A Day at the Beach

This sounded so much like GL, I just had to share: A Lazy Afternoon Exfoliating at the Autism Day Spa.
And if the picture doesn't show up, (it didn't for me) look here.

Stupid Google, Stupid www.blogger.com

...lets me leave comments on other people's blogs, but won't let me comment on my own blog.

This goes under Which church would you choose?

Would we be more involved if we moved closer? Most families are so busy with every available lesson, sport, school, neighborhood, and regional activity, not to mention some parents commuting over an hour to work, that even those who live close find it hard to get together. We choose to opt out of these things, but so far, we're the only ones. And it's a small church. How many official church functions are offered besides Sunday services? About one a month. And with his sensory and social difficulties, some events just aren't possible for GL.

Hooray! GL learned to use scissors today!

Goldilocks has many struggles with fine motor skills. We've been focusing on the most essential, but trying everything, and cheering and encouraging any success, however small. Scissors was one I'd just about given up on. He tends to hold the scissors backwards, with the blades pointing toward him, and even when we can get them turned around, he rotates his wrist so the blades are parallel to the surface he is trying to cut. Then the thing he wants to cut just slides between the blades, and he is once again convinced that the task is impossible: these scissor things just don't ever work! And since we're not doing a lot of kindergarten art projects, there are more urgent skills to work on.

He loves microwave popcorn. He can safely run the microwave (it has a popcorn button); he just needs to get the bag of popcorn out of its plastic outer wrapper first. Sometimes the end of the wrapper is two layers fused together, and relatively easy to separate. Sometimes there is a small notch to make it easier to tear open. Others are difficult or impossible to open without a knife or scissors. He was trying to open one of the latter packages this morning and asked for help (a good sign to begin with). I was about to do it for him, when I thought, "Let him try. What can it hurt? If it doesn't work, I can still open it for him."

So I handed him the scissors, and with verbal instructions and a little help with hand placement, he snipped a notch and tore open the package! Hooray! He may or may not be able to do this next week, tomorrow, or even later today, but at age 13, he successfully cut something with scissors for the first time!

School's race rule prompts mom to pull kids out

This is just sad:

JACKSON, Miss. – A policy intended to achieve racial equality at a north Mississippi school has long meant that only white kids can run for some class offices one year, black kids the next. But Brandy Springer, a mother of four mixed race children, was stunned when she moved to the area from Florida and learned her 12-year-old daughter couldn't run for class reporter because she wasn't the right race. (Link) 

Body of Las Vegas woman found in clutter at home

LAS VEGAS – A four-month search for a missing Las Vegas woman came to a ghastly end this week when her husband found her corpse in their home amid a labyrinth of squalor that had been impassable even to search dogs. (Link)

Wow. I think it's time to go clean the shed. And then maybe the basement.

Which church would you choose?

Michelle Van Loon asked a thought-provoking question on her blog, theparablelife: 


Q: Would you drive 45+ minutes to attend an ideal church service each week or would you become a part of a church community with whom you differed on some points of doctrine and practice right in your own backyard? 


After reading the article, I posted a comment. I've expanded it slightly here:


Funny you should mention it, but we drive 45 minutes each way to attend an Anglican church. While I've acquired a new appreciation for sacramentalism and the combination of deeply moving truth and quiet sanity in the Book of Common Prayer, while we feel a deep spiritual kinship with certain people, while we believe its leaders are doing some good things that others leave undone, while we've heard some great sermons there, and while we've been richly blessed by some of the music,^* those aren't the most important things that drew us to this church, and they certainly aren't what keep us coming back week after week.

We keep coming back because our son is not only tolerated, but welcomed. Despite his challenges, they work with him so he can serve as an acolyte. When Children's Church wasn't working out for him, but he wasn't able to sit through the regular service, (He still isn't, most Sundays) several men in the church volunteered to take turns sitting with him during the service and taking him for a walk if he needed it, so we could have opportunities to worship. That's worked out remarkably well. I need to post about it soon.

So what's not to like? Well, as you mentioned, it is harder to form close connections with people you only see once a week. There are churches within walking distance of our house. Most of their members live in the neighborhood, and most of their children attend the local schools. Some of the adult members even work in  our small town, although many of them work in larger cities. Those are the people we see every day. But this is the first church that we've been in that expressed the sentiment, "We're all in this together. We need him as much as he needs us." rather than, "Hey, you! Straighten up your kid!"

Once you leave the immediate neighborhood, we've found it's not absolute distance but relative distance that determines how hard it is to be involved beyond Sunday morning. Whoever plans activities tends to base their plans on what works for people traveling the average distance to church. In some congregations, that's five minutes, in some, 20-30, in others, 45 or more. If you live the average distance or closer, you'll probably feel right in the thick of things, surrounded by friends. If you live farther away, it will take an extra effort, and one that no one notices, to be involved at all, and sometimes you will be left out. If you have a child with a disability, there will be some activities that are not worth the added effort, and some you just can't do. We have decided that in this case, the added effort for some activities is worth it. We've also made an effort to make personal contact outside church-sponsored events when we could.

^*(I'll never forget the offertory on the first Sunday of Advent one year: "The Man Comes Around." The hairs on my arm still stand up every time I think of it. On the other hand, I'm sorry, but 417 choruses of "I Could Sing of Your Love Forever" are at least 414 choruses too many.)

Treading Water

I feel like I've been treading water the last few weeks, and I'm only halfway through. I will only be home one weekend in August and one in September. Like Jonathan Bing, "home's the best place for all people like me." During the week, I'm trying to re-establish some semblance of routine and illusion of order. BB is driving me to distraction. He's not uncooperative, his mind's just not on his work. It's been a constant struggle, but it seems to be worse lately.

GL has had relatively few meltdowns, but they've been big ones. Yesterday, he wasn't calming down, even with medication. He went for nearly two hours. I almost took him to the hospital. That evening, I had to take him with me to Civil Air Patrol because our sitter was out of town. I couldn't miss that meeting because I was teaching a class. It was close enough to bedtime that I gave him his bedtime med as soon as we got there. He was relatively quiet, if a little goofy. I was still uneasy about bringing him, but I had no other option. Then today was Goldilocks vs. the Dentist.

On the lighter side, Understanding my son posted Coming Full Circle. Be sure to follow the link, Duh! to the earlier post, Teaching Sass. And Arby posted a children's story with a happy ending that made me laugh out loud. As Mama Bear said, "Don't read Arby when you've got to pee!"

Goldilocks vs. the Dentist

Part One: Terror in the Chair (Holy or Unholy)

The dread kids with autism feel at the thought of going to the dentist, and the dread their parents feel at the thought of taking them have been well described by Tim at Both Hands and a Flashlight. And no matter how we handle it, we're going to feel guilty.

Our dentist is the gentlest, kindest, most engaging man I’ve ever met. He reminds me of Mr. Rogers. Goldilocks absolutely loves him. When he knows he has an appointment, he says, “I get to visit Dr. N., my dentist? Hooray!” and runs to the car.

But it wasn’t always this way. At first, Dr. N. was not sure he could handle a patient with autism. He referred him to a “pediatric/special needs” dentist who he said would give him a sedative. He teaches at the university dental school, but he didn’t feel comfortable prescribing a sedative, because he felt that was outside his area of expertise.

The “pediatric/special needs” dentist was horrible. She refused to give the sedative she had promised, and instead, put her knee on his chest and told Mama to hold his legs, all the while scolding him for being “naughty”. He was so terrified, she couldn’t even do a basic exam. Mama Bear promised Goldilocks he would never have to go see that mean lady again.

When we reported this to Dr. N., he was shocked, and said he would never refer anyone to her again. He also agreed to give Goldilocks a chance. He scheduled him for a slow time of day with his gentlest, most patient hygienist. At the end, he came in, introduced himself, shook hands, and sent GL home with a big bag of trinkets. With each visit, he did a little more of his usual exam, eventually working up to a cleaning, complete exam, and x-rays.

But on his last visit, Dr. N. found a cavity. Next visit will be GL’s first filling. Dr. N. is willing to try it, but is still not ready to prescribe a sedative. GL has his daily meds, plus an extra Trazadone tablet to be given PRN, and we’re going to try it with that.

When GL had stitches, it took four men to hold him down, and he was two years old! Now he’s thirteen. Once, after surgery, he had a bad reaction to morphine. The doctor said not to give him any more morphine, but wouldn’t start a new pain med until the last dose of morphine was out of his system–and they had just given it. He got so upset, he stood on the femur that had just been sawn through that morning. Desperate, the nurses put a bolus of valium in his IV. Have you ever watched an animal be put to sleep? We had a cat once that was dying and in misery. Mom wanted to be certain he was out of his misery, but couldn’t bear to watch. She asked me to take him in, and watch to be certain he was dead. GL’s response to the valium looked exactly like that. It was frightening, disturbing even. But when he awoke, he was calm, and they were able to give him a different pain med.

All this to say, medication makes me uneasy, but compared to GL’s meltdowns, or seeing the “pediatric/special needs” dentist again, (which would bring on a meltdown, if not in her office, once we got home) temporarily drugged out of his mind doesn’t sound so bad. But I’d rather have the Versed they gave him before surgery. About an ounce of liquid in a dose cup, and it apparently didn’t taste too bad, but once it started working, although he was quite awake and alert, when they asked if they could take his Game Boy away, he didn’t care.

Part Two: In which we Hope to Avoid the loss of anyone's Teeth or Fingers

Today was filling day. Before he left the house, I gave GL his bedtime meds, plus everything else we’ve been told we could safely give him. Ever notice how it doesn’t feel as safe when it’s your kid? But I didn’t know what else I could do. Mama Bear took him to the dentist. I had to promise to take him to the library for DVDs afterward before he would get in the car. I stayed home with BB, who has been having issues of his own.

MB said that GL didn’t yell or fight, but Dr. N. seemed nervous about the whole thing. GL spent the whole time worrying aloud, which made Dr. N. more nervous. GL tolerated the needle fairly well. MB gave everything less-threatening-sounding names, which helped a lot. So the needle was only a “pinch” that would make his tooth “tingle” not “sleep”, and the drill was only a “scraper”. I know it sounds like lying to the kid, but to him, names are everything, and the wrong name can send him into a panic far worse than the procedure itself can.

Near the end of the drilling, GL hopped out of the chair and said, “I’m done!” Only those who know him very well can appreciate the finality that phrase carries. That’s when Dr. N. looked Really Panicked. You just can’t leave a tooth like that. Since they were past the point of no return, MB resorted to bribery, something we desperately try to avoid, because no matter what you offer, GL always tries to negotiate for more. She offered to take him to the store to buy a DVD. He got back in the chair, and let Dr. N. finish drilling and filling as quickly as he could, hoping GL wouldn’t change his mind again. Dr. N. was embarrassed, saying this wasn’t his best work, but it should hold.

MB found a boxed set of all three Stuart Little movies for $10. I hope he doesn’t expect three DVDs next time he needs a filling, but it was enough to keep him busy until bedtime. Still, he kept coming to me with sad, tired eyes, asking to go to the library for more DVDs. I told him I’d take him when he finished watching these, knowing that won’t be until tomorrow, when we were planning to go anyway.

Vacation overview

I did not get to posting a day by day camp update. Sorry, but we've been busy. Lots of camp stuff: fishing,rock-wall climbing,crafts,songs and food. Back at the Super 8 for our nights,it's day camp,swimming & eating. More details later. Mama is very tired.

Twenty pounds

We're still doing "Weight Watchers at Home". I'm down 20 lbs. from where I started.

Vacation- Day 1

Because Papa Bear is the primary care giver, he stays at home to recover, while I take the boys on vacation. It works for our family. Some day, Papa & I will take a week with no boys. Until then I will update Papa & everyone else on our vacation. We go to a special needs VBS day camp. It’s great, the sibs have a camp, the moms have a camp the person with special needs has a camp & a one on one buddy. I drove 90 min to the hotel so we don’t have to do it at 6:00 am tomorrow. Checked into the hotel, took the boys to the pool, took the boys to supper, took the boys to the pool, put the boys in bed. It’s 10:00 pm, I beat. Good night.

Meltdown

You've all seen tantrums in two-year-olds. A meltdown is to a temper tantrum what a major hurricane is to a gentle rain with occasional gusts of 20 mph wind. There are qualitative differences as well. GL had a meltdown today.

Reasonably good training by a parent or caregiver largely eliminates tantrums in most children before they reach school age. They may still try the tactic on occasion, but strong social disapproval usually extinguishes the behavior even with especially bad training. In children with autism, however, while careful management, hyper-vigilance for triggers, and medication can help reduce the frequency of meltdowns, they cannot eliminate them. This introduces new difficulties as the child grows older and social expectations increase. Picture a 5', 120 lb. 13 yo throwing himself on the floor in the middle of Wal-Mart and throwing what looks like the mother of all tantrums, cubed, and think of the level of social disapproval directed at both the child and his parents. Thankfully, as he has grown, more of GL's meltdowns have happened at home.

When GL was younger, a meltdown would deprive him of the ability to process any form of verbal input. We had a friend studying to be an ASL interpreter, and she came to our house to give the family weekly lessons. Sometimes when he couldn't process speech, he could understand if I signed to him, even if he couldn't sign or speak coherently at the moment. Now he understands most of what people say during a meltdown, but can't respond rationally. Imagine all the anger a 13 yo is capable of, combined with the verbal skills of an 8 yo, and the reasoning of a 2 yo in mid-tantrum. He screams the most inappropriate things he can think of at volumes that can be heard down the block. Things like, "Help! Call 911!" "You're hurting me!" or, like today, "Get off me!" even when there's no one in the room. He also imagines the most bizarre and horrific punishments, and screams, "Don't _____!"

Even at home, with the doors and windows closed, we imagined the neighbors could hear, and worried about what they might be thinking. Today, we found out they could. I had taken the car into town to run some errands, and GL decided it was time to go to the beach. It was not time to go to the beach. We try not to let him dictate our schedule, and when we need to change it to adapt to his needs, we try not to let him get the feeling he is in charge. And with the car gone, Mama Bear couldn't have taken him anywhere if she wanted to. He proceeded to throw a record-breaker, even for him. When the dust had settled and the smoke cleared, there was a sheriff's deputy on our doorstep.

MB explained that GL has autism, and invited him in to meet GL, who by this time had calmed down and more or less forgotten the preceding events. The deputy asked if we knew these neighbors. No, we don't. He asked permission to explain the situation to them, so they wouldn't worry and call the police next time GL has a meltdown. MB agreed. I got home shortly after he left.

Okay...

GL: Dad, can I ask you a question?
Me: Yes.
GL: Okay, let me think about it. (goes into closet; closes door; comes out a moment later) Dad, what day is it, what time is it?