Autism Watch: 2007

Archive for December 2007

Phew. Done. Started at 8am, and by 8:40, dh was on the phone, updating me as he headed home. And this is big, as dh hates to talk on the phone as he’s driving. (Why aren’t there more people like that? My drive-time home could be cut in half if I didn’t have to sit behind 10-20 people a day who don’t want their call interrupted by measly green lights and turn signals.) Ds was unhappy, he’d been crying, but he was talking. Another phew. He had a roll of gauze in his mouth, preventing him from speaking too clearly and racking up drool points, but he was talking. We’d chosen to use nitrous, despite the concerns with problems with it, because the problems with general anesthesia really aren’t necessarily better. And no medication isn’t an option. He arrived home shortly afterwards, red-faced and pale at the same time, unhappy yet happy that it was over with. Bag of prizes/rewards from the dentist balled up in his hand, along with the purple nitrous nose-piece.

Apparently he had cried some during the visit, and dh spent the time trying to calm him. The dentist was wonderful as always, very attentive to ds’s needs and fears, yet hurrying through the work to get it done as fast as safely possible. Thank God for that. Not all dentists have the patience she does, and I’d recommend her in a heartbeat. (And her experience with a son on the spectrum really helps, too.) He had to deal with the nose-piece, the brace to hold his mouth open, and two strangers in his face. Bravery. He can be so easily overstimulated, yet despite it all, he gets through it.

A few hours later, hours where we’d cuddled, he’d played Wii, and we didn’t get more than three feet away from him, he decided that the ice cream we’d mentioned the day before sounded good. Off we go, the three of us, into the car. I sat in the backseat next to him, leaning into him, arm around his little neck. He cried on the way there, pain from his tooth as the numbness wore off. He cried as we ordered, as I held him up to see the ice cream choices, and he cried as we walked to the car, carrying our cups of root beer float ice cream, while daddy paid the nice man who really didn’t know ice cream from the scoop from the register, though he at least smiled throughout the cluelessness that made it take twice as long as it should have. He cried the ride home, in between bites of his ice cream, because the tooth pain increased. We gave him Tylenol meltaways, and he seemed to feel better as time went on. Today, you wouldn’t know it had happened — regression? Not like the last times! There’s more stimming going on — his left hand is flapping and sitting oddly, and he’s grabbing himself and his hair way more than usual, but he’s talking more than he’s yelling, and he isn’t obsessing with talking about the horrible visit. Many, many reasons to be thankful as we go into the New Year.

As I type this, my little guy is laying next to me, sound asleep. Almost snoring. All things considered, he’s done really, really well this week…despite the dietary infractions (blue and red dye, yeast-y foods, way too much sugar, forgotten supplements) and serious change in schedule and social events. But the stims? Out of control, with pulling his eyelashes being the most common. The only time he’s not doing it is when he’s playing Wii boxing! (My personal recommendation: buy a Wii. Sure, it can be isolating but with multi-player games, many that require working together, you get practice in cooperation, frustration, and motor skills. And low-muscle tone? Lots of good exercise!)

In a couple of weeks, we’re ramping up the biomedical therapies — casein-free, adding in some more supplements (starting with biotin) and more dietary changes. I’m spending hours reading about removing more and more toxins (cleaning products, toothpaste with unnecessary additives, etc.) from the house. New Year’s resolutions? Heck no, who has time?

In the past week, we’ve gone to more parties than I can count on my hands. We’ve gone to our Christmas Eve church service, where we lit the Christ candle, which required quiet standing at the podium for a few minutes. Score. He handled it fine, with only some minor squirmage going on. We took ds shopping. We took him to the infamous karate class. We also expected him to handle all this on less sleep, as we were up later at night yet not necessarily sleeping late in the morning. Through it all, we’ve had sporadic serious wind gusts. Busy-ness + less sleep + more transitions + shopping + lack of routine + WIND = recipe for disaster. And what do I hear outside my window right now? More wind. (We have yet to clean up the wreck that is our backyard. At least we won’t hear the crash as the 300 lb barbecue blows over again. And the Christmas decorations it ruined or came close to ruining? Still in the garage. All I can say about them is poor Snoopy.) Winds mean more irritability and less sleep. Then he gets to look forward to the root canal and crown on Friday morning.

Holidays and children with autism are never boring at least.

And, while I’ve got you — if you’ve got some excellent GFCF or just healthy cooking or green home websites that you love, please comment and share them! I will keep adding them to my blogroll, too. Merry Christmas!

Most autistic children end up with some kind of occupational therapy as they’re growing up, be it in school or via a private provider. One big thing about O.T. is that the parents are also taught what works and doesn’t work in order to keep their child calm(er) and to maintain a sensory diet. Each kid’s ‘diet’ is unique, but most involve some sort of physical movement. Our occupational therapist suggested we take ds to Disneyland frequently — ds had/has rotary nystagmus (abnormal reaction to spinning/movement) and he needs a lot of physical input to keep his system level, and the heavy-duty rides at Disneyland (Space Mountain, Tower of Terror, Matterhorn, etc.) give him a lot of input. She also suggested a class in some sport (gymnastics, karate, etc.) that would work on physical input while helping with social skills and learning how to behave in a classroom environment. We knew a team sport wouldn’t work; ds has low muscle tone (functional hypotonia) so we weren’t sure what he would contribute to a team, but even more importantly, we knew he’d have tantrums or meltdowns if he was teased, bumped/roughed up, didn’t get to play the part he wanted or as often as he wanted, and a multitude of other things. So, we went for karate. Ds likes the Teenage Mutant Ninja Turtles and he thought their skills were cool. We knew of a couple of good studios, but we also didn’t want to sink a huge amount of money into a uniform and classes in a formal studio setting without testing his interest level. We enrolled him in a less formal (e.g. less costly) course and were pleased to see that he took the rules very seriously: be quiet, don’t disrupt the class, and try the moves. The sensei is a wonderful teacher, and pretty strict with those who disrupt. On week two, ds was trying a side-kick, while laying on the ground, and saw a ponytail from a girl next to him. He loves soft things, so he was running his toes through her ponytail. Yes, we wanted him to stop but the sensei is in charge, and sure enough, he saw it. We feared a major meltdown, but ds took the instruction and never once did anything even the slightest bit questionable again. But that doesn’t mean he always paid attention. There were times where we saw the sarcasm/funny/sarcasm talk of the sensei go right over his head, and he’d pay more attention to his belt, his toes, his belly button, you name it, than the sensei’s instruction. This last week, we knew after two or three minutes that it was going to be a long class. Ds had no focus whatsoever, spinning, playing with his hands, and tilting his head the entire time. The sensei must have picked up on it, and decided it was better to let it go, but it never improved. He barely tried what they were instructed to do, and he was always backwards. His eyes were so vacant, and he seemed so out of it, for lack of a better word. If only I’d had a videocamera, it would have been an enlightening movie. I am taking one next time, as that behavior was scary and it displayed a lot of things we really need help with.

On that same note, Christmas shopping. Autistic child. Do you see where I’m going with this? Today I took my son to Target, just for an hour or less, to buy some gifts for his siblings and his dad. I was concerned with how he’d do in such a busy place, but figured with Target, we could find something for everyone on our list. Off we went. First we almost got hit by another car in the parking lot, someone in a hurry, not paying attention, pulling out into oncoming traffic. Then we get into the store, only to find there are no carts. Shopping with ds requires a cart. We wait until someone leaves one, and ds decides that there were cute things in the dollar aisle for everyone, including a book, “Ducky’s Rainbow Delight,” for my 19 yo daughter. After I talked him out of that, the Icee requests started. For the next 45 minutes, “Can I get an Icee? Why can’t I get an Icee? Why is the Icee line so long? Can I get an Icee now? When can I get my Icee? Is the Icee line shorter yet? Why can’t I shop with my Icee? How long is the Icee line now? Is the Icee line shorter yet? Can I get my Icee NOW?” We’d head to one section, look for a minute, and get one or three Icee questions. Section after section, question after question. We finally chose the gifts (easier if you finally say “If you want that Icee, choose. Now.”) and got things I think everyone will really like, and dd headed for the Icee line while ds and I went through the long checkout line. We finished simultaneously, and then the “What kind of Icee should I get? What flavor is green? Why is that one always broken?” questions started. Solve one question, another just pops up. But, I don’t think I’ll need to go back into a store until the day after Christmas, when we just have to go and see what Christmas decorations we can buy at half-price. Maybe.

So other than Christmas shopping, what else changes during the holidays when your child (or your grandchild, niece, nephew, sibling, etc.) is autistic? I’ve got a list of things, but that’s for another blog. I also want to share our story about removing all the toxins from our home in an effort to have a more green, healthier home for our children. If you’ve got children, it’s something you need to consider, even if on a small scale, as every little bit helps. (Mercury isn’t the only thing that doesn’t belong in your home or child.)

The next couple of days are busy. We leave in 30 minutes for a party, then after church tomorrow, another party, so I may not get back on my blog until after Christmas. In case, I want to take some time now to wish everyone a very merry Christmas and a joyous celebration with loved ones.

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!) 

Anyone active in autism awareness has heard about his offensive and inaccurate ‘public service’ campaign, being run by the NYU’s Child Study Center. And this group supposedly has the best interest of children at its heart? And they are ‘professionals’ in child study and care? “Giving back children their childhood” is a slogan on their site. How does this campaign even begin to accomplish that? To me, it’s just ironic. But I digress.

To start, check out the details: Ransom Notes Campaign

My first question, one of many: to what public does this campaign serve? Not me or anyone I know. I don’t want my child stigmatized by the ignorant any further than he already is. I also don’t want him considered to have a ‘mental health’ disorder. I already have enough of a hassle getting funding for much-needed programs.

My second question: since when is autism a psychiatric disorder? (Again, I say, this is being stated by a center that supposedly helps children? They don’t even appear to know their medical diagnoses well.) Autism is a neurological disorder. A neurological disorder that has actual and real physical manifestations/symptoms.

My third question: if my child is kidnapped, who is here in my house cuddling with me in the morning, telling me he loves me, and giving me a 30-minute dissertation on the assets of all 300+ Pokemon? This is a child who is a hostage to a psychiatric disorder? Wow, maybe I should give myself up to be kidnapped, too.

This whole ‘public service’ campaign reeks of ignorance and sensationalism to get attention. The intention to shock is over the top and unnecessary. What a ginormous waste of time and money, even if it is being handled pro bono. Why not spend that time and money on getting help for those children, instead of telling people to seek help, when that help is completely and totally difficult to get?

Granted, if 1 in 94 boys were being kidnapped, someone would do something about it. But, 1 in 94 boys get autism and we’re still floundering on long waiting lists for programs, paying for attorneys to fight for things to help our child, and fighting with dareisayit, uneducated ‘professionals’ in the school and medical system who don’t know squat about autism as it is. So is “kidnapped” supposed to get attention? And if so, whose?

I’ve learned over the years that not all publicity is good publicity. There are indeed many forms of PR out there that can harm something and cause even more misunderstanding and problems than already existed, and this campaign is one of them.

You know what I’m talking about. That vacant look a child with autism gets when they have reach the point of extreme overstimulation.

 Our weekend started with an open house here with at least 30 kids playing upstairs in the playroom at various times. HIS playroom. He had been prepped all week that this would happen, but after an hour or so, he started to come unglued. He had a few tantrums and meltdowns over different things, then it progressed to him going into the ‘forbidden zone,’ our bedroom. We had the door shut and didn’t want the kids in there (ours, anyones) because not only is it our bedroom, but it was the room we used to store some of the things we didn’t want the kids playing with — the new pool table/air hockey set, the pile of birthday gifts from his party the weekend before, my computers, etc. Yet, by 8:00pm or so, he’d climbed into our bed…with food. I guess I can’t blame him for wanting to retreat, but the room was ransacked, as was the playroom, and he then was unhappy because all his stuff was scattered. (But thankfully, we did go on an intensive search for all the pieces to his new Torpedo game, and found everything!)

Saturday comes around, and we had two more parties to go to. We went to the first one late, left early, yet ds ate a bunch of sweets. He had a couple of meltdowns there, and then got so hyper, even the most patient of kids were getting frustrated with his inability to calm down. One thing to keep in mind, before someone thinks we dragged him places he didn’t want to go, is that he loves both of these families who hosted the parties. They both have animals he enjoys playing with, and they are very understanding with him, so we didn’t have to drag him — he wanted to go, which says something itself.

After party number one, we went home to give him time to decompress. We cuddled, he ate his latest obsession, Club Crackers, and he watched some Christmas TV. Then off to another party at 7:35. He loves going to this house, they are family to us, and they also have a slew of pets to play with, including a teeny chihuahua and a very spirited husky, both who are very tolerant of his energy level…though by 10pm, the husky was huddled in her kennel, like I’ve never seen, worn out from ds’s playing with her. He had a couple of meltdowns there, but not too bad. He wasn’t surrounded by nearly as many other children, and he feels more at home here than most places. After 11:15pm, we headed home, though to his credit, he wanted to stay. He was supposed to sing with the children at church on Sunday, for Christmas, and we wanted him to at least get his 8 hours of sleep. (And that alone is a feat.)

Sunday morning, he did really well singing, though I think a whole lot of lip syncing was going on. He behaved good the whole time, as far as we could tell, though he didn’t want to sing and again told his teacher that. (She’s a good friend of ours, and she’s just an amazing person anyway, so he was in excellent hands and she got him to sing anyway.) Heading to the car, things were good…until we mentioned we were going home for a couple of hours before his sister had a Christmas piano and vocal recital. All heck broke loose.

Fast forward two hours later, dh and I took dd to the recital, leaving ds with our 19 yod, with the agreement that when she left for work, she’d drop him off at the recital. Fine, right? Dh and I get to the recital, “Dh, do you have your phone with you? You probably should, on vibe, just in case there’s a problem.” He realizes, only after we’re trying to figure out why they’re not there yet, that ds refused to leave the house and ds had been calling and calling. She got him into the truck, and dropped him off, but he refused to come inside. Worrying that this would happen, I’d already alerted the music instructor that as soon as dd was done with her vocal performance in the second half, we’d be leaving. Ds sat on a little table right outside the door of the recital room, with dh watching while I video’d dd. We scooted out quietly, having enjoyed a slew of snacks at the break, and ds was excited to know we were heading home. No amount of ‘just peek! that’s your sister singing!’ would get him anywhere near that front door, and we didn’t want to push the issue. When he’s had enough, he’s had enough, and enough probably started Saturday around 3pm.

In the end, he did well, all things considered. He even survived a quick stop at Henry’s so I could run in and grab more probiotics and almond milk, though, in  his words, it took “too long.” We’d gotten a boost earlier in the day when dd had shown us her college final project in which she showed pictures of ds before and after biomedical intervention, and the change in his smile and eye contact is unmistakable. Slipping backwards for a couple of days because social events get in the way isn’t a goal, but I know that a year ago, we wouldn’t have been able to do that. He’s come a long way.

In the evening, he found his beloved Santa hat dripping wet on the bathroom counter. Major meltdown, took a while to calm him down though it ended up being him that had put it in the shower. It’s now drying and hopefully is completely there before he returns from school. He was convinced last night that it would never be the same.

Tonight he sees the dentist, so she can determine if his nightly teeth grinding has damaged a crown (over a root-canal’d tooth) to the point where the risk for infection is too high and the crown must be replaced. Dental work of that level=sedation, so I really hope that she says it’s not necessary, but it wasn’t looking too positive last time. I already got the ground work in place though for no metal, only porcelain, in his mouth, though she feels metal is okay but respects our feelings that it isn’t. Pray and think happy thoughts that we can escape more dental work for the little dude, he doesn’t need more to deal with.

When I sent him to school this morning, the vacant look was improving. He wasn’t pulling at his eyelashes this morning, as he had been all weekend. He still wasn’t himself, but that’s okay. One thing at a time, and any improvement is good improvement.

The contradiction here just seems so bad, I don’t understand why anyone can get away with still putting thimerasol (ethyl-mercury) in flu shots if articles such as this one carry quotes like this: “Mercury does cause neurological damage to people even in tiny quantities,” said Sen. John Marty, the Democrat from Roseville who sponsored the ban.

Mercury in Mascara? Minn. law bans it  (Yahoo news, A.P.)

So I can’t put mercury on my lashes, but I should inject it into my body to possibly prevent the small possibility of a bout with a slightly possibly serious illness? Hmmmm.


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