Sunday, August 16, 2015

Parenting 101 by Ren

You know, guys, despite everything, I'm pretty sure my kids are probably going to turn out just fine, but certainly not because of me.

I'm the always-busy-often-stressed-sometimes-distracted-put-the-kids-in-a-million-activities-and-still-worry-incessantly mom. Don't worry, though, I'm working on it. I'm cutting out diet soda, sleeping more, and working hard to just be present for them. Eventually--probably just about the time Stow is heading off to college--I fully intend to get my act together.

Fortunately for the kids (and for me -- who am I kidding), Ren has a pretty laid back style of parenting that, when I step back and just let him do his thing, is extremely effective. (Funny how these things just seem to work out.)

Ren upped the ante on his "natural" parenting style this summer, and as a result, the kids have spent a lot of time enjoying each other and the outdoors.

It started this past spring when Ren put up a series of bird feeders in the back yard. I was skeptical.

But the feeders led to a lot of this:

Bird watching

Which led to this:

Pink's bird watching journal.
Soon the kids could identify all of the birds that came into our yard and could understand how things like weather and the presence of other birds impacted feeder traffic on any given day. They also figured out how to use a bird watching app to keep records about their discoveries and to record the different bird calls. Such big pay off for such a simple idea!

Next, Ren decided to plant a garden. One day I came home to find these:

20+ rose bushes waiting to be planted
You remember, Ren has a very bad back. And, I have whatever the opposite of a green thumb is. I mean, I can kill a plant in 12 hours flat (and sometimes even sooner). When I pulled in from work to find these roses lining the garage floor, I could already imagine Ren's back taking a turn for the worse and me being put in charge of the plants. It wasn't a rosy scene (pun totally intended). Not long after the roses, Ren brought home not one, not two, but three trees to plant.That's about the time we had a huge fight about his plans for our landscaping. I just knew I'd end up having to care for all of these plants, and I don't have the time or skill for that.

Eventually, I figured out how to chill out and just let Ren do his thing.

Ren's garden not long after he planted it.
I'm really glad I did. The kids LOVE the garden. Ren planted green peppers, nasubi (Japanese eggplant), tomatoes, and strawberries. The excitement was palpable as the kids waited for the the garden to yield its first delicacy. It turned out that the first harvest was a single tiny strawberry. When it was ready to pick, Sky brought it gingerly to the house and carefully cut it into three tinier pieces for the three of them to share.

The first (teeny tiny) strawberry.
By the first of August, the garden looked like this:

The garden in full bloom.
And, this:
Tomatoes and a rose bush (plus a couple of corn stalks the kids planted at camp.
Japanese nasubi (eggplant)

I admit, I had NO idea the kids would love the garden this much. They monitor the growth of the vegetables and fruit, help water the garden, and pick fresh vegetables every day. And, since they never seem to tire of any of these tasks, they're outside a lot!

Of course, the other benefit of planting a garden is the loads and loads of fresh fruits and (mostly) vegetables we've harvested this summer.

Veggies from the garden.

We have A LOT of eggplant!
The biggest surprise for me is that we have been able to get the kids to eat nasubi (eggplant) and green peppers this summer despite the fact they would never eat them before. I know that kids are more willing to eat things they make themselves, but I didn't imagine this held true for eggplant and green pepper. So far, we've made miso nasubi stir fry, miso soup with nasubi, mabo nasubi, and nasubi spaghetti...

Miso nasubi stir fry.

Miso soup with nasubi and enoki
...and every single meal we've made with vegetables from our garden has ended with plates that look like this:

Next summer, Ren wants to add corn, cucumbers, and celery. I'm hoping for a few fewer nasubi and tomato plants, but I've learned to step back and just let Ren do what Ren does. The results are pretty amazing!

Saturday, August 15, 2015

Peanut-free or Not Peanut-free, Part 2

A new school year is about to begin here, so I am in full advocacy mode again! Here's a follow up to the peanut issues from spring:

Dear Superintendent Brown,

In the spring, Mr. E forwarded a message we sent regarding an incident with a peanut butter sandwich on the bus. I’m sorry I didn’t have a chance to follow up then (I spent several weeks of the summer in China and Japan and got a bit behind on my “to do” list), but I am writing now as we are set to begin a new school year.

Our daughter Pink has a life-threatening peanut allergy, which we have managed by teaching her self-advocacy and how to interact safely with her peers when food is involved. She is aware of her allergies and proactive in protecting herself.

What we can’t control, unfortunately, is the behavior of other students. The incident on the bus on at the end of the spring semester highlights for us just how unsafe the world beyond the walls of our house and of her peanut-free classroom can be.  As if to punctuate this for us, the day after the incident on the bus, when the topic of peanut allergies came up at a club meeting, one of our older son’s classmates laughingly told me how “a bunch of kids at our school rub peanut butter in the faces of the kids with peanut allergies.”

I know it will sound like an exaggeration, but when Pink faces a child who has peanuts or peanut butter, it’s akin to her encountering someone who is wielding a knife. The risks of injury and/or death are no different between the two. As her parents, we understand that our goal is to teach her to be safe and to live her life without fear (to the greatest extent possible), but we also believe it is extremely important to educate others about the real risks of severe nut allergies. Children of all ages need to understand just how dangerous something seemingly innocuous like peanut butter can be for their friends.

We understand that this is an "allergen aware" district. We also understand the logistical challenges to becoming a peanut-free district. Our hope is that serious discussion would happen around the pros and cons of going peanut-free, particularly with thoughts about free and appropriate public education in mind. If the district won’t or can’t go peanut- free, we hope there will be sincere discussion (and hopefully then action) in the area of student education and awareness. We ask that concentrated effort be paid toward educating students in all buildings about the risks of allergies and the importance of promoting safety and respect. We also ask that that school-provided lunches and snacks be free of peanuts. In particular, we ask that lunches provided for field trips NOT be peanut butter sandwiches. Pink describes field trips as being extremely scary and her teachers these past two years agree that the entire experience is nerve-wracking for them as well. Because Pink's peanut allergy seems to have worsened, her allergist is suggesting that perhaps she should no longer attend the school field trips. With plenty of alternative sandwich options (sunbutter, wowbutter, ham, cheese, jelly, and, in the case there are no children with severe tree nut allergies, also almond butter and cashew butter), we sincerely hope the district is able to move toward a different alternative for the sack lunches provided on field trips, so that we won’t have to decide between keeping Pink safe and sending her to school so she can enjoy the same learning experiences as her classmates.

Though Pink's allergies don’t impact her ability to make friends and perform well academically, they do cause her to experience fear and alienation when at school. We will continue to teach her to self-advocate, but we ask for your help in educating other students and in making the school environment one that feels like a safe and welcoming space for all students.


Moe and Ren 

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. 

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.