Autism Watch: 2007

Archive for April 2008

This morning was a good one — planned out, scheduled well, in his routine, and he did everything without argument. Then we get to school.

Two of his best friends run up to the meet him at the gate. Not sure who was more excited about that, him or me. I breathe a huge sigh of relief and am darn near tear-y when I see this happen. They play, they wrestle, they run…and he laughs. Ahhhh, I love that sound.

Bell rings. Line up time. A little girl is a bit pushy with him on something, and he calls her a brat. Red flag goes up. I wait until the line goes into the school, and things look okay. I won’t be here when he gets home today, so I remind him and get a hug and kiss. (I know, I know, in the classroom is a no-no…”Mom, the kids will see!”) He walks back to his desk, and then it starts. “My water bottle is gone! The darn cunstodians threw it away AGAIN.” He proceeds to run out the door, I catch him, hold him, he sobs. His little body shakes because he’s so sad he doesn’t have a water bottle now. And bear in mind, it’s a generic Costco water bottle, nothing that I don’t have 50 more of in the fridge. The teacher comes out, coaxes him in and shows him that it is indeed there on the desk, just pushed over onto the girl’s side next to him. Phew. I see relief, I feel the tension go…but not completely. But I had to go, it’s the teacher’s territory and I don’t want to impede routine, and I think he’ll calm down better with me gone. That doesn’t make leaving him that way any easier though.

I’m often asked “I don’t know how you do it.” Admittedly, there are days I wonder how we stay sane, but every parent, every family, faces their own challenges. My response? “What else do you do but love your child and go on, one day at a time. And laugh.” Really, are there options? I think everyone can rise to the challenge if needed to, and honestly, while I’d love my son’s issues to be easier for him to deal with, I wouldn’t change him, just his ability to function in the world, happily.

So, on that note, I’m going to share what an average day in our home is like. I don’t want anyone falling asleep drooling on their keyboard before they’re able to find something more titillating online to read, so I’ll try to keep it short, yet I have to fill it in with candor to make it really understandable. Bear with me. 😉

A typical day begins with my alarm going off around 5:30am, as I start work at 6:00am online.  Ds wakes up somewhere around there, and frequently wants to climb in my bed, where he feels ‘safe.’ He sleeps another hour or so while I work, quietly tapping the keyboard so I don’t wake him, volume off. When he wakes up, I have to try and gauge his mood: angry? happy? blah? With ds, that’s about all you get. He’s a child of extremes, in all senses of the word. If he’s happy, it’ll be an easier morning, but then again, that can change in a heartbeat. Let’s take Tuesday, for example.

He wakes up at 6:15am, but this time won’t go back to sleep. I tell him he’s got an hour to play whatever game he wants to, and he chooses Insaniquarium Deluxe, which we bought a couple of months ago after he bugged incessantly. (He’s now so much of a professional with the game, he should help program it.) After the hour is up, I take him downstairs for his pancakes (the only thing he wants for breakfast every day, God help me if we’re out of them) and he realizes that his 13-year-old sister is still in the kitchen.  She’s about five minutes away from leaving, and in those five minutes, he went from yelling at her to hitting himself, me, and throwing anything within range. Telling him how irrational he was being wasn’t going to work when he was barely able to hear anything I say over his rage, both internally and externally. I talked him down until she left, but the day was doomed. He’d hit me in the face, though no bruises/cuts, just a solid ouch. The other older sibs weren’t even welcome near him, which is unusual as he normally will allow his 19-year-old sister to help, though not when he’s completely over the edge..and I guess he was this time.

Fast forward a bit, he’s eating his pancakes, which were two medium-sized, on the flat side, not too brown, and cut in perfect criss-cross patterns with the just-so amount of syrup. (See-rup, not ser-rup.) Oh, and his ‘coffee.’ (Chocolate almond milk, of the Pacific Diamond brand.) In the right cup with the blue lid so he can sip like Mom does out of her coffee to-go mug. He’s still ranting about his sister, but it’s lessening. He eyes his outfit for the day, and announces that the jeans won’t cut it. Lately, only “softs” will do. “Softs” are sweat pants without any elastic at the bottom, lounge-pants, or running pants of the non-net/non-plastic/non-noisy variety. Finding more in April, in California, so he doesn’t have to re-wear the same 3-4 pairs, is getting difficult, and the new pairs I bought at Target last week (on clearance, only place I could find them) are all too big..and they don’t shrink no matter what you do.

On with the softs, jeans banished back to the drawer, and then he has to find out what I’ve packed in his lunch sack. “And Mom, the snack needs to go in my lunch bag now, I don’t eat it at snack much but I do want it at lunch.” Okay, sure, anything, let’s go brush your teeth. Teeth brushed, we head to his sister’s truck, the school limo, as she pulls up at the end of the driveway daily. He climbs in the back seat, seatbelts himself, then yells that she has to stop, he needs one more hug and kiss. Hugged and kissed several more times, he’s on his way. We’re already exhausted, yet when he gets to school, he realizes the snacks aren’t in the paper sack (Mom!!) and he has to fix it, and the sub doesn’t seem to have the patience with him making the change with her waiting on him to finish. (And I wonder to myself, as I call him by name, has she been warned? Does she know? Maybe his aide filled her in?)

School pick-up time in the afternoon arrives, and I head to the parking lot early so I can get a spot. Even early, and you sometimes have to fight with those ignoring traffic signs to take a prohibited shortcut, which can be infuriating. (Side note: California schools don’t typically have parking-lots. Ds does not like a long walk to the car.) I park, wait, and when he finally arrives at the gate, it’s minus a backpack. We trek back to get it, walk away, and realize that his headphones aren’t in there. He’s had a serious problem with “cunstodians” lately, convinced they are the reason his water bottle is gone daily, and now it’s segued into anything else that is missing. (Canadians, don’t be offended, but initially he was yelling “Those darn Canadians!” “Canadians?” “Yes, the people that clean the school.”) The substitute teacher (don’t get me started on how that alone can throw him for a loop) had already locked the door, so he had to run in another room to loop around. He comes back shortly, starting to sob. The darn cunstodians had apparently already beaten him to the headphones. The teacher of the looped room comes to us, and thankfully knew him from early mainstreaming days. She offers to help, and between her and the sub (still there, just the only room with a locked door so early) they found the headphones on the floor. Those darn cunstodians must have moved things around..they are fast, invisible people. (Can they come clean my house??)

We get home, but on the way, he has to vent on how mean the rest of the kids in the class are. Okay, Honey, you’ve said that three times now, we have to move onto a different topic. Grumble grumble Guitar Hero grumble grumble stupid something-or-other grumble. Back at home (thankfully, it’s a 3 minute drive in traffic) and I warn dh it’s been a rough day. I get the “hmmph, you are crazy, what’s the deal?” look that we wives all love. I sigh, breathe deeply, and continue into the house where it takes all two minutes before ds flips out that the cheat codes dd brought home from school aren’t something we want him using on Guitar Hero. Major flipout. Dh finally gets why I said rough day. (Ha. Take back the crazy look!) Cancellation of plans for errands we were running in preparation for our weekend at the Nascar races. After dh got him to stop throwing things and hurting himself, the pendulum swung to the sad, sobbing side and he began to wish he’d “never been borned, he’s too stupid to live, no one likes him.” It’s heartbreaking. It doesn’t matter how many years he’s been diagnosed, or what improvements he’s made (which are many), it still kills me to see him do that. There are times I want to just hug him and never let him go….many times. Frequently. But, we can’t hide in the closet. I grab him, and we rock for 15 minutes in the glider chair. He likes this chair even more since he’s learned that I rocked him in it as a newborn, nursed him in that chair, and watched tv with him on my lap as he grew. Finally, he’s quiet and wants to go play Guitar Hero, minus those pesky cheat codes.

However, “stinky” dd is still downstairs. (What time is it? Only 3:45pm? How can that be?) Minor anger. “Stinky” goes to do her homework, out of his line of sight (not by his request, it’s just where we’ve always got her doing her homework — close enough to get help, but far enough away from the TV and Wii to not be distracted) and he’s calm. We decide to go run our errand, hoping it only takes the hour we expect.

We’re back an hour and a half later, and ds is still playing Guitar Hero. Is the one homework item done? That would be a no…but both he and his 19-year-old sister are in career-mode and have each won a challenge. Good to know. Now turn off the Wii. We make dinner, ds eats his chicken nuggets (I don’t want a stupid burrito!) and moves on to play Nascar on the Gamecube upstairs. And then frisbee…in the house. But by now, he’s dressed in his green and white cat-in-the-hat hat, black gloves with bones painted on the outside to look like skeleton hands, a sword in his pirate belt, a black/red cape around his neck, and a pirate chain hanging from his arms. Oh, and the bandanna wrapped around his head, under the voluminous hat. (By the way, this is typical standard wear around the house.) I’m working on kitchen clean-up from the week’s worth of dairy-free pancakes I’ve just made for him, thinking about how I’ve got to make his dairy-free chocolate chip cookies in a couple of days. It’s nearing bath time when he decides he has to play out back. (We must have had ESP when we planned the backyard six years ago, as it’s entirely ds-proof, and he loves it out there.) He returns inside, hyper as ever, and takes his bath. Ahhhh, blessed warm water. He is definitely a “Calgon, take me away” child, as he lays in that tub until he’s prune-y if we’d let him. Into jammies, another round of Insaniquarium Deluxe while we get ready for bed, and our “ahhhh” moment? He comes and announces he’s tired and wants to cuddle while he falls asleep. In minutes, he’s softly snoring on the pillow between us, as cute as could be.

Someone who’s not the parent of an autistic child may say “wow, a lot of accommodations made for him. Why not teach him to deal with things? Why let him be in charge of routines?” but we see it differently. We have to pick our battles. If we can get him to eat, I’ll cut in any pattern he wants. I’ll buy stock in chicken sure beats him refusing to eat, and before you say “He’ll eat if he’s hungry enough,” you haven’t been around an autistic child very much. And that’s just one example of a real reason for accommodations. Battles are very real when your child is as aggressive and self-injurious as mine is. And mine is what many people would call “high-functioning.” (And whether we like that term or not, it’s out there, and it’s something many people who don’t have autistic kids will at least somehow understand.) Many autistic children aren’t violent or aggressive; many are. And it doesn’t matter what level of functioning they’re at, as every autistic child displays different tendencies. We’ve learned to pick and choose what’s most important. I’d prefer stopping him from pulling out his eyebrows, tearing out chunks of hair, or scraping skin off his face with his fingernails over making him go into the kitchen at the same time his sister’s there. There’s a time and a place for everything, and this morning was the time I chose to force him to sit with his sister at the table. It may sound like he gets away with a lot, but you have to work with what you’re given. You can’t have unreasonable expectations. If you work on even just one thing at a time, you can do it right, and you have to pick your priorities.

When we first started getting in-home behavioral help, I was new to autism. Big time new. We began with a list of his issues, both observed by the behaviorists, and explained by dh and I, and put them in order of priority. Not hurting himself is always at the top, followed by throwing things, yelling, and so on down the list. We have to make my child prepared to enter the world, but first our home has to be safe, and he has to have a place where he’s happy and comfortable. On days where he’s having meltdown after meltdown, we revert back to the list, and when we can, we’ll go from there and build upon it. But we, “autistic parents” for 3.5 years now, know when that is.

At the end of the day, you’re tired. But who isn’t.

It’s been a week since I wrote about my discouragement with promotion of Autism Awareness Month. I wish I could say I felt a ton better about it, but I am afraid that the momentum will slow as we get further into April.

I did find a few interesting things on autism to share:

What Do You Know About Autism?  (Seattle Post Intelligence) A quiz for those unaffected by autism, short but sweet.

Family of Autistic Boy Battle Over Service Animal  (The Pittsburgh Channel)

This is a school that ought to be ashamed of itself. ADA, anyone?  

Tulsa World: House committee rejects bill to provide health coverage for autistic children   Do you ever wonder about people? Why money is more important than caring for autism? Why isn’t this discrimination?

That’s it for now – my little one’s been raging since yesterday morning, and is upstairs sobbing hysterically now, in his bed, his ‘cave,’ his safe place. Not sure yet what’s got him so out of sorts but we’re working on figuring it out. Just getting him home from school took 15 minutes, while he found his backpack, then his headphones, and we avoided the crying at school at least. Now? Who knows, but we’ll see.

I was cruising around the net this morning for news of activities in honor of World Autism Day, and found an article that I was sure had to be an April Fool’s day prank. (In fact, the timing of it still makes me wonder, even though it’s purported to be serious.) If you haven’t yet visited AAP’s site, and proclamation that they have met with DAN! representatives to understand Defeat Autism Now treatments and interventions better, it may just be the best thing you read any time soon. Oh, and they also recognize World Autism Day.

CNN has special broadcasting all day today. I’m watching now and unless Bernanke’s economics speech has something to do with autism, I guess it’s not a marathon of autism segments, but I’m not changing the channel. (And I actually learned something that I probably wouldn’t have cared about much before, until I try to sell my home or fill up my gas tank.) On CNN’s home page, you’ll find a link to Autism: Unraveling the Mystery, quite an inclusive list of videos and news articles about autism and those it effects. It showcases adults with autism, parents of autistic children, doctors, vaccine controversy, Jenny McCarthy..and the list goes on. Even if you don’t have time to read/watch it all today, share the link. Put it in your sig line. It could be the easiest autism advocacy/awareness effort you’ll do.

You can buy autism awareness bracelets at numerous sites in my blog list — TACA, National Autism Association, Generation Rescue, and so forth. Maybe today is the day I should wear my “Autism: It’s no mystery, it’s mercury” t-shirt? (Would that tick off the doctor I have to see this morning to refill my migraine medications? Do I dare risk it? A migraine is pretty painful and puts me out of commission for days……) If nothing else, slap an autism awareness ribbon on your car and be prepared to tell the approaching strangers (who will come, I promise) where you bought it. And oops, leave some of your autism education cards in public places. There’s not a better day to deluge the world that autism is here, it’s not going away, and we all need help.

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