Dear Swim Instructor

Dear Swim Instructor,

You may have noticed my children didn't sign up for your lessons the last two sessions. If you wondered about it at all, perhaps you figured we stopped because the kids were tired of lessons or because we were busy with other activities.

But that's not why.

To tell the truth, Sky wants to keep taking lessons. He's proud of his ability to swim and loves being in the water. But, I just can't do it. I can't leave my kids in your hands, even though I am sure that swim lessons could benefit them both greatly.

The thing is, the last time we were there, Sky had one of his days when it's impossible for him to keep it together. He was loud, had a hard time following instructions, and had trouble minding the personal space of those around him. In other words, he had a pretty typical day for a kid with an autism spectrum disorder. It was difficult for me to watch him that way. It can be frustrating to see him miss out on opportunities because he's lost in his own world and heartbreaking to see how other people respond to him when he's so out of sync.

Do you remember what you said to me that day? My guess is that the conversation has long since left your memory.

You said, "Phew, I'm glad I only have him for an hour. I feel sorry for you!" Your facial expression (you were smiling) indicated you were trying to be light, maybe even funny. You know Sky is on the spectrum, though, and even if you don't quite get what that means, you should be able to imagine that he faces challenges that affect his behavior and make it difficult for him manage certain situations successfully.

Your comment made me wonder. I wonder if you would tell a mom whose kid is visually or hearing impaired that you're glad you only have to spend an hour with her kid? What about a mom whose kid has Down's Syndrome or whose kid is in a wheelchair?

ASD is with us 24 hours a day, every single day. It greatly impacts our lives. It limits Sky's ability to demonstrate his many talents. It cruelly allows him to seem "normal" when he's actually completely bewildered by the onslaught of input from the sensory, verbal, and social cues all around him. We invest much of our time and resources toward helping him function in a world that he is not suited for. It's exhausting. So you're right. You're lucky you only have to "deal" with him for just an hour out of your week. You're lucky you can go home to a family not burdened with autism.

I get that you probably don't really understand how my kid ticks. I get that he can be annoying. I even get that working with him can be demoralizing at times. But please don't dismiss him and his challenges. And, for the love of God, please don't offer me your pity.

Sincerely,

Mom on the Edge


PS -- I know you've been teaching swimming for awhile, but since 1 in 88 kids today has an autism spectrum disorder, it might not hurt to educate yourself about it.

Pink P, Ninja Sleeper

After years of multiple night-time awakenings, the pediatrician ordered a sleep test for Pink P. Her reasoning: before we tighten the screws with behavioral interventions, we need to make sure there are no medical reasons for Pink's actions. After years of disciplining Sky for doing stuff caused by his ASD, I'm all for making sure I don't do the same thing to his sister. 

Pink was unnaturally excited about the idea of sleeping in the hospital with Mommy. Seems she interpreted it as a girls night out (Maybe we should get out more?). The new pajamas with pink fleece shorts certainly helped. Beforehand, we talked to her about the procedure. Sky explained it best: "They're gonna put a bunch of stickers on you, but it won't hurt." Just in case, I packed a couple of her favorite DVDs.

It turns out I shouldn't have been worried about whether or not Pink P would sleep. But I should have worried about whether the one-year old in the room next door was going to sleep. It kinda stinks to leave my own one-year old at home only to have a different one-year old keep me up all night. At least with my own kid, I get a chance to sit in a cozy chair and snuggle. The most ridiculously uncomfortable pull-out couch at the sleep center didn't help my mood at all. And seriously, if you're going to do sleep tests, shouldn't you soundproof the walls and put the helipad on the other side of the building?

But enough about me and my grumpiness. Here's a picture (click to enlarge):



For the record: she slept like a rock. Probably better than's she's slept in a long time. In fact, she's slept soundly every night since. Figures.

Proving Once Again that Ren is Actually a Superhero in Disguise

Adding to the list of choices I know I will regret?

Bunk Beds.

The tadpole scenario played out as expected,* so clearly I need to get my thrills and chills elsewhere.

Every parent I know with bunk beds hates them. It's next-to-impossible to make the beds in the morning, and changing the sheets takes real commitment. Plus, there's always a chance a kid will plummet to the ground in a groggy attempt to make a midnight trip to the bathroom. And I know Sky and Pink P will invent a game that requires alternate paths to the top bunk (and down again).

I know all this, and yet...And yet, when I saw this, the choice was clear. I had to have these bunk beds.



Curse you Costco! Curse you! I tried to resist, I really did. But this set up was $500 cheaper than any other I'd seen, and I had been feeling guilty about forcing my taller-than-average four-year old to sleep in a toddler bed.

So, on Saturday, I left Ren home with the kids, and headed with a friend to the nearest Costco fifty miles (or, over an hour) away. By the time we got a flat-bed cart and found someone to help us load the bed onto it, an Asian couple was wheeling the last bunk beds "in stock" out the door. Perhaps I should have taken this as a sign from God. But, I didn't. Instead, I drove to a second Costco 20 minutes away and managed to snag the last one there. (Apparently it was buy-a-bunk-bed day at Costco.) Amazingly, the two boxes and twin mattress fit perfectly into the back of the car, and after a quick trip to Target to buy bedding for the new beds (ponies for Pink P and Star Wars for Sky), we headed home.



Years of packing and unpacking with kids have taught Ren and I that we can only get things done in the dead of night when the kids are asleep. So, we settled Sky and Pink P into an indoor "camp out" in the study and finally began building the bed around 9:30 p.m. First, we carried the bed piece by piece from the car. Then, after considerable deliberation and three furniture rearrangements, we started putting it together.

By 1 a.m., we had this:



Things were looking good. I even allowed myself to entertain the notion that I might get to sleep.

Then catastrophe struck. The washing machine tried to eat Pink P's new comforter, leaving it mangled.

Fortunately, I'm married to a superhero, because at 2:00 a.m., Ren was doing this:



And then, we had this (sorry I didn't take a "before" picture of the gaping hole. I was too distraught):



I know it's not beautiful, but it looks way better than anything I would have pulled off, and it kept me from having a major mommy meltdown. Oh, and the only reason Ren let me post this picture of his "inferior" handiwork (see the uneven stitching?) is because I assured him you would understand that he doesn't do his best sewing at 2:00 in the morning in a semi-dark room, especially when his back hurts.

Finally, at 2:45 a.m. (and four loads of laundry later), we had this:



*****

Of course the kids are thrilled. And I'm pretty happy about the unintended bonus: Sky thinks his new bed is the perfect escape when his senses start to be overloaded.

We already had the tent for hiding:



And the swing for calming:



And now we have the top bunk for when he needs to "take a break":



Maybe next we will even have a night or two of uninterrupted sleep.




*Except instead of growing two frogs in Dagoba Swamp, we buried one, and released the other into a friend's pond; apparently that sucker needs at least another year before he springs some legs. I won't lie. I'm not heartbroken that I won't see him become a full-grown bullfrog.

The Backy Back and its Sucky Backiness

Maybe I've been taking the wrong approach. Instead of pretending the Back is not being a complete jerk, maybe it's time to embrace it. Maybe all it needs is a little more attention. So here you go, Back, a whole blog post about you. Hope you're happy. In fact, I hope you're happy enough to go bug someone else for awhile. Or, how about a cruise? I hear those are pretty nice. You could spend some time in the sun, explore new lands, and enjoy all-you-can-eat buffets at every meal. That's gotta be more fun than torturing a certain stay-at-home dad I know.

We went to the doctor yesterday to find out about the Back. Ren's pretty sure he can't live this way, you know with one leg completely numb all the time and the foot and thigh of the other randomly hopping on the numb train whenever the mood strikes them. And not just the fun kind of numb where he might accidentally cut off a toe without realizing it, but the pins and needles kind that shoots up and down the leg just to remind him there's no way he could possibly sleep. Ever again. The doctor agrees; not doing surgery is no longer an option. So for those of you keeping track at home, the Back wins again. Back 2 (or more like 643), Ren 0.

But you know what sucks more than a second back surgery that leaves us one man down for weeks on end? It's when one of the best surgeons in the country looks at all the images of the Back and puzzles over them for a tad longer than is comfortable for anyone. It turns out that there is no simple solution for the havoc the Back has been wreaking on our lives. In fact, there's really no solution at all. As our doctor told us, "In 2042, doctors will look at this and say, 'Why'd they ever cut on this guy,' but in 2012, there's no easy fix." Oh the joy of heading into a major surgery with little knowledge of whether things will be any better in the end!

Well played, Back, well played.





Images: danceadvantage.net and cartoonclipart.com

On Amusement Parks and Dead Tadpoles

One of our tadpole friends died yesterday, just short of seven weeks after coming to live with us. All things considered, he lasted longer than I expected. He might have been doomed from the start, with his abnormally large head and lethargic way. Things started to really go south about ten days ago. When we went to change the water, Sky exclaimed: "Look, Mom! One of them is doing stunts. He can even swim upside down." It took me a minute to realize that an upside down tadpole is usually a dead tadpole. Turns out we were both right. The tadpole was swimming upside down, but he was also slowly dying. We did everything we could, but in the end, the day after another water change, our tadpole went belly up for good.

Sky handled it pretty well actually. That is, until I asked Ren to help put the tadpole to rest. His solution: throw the dead tadpole into the brush. Note to self: the next time I give Ren the important task of helping one of our children process the death of a beloved (okay, maybe not quite beloved, but still...) pet, explicitly remind him not to just hurl it into the bushes. By the time I got there, Sky stood staring distractedly in the direction Ren had tossed his pet. I did what I could. I offered a prayer for the deceased and told Sky it wasn't his fault and that he'd done an awesome job taking care of the tadpoles. I also made Ren promise to give the tadpole a proper burial. Which he did. As soon as he recovered it from the brush. Which took awhile. Which kinda served him right.

*****

In other news, we made our first visit to a major amusement park since receiving Sky's diagnosis. And it went very well. With an ASD diagnosis, Sky could get a pass which allowed him to jump to the front of the line. I can't tell you what a difference this made. All previous trips to amusement parks have included at least one (and usually way more than one) major meltdown. Not waiting in line = much less anxiety. Much less anxiety = a better time for everyone. Sure, some folks glared at us (after all, he doesn't look autistic), but I decided to ignore them and enjoy the fun the kids were having. We pay the price of Sky's ASD every single day, so if any of the glarers had had the guts to complain out loud, I would have gladly offered to trade life with a kid on the spectrum for a day of line jumping.

At some point during that hot day of roller coaster riding, it struck me that we're still only 18 months post-diagnosis. Our lives have changed considerably since embarking on the journey to manage (and hopefully eventually overcome) Sky's ASD. We've learned a lot, but we have a long way to go. It has been an 18 months brimming with transitions and challenges. We welcomed a new baby. We learned about Pink P's asthma. And Sky's heart murmur. And Stow's hydronephrosis. And Ren's back. We moved. We finished and defended a dissertation. We applied for and interviewed for, numerous jobs before eventually landing where we started. We had back surgery. We went to an amusement park.

And killed a tadpole.

And I'd say that's about par for the course.

You Ask a Stupid Question...

Stow has a birthmark. Actually, all of my kids have birthmarks, but Stow has one (on his leg) that others can see. It's not huge, but it's not necessarily tiny, either. Now I'm not one to worry about such things (though I have wondered if it will cause him grief when he gets older). But a lot of people have been trying to disturb my Zen attitude about it with their lame curiosity.

It's amazing how many people do not adhere to the social convention we encourage Pink P and Sky to follow to not talk about how others look. My ASD kid excels at making poorly-timed observations about complete strangers--usually at the precise moment when a crowded room has fallen unexpectedly silent--so the "no-talking-about-the-bodies-of-others" rule has proven quite useful.

I've already lost count of the number times people (often complete strangers) have asked me: "Is that a birthmark?" I always simply say, "Yes." (Followed by an awkard silence. I mean, what else should I say?) In my head, though, I'm totally judging the person for the stupid question. In fact, "Is that a birthmark?" may surpass "Where did you get him?" as the stupidest question I've ever been asked. So, I've come up with a useful list of responses that I hope helps you, too.

Top 10 Answers to the Question "Is that a Birthmark?"

10. Oops! I must've missed a spot with the sunscreen.

9. What? What are you talking about? (Look at birthmark and exclaim) Oh my gosh! What's wrong with him? Hurry, call 911!!

8. Shoot, I miss that spot every time. (Try to rub it off.)

7. Why? Do you want one?

6. Thanks! I've been looking for that piece of gum!

5. All Japanese people have one. It's how the government controls them.

4. Uh oh, diaper leak! Can you hold him for a second?

3. It's a scar. He's Harry Potter's long-lost baby brother, you know. What? You didn't know about the little brother. Man, you need to re-read the books, then.

2. That's a birthmark?!! Phew! I thought aliens were trying to communicate with me!

1. It's a tattoo of New Jersey. We love that show.

Pink P Learns to Skate

I took Sky and Pink P roller skating. Because, you know, it went so well the first time. (Actually, because Sky got a free skate pass, and it was going to expire. You know I can't pass up a good deal).

Ren's back was doing its backy thing, so I took all three kids to the rink alone. Not sure why I considered this a good plan, though I am beginning to think that maybe I should lower my expectations regarding my ability to demonstrate common sense--especially when there's a coupon involved.

Since I had to watch Stow, I couldn't skate (darn), so I sent Sky and Pink out on the floor with a "skate buddy" (a.k.a. PVC pipes on wheels). Before you start worrying: no one was injured.

Fortunately, there were only about ten people there. Plenty of room for them to:

fall down...



skate in the wrong direction...



and take extended breaks on the floor.



But what blew my mind was Pink P's tenacity. She demonstrated the sheer grit she utilizes on a daily basis when dealing with a big brother on the spectrum and a baby brother who always encroaches on her turf.

She fell down.



And got back up.



She face planted into the skate buddy.



And got back up.



She hit her head. (Sorry for the blurry picture--I was on the move to make sure she was okay. She was.)



And got back up.



She just kept skating.



And soon, she figured out how to skate.



And despite the trials and tribulations, she took off.



And I saw my future pass before my eyes.