (I do have some amazing photos from the upstairs windows, I just wish I knew my D-SLR Nikon D-80 enough to do it justice.) On the other hand, fires usually cause regression in autistic children close enough to be affected. Those who have to evacuate are taken away from their routines, their special items, their comfort zone. Those who aren’t evacuated but still can smell the smoke often regress for no obvious reason. We’ve speculated that the electricity in the air during strong winds does it, as my little guy often has more mood issues when fires are close or when winds are bad. Winds have been bad all week, yet he’s holding steady and I hope he stays that way.

If you’re of the praying variety, add the fire victims and evacuees to your prayers. I’m sure there will be donation drives coming up, if you’re able. Many of these people weren’t given much time at all to get out of their homes, and I cannot imagine what it must be like to sit in an evacuation center waiting on news of your home. Heartbreaking. And for those with children with special needs, even moreso.

…what do you do?

To say the last couple of weeks have been eventful is an understatement. I just wish it was good events. Don’t get me wrong — there’s been a lot of good things that have happened, a lot of fun, but a lot is overshadowed by the difficulties we’ve faced with ds.

Bottom line, the little guy’s meltdowns are worsening. Supplements are being refused, and being casein-free hasn’t made a stitch of difference. We’ll keep on with it, but it sure isn’t encouraging that after almost a month without milk/dairy and we’re not seeing the change so many told us we’d see. We went into this knowing that we may not be one of the 46% or so that see dramatic improvement, but we did still hope. Being GF didn’t do it either. Supplements were doing it, but he’s refusing them anymore, so of course, the refusal is causing some regression. Makes sense, but I really hoped that the improvements would make taking the supplements that much easier. No such luck.

I’m still entirely behind the biomedical theories. I believe they work, just not for everyone…just like not everyone that gets a vaccine gets autism. Some people are just pre-disposed genetically to either get better, or to get autism. And maybe at some point they will again work for my son, but for that to happen, he has to take the supplements. Maybe then he wouldn’t swing at me, and maybe he wouldn’t get mad at just about everything.

Such a sweet, smart, and loving little boy. So adorable, good-looking, beautiful eyes, long hair, and funny demeanor…when he’s not blowing up because he doesn’t want to get dressed, stop playing Wii, put away a toy…

Meanwhile, therapies that may help are too costly to afford, unavailable in your area, not covered by insurance, or don’t work. Research is being done, but that will mainly help future generations of kids. What about our children today?

Don’t mind me…tiring, not so good day…a sock in the face this morning put me in a mood. Ds comes home from school in an hour, I’m hoping it’s been a better day for him. Autism program tonight, good timing. It’s almost hard to write about it, to sound negative, to share a not so cheery moment, but a day in the life of a parent of an autistic child is, well, not always so cheery. Maybe if more of us were honest and shared, the world would realize exactly how important finding a cure and funding treatment really is. And that if you’re a parent of a newly diagnosed child, you’re not alone.

My seven-year-old son is a really bad teeth grinder. He’s always ground his teeth. It’s a noisy sound, a nails-on-the-chalkboard sound that makes me attempt to stick my fingers inside his wired-tight jaws and pop them apart, but it never works and sometimes I get bitten as his teeth snap back together like a gator’s might. Snap. At his dental check-up/cleaning last month, we learned that the dentist was afraid he was wearing down a crown to the point it would require replacement. We hoped it wouldn’t, but learned on Monday that it does.

Next week, he goes in for another root canal, as there’s a definite crack back there and a serious risk of infection. They’ll put a new, non-amalgam-related crown in his mouth. He knows it’s going to happen, and so far, he’s not freaking out about it. But I worry, and not just because of what he might incur during the appointment but because of what happens afterwards: regression.

Almost two years ago, he had three root canals and a couple of fillings. He was a reflux baby, and the enamel was worn off those teeth, so they became problematic early. He also was, as many autistic children are, really averse to brushing his teeth, and it took a lot of effort that wasn’t always successful. The first appointment…well, I will remember it vividly forever. It was the first time one of my children has ever had a tough time in the dentist’s chair, and it was messy. The dentist had to do her work, and help calm him and hold him still, while the assistant also helped hold him still while holding her tools, and I laid in the chair, leaning on him, trying to hold his hands out of the way. We had chosen nitrous, and he hated the hissing sound. By the end of the appointment, he had some rash on his face and neck from all the movement and he was so badly stressed out and frantic, I refused to take him to the next of the three appointments he needed to finish all the work. Dh, out-of-state on a business trip at the time, got a lovely phonecall from me, where I proceeded to tell him that all his traveling for work would have to be on hold long enough for him to do the next appointment. He agreed. Anyway, it took days and days until ds was back to himself, well over a week. He hated the idea of another appointment, and so did I. Yet, dh got him there, and to the next one (rescheduled for first of the day, when the office wasn’t even officially open so no one else would be waiting, listening or needing any help) and the process was completed without the mess of the first one. Was he more used to it? Was dad’s presence better than mine? Who knows, but we won’t push it — dh is doing this appointment next week, too.

We’re lucky — we have a wonderful dentist who has a lot of experience with kids on the spectrum. She has one of her own. When our regular dentist said we needed to find a pediatrics dentist, she was one of the numbers we were given, and I did grill the receptionist heavily, knowing not just any peds. dentist would work. It paid off. Her office is built around children, with flat-panel TVs on the ceiling above the chairs, children get to choose what to watch, and the walls are covered in relaxing but eye-catching murals. After the appointment, they get coins for use in the toy machines, and the goodie bag must cost the dentist office a pretty penny each month with the spinbrushes and other items each includes. So, if your child needs a dentist and you’re iffy about yours, look around. Better ones are out there. Don’t settle for one that makes you uncomfortable or doesn’t listen to your concerns. Ours knows our issue with mercury, and doesn’t hassle us. We’re given a lot of options, and above all, she’s understanding with our son. When he can’t take a routine cleaning because the cleaning gel bugs him, she works with him to find a better solution. (New special gel that’s not gritty and comes in a better flavor.) When a machine is new to him, she lets him play with it so he knows exactly what it is before she puts it in his mouth, and better yet, she does that without us having to suggest it. She knows that approaching him slowly is best, and getting in his face takes advanced warning. When he can’t take the smell, she does what she can to dissipate it. (Last cleaning, a new hygienist was in the room and didn’t seem to be aware of his ‘issues,’ until he bit her and I explained. He was crying, the dentist came in, calmly took over and it was done in minutes. Not many dentists will handle things this way.)

Does that mean I’m okay with just signing him up for more work? No, but I also know that an infection can wreak havoc on his system and make things worse, and an infected tooth will bring a whole lotta pain and still need to be fixed. He won’t wear a mouth-guard, but maybe when he’s older he’ll be more willing. Right now, we’re just thrilled that he’s actually sleeping in his own bed…for almost 14 days now!

Know your dentist. Ask questions. Research and if your current dentist doesn’t like it, find a new one.  Dental work is too important to put off yet you don’t want a child who is so afraid to ever return. (And all this coming from me, a major wimp at the dentist’s office, particularly after a root-canal tool broke IN my mouth and had to be surgically removed. But I’m still up-to-date on my appointments, so if I can do it after what I call The Fiasco, so can you!) 


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