Monday, July 6, 2015

Breathe Deep

Behavior modification has never been easy at our house. Some kids on the spectrum (mine included) are not motivated by external reward/punishment in the way non-ASD children are. Here's an example of one kind of "rewarding" that many parents do that has NEVER worked at our house. This particular scenario happened in one form or another approximately 1053 times before we figured out what we were doing wrong:
Us: Sky, if you [fill in desired behavior here] today, we will go to a movie after lunch. 
Sky: [Immediately freaks out and does the opposite of desired behavior to the nth degree] 
Us: Sky, why are you doing that? Don't you want to go see a movie? 
Sky: [Intensifies undesired behavior] 
Us: Okay, that's it. I guess we won't go to a movie after all. 
Sky: [MELTDOWN]

Several things were going on here. First, the mention of a highly desired reward increased Sky's excitement level, immediately making it impossible for him to a) process what we were saying and b) fully control his behavior. Second, as soon as we reacted negatively to his behavior and threatened to withhold the reward, the heightened excitement turned into confusion and anxiety. Third, when the result was the loss of the very thing we promised, Sky melted down because he could neither control his behavior nor express verbally what was going on in his head. He ended up simply feeling frustrated and out of control of his destiny.

Like I said, it took us an embarrassingly and painfully long time to figure this out!

We’ve tried a lot of other things with similar (lack of) success. Sticker charts? Forget about it. All three of the kids could care less about stickers. I mean, really. And, yes, we've tried the approach where if they get a certain number of stickers, they will get a prize. It just doesn’t work. They are too interested in the things that drive their day to day interests to be persuaded by some abstract reward that’s at least a few days away. There’s a whole body of literature out there about why extrinsic motivations don’t work well for kids on the spectrum, so at least we know there’s some precedent for this kind of thing.

For the record, the marble jar is the only spin off of this idea that has even remotely worked, and I am pretty sure that’s because the kids help motivate each other toward the goal. We’ve been at it for six months now, though, and they’ve only managed to fill the jar twice (most recently three days ago after months of trying).
 
Three months later, a full marble jar
These days, Stow presents the greatest challenge for us. He consistently wakes up between 5 and 5:45 a.m. and immediately stealthily sets about seeing what trouble he can cause. It turns out that he can cause a lot of trouble during the 20 minutes or so between when he wakes up and when Ren or I are able to shake off our stupors and figure out how to keep him occupied. Recent shenanigans include: 

**painting the bathroom with watercolor paints,  

**writing on our bedroom wall with a permanent marker,

In case you're wondering, rubbing alcohol just kind of lightens the color while also removing the paint.
**breaking every single Lego contraption on Sky’s desk (multiple times), 

**eating several slices of Ren’s not-gluten-free bread, 

He tried to hide his handiwork on this one but the BIG HOLE in the bag gave him away.
**“helping” finish the letter Pink had written and illustrated for Big Sissy, and 

**"seeing what would happen" if he went potty on the floor of his room instead of in the toilet.

THIS is what happens.

Like Sky, Stow doesn’t respond well to heightened emotional responses to his behavior, despite the fact that he’s quite adept at making a person want to respond emotionally. The only chance one has for success when dealing with him is to keep totally and completely cool. Unfortunately for us, most days he seems pretty intent on making sure that You. Do. Not. Keep. Your. Cool.

So, our behavior therapists suggested we simplify things and go back to the five-minute time out. Time outs never seemed to work for Sky, and Pink rarely needed one. And, our attempts at them with Stow were dismal failures in the past. This time, though, the therapist seems to think they just might work. We have a visual timer, which she suggested we use for this. She also told us to find a less exciting time out spot. Apparently, the bottom step is just a little too much fun. (Sometimes it strikes me just how often the therapists we work with are effective not because they offer new-fangled ideas for how to address the various challenges we face but because they remind us to use what we have and go back to the things that didn’t work before because they just might work now).

A little over a week ago, we gave it a shot.

Boy vs. the visual timer, round 1.

It took about seventeen minutes to get Stow through his five-minute time out, but the visual timer and change of location helped him understand time outs in a way he never had before.  It was encouraging.

He REALLY seemed to get it. When I went to take a shower, I found this

At least I was permitted to shower while in time out.
—apparently I need to learn to be nicer and not put people in time out.

A couple of days after that, I got another time out—

Found this right on the floor outside the bathroom door.
— this time for having the audacity to go to the restroom alone. (NOTE: If I could actually get a 50-minute time out entirely to myself, I would take it every dang time).

The summer after my sophomore year of college, I worked at a lodge on the edge of Rocky Mountain National Park. Every time I had a day off, I filled my daypack and set out into the mountains where I would wander the trails alone until dusk. It was heavenly. In a cabin with no television (and certainly no computer or cell phone), my entertainment that summer was letter correspondences with friends and family back home. A good friend of mine ended one of her letters to me with advice I still try to put into practice today: “Breathe deep the mountain air and save some for the rougher days.”

This mountain air!
For now, the visual timer is working for Stow. If our experience tells us anything, we know this won’t last forever and soon enough we will need to find something else that works. But, I’m going to choose to savor this moment. I’m going to rejoice in the little gift that is time outs working for one kid for just this little while. I hope you can find those moments of respite in your everyday lives, too. Breathe deep the mountain air, friends! Goodness knows we’re going to need it.

Thursday, July 2, 2015

Two Tales of a Linen Closet

Several weeks ago, Sky decided to stand on Pink's desk chair to reach something on the top shelf of the linen closet. At the time, I was reading a bedtime story to Stow, so I didn't hear the conversation between the two of them that resulted in him standing on the chair. Though, I did hear some bickering before I heard the crash that sent me running to the hall to see what had happened. When I got there, Sky was on the floor, the chair he'd been standing on splintered beneath him.



Besides a bruise and a scrape, Sky managed to survive the chair collapse relatively unscathed. He WAS pretty traumatized though. And, Pink was beside herself over the fact that SOMEONE BROKE HER DESK CHAIR!!! Note to her brothers: Guys, Pink totally has your back. Unless, that is, you break her pink desk chair. Then you are On. Your. Own.

Once the post-traumatic-chair-stress chaos settled a bit--and believe me, it took awhile-- I went to show the chair to Ren. In typical Ren fashion, he looked at the chair, and said rather nonchalantly, "Chairs shouldn't do that."

Sometimes, Ren can be the king of understatement.

It's true, given Sky's weight and the specifications for the chair, it shouldn't have splintered like that. This is what I told the representative from Target when I called to complain, though it took approximately an eon to get through to anyone (Hey, Target, you might want to work on clarifying your "Contact Us" page. It's not entirely obvious that, even though someone purchases an item online using her Target card that she should choose neither the "online experience" nor "card services" number but the "store experience" one because, you know, why would that be obvious?) and again when I talked with a person from KidKraft who followed up with us.

In my conversations with representatives from both places I emphasized how dangerous it could have been--I can only imagine what might have happened if Sky'd been trying to reach the top of the hutch on his desk and did a suddenly and forceful face plant into the desk. He could have been seriously injured. When I talked with Ilan at KidKraft, I pointed out that chairs like these that are made for kids need to be made to support them when they climb because sometimes that's just what kids do. I also asked that he let me know exactly what the company would do to make changes so that something similar doesn't happen in the future. As an after thought, I asked if there was any way he could hook me up with a new pink chair since the original chair was out of production, and Pink was driving me batty with her desk chair woes. I was calm but clear in my expectations. I didn't threaten him or get too over the top about what could have happened since I figured the possible alternate outcomes were pretty obvious.

Within a few days, Ilan hooked us up with this:


AND, this!


I was thrilled. Pink was thrilled. And, even Stow was thrilled (I mean what's not to like about having your very own big boy desk?). But what stuck with me the most from this experience was that as we wrapped up our final conversation, Ilan thanked me. "I can't tell you how much I appreciate the way you handled this experience," he said. "In my line of work, I get very few chances to tell someone that it has been a pleasure working with them, but I really want to thank you for being so gracious about this."

Both Target and KidKraft did right by us. They showed genuine concern about the faulty product and Sky's injury. They acted quickly to respond to our requests, and they followed up several times to let us know how they planned to do things differently in the future. So, that's all good. But, I can't help thinking about how entirely grateful Ilan was, and it motivates me to remind us all (myself included) that it's so, so, so much better when we can handle upsetting situations calmly and respectfully.

******

For a few weeks after this happened, all was quiet with the linen closet. Then, last weekend, I discovered the real cause of the chair collapse. Someone (or thing) had clearly jinxed our linen closet. After all, it was just as Sky was about to root through one of the top shelves for a missing key that the chair gave out. Now, I know why.

This:




This is Sky's Kindle. You know, the one I hid from him back in the summer of 2013(!), the one all of us had looked everywhere to find, the one we'd given up on, even as I still suffered from the occasional pangs of guilt for losing something that cost more than we normally spend on gifts for the kids, the one that we replaced in the summer of 2014 because enough is enough already?

Yeah, that one.

Seems the linen closet was intent on keeping this little secret hidden, and it almost got away with it, too. But, then I decided to have a garage sale and do some long overdue cleaning and reorganizing, and the secret of the closet was revealed.

So, I think we can finally stop worrying about linen closet related freak accidents. Plus, now we have an extra Kindle, which is good because heaven knows where I'll decide to hide one the next time!


Wednesday, May 20, 2015

Peanut-free or Not Peanut-free

Well, it's been awhile since I posted a letter, but here's one I wrote to Pink's principal this morning. Interesting timing especially given my last post about food allergies (link). Also, apparently May is National Asthma and Allergy Awareness Month (so now you know!). I think this e-mail letter speaks for itself, but what do you think?

Dear Principal Edwards,

We write to let you know about a frightening incident that occurred on the bus on the way home yesterday. Pink tells us that the girl sitting in front of her was eating a peanut butter sandwich on the bus and when Pink informed the girl of her peanut allergy, the girl shoved her sandwich in Pink's face. Luckily, the peanut butter did not touch Pink, but since smelling it, she has had a tight chest and asthma-like symptoms. Only this morning did Pink think to tell us about this as she was preparing to ride the bus and reminded of what happened.

Recent allergy testing has re-confirmed for us that Pink's peanut allergy is at the severest level, and exposure to peanuts in any form constitutes a high risk. Given the severity of Pink's peanut allergy, this behavior by the other little girl on the bus is similar to a life-threatening assault. It is particularly concerning since Pink does not have an epi-pen with her on the bus ride due to the fact that the bus has been assumed to be an allergen-free space.

We'd like to request several things happen as a result of this incident. First, we'd like to ask that the child who did this to Pink is educated so she fully grasps the implications and potential outcomes of her behavior. We'd like to be sure that the child understands she shouldn’t do something like that again.

Second, we'd like broader education for students regarding severe food allergies. We are sure that no parent would like their child to be the cause of another child's serious illness or death and believe it's important to educate children about these risks and to promote better awareness.

Third, we'd like to ask that the district re-examine its policies regarding peanut/nut allergies. While we understand that there are many different kinds of food allergies (indeed, Pink has many other food allergies herself), peanuts are a special issue because they are more easily spread (from oil left on children's hands and through dust particles) than eggs, soy, or shellfish, particularly in the school environment. While it's not the most common allergy, it’s potentially very deadly with a very small amount of the allergen. 

While Pink's teacher is aware of these risks and we have epi-pens available at school, we remain unconvinced that Pink is safe in her current environment, particularly in light of yesterday's events. Pink's teacher has been very good about maintaining a peanut-free classroom. We are less sure that Pink is safe in the cafeteria or on the playground or in the hallways or on the bus. A severe peanut allergy like Pink has is classified as a disability and therefore is subject to FAPE. We would like to explore ways to ensure that Pink is safe and healthy at school and that she is not unfairly limited by her allergy. We understand this request is coming near the end of the school year, but we think it's important to address this issue for her future placements particularly in light of the district-wide policies regarding life-threatening food allergies.


Sincerely,

Moe and Ren