Autism Watch: 2007

Archive for April 2009

I’m going to warn you — I’m going to be very candid here. I don’t need the flames if I offend, I’ve got enough already going on, so I really hope readers can understand that this is what it’s like in this part of the community and just take it for what it is, my feelings on a sensitive topic that I deal with daily.

Before I go any further, let me just say: speech does not equal communication.

My autistic child is verbal. Very verbal. His vocabulary amazes people, even his parents, daily. That’s the good news.

My autistic child is verbal. Very verbal. His vocabulary includes a lot of words uttered, yelled, and screamed solely to upset others. He speaks so quickly, he has no filter to stop the inappropriate commentary from coming out unbidden, towards anyone, even when you least expect it. When he’s upset, which is frequent, the words become meaner than the usual ‘stop,’ or ‘shut up.’ They might wish me dead. They might wish himself dead. And that’s just the beginning.

On a good day, or in a good moment, he uses his words to communicate more properly. He tells me he has homework to do, that he wants to eat cookies, or that he doesn’t feel well. Well, let me back up a minute. He attempts to tell me he doesn’t feel well. He interprets anxiety in ways we can’t understand, so when he tells me he has a stomachache, it doesn’t necessarily mean his stomach aches. He can verbalize that something’s wrong, but can’t always pinpoint it.

When he’s upset, he sometimes gets so garbled, we have to remind him to use his words. He can go non-verbal for a few minutes or a while. Sometimes he gets so hysterical, we have to remind him to use his words then as well.

Let’s take a typical day out of our recently, newly typical kind of week. He wakes up, we play our “I Love You” game, and he tells me he’s hungry. I make him the food he wants while he cuddles under his blue blankie and watches some recorded TV. He eats, spilling a good amount on the table, and when he’s done, goes back to the couch. I’m the anal/uber-organized mom who has everything ready the night before, so mornings can go easily if he’s in a good mood. Problem is, he doesn’t want to go to school. Today. Tomorrow. Ever. When I tell him it’s time to get dressed, he can whine for a minute like any neurotypical kid bothered at the interruption to Pokemon episode #317, or he can flip out and start yelling at me about how he doesn’t want to go to school, how his stomach feels pinched or how awfully mean I am for making him go. As if it’s not already upsetting enough to have to make him go when he’s happy, now I have to make him go when he’s calling me names and says he wants to go live somewhere else.

He has no idea of the power of his words. And even if he did, I’m not sure he’d care. We work on this daily. None of his tirades are acceptable. Every inappropriate comment is addressed. But, just like any aspect of autism-related behavior, it doesn’t go away overnight. Some of it’s such a problem, it never goes away.

So here’s where it gets candid. Despite so much autism awareness, people still hold verbal children much more accountable for their actions than a non-verbal child. People still tend to act as though the words of an autistic child are willful and intentional. They’ll excuse him when he freaks out because the vibration in a ceiling light bothers his ears, but they won’t excuse him when he uses mean words. When he gags up dessert because he can’t tolerate the consistency of nuts in a brownie, they pay him on the back and offer him a chocolate chip cookie. “Poor thing.” When he says it’s a “stupid brownie and the cook should learn how to cook without nuts,” the tolerance goes away. What people don’t get is that it’s the same thing. For one behavior, he gets “poor thing.” For the other? “Brat.”

So what brings this to the forefront of my mind right now? Our respite nurse just quit. We were called by the agency and given an excuse reason that doesn’t really make sense, and she didn’t even tell us or take the time to say goodbye to our son. (Hard to say goodbye when you cancel on your last visit, though we didn’t know at the time it was the last time.) The last time she was here, BB gave her a hard time and told her to shut up and be quiet. Definitely unacceptable, and we told her she needed to reprimand him, it was okay with us, and we also talked to him about it, in front of her. We thought it was over with, and that she understood. Instead, we get a cancellation for last week, and a permanent cancellation today. The agency is working on find us a new nurse, but I have serious concerns and know I have to have a long talk with the new nurse when one is found. (And I think I broke a new record for the number of “times,” ha that the word “time” was used in one paragraph!)

But, there’s a big picture here. If I had a dollar for every time someone told me how awesome it was that my son can speak, I’d be a millionaire. Yes, it is awesome, but it doesn’t erase all the other things. It doesn’t negate a self-injurious tantrum or a book/food/toy slinging-fest. It doesn’t fix the medical issues (potty issues, rashes, headaches), it doesn’t remove the sensory issues, and it doesn’t resolve the tics, repetitive movements and obsessions that get in the way of regular daily life. And it only impedes social interaction.

If you don’t know he’s autistic and you heard him get upset, you’d think he was just an obnoxious brat with parents who haven’t taught him how to behave. Now I wonder if the nurse thought this, and I know we had an aide a couple of years ago who thought it. (And maybe a teacher in there, but that was at our ‘old’ school.) If someone has the wrong idea about autism, they don’t seem to understand (believe?) that autism is a spectrum. A child can be verbal and still be on that spectrum. Being verbal is just a skill or tool that a child has, just like some kids with autism are savants and some can easily tolerate noise and some are able to control their anger without having a tantrum. If people started to view speech in that perspective, I really think things would vastly change.

But in the meantime, there’s still a bias. I’ve had a few people be quite mean to me that I’ve had the audacity to ‘complain’ that my child has issues. “At least he talks.” Yep, he breathes, too, so I guess I should be okay with everything else?

I understand that having a child who cannot speak is heartbreaking. I can’t say I know how the parent of a non-verbal child feels, because I don’t. But I don’t think that a parent of a non-verbal child can understand how I feel either. I wouldn’t dare to make a comment about their child, so why is it fair game to say it to a parent of a verbal child? Why is it alright to diminish everything else?

So this is a bit of a rant. I’m tired of the bias, and it’s finally coming out here on my blog. Because my child has speech, he is held to a higher standard. He’s expected to behave, to use only nice words, and to not get angry. He’s expected to suddenly have skills he doesn’t have, all because he can speak. Forget the fact that he can’t interpret body language or facial expressions, that he can’t understand the whole personal space issue or that he takes everything literally, he can speak! Why am I complaining, he can talk!

Life isn’t so easy on the other side of the spectrum. Everyone should say that, and mean it.

To you professionals out there that decide you want to work with autistic or special needs children, please remember they come in all shapes and sizes. You may work with severely affected, or mildly affected. Don’t just study up on the severe, the ones that are the stereotype of autism, but the full range. More importantly, get a thick skin. If you go into the field of special ed or medicine, or anything related, toughen up. Be part of the solution, not part of the problem. Yeah, that’s so cliched, but it’s real — if you can’t tolerate a child telling you to shut up, turn in your employee ID and head home. Sign onto the computer and look for a job a field without children. Or, remember that you’re working with a child with a disability and sometimes they’ll say things that you don’t like. Remember that they’re not your children, but rather someone you’re paid to do a job for, and that job is teaching and supervising. Teach, supervise, and go home and impose your personal feelings on your own children. When you’re on the job, do the job. You don’t have to like being told to shut up, but deal with it. Don’t dump on a parent at the last minute, ruining their only night out with their spouse all week long, and don’t add to their load by refusing to come any further because their child hurt your very delicate fee-fees. Suck it up. Or, try a new career. I have a job. I don’t like everything that I hear all day long, but I shake it off. And I even get called names. Frequently. (I’m in management and I deal with the public all day. Enough said, right?) I don’t like it, but I recognize it for what it is; I breathe in an extra breath, think about how I’m going to appreciate that paycheck when it comes, how glad I am to have a job (especially in this economy) and how I can leave it behind at the end of the day…and how that nasty person is someone else’s problem then, as long as I’ve done all I’m being paid to do to try to fix things then and there. Isn’t that the epitomy of a job? Doing what you’re paid to do, and doing it well? If you have moral issues with a job, then quit, but don’t take out your inability to handle something on a disabled child.

Rant over. Maybe.

I really think it should be required of any/all people working with children to be fully trained in all aspects of autism spectrum disorder. Don’t just train people in all the nuances of working with a verbal and a non-verbal autistic child, but teach them compassion towards both. Teach them to not treat one better/worse than the other. Teach them that just because a child doesn’t physically look handicapped doesn’t mean that they aren’t. Teach them to keep their pre-conceived judgments to themselves when they’re on the job, and remember that they’re dealing with someone else’s child, a child loved more than anything, a child worthy and deserving of respect, even if they’re not necessarily able to give it at that time. They’re also dealing with a family already overtaxed, and a family, and child, who need consistency. (Symptom of autism: extreme need for sameness.) Refusing to work with a verbal child is not just a change in your schedule and a relief to your overly-sensitive feelings. It throws a wrench into the lives of several others, and can’t be easily remedied. And if it’s not something you think you can find a new way to deal with? My advice is to see above, and look for a new job. Working with special needs children is definitely not for everybody, but if you put yourself out there, do it right.

As for me, I’m on the hunt for a new nurse. This next one is going to be the unfortunate recipient of a long talk about autism, and some questions on his/her tolerance level. I’m not going through this again. In California, our budget is so far in the tank, if we don’t use our respite hours, we’re told we could lose them. But, if our nurse refuses to show, and then they can’t find someone to replace her quickly enough (or not at all) how fair is that?  But I won’t digress. I’ve already written a very long diatribe on a few things and all the while, I’ve been listening to my son complain about having to do what he sees as an inordinate number of math problems. (Who knew “regrouping” was actually “borrowing?”)  I’ve had to re-type a million words, and I’ve had to stop two million times. His constantly incessant complaining is killing my concentration, and while I do love to hear his voice when he’s not mad, he can also go on and on and on and … anyway, on and on about a topic of interest, which in between math problems is “Total Drama Island.” In that time, he could have easily finished all that math homework. So the obsessive talking also gets in the way of getting things done. (Both his and mine, but for the sake of my point, we’ll just focus on his.) And now we’re obsessing with the social issues he’s facing during his days. Maybe we’ll finish math homework sometime tonight? It is mentally exhausting. Another side-effect I forgot to mention.

In the end, sure, I’ll take verbal over non, but please don’t use his ability to speak against him, or me, in any way. I can be very verbal, too. 😉

My alarm went off at 5:00 this morning. I couldn’t believe it; I feel like I’d just gone to sleep. It stinks to wake up in the morning and not feel anymore rested than when you went to bed. Six to seven hours of sleep should fly by comfortably, which it did — that’s not something I can often say, with ds’s sleep habits, nightmares, and just issues staying asleep all night — but I didn’t feel like I slept. Dh is off today for Good Friday (like most people I know) so he woke me back up at 6am, and I headed downstairs. Booted up the computer, sat down and there’s ds, asking me to cuddle him back to sleep on the couch. In five minutes, he’s out, I’m back at the computer, and all was well..or was it?

Dh had an appointment, so he’d left by 7am, when ds woke up, announcing that he wasn’t going to school, he hates school, and he always gets ‘colds’ when he’s at school. Colds? This is new. Talking to him about how he wasn’t going to get a cold at school was only making things worse. It escalated to him kicking at me and yelling that he was not going to eat breakfast. He fell back to sleep, woke up about 30 minutes and called to me. Then he realized he was still mad at me for forcing him to go to school where he could get a cold.

Then the real humorous stuff started. He told me that after this year, he’s not going back to school. In fact, he’s going to be homeschooled. By me. Now, don’t get me wrong — I’ve homeschooled my two middle children extensively. I graduated one, successfully, and another entered public school in middle school, fit right in and tested to GATE/Advanced classes all the way through. (She now starts high school in August, in more GATE/Advanced classes.) So, I’m not against homeschooling. Homeschooling this little guy just isn’t part of the plan.

When he calmed down, sort of, for a few minutes, I asked him why he hates going to school so much. Out came a litany of reasons: the kids aren’t nice to me, no one plays with me, I have to talk when I don’t want to, I’m bored, I finish my work and have to wait for the others, and I get colds.

We have an IEP coming up within the next few weeks, planned mostly to go over what we’re going to do for him socially. With a letter looming about excessive absences, we have to find ways to get him to school. Beyond that though, because I’ll deal with the truancy issue if need be, we want him happy at school. We don’t want him dreading going.

This  morning’s drama aside, I bet when I pick him up this afternoon, he’s going to happily climb in my car and play our “I love you more than anything you can say!” game like this morning didn’t happen. We’ll talk about our Easter plans — going to church on Easter, the hunt at church, our big Easter dinner at our friends’ on Sunday, and the hunt there. And, of course, the Easter bunny coming. The Easter bunny is a big thing here, just like Santa and the tooth fairy. I don’t know how much longer we’ll have his belief in these things, and we want to make it count while we do. He’s been begging for the “Sorry Sliders” game, and since we’re encouraging games, interaction, and the skills that come with them, Sorry Sliders will be alongside the pile of baskets…along with a couple of  movies the kids have been asking for. And candy, though we tried to go as low-dye as we could.

School pickup is at 3pm, I’ll update later about how his day went.  Happy Easter!

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….

A few months ago, I chronicled a visit to the dentist from a different perspective. Here we go again, since it’s the easiest way to fully describe how hellacious routine things can be.

Ds, or Barnacle Boy, has always had a difficult time with haircuts. After dh developed a steady routine with me after his first haircut at age 3.5, it got a little better, but only if the routine was followed each time. It included time to adjust to the chair, the tools, patience during the cut, and a balloon and treat after. Fast forward five years, and BB has long hair. It’s a combination of not liking haircuts, wanting to have cool hair, and wanting to be able to hide his eyes behind his hair like it’s a curtain. We promised him no haircuts (other than rare trims) if he washed it and brushed it; in other words, it had to be clean and no knots. This past week, it came time for the second of trims, and he was really not happy with it. It took a couple of weeks to get him to the point of readiness, and dh insisted I take him so I could direct the stylist. I think that was the first mistake.

I drove him early on Saturday up to the stylist, expecting a wait of at least a few minutes since there were already others in the waiting room. That would have given BB some time to adjust to the sounds and smells and not feel rushed, but they had an immediate opening and he was called right in. Autism needs an adjustment period to any new environment, and that didn’t happen. Autism doesn’t like different odors, lighting or crowds and the accompanying sounds without prep time. To make things worse, I’d forgotten my cellphone in the car, and BB wanted pictures taken so I had to run to my car to get it. (It didn’t help that I park my new car way away from mainstream traffic, so it wasn’t a two-second jaunt.)  I returned quickly, thank God for stamina from running daily, but then the problem was, he didn’t tell me where he wanted the pictures taken, or of what, specifically. I shouldn’t have assumed it was just typical pictures of him getting his haircut. That would have been too easy, and nothing’s easy with BB. Autism doesn’t like to be out of control and have a curveball thrown at it.

The stylist already looked put out by BB’s behavior, wanting to know what was up with him. I whispered to her what it was, and that patience was her best tool. Autism needs a chance to speak its mind and control the environment a bit. I meant my pointer in a helpful kind of way, for her benefit as well as his, but I’m not so sure she cared for my advice. (But, too bad, he’s a paying customer and I’m asking you nicely.) He started to flip out over the white piece of fabric that gets wrapped around the neck to prevent hair from getting inside the collar; autism doesn’t like tags and tight things, so the stylist said no problem and didn’t put it on. But, by then, the damage was done. Autism was out of control.

The salon was fairly crowded for early on a Saturday morning. People were staring. I was trying to quiet him down, and apologizing to the stylist at the same time. “Don’t take it personal.” He wasn’t saying anything bad to her or about her, but he did make sure everyone knew that he liked the “other” place better, he didn’t like this place, and didn’t ever want to come back. Stylist would say “head this way” and head went that way. Stylist would say “hold your head up” and head went down. Autism was mad.

Finally, he was done. Fastest haircut he’s had yet, though I don’t honestly think the stylist needed to push it that fast. She let her personal feelings, e.g. “get this kid OUT of here” get in the way. So, he’s right. I won’t take him back there. The manager approached me at checkout, while BB was trying to escape, I said “no, stay here” and he ran anyway. People were staring. One guy in particular looked flabbergasted (okay, there are other words but that one’s just fun to say) that he said no and ran out. I focused on the fact he didn’t run away, just outside the door. I can live with that. The manager asked what was wrong, and I explained to her. She was very nice, and didn’t seem thrown at all. But, still won’t go back there. He may be a handful, but he’s a child, a human with feelings, and a paying customer.

We went straight to the car, didn’t pass Juice It Up and didn’t collect a prize from the game machines at his favorite pizza parlor next door. Straight home. He complained all the way home about how his hair was too short, how everyone could see it, talk about it and not like it. Autism was on a roll. We pull into the driveway, dad’s walking out front just in time to watch BB slam the new car door. BB decided he was not going to go see the Easter bunny for a picture; in fact, he was going nowhere. Really. Two hours later, we were getting into the car to get our annual bunny shot. He smiled. The bunny was patient. The line was short and BB bought a stuffed monkey he named Butterscotch. It was a promise to us that he would stay at school all day, every day for the month of April. Do you want to know how it’s gone since? I will update that story tomorrow. Right now I have to go see if the school has answered either of my emails. The nurse and I are bonding, and I’m on her speed dial. Monkey see, monkey do? NO way.

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.

First, today is World Autism Awareness Day. I wish there was a way to roll the word ‘advocacy’ in there, but a website url can only be so long and be remembered. Bumper stickers only so big. Headlines only hold so many characters. Check it out at: http://www.worldautismawarenessday.org. It isn’t the end-all, be-all for autism, but I’ll take it. If it gets just one more person to learn about autism, that’s a success in my eyes.

So much going on lately. No, no major illnesses, traumas, situations, just a lot of stuff. Just a ton of stuff. I bought a new car; I figured driving an 8-seater SUV we bought when we had all the kids younger with us regularly no longer was necessary now that I’m driving just a couple around. I also hated parking The Tank on regular errands, and my dh either took pity on me or got tired of hearing about it, so he decided the time was now. I got my ‘dream car’ for all intents and purposes and in today’s economy, got one heck of a deal that makes it completely affordable all the way around. (And to fill a tank on $35 — who knew you could do that??) Getting the alarm/bluetooth installed took FOREVER to get resolved, but the dealership was spot-on solid about customer satisfaction, so thumbs up to them despite me having lost almost a week of my life that I’ll never get back.  We also went camping and half of us ended up with the stomach bug. Work got busier, and the cockatiel noisier. (You’ll see why that matters later, I promise. I may be weird but I usually make sense.) And there’s ds.

The last few weeks, something’s been off. He’s had a lot of headaches over the last six weeks, resulting in the need for a panel of blood tests and an MRI. (Or as he keeps calling it, an “MRD.”) He’s been tic’ing a lot, this gulpy breathing tic that bothers me more than it should, way more than it bothers him. His temperament is completely unpredictable; he’ll be great one minute, inordinately angry the next, and crying a few minutes later. Then there’s the lips. And that’s where the problems get worse.

With the headaches/migraines, ds has had a hard time finishing a full day of school without a visit to the nurse. We try to get him to stay the whole day, but if his head hurts, he can’t. Yet, if I keep bringing him home, he’s got too many absences. We’re waiting on our follow-up neuro. appt., but that’s not for two more weeks. There’s no way to get him in there sooner, and even that will require him to miss some school time.

Attendance at school is not as important as we’re led to believe. As a past homeschooler, this I know for sure. I may not know everything about autism, but I know that autistic kids interpret stress and other things they can’t identify in ways we don’t understand. A headache could be anxiety from having to sit still too long while waiting for other kids to finish their work, a problem he tells me about frequently. (He chose to up his RSP time to help with that.) A tummy ache, that could be stress from trying to get along while the buzz of the fluorescents and the breathing of the bumping child next to him distracts him. We all get these things, but as non-autistic people, we find ways to get by. Our kids? Not so much. These are things not easily remedied in a school setting, but if we bring them home, not only are we showing them they can get out of an unpleasant situation and skip learning proper coping skills, but we have the dreaded lengthy list of absences.

So it puts the parent in a difficult situation. Unwinnable. You can’t necessarily make their illness go away while they’re at school, but if you bring them home, where they will feel better, then you have a whole different problem. What to do?

I’m giving my son a pep talk every morning. “Don’t go to the nurse’s office unless you are completely sick and can’t stay.” I don’t want the poor thing struggling through a day with a migrained, but where do you draw the line? How do you know? And how do you improve communication skills so the real problem shows through and isn’t masked in some aching body part?

Lately, he’s complaining about his ‘friends’ at school again. I say the word ‘friends’ lightly, because, in my opinion, friends invite each other to their birthday celebrations. Friends don’t ignore you when you call their name, and I’m not sure if it’s even called ignoring when the kid looks directly at your child and then keeps going. Friends don’t play right in front of you and pretend you aren’t there. I feel sorry for today’s kids in sort of a big picture notentirelymybusiness kind of way. (And if this doesn’t apply to you, disregard.) Kids won’t necessarily have manners, compassion and know how to treat a friend if they’re not taught. This is where parents come in. It’s not the school’s responsibility. (But, I would expect teachers to address it when they’re seeing it.) Parents need to teach their children how to not treat someone else badly just because they’re different. Not to ignore someone who calls their name. To be nice to someone when that person’s not harming them. How is a kid supposed to learn if mom tugs the little girl’s hand away as fast as possible when your child says hello? How is a kid supposed to learn if mom says “stop!” to her own child (and worse, yours) when they are playing nicely, for no other reason than she doesn’t want her perfectly neurotypical child playing with your non-infectious ‘different’ kid.

See, here’s where I differ from a lot of people. I haven’t shared my son’s diagnosis with the classroom and students at large. I don’t feel I should have to, nor do I feel it’s in his best interest. I’ve considered it. (Well, “we,” as in dh and I, but I’m the blogger, so I’m going to talk about me. It really is all about me.) But, the judgmental attitude I experience with some parents wouldn’t magically disappear. Many parents would just change from “you poor kid, you don’t have to subject yourself to playing with the different little boy” to “you poor kid, I won’t force you to play with the kid who can’t control himself.” Yeah, I have a bad attitude…today. Or often? Hard to say, but I am still wondering how my son is supposed to fit in, or learn to fit in, with other kids his age when few give him a chance? We expose him to as many groups of kids his age (and older/younger) as we can, but his differences make him stand out, and few people want to take responsibility for having to deal with it voluntarily. So, he’s been invited to two birthday parties in the whole last year, and two friends have him over. And I know, we are more blessed than many by having those two friends. Thing is, my son’s not that much of a handful. He is a handful, yes, but there are times when he just needs to be a regular little boy. But, I digress. See? So much to say, so little time..and room.

It’s after 1pm my time, and no call from the school yet. He has an awards ceremony in an hour, and I will be there in the front row, or I’ll have to show someone else out of my reserved (ha) seat. He’s getting two awards. I can’t wait to see the smile on his face! People often underestimate the importance of praising a job well-done. They don’t realize that so many autistic kids want to do well, they want to be a part, to be accepted, and to be proud of what they’re doing. They’re proud of it, so they don’t see why others aren’t. My son will float for getting awards. Such power in saying “good job.” Such positive motivation to say “I like the way you xxx” instead of saying “Why did you xxx.” If only we could teach everyone that.

So what did you do for World Autism Awareness Day? There’s still plenty of daylight ahead, so what’s your plans for the rest of the day? My respite nurse has a sick child, so I won’t be using my respite tonight, which scratches out my plans, but on the other hand, I’m going to take my little guy to Borders to buy Jenny McCarthy’s newest book, Healing and Preventing Autism, and we’ll hit up Seattle’s Best while in there. (Grab her book if you can! She and Dr. Jerry Kartzinel did an amazing piece on GMA this week, despite all GMA’s “experts” refuing what they said. The proof is in our kids though.) Then we’ll come home, make some pizza, and snuggle as the clouds and rain rolls in. Works for me!


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