Autism Watch: 2007

Posts Tagged ‘ocd

We’ve heard that news alert a few times the last few days.

<queue the Talking Heads> “Hold tight, we’re in for nasty weather.”

Scary on one hand, tiring on the other. I think I may have preferred my California earthquakes! I want to take it seriously…I do…but I must admit that I don’t run around shutting my windows and loading the tub with supplies. (I do however, keep the ‘panic room’ stocked in the event we should have to go in there during any disaster, so we’d just have to grab our cells and the dogs..and of course, at least one laptop in the event we can keep internet access. Yes, we’re geeks.)

On the other hand, BB is prepared. Very much so. I didn’t want to tell him about the alert on Monday of this week. He was happily playing and I didn’t <yet> see the need to worry him. The choice was taken away though by yet another EAS — emergency alert system — broadcast. I know they save lives, but they are so loud, they not only get your attention but they startle a sound-sensitive child and send him straight into packing mode.

I hear rumbling, moving, scraping..crashing..”Uhm, BB, what are you doing?”

“I’m packing, Mom!”

“Packing?”

“Yes, if the tornado really hits here, I need to be prepared. I want to be cautious. I have things that are very important to me so I want them accessible in case this tornado is real this time. Better to be prepared, Mom!”

Well, he told me! I let him go on with it, and by that time, I was shutting windows and putting the dogs out for a quick potty before those black clouds were entirely overhead. I peeked in on the panic room and saw what he had packed.

His plush Pokemon collection. (“Mom, it’s irreplaceable, you know!!”)

A change of clothes.

A waterproof jacket.

His favorite pillow and the blanket his oldest sister made him.

His DSi and case.

A pile of art supplies so he could draw pictures.

And my favorite of his piles? His entire Diary of a Wimpy Kid book set! It’s not like it’s fine literature, but it is funny and I credit it with getting BB to sit down and read a book FOR FUN and ask for more. For that, I will be forever grateful.

When we move, now I know I need to be sure those books are accessible and treated with the utmost respect they deserve. And if we ever do have to evacuate or hide in the panic room, you can bet they will go with us.

Gotta go…more rumbling. Might need to save the battery again 😉

Yesterday was BB’s six month dental exam and cleaning. I’m not sure who dreads them more — him or me? Hmmm, me. Yes, definitely me. I have to drive him down there, almost 1.5 hours in one direction, then all the way home in awful tourist and end of the work day traffic.

If you’ve been reading my blog for a while, you know dentist appointments and BB haven’t always gotten along. So what changed? Finding a new dentist. It may be work, it may take a long time, you may have to pay a little out-of-pocket by going out-of-network on your insurance plan, or you may have to drive a long time, but it’s worth it.

BB used to be afraid of the dentist. Hated it. Now? “When are we leaving, Mom?”

However, it’s still not always good. For some reason, he gets anxious about it and he’s kind of a boogar by the time we get there. You know, the kind of boogar where the other parents in the waiting room look up from their magazines and try to surreptitiously check out what the mouthy kid looks like or if the mom looks abashed. (If you looked, yes, I was abashed. Very much so.) The mouthy kid looked cute, comfy with his bandanna around his neck (should he need to become incognito, you know) and bored, playing with the stress ball in his hand.

It continues in the dentist’s chair. I answer questions about his dental history and habits while he’s being worked on, and he starts to squirm. More and more, in irritation at my responses. Finally, when he gets a clear chance to talk, “Mom, you don’t know what you’re talking about. You’re not in my mouth. Let me tell her.”

Sigh.

My sweet boy disappeared halfway through the drive to the dentist and only started to re-appear about two hours ago. It only got worse from there, though he did cooperate for the rest of the exam, the cleaning (minus the fluoride, thank you very much) and the x-rays. By the time we were 30 minutes from home, he wanted a new family, he didn’t like me and I was NOT his mom anymore.

Who knew?

It was a long night, made worse by the fact that I’d postponed an appointment to the podiatrist for my plantar fasciitis and my foot was killing me. The husband made dinner, and I sat with ice on my foot. Exhausted. Totally drained from his behavior and the rush-rush-rush of the entire day.

Today, he didn’t get better until I finally sat him down and told him he could not yell at me anymore. I sat there, with him unhappy at my presence, explaining why I wasn’t going to allow him to yell at me, or anyone else, anymore. And as for the constant complaining? Three per day. Period. No more. You complain a fourth time and the computer gets taken away. Same consequence if I have to remind you more than once not to yell at me.

I realize it’s an issue of control. He wants his room to look a certain way so when I move the water bottles or turn the nightlight off, I’m changing the way he wants it. When I tell him it’s school at 10am today instead of 10:30am, he doesn’t have control and it’s a change. I get it, really, but that doesn’t make it okay. It’s not an excuse to yell and be mean. So we talked about it, and beginning next week, after we’ve had a couple of uninterrupted days to reinforce the new rules, we’re starting a behavior program that I hope will address his anger and control issues.

I have hope. I just know it won’t be easy. He’s smart and he recognizes that he’s being mean…it’s just after the fact. Tonight, he stuck a note on the door saying he was sorry. Cute, but not enough. It did, however, open the door for him acknowledging that he needs to find some better ways to cope. He actually googled it, he said. I believe it, google is a big tool for him, and he uses it as a springboard for further research and study. If he’s interested, get out of the way, he will do it thoroughly.

Tomorrow we have a homeschool event…same place that “The Issue” happened a few weeks ago. I told him we’d ignore her and it wouldn’t change anything. He won’t let me sit next to him in the class, so maybe he’ll sit in back with me. Not sure. I want him to learn from it, but not be afraid or let her intimidate him. He doesn’t need to stop asking questions, he just needs to be mindful of how he does it. If he does it wrong, I will address it, as always. We’ll see how it goes. If nothing else, I’m super-proud of him that he’s not letting her possible attendance influence him going again. Way to go, BB.

 

“Summer camp SUCKS!”

We tried. He really tried, too…at least I think he did.

It was a regular summercamp, one without special needs teachers or programming. A) Special needs camps are costly. B) Special needs camps aren’t local. C) Special needs camps don’t have enough slots. It was 20 kids BB’s age, with activities that included crafts, sports, speakers, and games.

Day 1: We pick him up and he was moping out the door. This didn’t go right, that didn’t go right. He got ‘put out’ for this game, ‘put out’ for that game, and lost five minutes of swimming. Finally, after we let him vent, we learned he’d used a teacher’s squirt gun on another child, and was repeatedly too strong when playing games. (And the squirt guns? They were allowed, a planned activity, but the kids were supposed to use small guns and he used a big gun he found ‘just laying around.’) He didn’t want to return, but we made a deal: go all this week, and you don’t have to go any further.

Day 2: More of day 1, just maybe worse, despite me having spoken with the lead teacher that they might want to make a few minor accommodations. Still didn’t want to return, but was glad he wasn’t having to go next week. (And we’d already planned on only one week, we didn’t have unrealistic expectations.)

Day 3: More of day 1 and day 2, but he did run in that evening with a smile on his face as he showed me the flashcards the local police department gave them when they brought all their canine dogs for the kids to learn about and pet. BB loved the dogs. Then, he showed me his pom-pom animal made during craft. Unsurprisingly, other kids were making dogs, cats and monkeys, and mine made a zombie.

Day 4: Never happened. Days 1, 2 and 3 were cumulatively making his behaviors worse each night, and Wednesday night (aka Day 3) was unbearable. Bad tantrums with things thrown around and knocked off as he walked by. Screaming, yelling, the whole thing.

All in all, he says he’s not anti-camp. He says likes the idea of camp, just not this camp. Part of it was caused by his inability to get along in that type of social environment, but it was worsened because a little boy from school attended camp, and was the same whining tattler he was all year long. While they didn’t seem to make many accommodations for my little guy, even with the special needs I mentioned (I never mentioned the “A” word), they didn’t seem to really do much to stop this aforementioned little guy from his behavior; my son would get a time out, and this boy is rewarded by the kid(s) he whines about getting the time out. What does that teach the little boy? No wonder he’s still whining and tattling so much. For him, it works.

After another mother of a tantrum this evening (we just came home from three days at an RV park with friends), he is quietly (well, sort of) sitting at our table eating a Klondike bar. He ate a good meal of his favorite chicken/ham/cheese nuggets from Fresh & Easy (no additives, preservatives, or extra ingredients) and seems to be calmer. Let’s hope it stays that way, tomorrow’s going to be a busy Monday, and I have no car. (Maintenance time.) I think big brother’s planning on taking him out for a little while, perfect timing.

Tomorrow’s Barnacle Boy’s MRI appointment. We’ve done the social story, we’ve talked about how he’ll be at school late, and we’ve burned the CD for him to listen to during. I think we’re set, except for the one thing I can’t plan for or prevent: a meltdown.

The last couple of weeks, bb’s been having a lot of ‘short fuse’ moments. Out of nowhere, he blows up, usually over pretty small things. No clue when it’s going to happen, it just does. In addition to the verbal assault, his weapon of choice is a swift sharp kick to the shin. Ouch.

I have no idea what’s causing it. Meds not strong enough since he’s had a weight gain? Aggressive phase? Not feeling well?

Right now, I’m leaning towards not feeling well, though we have no real idea as to why he doesn’t feel well. He’s getting the headaches still, but they’re not 24/7. Residual feeling from headaches?

I picked him up early from school (again) yesterday. Fever of 101.7, though my thermometer here at home showed 98.7.  Looks like I may need to consider a new thermometer while we’re at it. He went to the nurse a few times again today, no fever but not feeling well. He’s going to take a pain reliever and see if he can make it the rest of the day. The message we’re trying to send is that coming home from school is only for when you really don’t feel good. None of us think he’s faking, at this point; you can see his eyes seem not quite right, and we can tell he’s not feeling well when he says he has a headache, but he also is not the best at communicating his physical feelings.

So what now? We’ve tried to get him to explain his feelings to us, but we get a lot of “I just want to be left alone.” We can’t read his mind, and that apparently irks him. (It irks me, too, but I can’t let him know.) He says he feels his friends are ignoring him. He says that we don’t let him do the things he wants to do. He says a lot of things, but where are we, really?

I’ll be glad when tomorrow’s MRI is over. The doctor can then read the results of everything (bloodwork, too) and see if there’s any physical reason. Then we’re looking at how to treat the headaches/migraines.

Meanwhile, I wore my Green Our Vaccines t-shirt yesterday. What better opportunity than St. Patrick’s day, for a non-green/non-Irish person? I’m still reading, with interest, the back-and-forth between everyone on vaccines, and I still believe that we need to re-do our vaccine schedule along with removing the garbage in them. Did you know they pulled mercury from dog vaccines because it’s a neurotoxin? Apparently dogs are more important than kids, pregnant people, and the elderly who are supposed to get the flu shot. Who knew.

I’ll update after the MRI. I’m coming back to work right after, so it won’t be an immediate update…I’ve been so bad at updating anything lately, this is nothing different. We are going camping this weekend, and bb’s really looking forward to it. Being outdoors seems to really help him, though there’s always arguments because he feels other kids leave him out. What’s new.

When I started this blog, I had intentions of covering all aspects of autism, but focusing mainly on sharing news as well as day-to-day things that occur. Lately though, with all the news happening, I’ve gotten caught up. I’ve posted on so much of the hype that I’ve gotten away from my original plan. So, I do promise to get back on task to a more rounded blog about autism…but I do want to talk about the new “Just let him be” campaign that’s supposedly growing in numbers, those who want us to just ‘accept’ our child the way he is, and stop all the treatments. (For more info, see ABCNews.com for this: Autistic and Proud)

What??

That was my first thought — stop all treatments? Stop looking for a cure and accept them for who they are?

I thought about this further, and couldn’t get past the thought that anyone who thinks we haven’t accepted who are children are really doesn’t know what they’re talking about. I think everyone other than those dealing with new diagnoses, those who haven’t had a chance to grasp it all yet, accepts their children. I accept my child’s autism. I accept his differences. I accept his tics, his stims, his rituals, his needs…but that doesn’t mean I’ve given up on thoughts of happiness and functioning as he wants to within society, and I don’t see him being able to do that if he’s on the floor in a tantrum, biting himself, wetting/messing himself, or not understanding a change in routine. For non-verbal kids, I don’t think their parents should have to just ‘leave him be’ when it comes to not ever hearing their child speak. I don’t know, my child’s verbal, but from parents I’ve met, they’d give their right and left arms to hear their child say “I love you” or “I’m happy, Mom.” Who can blame them?

So moving on past ‘acceptance,’ what about finding a cure. Why wouldn’t we want to stop another generation from watching their child bang their head on the floor, line up their toys for hours, or flap their hands so much they can’t pay attention to anything else. Sure, I love and accept my child for his uniqueness, but does that mean that I should be okay with autism being out there, and I shouldn’t want other children to not have to go through this? It’s okay for some people, but why make that decision for others?

Heck yes I want a cure. I don’t believe we’re going to find it in genetics though — maybe partially, because these kids are genetically predisposed to autism, but we need to focus on why these children develop normally, even if they have a few oddities, then suddenly don’t. There’s something in our environment causing this, and the research needs to go there.

I accept my son for who he is. The differences that autism has ’caused’ him in make him unique. I often envy his outlook on life, and I don’t necessarily want to change it. I really wish I didn’t care what others think and would just dance in the aisle if I felt moved. I wish I could be comfy in flame-patterned lounge pants and a purple Pokemon t-shirt if I wanted to…in public. My son can. My son is a very unique individual, and I’m so very proud of him.  I also know that until the world accepts his differences, he could be in for a hard time as he gets in higher grades in school. But that’s not his problem, that’s society’s. Autism’s often teased, harassed, bullied and ignored, where other disabilities are accommodated. Still though, if I can help him feel more happy, more safe, more comfortable, then I’m going to do that. If that means biomedical treatment to help heal a funky rash, to stop a stim that leaves him with clown mouth, to help him sit down long enough to eat, to eat more than 7 items, to help him be, ahem, regular and not have a hurting tummy, then I’ll do that. In my opinion, to allow your child to suffer just so we can be prideful is wrong.

My child will be old enough to make his own decisions eventually. Until then, I’m going to do any and everything I can to make him healthy and happy. If autism takes away from that, I’ll be first in line to fix it as he deserves nothing less than healthiness and happiness. I can do that while still being proud of the unique little guy that he is.

Next month, dh and I are taking all four kids on a cross-country vacation. This means we have to fly. We’d considered taking the RV, but that would take so long to drive, we’d have little time upon arrival to do anything. And with the price of gas, flying is cheaper. (How very sad is that.) I’ve already made my lists of things to buy, to do, to research..and something about autism is on every one of them. Are we crazy for trying this trip?

A close friend of mine is getting married, and we are honored to be invited. With flights costing what they do, and with arrangements as difficult to make as they are, we’ve decided to combine the wedding with visiting my husband’s sisters, their families, and his mom. No need to cue the dum-dum-dum music, these are the cool in-laws. They are actually brave enough, in fact, to offer to let us stay with them the entire two weeks, though we’re staying in VA a few nights for the wedding and to visit Colonial Williamsburg and other historical places, along with D.C. Setting up the trip has been a lot of tedium, but it’s coming together pretty nicely. And it’s even paid for, what more can I ask for?

On my first list, I had to research flying restrictions. I have to be sure my daughter’s Diastat injections are not a hassle at boarding, and it turns out, with the proper documentation, they’re not. Check. Below that was getting all the medications renewed. Check. Talk to the airlines about my son’s dislike for lines and meltdown tendencies when bumped and rushed. Check. Thankfully, the airline was absolutely wonderful (so far) about accommodations — front of the line boarding so there’s no bumping and shoving, and notification to the flight attendant about my son’s issues. (I’m sure when it comes time to board and we’re taken in early, it’ll get us some nasty looks and mutters, but I’d rather that than ds having a meltdown and having to deal with worst nasty looks and outright comments while 30,000 feet over Nevada.)

Another list was Things to Pack to Occupy Kids. Mainly, it’s to occupy ds, though my 13 yod will appreciate the thought. Gameboy, DS, chargers, game case, DVD player, movies, CD player with CDs, crayons, coloring/puzzle books, paper…all in one backpack, also including his medications that I can’t risk going in checked baggage in case something’s lost.

And yet another list was clothing — will ds wear jeans shorts, or do I actually have to go buy him 7 pairs of ‘softs,’ which are basically pants or shorts made out of sweat or exercise material, with little seams and no pockets to rub. Will he be okay without his favorite blanket, and will he understand only one stuffed animal can actually fit? (And will the airline insist on counting that stuffed animal as a carry-on, aside from his backpack?)

So many things to consider when traveling with autism. It’s not only in your head, your thoughts, your mind, but it’s in your suitcase. It’s its own entity of massive proportion. Don’t get me wrong — any/all vacations take advanced preparation, time and money, but does everyone have to worry about their child throwing a tantrum around incompassionate people who may request your child is quiet, or worse yet, an airplane that wants to kick your child off? Am I worrying for nothing? I certainly hope so, but more and more it seems I’m reading articles about special education teachers/aides filing assault charges when a child kicks them or throws something, principals expelling special needs children for behaviors the child can’t control, or the general public just refusing to be around a child that says anything more than “achoo,” even though the most loudest people out there are talking on their cellphones about their sex life, or lack thereof.

Despite it all, I’m really looking forward to this trip. Two weeks of no work, time with just the kids and dh, and visiting with close family, something we don’t have out here. Unconditional closeness, with no judgments or trying to tell us how to raise our kids or what we’re doing wrong, or discluding us due to our son or our parenting differences. Sounds heavenly. Can I leave tomorrow??

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.


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