Autism Watch: 2007

Posts Tagged ‘asd

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….

I whined yesterday about all the things going on, but once just isn’t enough. Be warned.

Awards event at school yesterday, and ds was unnecessarily upset (not his own fault, imo) by a technicality. Sometimes I really wish people would understand how important these things are to ASD kids. Little upsets that just aren’t worth the fight can ruin an entire afternoon. And this did. I’ll leave it at that, but I just want to be like other parents, go and watch something and have a smiley child who is enjoying himself. Heck, I’ll forego the smile, I just want him to enjoy himself.

With no respite last night, I had to tote him along with me to Borders. He didn’t want to go, but the bribe of a chocolate chip cookie was too strong to ignore. But..and this shouldn’t surprise me, given how our week is gone..Seattle’s Best was out of chocolate chip. They had some delicious looking other flavors, but no chip. Oh no, he’s getting anxious. Oh look, a bakery next door. Run across the street, find the cookie. Crisis averted. We find Jenny’s latest book on the “new” shelf, pay the cashier (feeling the ridiculously increased tax hike for the first time and nearly cry…if I feel it on a book, what about when I shop for clothes for the kids or order his new supplements??) and enjoy my non-fat Blackberry Cream Latte. The little things in life. I was trying to keep ds calm about his cookie, then realized: would I be upset if I couldn’t get a coffee right then? Probably.

I am exhausted. I am so thankful it’s Friday. I’m not sure if the weekend will be a relaxing one, it’s too early to tell — as in, I don’t know until five minutes beforehand, and sometimes not even then — but at least I won’t be throwing work into the mix. I’ve been working earlier most days anymore, so I can be sure to put in my time around any issues with ds. It’s do-able, but when you dream of being chased by scary dogs, when ds isn’t coming into your room due to another nightmare, sleep is fragmented.

Today we’re going back to Kirkman’s chewable multi-vite. Ds isn’t currently GFCF so it’s fine. We saw the biggest improvement on it, but he hates the taste. I am not a walking checkbook, so I’d like to get him to use this bottle before I switch to a liquid or other version of it. I’m also starting him on double S. boulardii, a good probiotic to combat the yeast that’s probably built back up in his system. We did an anti-yeast protocol around 18-20 months ago and it was fantastic but it can return so it’s a good time to try again.

And, because it’s fun, ds is home from school again. Okay, it’s not really fun but you gotta laugh to get through the neverending stuff or you’ll go crazy. He woke up at 5:40am and said his leg is burning. No swelling, joint is fine, but it hurts to touch. What now? He’s near tears, and when he’s not looking, we tested it by touching the leg. OUCH!! So, a new symptom added to the mix. We’ve decided that it’s time to go back to no dietary infractions: all homecooked/homebaked stuff and no dyes. (Dad bought him Fruit Gushers earlier this week, which to me is just a big package of HFCS and dye, but Dad was giving in to a sweet boy who’d already had a lot of stuff going on and really wanted to try the gushers. Who knew.) He also had a couple of processed foods, like pizza pockets. Yanking those out of the diet too. He was already acting odd/off by then, with the lip licker’s dermatitis and headaches, so at least we can’t blame those on bad food, we really are careful with his diet. But this leg thing has thrown me for a loop.

It’s a rainy day here, so I’ll be getting the fireplace going shortly and will make it a snuggle & cuddle day. We got AT&T U-verse installed, so he can watch anything he records on any tv, and he’s got his own tv in his room. Well-worth the cost. (And the money we’re saving over our prior services is a good thing, too. TV, phone and high-speed internet together is way cheaper.)

Enjoy the weekend. Not sure if I’ll be blogging or not. I do have to say I’m disappointed I saw so little about World Autism Awareness Day, other than some online mentions in the appropriate autism-related places/communities. Nothing on TV or on the news. I guess it’s less important than what the latest loser celebrity is doing or other ridiculous news stories I did see on. Shows you where our priorities lie.

Loving your kid just comes natural, right? Wanting the best for him, doing all you can to ensure his safety and giving him all you can, within reason, for happiness? Looking forward to when they get home from school, playing with him, and just spending time with him, right? Wait, did I lose anyone on that last one?

A few days ago, I was returning at item at the store when I ran into a woman (with her child)who I’d met through a friend a while back. She has a young child who was dx’d with autism a year or two ago and my friend had tried to set us up to talk when her child was dx’d after mine, but the woman was first in denial, then was so deeply entrenched in self-pity (not about her child, but about the impact on her own life) that it never happened — her choice, not mine. I also think she had a secret feeling that I couldn’t understand her, because her life was ‘so bad,’ and mine wasn’t, though she knew very little about me. (And before you think I’m talking about someone who may just read my blog, I promise, she won’t. “That online stuff? A waste of time, I’ll talk to my doctor, thankyouverymuch.” Ooooo-kay.)

Last time I’d seen her, she was a working mom planning a vacation with her kids. She was driving a nice newish car, and looked like someone who paid a lot of attention to herself: manicured nails, modern hairstyle, non-wrinkled clothes, matching bag…not what I look like on a daily basis. 😉 This time? She was still driving a nice car, not quite as new, and the nails were still done, the hair was a different stylish cut/color, and she still looked really put together. But looks can be really deceiving, I guess. (And if a lot of people I know are any indication, you can be perfectly happy in a t-shirt and shorts with a ponytail and still be happy, so looks really don’t mean much unless you’re paid to be a model.)

First thing out of her mouth after I asked her how she was doing was a sigh. Not a good sign. Here I am trying to make a quick run to return something and replace it, and I could see a therapy session coming for someone I don’t even know very well…and here I am, a parent with my own struggles and my own issues to deal with. As much as I love to advocate for autism, educate, grow awareness and just be a listening ear, babysitter, helper, whatever, I am still a mom of a child with autism. We all deal with it in our own ways, but the fact remains, when someone drops a big problem in your lap without so much of a lead-in, I can’t help but kind of cringe. Selfish, maybe, but I think it’s more of a self-centered issue..hence, back to that “Your life can’t possibly be as <sigh> bad as mine.”  I love to help other parents, especially those with new diagnoses or other issues, but just because I’m not sighing my problems out to the first person who I speak with doesn’t mean there aren’t any. (I’ve actually considered being a paid advocate at some point, but only when my son is older. )

Now that I’ve gotten that out of the way — I bet you’re wondering what she said after the long dramatic sigh? She sighed again. Finally, after she’d impressed upon me how.truly.bad.it.all.is, she started to use words. She explained that the main reason for her sadness was that her son’s summer program was only half-day now. I patiently waited, sure there must be more, but that was it. I could understand the difficulties this would pose with her daycare, both with the cost and with the logistics, and I could sympatize. I work from home full-time because I know it would be hard to find a job that would allow the flexibility that’s necessary if a school calls or has a really bad day. But that wasn’t it. She didn’t like that he was around in the mornings later now, and therefore, she had to ‘deal with him’ before going to work. I’m not sure what look was on my face, but it must have been somehow inviting because that opened the floodgates. While she had some legit issues — we all know how difficult these kids can be, and how much time they can take — the list was, well, ridiculous. Some things she mentioned were things parents of neurotypical kids face. Others were more common among families dealing with autism, and others were singular to autism. Still, none of it prepared me for the facts of just how much she resents this child. How much she wants to leave the child with a sitter, ‘deal with the autism’ during the weekly O.T. session, but beyond that, ignore the autism and be angry about the behavior. I could say that this was because it was easier for her than facing reality, but I really think it was more of conscious decision. All in all, I got a strong feeling she really didn’t like her child, and really wasn’t interested in investing more time/effort to help him, so she was hoping someone else would.

Before I sound totally unsympathetic, I say again that I know everyone deals with an autism diagnosis in their own way. But after two years (which she emphatically reminded me) it’s time to move on. Deal with it. Face it. Step up to the plate. Be sad, be frustrated, whatever, but moping longterm isn’t fair to the child. The child deserves an engaged parent willing to do more, at any point, to help their child. It means sacrifice. It means giving up time from the manicurist if your child has a meltdown and needs mom to hold him tightly until he’s calm. It means finding a way to find family time together, whatever their type of family time may end up being — we all know it’s not always the same kind of family time other families may have. It means stop asking for someone else to fix your child, and learn to do it yourself in addition to outside help. Advocate for your child, don’t just whine. And when talking to another parent of an autistic child, recognize that it’s not a competition. We don’t have to one-up each other on who has it worse. We don’t need to compare bite marks or share only the bad things. There IS more to the child than autism.

So many of us talk about how we don’t want the label of autism to define our child. But, like the above woman, how many of us fail to follow-through? When someone asks how our child is, do we tell them how they broke our glasses in the latest meltdown, or do we share how they showed empathy successfully when their sibling’s pet died? Do we whine that we don’t have more respite or do we talk about how much fun it was when we played with bubbles outside yesterday? Do we blather on about the negativities related to our child and raising that child, or do we share the joy and happiness that we have a beautiful child?

I guess my point is that I love my son, issues and all. I look forward to time with him, and I will be sad when school starts, though I know it’s a good thing for him. I love to sit near him when his head is stuck in the Gameboy, watching his emotions and listening to his funny comments. I may wish he’d stop talking 24/7, but he talks, and for that I’m grateful. I’d much rather hear him quote an entire Pokemon DP episode frame-by-frame than the alternative. In other words, my son has good traits — wonderful characteristics — a personality that amazes me daily. I can’t let any of his autism-related behaviors overshadow that. I can’t wish time to fly by, I want to enjoy every minute…even if some of those minutes are spent stopping him from throwing something large and painful at me…because he’s my son. He’s my responsibility. When we have children, unless you have large movie-industry paychecks, we can’t special order our children. We get what we get. Some children are more challenging than others, but these are our miracles, our babies. To treat them any less is unacceptable.

And the woman I spoke with? I hope she gets some help. And I don’t mean just more respite, a larger support system (though she had a heck of a larger one than most already) or more services for her son, but therapy for herself. And maybe for her marriage, who knows what this does to them as a couple. I’ve not met her husband, maybe he’s in agreement with her? I won’t speculate, but the environment in the home as it sounds now just doesn’t sound nurturing. Even if autistic kids are literal and supposedly don’t pick up on things all the time, they are incredibly smart, and we never know what they are presuming from what goes on around them. I hope this woman stops leaning on ‘the system’ to take care of her child, and remembers she is still his mom.

And oddly enough, maybe, the child was with her during our conversation. I’m not sure how much he heard, he was playing with a handheld game, but he spoke to me, quite nicely, didn’t pester her to leave, only interrupted once to ask about buying a drink, and was quite the sweetie. Sure, we all know autistic kids don’t display behavior problems 24/7, and until we’re at home with them, all bets are off as to what mom and dad really deal with, but it was hard to reconcile the negative rant about this child when he was having such a good moment, however long it ended up lasting.

I did suggest she look online, but since she was still against that, I recommended some autism groups, some resources, and some books. I doubt she’ll follow-through, though I can hope. She seemed to know it all, and that nothing would help. (The thought of “But if something helps, what would she complain of next? went through my head.) We can’t just take our kids to their O.T. sessions, or their speech therapy, or their social-skills sessions or their behavioral sessions and then forget autism the rest of the week. It’s up to us to learn about autism. It’s like something we’d get a real education, a degree in, a career, but we learn it without the physical four walls of a school. When we start any other career, we learn a lot in a short period of time, start applying it, then continue to study it and research it. We learn about new products/tools/resources available for that career, changes in the field, and we look consistently to stay on top of it. I don’t see that any different from being the parent of an autistic child. Sure, some weeks we’re shorter on time than others, but it’s our job to stay involved, to stay on top of things in the autism community, to do whatever it takes to be the best parent for whatever kind of child we have. And to be thankful, to be grateful, that we have that child while we’re doing it.

It’s amazing to me today that the vast numbers of children who are not the same after the vaccines are simply ignored by the CDC and doctors who say there is no credible reason proof that vaccines contribute to autism. WHAT IN THE WORLD IS IT GOING TO TAKE??

I watched Dr. Jerry Kartzinel on TV this morning — I wish I could have a transcript of his explanation about vaccines and just repeat it to anyone who refuses to at least look at stats and educate themselves on the real ingredients in vaccines, or to at least be on board with understanding why other parents want vaccines redone. His words explain it like no other, and makes sense. It makes SENSE.

 We parents know our children. We can tell when they’re one way on one day, and then an entirely different child from a vaccine (or vaccines) and beyond. How is that not proof that there is something going on? Why are we not credible enough to believe? If it was just a few of us, that’d be one thing, but we’re talking thousands upon thousands upon thousands. Numbers like that can’t be ignored…yet we are.

One child out of 150 children — 1 out of 94 boys — is on the autism spectrum. Something is causing that. There’s no such thing as a genetic epidemic, and these are kids that for the most part, were developing normally (maybe with some eccentricities) until a certain age. With these numbers, it IS an epidemic. If these kids were dying, something would be done. The public outcry would be horrible. But because they’re simply dealing with communication, behavioral, sensory and social issues, it’s not worth it. (I say that with much, much sarcasm.)

I don’t need something else to get upset about. It’s been a rough day already — but how can I not? What’s it going to take? How can these doctors stand up there on tv or say anywhere publicly that vaccines are safe, all kids should get them all, and we need to do them to prevent mass illnesses..that’s saying that my son, and any other child out there with autism, is an acceptable casualty. Who is willing for their child to be the acceptable casualty?

I’m not, and I will join the thousands upon thousands upon thousands of other parents who know that our children being fine before a vaccine, but never the same after, is not okay. It’s not a coincidence. Stats this high aren’t coincidence. It’s not paranoia. It’s not trying to blame something. It’s fact — toxins are not good for our children, and there are toxins in vaccines. Fact is also that vaccines can be made safely, and given on a better schedule. Why wouldn’t everyone be okay with that? Oh, yeah, money. It’s all about the dollar…and we’ll just leave us parents to foot the bill for their vaccine-damaged children.

I almost can’t watch the news on it anymore. Few newscasts are unbiased, and there’s always one doctor who has to refute it….yet there is no definitive proof that it doesn’t contribute to autism either. You don’t hear that on the news, do you?

…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.


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