Autism Watch: 2007

Archive for September 2008

Living in California, I’m frequently asked how I can continue to drive my car and keep my air conditioning on in the face of the current economy while living in an expensive area of the country. (See, I’m one of those ‘bad’ people who drive a monstrosity, a gas guzzler, a boat on wheels…I could justify by saying I have four children and we tow a trailer with the tank and I work-at-home so I rarely drive during the day, which are all true, but it’s something I don’t feel guilty about. It’s not against the law, like all those people still driving around while talking on their cellphones, which is definitely against the law AND more dangerous.) The reality is that our gas prices are currently cheaper than they’ve been in a long time, and we’re very cost-conscious in regards to our utility bills, by shutting off lights/tvs when not in use, unplugging all chargers when not in use, turning off surge protectors/power strips when nothing’s on, shutting the blinds/curtains to keep the hot sun out, using energy-conscious curtains (yes, they’re real, and they’re not expensive), cutting back on lighting, using a newer laptop instead of the full PC when I can, and so on. So, yes, we can afford to gas up the tank fully and pay the a/c bill without crying each month.

In reality, the economy hasn’t changed our lives a whole lot…yet. Food costs a lot more so we’re making more of our meals by scratch, making sure we really do keep to the one night of fast/restaurant food per week. I bake our breads, cookies, snacks, not just for cost but mainly so I can keep the preservatives, additives, dyes, and now the HFCS (high-fructose corn syrup) out of my son’s and the rest of the family’s diet. We’ve always been careful with our money, so this hasn’t been a drastic upset for us. But, I know that for a lot of people, it has.

For the people I’ve spoken with, they’re telling me they can’t shop anymore, can’t afford to eat like they were, and some can’t afford their house. A sad picture for our country right now, but I want to bring it to a more specific angle: is the economy changing your autism-related expenses? Is it changing what therapies you try for your child, how often? What equipment you’re buying? What appointments you take him to, or what supplements and dietary changes you’re making? Are you buying books to try new therapies at home?

Already, treating autism is expensive. Schools and regional centers have long waiting lists of people who need things, who deserve things, but we parents are still left with a lot. Now when we think about signing ds up for social skills, we have to consider the cost of the gas it’ll take to get him there. Will it cut into working time and make it harder to pay the next bill that comes along? These are just examples, but valid ones that parents have to think about now twice as hard as they’d have to think about it prior to the economic collapse we’re seeing…and collapse may not be the most appropriate word, but what exactly do we call it?

I hear about bailing out the banks, people who signed home loan docs without thinking that they really couldn’t afford it, or simply not caring and assuming it’d work out somehow (“The bank approved us, it must bve okay.”) Low-cost spay/neuter clinics are being funded by major corporations. People are striking for more benefits/money. All kinds of programs are being created to help people, and some people still want more, but where does that leave us, people who just want our kids better but between the rising cost of transportation and everything else that goes into producing products, getting them to us, and services (especially those where the person has to drive to your house) things are getting harder and harder to find?

How is it affecting what you’re able to do for your child? What services are you able to find that maybe you didn’t know about before?

Yet, on the other hand, there are positives. I’ve been baking our own cookies, breads, snacks, etc., for a while now, but I make it more of a point lately to include my son, instead of feeling I need to find some other activity to do to fill our time together. Baking cookies, rolling out the dough, watching his little fingers manipulate it into shape then beaming at me when he’s done a full tray properly — that’s priceless. A trip to Gamestop, where he always wants to go, wouldn’t be as fun. And now I have more time at home, as I save all my errands for one night a week, where I still get a respite nurse, so I use less gas and am home a lot more. Another positive is renting movies instead of blowing $60 to go see one on a Saturday afternoon, where we have to buy the requisite popcorn and sodas. (Am I the only one who loves those $1.49 boxes of candy in Target, the ones that fit into your purse really easy?) Watching a movie together in our own home theatre is much more fun than the crowd and drive to a ‘real’ theatre, and ds is more comfortable. Those flame-print flannel pants? He can wear them at home without the looks, especially with his oversized but comfy t-shirt. We can also get a table at our park, and walk around uninterrupted. Usually, it’s so jam-packed with people who rent a covered table yet tape the whole playground off, but now it’s quieter. And we’re all experimenting with more foods, as we try new vegetable dishes. I’ve even mastered using the barbecue, which is really exciting to me but matters not a wit to anyone else. Last week, ds started eating carrots like he was half-rabbit. This week? He asked for celery. Too bad the first bite ended up in the trash and he’ll never try it again (it was spicy) but hey, he tried. That in itself is a new thing, and I really think that keeping him away from the sugared lemonade in favor of only organic lemonade, and less general crap in his diet may increase his interest in food…that remains to be seen, but even if he only adds carrots in as a new food, I feel like it’s a help.

So, share me your feelings on both sides. Economy hurting? But you’re finding a hidden silver lining anywhere?  (And if this entry is fragmented, all over the map, and only held together by a tiny little string, bear with me, I caught the cold that ds got then passed to dd then passed to dh, who passed it to me. All the extra treadmill and weight lifting time and vegetarian meals sure haven’t decreased my susceptibility to the common cold. Ack, mighty mom struck down by a germ…colds suck.)

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You know what I mean, that face. THAT face. The face that says “I’msomadIamshakingandoutofcontrol.” The face that you don’t want to see.

Well, I got to see it today. And so did a boatload of other school children and a handful of teachers.

First, let me preface by saying that I wasn’t sure up until 4-5 minutes before I had to leave, so to say I wasn’t really ready to leave the house was putting it mildly. No make-up touch-up, and I get to the parking lot and realize that omg I finally did what I always dreaded…forget to change out of the ‘never the house in these’ shorts, the pair with cut-off hems due to them hanging by a thread…unevenly cut off, I’ll just throw in. The sides don’t even match. And they’re wearing a little thin in a few places. But they’re so comfortable! I just plain-out stupidly forgot I had them on. You see where I’m going here, right?

Everyone always says to wear clean underwear in case you’re in a crash. Well, that wasn’t a problem, but the other truth people forget to warn their kids about is that the one time they’re least prepared to face someone of importance, or even anyone, they will have to.

This day is on the heels of standing at the gate to drop him off on Wednesday, in my Mercury Poisoning: Kid Tested, FDA Approved black t-shirt with a big hypodermic needle on it, with my son who was flossing his teeth due to a terrifying fear/anxiety that he was going to have to have surgery because two of his teeth were too close together and ripe for a cavity if he doesn’t floss. (I just realized I never blogged about this lovely memory. I guess I figure it will go down in infamy because I won’t forget the irony of it — me wearing a shirt that says Autism in big letters on the back, him flossing his teeth without a care in the world….and people understandably looking.)

So now that I’ve ramped up the suspense — I wait, and wait, and wait some more, and no ds. Finally, when the hallways are clearing out, kids standing here and there, no longer stampeding, I see ds tear around the corner from his classroom, hair flying. Oh how cute, he’s hurrying, he misses mom. Ha. Naive me. A second later I realize his face is bright red, and that sound I hear? It’s him screaming. (And yelling some words about his level of anger. I’ll leave that part out.) I grab his hand, try to talk him down, nothing. Back to the class we go, we can’t go home like this, especially on a Friday. It needs to be cleared up, for his satisfaction and mine, and the teacher’s, as I suspected he’d run off before he was supposed to, before the rest of his class. And I was right.

Long story short, he’d had another issue with a boy in his class. When this happens, he obsesses about the situation all night long, all weekend long. We’ve finally got him somewhat agreeing that he gets five minutes to rant (within reason) and then he has to move on with something else. We spent some time with his teacher, who is wonderful. I felt bad, I didn’t realize at first that I could have easily been expected to fly off the handle; with this being the first real issue of this nature, she had no idea of how I’d handle it. But, we’re a team, I really believe that, and working together as we did is so important. We left a while later, ds satisfied, a plan of action in place for him to prevent recurrence, and him having it reiterated that he can’t run off and has to communicate with his teacher when he’s having a difficulty.

So people keep asking me how his school’s going. I say good. Academically, he’s kicking some serious butt. He loves math, and his spelling also seems to come so naturally. In fact, he wants harder work, and his teacher’s going to help us on that. But is school really going good? I guess everything’s subjective. In comparison to what it could be, what it’s been at times in the past, yes, it’s going good. Is that enough though? I want him to have a good time. How do I make that happen?

On that note, I’ve got to go pack. It’s my birthday tomorrow, and my husband’s planned a getaway. I have no idea to where or what we’re doing, but I know he had me pick out a couple of bottles of wine, some CDs, and pack my bathing suit. Sounds good to me!

Long story short, apparently ds was playing with a little girl who took the game further, without his knowledge, and told a group of boys, her friends, boys my son did not know, and told them to ‘chase the bad guy,’ with my son being the ‘bad guy,’ and to ‘put him in jail,’ jail being the bathroom. Ds still doesn’t understand it, doesn’t know how it went from playing to that, or any relation between the two, and the little girl got mad at him because she was called to the principal’s office to explain.

So, while I’m very thankful it wasn’t a true bullying experience, I do have to get my son to understand that sometimes more goes on than meets the eye.

In speaking with admin, I was again impressed. They took it seriously, acted immediately, and handled it immediately. The kids were all told that touching is wrong, no matter what kind, pushing/shoving into a bathroom, or pushing/shoving, period, is wrong, and that the minute someone says ‘no,’ and infers they don’t want to play, they need to be let go. (In this case, they should have let him go when he yelled ‘no’ because he never realized it was a ‘game.’) Ds was encouraged to continue to seek help if necessary, and they stressed that he was not in trouble, he did the right thing by seeking help and telling admin. I don’t want him seen as the boy who cried wolf, and she assured me this wasn’t the case, because she did need to know that the boys, particularly so many, were not following playground guidelines and respect towards classmates.

So…PHEW. Not nearly as bad as it initially sounded. It’s amazing what one piece of the puzzle can do — everything he told me was true, everything, except the missing piece of the puzzle that explained the why, which was that they listened to the girl and chased him as part of the game.

I’m glad it’s a weekend. 😉

And to everyone who wrote me or posted — THANK YOU. It’s so wonderful knowing there’s such a caring group out there, people who understand. My best to you for a good weekend.

I picked up ds early from school to head to his regularly scheduled neurologist appointment. As we pull onto the carpool lane of the freeway, he begins to tell me a story that made me want to turn around and head back to the school…except I couldn’t, a neuro appt in a land far, far away awaited.

As close as I can understand, a group of ’20’ (maybe exaggerated in his head? maybe not?) kids put their hands over his eyes, covered his mouth so he couldn’t yell, and grabbed his arms, pulling him into the bathroom. He yelled to his friends, yet they did nothing. (He only has a few friends he plays with repeatedly, mainly one anymore, so this doesn’t surprise me.) He pulled away long enough to ask why he was there, and to let him leave, and they said “No, you’re in jail.” He breaks away again, gets out, and they try to re-catch him. He runs outside to the playground area, just running anywhere to get away, and two friends see him. Now, it must look fun, because they joined in to help him get away. They almost had him again, but when he ran far enough and his little friends were persistent, they left him alone. On a bad note, he doesn’t know who any of the kids are but one. On a good note, he doesn’t know who any of the kids are but one — which means they at least aren’t from his class.

Tonight is Back to School night. We will be setting up an appointment to meet with Admin in the morning. When he said “they took me into the bathroom,” I had to find a calm, discreet way to ask him where they touched him. I had to ask him if they ever used his name, to see if it appeared random. And I had to ask if he told anyone. He did, a playground proctor, and her words, per ds? “Poor kid.” Period. Nothing else was done.

But something else will be done. My son was dragged into a bathroom with strangers, against his will. Big deal or no, depending on who you are and how you look at it, he was taken somewhere against his will, people touched him, and he has no way of knowing if they’ll do it again. And no one did anything?

Mom’s unleashed. Admin will step in, I’m sure, we are blessed with a good team who truly care about ds, but he’s only in second grade. And I never heard of a group bullying incident like this.

I’ll update tonight, or tomorrow, depending on when I have anything to update with. Think happy thoughts.

Another year at the L.A. County Fair, another bundle of  money gone. More tired feet.

Another great visit. But, the stroller, lots of time to wander and not be in a hurry, and money to buy the snacks that keep him happy were the keys to success. If you’re going, stop by an AT&T store and get discounted tickets. You can keep the ticket stubs to purchase unlimited ride wristbands for $35. Well worth it. We spent 2-3 hours wandering from ride to ride. Ds only ran off once, in a major angry huff, when the ride guy (what do you call a person that scans the wristbands or cards when the kids line up for a ride?) couldn’t get his scanner to read ds’s band. Ds ran off, opposite direction. No clue to us, who couldn’t see him through the crowd, only dd standing there, already inside the gate, arms up with a terrified look on her face. I’m really glad I work out on a treadmill! 😉  It was hot, and I dashed really quick to catch him before he got too far, in the opposite direction, where we’d been standing prior to that particular ride. Between screams and growls and the word “cranky,” I got the story, took him back to the ride where dh grilled the guy (who ended up apologizing for the way he handled it) and instructed dd to let him get on first so that never happened again…and then I, of course, didn’t go more than 3′ away on any other ride!

He handled not winning the huge stuffed Pikachu in a game pretty darn well, though he did ask for it repeatedly. We shopped, and he had to have one of the wooden croaking frogs. If you spend any time at the fair in the Pavilions shopping halls, you’ll know what I’m talking about. (Don’t pay $120 for the jumbo one at the booth by the hot tub booth — there’s a place selling it for $20 in the Pavilions, bldg 3 or 4 I think?)

Dippin’ Dots were a new experience, one that really puzzled him. Round ice cream. Hmmmm. And he devoured a bunch of ribs. Devoured. And he seemed inordinately happy to watch dd get her eyes pierced with a third hole. (Was that a smile when she grimaced? Yes, I think it was!)

It was a good day. 10am-9:30pm, our shortest visit ever. No furniture, rugs or equipment to tote home, just various smaller items, including a bag full of Gamecube, DS and Wii games we found at a building in the back. Score! You can guess what he’s been doing since.

Tomorrow night is Back-to-School night. He’s very excited about us seeing his work. So are we! (Well, mostly..it’s only been 3.5 weeks, and I’m already there daily. Dh, otoh, hasn’t seen the classroom yet, and with an IEP coming up, I really look forward to him meeting the teacher. I think it’s critical teachers are aware that they have two involved, interested and cooperative parents.) School today was good again — he’s got a friend in his class, who also likes Pokemon, and, shhhh, don’t tell anyone, but a girl that he likes, and likes him back! Things are good.

One thing that strikes me as odd, as perplexing and disturbing, is that despite how we parents of autistic children want and expect tolerance everywhere — school, restaurants, airplanes, churches, anywhere — how quickly we turn when our child or our child’s class has a difficult experience with another special needs child.

I use the word “we” obviously as a generality, not a blanket statement because this doesn’t apply to everyone, but “we,” the parents of autistic children, are our own community. Within that community, we share our stories of school problems, insurance issues, health dilemmas. We seek support and information, and we commiserate, truly commiserate, with others within our community. But, apparently that stops when another special needs child bites our kid…pushes him on the playground…disrupts his studies one day in class…says something mean, and so on.

Now, I’m not saying that we should put up with anything that other special needs children do, but how can we rant about what a neurotypical (aka non-autistic) child does to our autistic child, when we do it ourselves? How can we expect others to be more tolerant if we exemplify “do as I say, not as I do?” Doesn’t real tolerance mean understanding that the other special needs child needs that same compassion we want when it’s our child causing the problem?

I’ve been on both sides of this. I’ve been the parent of the child treated badly by a neurotypical kid, the parent of the child punched by another autistic child, and the parent of the child biting another child. (And the child he bit? Autistic as well…but to be an equal opportunity problem, he has punched a non-autistic child, too.) I know how frustrating it is when you have to fix your child’s boo-boos that were caused by someone else. And I know how frustrating it is when you have the school call you to tell you your child hit someone else, and the parent is unhappy. Neither side is a pleasure. Maybe having been on both sides has helped me to understand it more — maybe it takes having your child be the problem at least once to truly get what it is like, the mix of emotions that you feel, the need to protect your child but the knowledge that he hurt another child, or hurt the child’s feelings.

I met a parent recently who wanted to call the police because a child in her daughter’s special-needs classroom bit her daughter, a couple of days after the child pushed her daughter. She was angry, and wanted something done. I didn’t blame her, I understood the need for a quick and safe resolution. But it also needed to be fair. And fair to both. Sure, the other child shouldn’t bite and shove, but where was the teacher? Why wasn’t there supervision? And why isn’t that supervisor, or the person who failed to secure it, the one in trouble? And why call the police? Did I mention that this child was 8? People don’t realize what calling the police does. It mars the child’s future, it leaves a nasty spot on his/her record, and that of the parents. And autism is widely misunderstood, so the special needs child who clearly needs more supervision and behavior training gets to learn to deal with the police, seeing his parents stressed, and all the legal hoopla that it brings. Who in the world wants to bring that onto another family?

In short, if we’re going to ask the world to accept our children, we have to be ready to accept our children.

Mine, yours, all.

If we want the general public to tolerate our children’s behaviors, we can’t be the pot calling the kettle black…or calling the police or making a scene with another family because their child displays behaviors due to their disability. If we want fairness, we have to display fairness in return. It only works when we all want the best for all our children, not only when it suits us.

If you’re faced with a situation where another special needs child hurts your child or upsets your child’s classroom, remember what it feels like. Remember that support is critical. Remember that this family may or may not have the support or knoweldge they should have, that you may have. Be a help, and in the spirit of a resolution that works for all, don’t take it out on their child. In the wrong situation, it could be your own. What kind of response would you want then?

This morning, I saw this story on the Today show. I’m still teary-eyed when I think about it. Grab your tissues, if you are the parent of an autistic child, or even not, you will feel this story. It’s amazing. There are miracles. Non-verbal children are gifted, and stereotypes need to go out the door. To infinity and beyond!!

Book fairs — have you gotten any of these invites yet? I wrote a $21 check for a Scholastic order earlier this week, and another $54 one at a book fair today. There were Pokemon books at both, need I say more? (Well, yes, I do..his longfound interest in science came out in full-force as he ‘needed’ the portable mini-microscope and the message projector along with the spider/bug book. So this means it’s a tax write-off, right?)

Lipstick…there’s no relation to autism, but I think at this point, if I hear the word again,  for a while, I’m going to get earplugs.

School. Week 3. Lunchbox is broken. Again. See this old entry to learn why that matters. I pulled out a metal Spongebob box I found on sale at Michael’s last week, and I think it saved the day, to know that he has a back-up, though he swears that a fully broken box, to where it’s un-usable, will result in a ‘beat down.’ No, Honey, that’s not okay. It’s cooler this week, time for a sweater in the early mornings, (if you’re thin-skinned) and pediatric cough/cold medicine in grape flavor still looks/tastes like glue though he can choke it down if needed. but, his teacher is still wonderful, the fears that continue to pop up are continually allayed by a quick talk with his compassionate teacher, and back-to-school night is next week. There are still ‘brats’ in his class, but he’s got a new friend whose mom is also friendly, so things do change.

County fair is this weekend. This means anything and everything fried on a stick. It also means aisles and aisles of great shopping opportunities and plenty of things to wear out my son’s patience in between rides and more crap to eat. What would the fair be without it? It means toting out his special stroller, and packing lemonade powder into ‘the backpack,’ but it also means a satisfying feeling of giving everyone in the family something they want, and spending a day together with no stress…okay, just a little stress when I freak out because I can’t see him for six seconds while he heads up into yet another fun house with his sister. Think happy thoughts. 😉


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