Autism Watch: 2007

Archive for November 2008

Wow. Autistic children are being kicked out of church, restaurants, school, airplanes, and now the Girl Scouts? Girl Scouts Reject Girl With Autism (ABC News)      ADA anyone? I could share my feelings on how everything else in the world is protected, down to protecting me from harassment if I choose a blue tube of toothpaste over a green one, but discriminating against invisible disabilities is fair game and legal….but I’ll spare you and myself. After all, tomorrow is Thanksgiving, and I’m grateful that our kids are still allowed to go to the dentist and doctor’s office, no one’s been kicked out of there yet, right?

UNC Autism Study Expanded  (Orange MyNC)   I’m all for studies that don’t try to blame someone but rather look into something that helps for early intervention.

How to Prepare Students With Autism to Succeed in College    Good advice, though honestly, the thought of planning for college right now seems difficult. I just want him to be successful in the second grade.

Autistic Boy Hopes to Get Missing Parrot Back  I realize this isn’t ‘news’ in the same sense the above links are, but someone out there, have a heart. Give the kid his parrot back. 

Florida Teacher Who Let Students Kick Autistic Child Out of Class Suspended   Can you say “it’s about time?”

And more on the above: Mom Claims Teacher Abused Boy  I don’t even know what to say.

Lots of stories out there too about new programs, new schools….my selfish Thanksgiving wish? That something will open up in my black hole of autism schools in Southern California, a school that’s affordable and close enough for my little guy to attend. We can always hope, right?

When you have a child with autism, life is one big plan.

You plan what to cook for dinner. Keeping in mind the few items your child will eat (can’t touch certain textures, smells, tastes….) you also still have to find food the rest of the family will eat, too.

You plan what outfit your child will wear the next day. Be sure the tags are off the shirt and pants, the socks aren’t too tight, the zipper goes up easily, the shirt and pants are as soft as possible, remembering that long sleeves are good on hot days and rain boots work with shorts. (You also plan to ignore the people that stare at the unusual ensemble, and you plan to appreciate your child’s unique sense of style, comfort in his own skin, and lack of concern over what others think.)

You plan what to take on a car ride, and what path you’ll take. You plan entertainment for the trip, which for us means the Nintendo DS, a car charger, a charger for a wall outlet, the case with the games and the buddy battle cord. You plan adequate music or a movie. You plan timing to avoid sitting in traffic, yet avoiding sitting and waiting too long upon your arrival.

You plan your daily schedule. You plan to fit in adequate cuddle time when they wake up, textra time in case of a pre-breakfast meltdown, time to say goodbye at school so you’re there not too long and not too little, and you’re sure you’re back at school in time so he’s not walking too far to the car. You plan your errands so he doesn’t have to go with you unless it’s a short one, and you plan the more fun errands for when he has to go with you so he’s happy.

You plan your social events. Can he handle the crowd, the noise, the smells, the lighting, the speed, the activity..the list goes on.

You plan who you’ll socialize with. You plan only on those who are accepting, understanding, and flexible. (That comes before ‘fun.’)

In life, it seems like people are either planners, or not planners. We were already planners or maybe it would have been a rough adjustment. It’s a known deal that if you plan the future too much, you can miss the spontaneity of the present. So do we parents of special-needs children, miss the ‘now’ because we’re planning the future? How much of the future do we change because we’ve planned so much? Is there more to be said for winging it? Maybe so, but I still think the ‘now’ would be so overwhelmingly difficult in some situations, or many, without the planning. So where does that leave us?

This last week has been a whirlwind of planning. All new appliances in the house, on a last-minute notice, meant a lot of preparation. Then moving bedrooms around to give ds his own room was even more preparation. (And I’m sad to say, we’re still finishing that, and the piles of things left to put away in ds’s new room is bugging him, but we underestimated the time involved in moving the multitudes of stuff and sorting through it all, deciding what to keep and what to give away..or what to sell in the infamous garage sale.) We’re 90% done, but still planning on what to put where, and when to do it. With Thanksgiving in two days, and a camping trip, even more planning: what are we making? what ingredients do we need to buy? what clothes to pack in the RV?

And some things you just can’t prepare. Tonight, on our way home from ds’s behavioral therapy, thump-thump-thump while on the freeway in the carpool lane. Flat tire. Ds was so afraid, and he chose that moment to have a meltdown. The police officer who stopped to check on us was very nice, and immediately picked up on ds’s fear. Spare on, and we were off in under 15 minutes. It was entirely unplanned, but ds and I had a good talk, as we’re walking along the edge of the freeway in the dark, ds kicking rocks and me watching for snakes. We can’t plan everything, and sometimes the unplanned things pan out in a way you don’t expect. I think I’ll stick with planning, at least for now, but I did learn to appreciate the unexpected, and if you think about it, what’s more unexpected than an autism diagnosis.

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

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

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

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

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

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

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

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

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

We took Barnacle Boy to see this today. I will pay any amount of money to listen to him giggle, and Dreamworks didn’t disappoint. This movie was every bit as good as part one, and is one we’ll be buying when it comes out on DVD. Funny for adults, and hilarious for kids, with a story line that’s easy to follow. And, it’s not too long. Perfect score…and we’re picky. 😉  (And a bag of licorice in my purse didn’t hurt!)

Yep, another one of those entries, the kind where I share an incident where my son overcame a difficulty but my heart still breaks for him. No tissues necessary.

Waiting at the gate, he’s late coming out. I see the little girl he has issues with walk around the corner sniffing. Finally, I find him sitting on a bench talking to his teacher. That in itself is an ‘oh no, what happened now?’ moment, but do you ever have times where you look at your child and you are so overwhelmed by love and a bit of fear for him, and this overwhelming need to grab this beautiful little miracle and run away to an island? This is one of those moments.

He’s sitting next to his teacher, who is patiently explaining how to better handle something. He’s looking in her her shoulder or somewhere in a distance, as he’s nodding in response. His eye-contact is nil. He’s wearing a polar fleece ear-warmer on his hand, upside down. (Someone gave it to me.) He’s flapping his fingers, and he’s wearing his ‘weighted’ shoes (aka heavier shoes that don’t quite qualify as casual shoes or dress shoes or boots and are definitely not sneakers), tapping a foot up and down. He looked SO. DARN. CUTE. It was like someone was pulling out my lungs, I wanted to just hug him and never let go. This stupid autism, how dare it mess with the ability for my child to just be a child?

After a little more talking, where I learn he’s not in trouble nor did he cause any, I also learn that the teacher’s working on a way to resolve these issues between two kids that entirely rub each other the wrong way. I try to get ds’s attention, but at most I get a glance to where I’m standing, no higher than waist-high. No pretty eyes for me either, and I live for those pretty eyes. I can see my little boy shrinking inside himself, and my heart just contracts. Does this ever get easier?

Social skills are so undervalued in society. People think that being a loner is okay if the child wants, but what if the child doesn’t want it? What if the child wants to make friends but just doesn’t know how? What if he can’t pick up on the nuances and subtle body language, facial expressions or even sighs?

This morning, I took him to school in the midst of gale-force winds. (Did I mention that winds usually make him anxious?) He sees a little girl he likes (“Just friend-like, Mom, not girlfriend-like, but she wants to marry me still.”) and asks if she wants to play with him. He doesn’t really look at her, just talks in her direction and has this little smile on his face, almost as if he’s trying not to smile and is afraid she’ll say no. She says “Hmmm, what about recess and lunch but not now?” He comments back that he just wants to play with her whenever “if you want to, though.” She agrees, and out comes the rest of the smile, though he was really trying to hide it. Again, my heart just ripped some more. This precious little boy so wants friends, so wants to play and so wants to not have the anger issues that he does. And I so want that for him. I only wish I knew how to achieve it. The island won’t help, I know, but at least he can’t get his feelings hurt there.

We recently decided we’re going to make our playroom into ds’s bedroom. He’s been sharing his room with his older brother, but it’s time for a change. Ds refuses to sleep in his own bed, and wants to sleep on the futon in the playroom nightly; the playroom is directly outside of our bedroom. If you can’t bring Mohammed to the mountain, bring the mountain to Mohammed, eh?

Ds had a neuro appt this afternoon (seizure free for 9 mths!!) but between last night and after, I spent hours going through the playroom from top to bottom. Literally, top of the cabinets, by the ceiling, to under the futon. Boxes and boxes, piles and piles, tons and tons…okay, so maybe pounds and pounds of stuff was relegated to the garage. Not sure yet if it means a garage sale or a trip to the shelter dropoff. It’s all in good shape — I filled a monster-sized street garbage can with broken things or games with missing pieces. Major work to cull out only the things that ds/dd will play with, or board games that we’ll all play. (And wow, do we have a lot of those, I really need to use them now that they’re dusted off.)

Then, the bedroom. The closet. Argh. I pulled out about eight boxes — shoe boxes, Disneyland hard plastic lunchboxes, other miscellaneous cases — full of dominos, little dragon toys, military ammo for G.I. Joe sets, legos. Sounds great, right? Except they were all mixed together. Just when I’d move the last pile of boxes, move them to the ‘goes on a different shelf’ pile, a marble would fall out of the Hot Wheels box.

Sad thing was that so many of these things were dusty. I realized that ds was hanging onto things, and sorting in his own way (he’s always been a line-up, sort into piles kind of kid) and I needed to complete this before he arrived home from school and saw the travesty I was making of his ‘organization.’ He did yell when he initially saw the playroom, but more out of confusion. He’s very routine-oriented, likes things in the same place, same way, every time. Then he went through the tons of donateable toys and pulled out five things in a heartbeat. Five things he just had to have. And two of them? Dusty as could be. So what did we do? Go through the ‘playhouse,’ a space under the stairs, off the garage, clean it out (got rid of a TON of stuff there, too) and put the five things under there.

Anyway….a couple of hours later and ds has moved on. He’s excited about the idea of a new room, and insisting on his opportunity for privacy. He’s walked past the monster pile in the garage, and now that those five things are put aside, he’s only pulled one thing out…a blow up dragon. It’s right next to toys he’s played with for years, but he wants the dragon.

Things change. Kids grow. (Wahhhhhh.) The time for re-organization comes, but none of it really hits you until your special needs child, the one you’ve hugged and cuddled every opportunity you can, the one you tear up when he has a rough day and laugh hysterically when the word ‘oops’ makes him giggle..none of it really hits you until that sweet little chubby-cheeked (covered in rash) child says “Mom, I’m growing up now.”

Tomorrow I’m going on a field trip with my son’s school. I know a lot of us moms do these things because we should, but I’m really looking forward to this. Ds has had a couple of bad shakes when it comes to field trips, one being the time that his teacher told him they don’t use the restroom during the CHILDREN’S play, so he wet himself, and by the time I was notified, he was literally wet waist to toe. And embarrassed. An awful thing to do to a child, particularly without any real sympathy, and it’s stuck in his head ever since. Can’t say as I blame him. Child or not, it’s pretty embarrassing to have half of your body soaked and the smell leaves no room for error in knowing what you’re soaked with. Why it’s okay for that to happen to a child is beyond me, but I won’t go there. That wouldn’t happen this year, with or without me along.

So, tomorrow at 9am, I board the bus with my son’s class and two others. He’s so happy to have me along, although I have been instructed to sit in another seat. You know, Mom, so I can, you know, sit with my, you know, friends. Okay, I know.

This field trip is to a nature place I’ve never been. And it’s only about a 20 minute drive or so. Perfect on both counts. And I can be with ds in case he has any flashbacks or other ‘out of my comfort zone’ weirdness. I’ll update on Friday, but I think it’ll be fun. I enjoy hanging out with his classmates and helping, so it’s going to be a good day away from work.

On a not-really-related note, his hair twirling tic/stim is at an all time high. We’re talking both hands totally engaged in twirling up sections of hair onto themselves until the knot is inpenetrable by anything other than scissors. Ds, though, just pulls them out when he can’t extricate them otherwise, leaving little hairballs all over my house. It’s a really good thing I am a neat freak. A “cleany.” A spotless house person. Anal.

What to do with the hair twirling? We’re working on re-directing and giving him things to do, but he’s even stopping those activities to double-fist and twirl. The scary part, worse than it interfering with normal daily life, is that he’s pulling out so much, it’s now becoming visible that he’s missing some layers of hair. And he’s got beautiful hair down past his shoulders. (Cutting it’s not an option — when it was short, he’d just pull it out by the root easier. And his eyelashes/eyebrows. Eww.)

A praise is that drop-off this morning went good. He was quiet, but happy. I noticed his jeans were a bit too short, so I’m making a run tonight for some more, just to not give him one more reason to stand out. I didn’t realize he’d grown so much in the last few weeks. (And gained 3 pounds!) I did get a call that he’d gone to the nurse’s office with a tummy-ache, but he didn’t have it when he left, and when I ran into a friend earlier who saw him at school, ds was observed doing fine, so something must have made him anxious enough to want to leave school. I also think he can’t quite communicate his physical feelings sometimes. A conversation a couple of weeks ago in the car, on the way to Disneyland, went as follows:

“Mom, I feel carsick. Are we almost there?”

“Sorry, but we’ve got about another 20-30 minutes. Traffic. And you’re not carsick, you’re fine.”

“No, Mom <insert duh tone here> I really am carsick.”

“What’s carsick? How exactly do you feel?”

“I don’t know, I just know I’m carsick.”

Okay then.

Okay, so he doesn’t really say that to me in those words exactly, but I know he’s thinking it.

I’ve explained Crap Week in a prior post, probably a couple of times (crap is pervasive and insidious) and thankfully, I think it’s improved. In all things but ds. We’re considering a medication increase — not something I would just randomly share with people, but his behavior, with aggression, temper tantrums, self-injuries, lashing out at others, refusing to listen, being outright defiant, it’s just over the top. He’s only on a ‘baby’ dose but he’s put on 8 pounds since he started the meds and I guess it’s time. Behavioral therapy helps, but I can’t have him marking himself like he’s been doing.

Every time I turn around, he’s telling me what to do, correcting what I do, and telling me what I’m doing wrong. And yelling. Yelling a lot. He wakes up in the morning and starts. It happens as he’s going to bed. Did I mention he yells?

Autism is a nasty monster. My son is a sweet boy. Mix the two — a sweet boy with some monster behaviors, and we’re working on our ‘what next?’ list. It’s a 24/7 battle for him to listen and do what he should. It makes for long days. I guess there’s a good thing in this: I am exhausted and sleep better. Always a silver lining, right? 😉

I’m not anti-voting, anti-politics, or God forbid someone really go out on a limb, anti-American. I am, however, anti-ruin-everything-with-politically-‘i-am-right-and-you-are-wrong-if-you’re-voting-different-than-me’ speech. I understand politics are important, but does that mean they need to be pervasive? Do they need to be not only on message boards, news shows, blogs and email lists, but in a discussion about my son’s health, my checkout at the grocery store, or the conversation with the bug guy about what type of spray to use on persistent ants?

I voted this morning. Bright and early. Dh and I spent quite a while going over the propositions and candidates, and then I did it again with my older kids. Yawn. I have my political leanings, most definitely, but they aren’t my life. Sure, the outcome of this election will affect my life, and probably in a big way,  but not only do I not think it can get any worse than the last eight years, I also still have to deal with my son’s major meltdowns this past two weeks, a possible medication increase, and figure out what dinner I can make that he’ll actually eat. So, the election is important but it’s not everything.

Election garbage is everywhere. You can’t visit an autism list or a recipe list or a scrapbooking group without the “Tsk tsk, you should vote for xxx” posts. It’s as though people think that they are THE only educated person in the bunch, and THE only person who has received The Enlightenment that will enable them to make the perfect choice. To everyone with a political opinion: great, good for you. We all have one. It wouldn’t be a democracy if we all felt the same, or had to. Get a grip. Tolerance doesn’t apply just to being tolerant of other lifestyles, but being tolerant of those who disagree and letting them be. Keywords: let them be.

One thing that concerns me is the amount of people looking to vote a presidential team in because of their views on autism and/or vaccines. While I definitely want a candidate who does believe autism is a priority and vaccines need a re-do, but it’s not my major concern. My wallet is. The economy has tanked, and we’re all paying the price. If we don’t get a handle on that first, no one will be able to afford medical treatments, insurance, vaccines, or any of that anyway. It all starts with financial comfort or at least security of sorts, and everything else comes next. And that’s my thoughts — you won’t find me on any public place sharing my feelings, but since this is MY blog, I’ll take this one chance to say it all. If someone’s voting based on autism alone, they may be sorely disappointed. And if that’s not letting autism lead our lives, something everyone says is the kiss of death, what is?

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