Autism Watch: 2007

Posts Tagged ‘ADHD

I was off work today — freebie day from upper management, yayyy! — and decided it was a good day for BB and I to have a lunch date. We’d considered one of a few local venues but with it being rainy, any tourists in town will be inside, crowding those venues. Not a good idea, so we opted for food. I wanted to expand BB’s food interests so I chose a local Asian restaurant, one that serves food from four different countries. Score!

BB chose two different kinds of sushi rolls (both spicy) and was looking forward to trying them with chopsticks. Just as we were served our soup/salad, a trio came in to sit in the booth behind us. Like many people locally, they were very loud. We have yet to figure out why so many people here are loud. It’s almost painful at times, and you find yourself stepping away, appearing rude, while they have no clue they’re talking much louder than they need to be. This trio was giggling at a glass-breaking pitch, and I watched BB begin to shrivel on his bench. Hands tightened up into little balls. Neck shrunk onto his shoulders, veins standing out.

I tried to distract. I joked about the silly names on the menu (as BB told me it was impolite to laugh at others’ food names) and grabbed any item on the table to try to redirect his attention.

No dice.

He wanted me to ask the management for help, so I tried to explain to him that it’s just not done that way, and that people don’t necessarily realize they’re loud. We had quite a conversation about social skills in public places, how management could handle it, how we’d handle it if we were management, and so forth.That worked for a few minutes. Finally, he’d had enough. When it got to the point where he was going to blow if we didn’t leave, we moved to a different booth. We picked up all our stuff and went to the next one over, the furthest available booth.

For about 30 seconds, blessed silence. Ahhhh. Problem was, it wasn’t that we’d moved far enough to not hear them or that they’d seen us and lowered their voices. Instead, they gestured and whispered about how we moved. Then bam-o, they began to talk normally again. Not a blip in their decibel level. The waitress came over and asked us what happened, and we explained. She was nice, acknowledged the sound, but that was it.

Thankfully, food came soon after, so I began to show him how to use chopsticks, what each of the items on his plate was and what to do with it. Yum!

In the end, it was disrupted somewhat but still a good lunch date. BB learned some new things and tried some new things. Success!

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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 😉

Get ready for a book giveaway! Check back over the next couple of days for details on how you can win your own copy of “The Autism Revolution,” by Martha Herbert, courtesy of Harvard Health Publications! (I’m giving away two copies!!)

(I’m away at the moment but will be getting this up on my blog and my Twitter as soon as I’m back fully — and safely, major storms going on right now — on my laptop.)

Look for me on Twitter at Autismwatch2007 and come back to enter in the giveaway!

Back when BB was newly diagnosed, our social lives took a major hit. At the time, we didn’t care — we were too worried, too overwhelmed, overextended and exhausted. It got better as years went by, with us having a smaller, more focused group of friends and a new idea of what was ‘fun.’ Our priorities shifted and we adapted to the new way of life.

Now that BB is older, we can leave him with an older sibling sometimes. We don’t do it often, but it’s nice to know that there’s the option if something’s a big enough of an occasion, so we’ve got the ‘time out as a couple’ problem covered.

The other problem though, perhaps the bigger issue, is getting the day-to-day, run of the mill, routine errands and outings covered.

Today, BB had a homeschool event. Since we live in a small town, we take advantage of being ‘out in the big city’ to get things done. I had a list in my purse of things I needed to do: another shot at the podiatrist office, Petsmart shopping, a certain candy mold at Michael’s, prescriptions at the drugstore, book dropoff and pick-up at the library, and the gas station. I dreaded the list, so I could totally get that BB would, too, but what choice is there?

As we drove home, halfway through the list (as a few things were here in town), I was thankful I’d been able to accomplish as much as I had on top of the science class, but worrying if I’d be able to finish the rest. They were non-negotiable: books were due, car needed gas, and the prescriptions had been sitting at the pharmacy for days. Each one should have been just a few minutes, but a few minutes here, a few there, and before you know it, you have a kid so anxious and overwrought, you wished you’d scrapped the very idea of taking him along.

Luckily…or maybe because I reminded him that I didn’t push him to stop and have lunch with me so he needed to do this for me and so I wouldn’t have to go back out later…he did fine. Now, fine is relative. It’s “fine” if you think him leaving my car window down and locking it (?) while I was waiting for the pharmacy to fix one of the prescriptions to find me in the store is “fine.” It’s “fine” if you think him yelling at me to hurry while putting gas in the beast is “fine,” and it’s “fine” if I don’t mind him telling me “You know, you could have just dropped your books in the slot and not gone inside.” (Yes, that would have partially worked, but what about the book I had on order? Another autism book, though he didn’t know that part.)

Let’s just say it was successful in that I got my errands done and he didn’t have a meltdown. It was neither fun nor relaxing, and by the time I walked in the door…dogs jumping at me and mail falling out of my hands…I was beat. I piled the purchases, the bags, the purse, the receipts all over the counter as I calmed the Yorkie. Got BB settled in his room. Grabbed a beer…no, not really, but I may have wanted to. Maybe. All the while, I’m feeling slightly resentful that I didn’t get to pick up a decent lunch and that I again had to head home, hermit-style, because BB wouldn’t acquiesce to head into the deli for a sandwich.

I contemplated the resentment as I was balancing the checkbook from the day’s expenses. Maybe not the best time to have a serious thought discussion going on, but I realized that though I’d saved $20 and not endured a miserable lunch out in public, worrying that he wasn’t behaving, I was still having to craft the time around him a lot. Some things are vastly better, and this area is, too, but there’s still a ways to go.

Add ‘Handles social outings with ease’ to my list. Or at least with a semblance of tolerance? How do you do it? How do you meld your acknowledgement that pushing your child too far isn’t fair to him with your need to get out of the house?

 

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.

 

Seems like you can’t turn on the news anymore without seeing something about bullying, and more and more, it’s teenagers who not only bully, but advertise it on YouTube, Facebook or other social mediums. It’s bad enough they’re doing it, but they’re proud of it and want others to see it.

The Dr. Phil show today was about four teen girls who beat up a 12-year-old girl (who already had a shunt in her brain, which apparently at least two of the girls were aware of) and video’d it, then put on YouTube. I won’t get into any further details as I don’t want to get anything wrong (you can find it at Dr. Phil’s website) but I will say it was very disturbing to watch, and not just the video but the reactions/responses of others towards what the girls all did.

As a country, we’re aware — the Bully Project movie is playing and many schools hold anti-bullying campaigns. Commercials stress that you need to stop bullying people for their race, their lifestyle, their orientation, but I would love to see them include the disabled. I go back and forth about whether or not we should even focus on the “who” of bullying — no one should be bullied, but with the increase of suicides related to internet bullying, I am aware that we have a long way to go so I’m on the fence. However, bullying is bullying, and bullying is wrong, no matter who the recipient.

We were coming home from the beach yesterday and BB mentioned, out of the blue, how he felt he’d been bullied by a past teacher. It was an interesting comment and his choice of words inspired a long conversation about what bullying was and whether or not he had actually experienced it. We didn’t feel the situation was bullying, but given that bullying comes in all shapes and forms, is bullying in the eye of the receiver? If he felt bullied, was he?

In his case, his IEP was being ignored and some teachers were trying to get him to just stop the irritating behavior so as to get on with the rest of the class and day rather than trying to help him learn better behavior. One example: finding out why he was tapping his foot didn’t matter; instead, he was told to stop tapping and when it didn’t work, he was moved to a corner desk. Alone and singled out, still with the need to tap his foot as the sensory issue wasn’t addressed, and it turned into anxiety and upset. Another: a classmate was allowed to pick on him for his facial tic because “that’s what kids do.”

Was that bullying? Or just lack of education in how to handle it?

We’ve decided that it is unlikely BB will return to a regular public school, in the format that lives now. Instead, we’re going to be looking for something more form-fitting, perhaps a techology-geared magnet school or program. It’s not necessarily because of bullying, though it sure does play into the decision somewhat. BB will need to learn to deal with the bad behaviors in the world. He’ll need to learn to control his reaction and respond appropriately, and/or walk away. We wouldn’t be doing him right if we just pulled him away from it all and didn’t prepare him regardless; he’s going to be out in the world, be it now or next year or in seven years when he graduates, and he’ll run into other bad behaviors displayed by fellow college students or co-workers, or just people waiting in line with him at the bank.

Until he gets old enough to be more independent, we will continue to work with him. Last week, after the homeschool event situation, we gave him some tools on how to handle it if it recurs. “Please don’t touch me.” Talk to a teacher. Seek a safe adult. We want him to realize that even if someone else is being mean, it’s no excuse for him to respond in kind. He can’t control their behaviors, but he can control his own. He is also worthy of respect and doesn’t need to put up with bullying or meanness from anyone. He may be just a child, but children should be respected, too. Bullying sends the message that you’re not being respected, and no one needs to tolerate that.Parents need to model the behaviors they want their children to emulate, so we as adults need to think about it as we’re out in public. Do we honk our horns at slow cars? Do we berate an employee providing customer service to us when things don’t go as we want? Do we fight fair? Do we make fun of people? And to add a new level to it all — do we go to Facebook or Twitter to tell the world about all of our problems? Do we share so much online that our kids think it’s normal for them to as well? Do we bash our husband, our employer or whine about every little twinge or ache? It may not seem to relate but when kids see us use social media to seek attention or antagonize, it rubs off. How many times have our kids said “Well, Mary did it too…” Do we want them to say “But Mom did it too…”

I know it’s not as cut and dried as that, but you have to start somewhere. I don’t want any of my kids to ever be the victim of online harassment or attacks, but prevention is a multi-pronged approach, and even then, not a guarantee of success. It starts with our behaviors, and continues with us watching theirs, addressing things as they come up and listening to their concerns. BB showed me that we may not see something as bullying, but if they perceive it as bullying, it needs to be addressed. Maybe that means just us explaining to them that it’s not bullying, or maybe it’s a red flag that yes, we need to step in.

It’s sad that bullying is such a problem anymore, but one person at a time, we can decrease it. Bullying the disabled — or anyone — happens every single day. We worry about 1-in-88 having autism — and we should worry about it — but like autism, we don’t know the cause or cure for bullying yet and until we do, we need to tackle it before the numbers are even higher.

When BB was diagnosed, we were warned to be careful and keep an eye on him every single second. Ha, like we didn’t know that already. Kids with autism are frequently runners, escape artists, little people who can get away from you in the blink of an eye. They also often display an abnormally low level of – or no — fear. We parents could be running after them, yelling about the dangers they are closing in on, and they don’t bat an eye. We, however, have a permanent twitch in ours.

In keeping with that fear, water doesn’t scare them. A large, heartbreaking number of children with autism drown each year. I heard that and immediately signed BB up for swimming lessons. We didn’t have a pool, just a spa, but my best friend does. We wanted him to be able to swim with our friends and know what to do if he got too close to water anywhere else. Little did I know, this was an area where BB was anomaly. Read on…

We got to the pool early that first day. I don’t know if he had any clue what he was in for, other than me having told him that I’d signed him up for a Mommy & Me swim class. The reaction to that was pretty typical for the time — no real reaction other than to share his unhappiness with having to leave the house. Getting him in the pool, backpack in hand, was no easy feat. He was still having, ahem, potty issues so I had to be sure he was in the appropriate under-attire, and he was weird about shoes, seams and going anywhere without a shirt on. (That didn’t stop him from stripping if he was having a public meltdown, but that wasn’t the only thing during those years that didn’t make sense.) He made sure that I knew, along with the neighborhood, that he was not into this class. That should have been my warning.

He was curious by the time we arrived at the rec center five minutes later. He was cooperative, if hesitant, about going to check out this pool. Then he saw it. WHAM-O. Interest kicked in. “Don’t run by the pool!” So what do I do? Run by the pool to catch him. Yes, thank you, I know the rules, you can stop staring now, he’s not deliberately ignoring me..

We settle our stuff down on the lounge chairs and wait for the class to start. I was counting minutes to have it start soon, as he seemed interested. Finally, the teacher calls us over. Five other moms climb into the pool with their smiley children…all younger than BB. (Bear in mind, we were within the required age-range.) Darn, I even know one of them. I begin to climb in and what? Huh? What’s that awful sound?

BB, screaming that he didn’t want to get into the pool.

Several minutes later, he’s in the pool. Splashing. Kicking. Unhappy. The teacher’s fine, and the only mom who seems impatient is, of course, the one I know. My neighbor. My next-door-neighbor, a woman who liked to talk. (I’ve since moved.) About people. I am trying to show BB how good the water feels, how it’s like his bath, how he can splash Mama in the face. Slowly, I win him over. The teacher continued onwards with her lesson, thankfully, taking the attention off of us..which was good given that the momentary break was brief as the teacher began having us interact with our child and the water with specific steps that we needed to mimic.

It didn’t take her long to realize that we weren’t going to ace the class and that she might just have to talk a little louder. The 30 minutes went v e r y slow and I was mentally exhausted. BB was physically AND mentally exhausted. Yet I was not to be deterred. We went back every week, sometimes with Dad in the pool with me. The teacher didn’t care, and a couple of other dads did it, since there was no rule on which parent was in the pool. Reinforcements. I’d like to say it got better, but it didn’t really. However, we ‘graduated.’

I signed him up the next year for a level up. The first step was to practice jumping in the water. Uhm, no. He would not do it and the teacher had to have him handed in to her, much to BB’s unhappiness. Once he was in the water, we were not allowed to interact, and the assistant helped BB in our place. It was during this time that we learned that different children aren’t always welcome in public events. We already knew that a melting-down child wasn’t acceptable in Target (and a list of other places) and that people would literally step over a runner who lay on the floor humming, but this was the first class where I couldn’t be with him, aside from his special day class. I’ll never forget the mom who sat down in the parents’ area and said “Did you see that kid? He won’t even jump in! What were his parents thinking putting him in this class?”

She was the first person I ever took one of what we jokingly refer to as The Card. I carry cards in my purse to educate others on autism. I’ve had to use a few throughout the years, gentle ones that explain what autism is and that he’s not trying to be a pain. But this one? It was a little abrupt and stated, in short, that we are trying our best so please don’t interfere…and by the way, your comments are kinda rude.

You should see what she said a few weeks later when his licking phase kicked in.

Fast-forward to now, where he’s 11 and loves to swim. He loves when we go to the beach. You’ll find him in our pool daily when it’s warm enough, and when it’s not, he’s wishing it was. No fear whatsoever, and he’s quite the swimmer. The water calms him. The activity tires him out. For a kid that doesn’t sleep without Melatonin, this is a big deal.

Today he’s been waiting for his big sister to come home. Such patience! He’s had his trunks on for a while and his toys at the ready. The splash when he jumps in always makes me smile. I wish I could look forward to thinks with such excitement and anticipation. He’s come a long way, baby.


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