Thursday, May 24, 2012


Recently, we bought the kids early and late birthday presents of bicycles.  Early because the boys' birthdays aren't here yet, and late because, due to budget concerns (sounds official, no?) Maelynn had to wait for hers until May when her birthday is in February.  So lately the fun thing to do is back both vehicles out of the carport, letting the kids make laps in the carport while Eric and I watch.  It's very cute.  Richie is the one who is proud of his accomplishment, Maelynn is content to kinda walk on her toes, and Ryan is at times more content to watch his brother ride and stim.

It's a great time.  Ryan rides quite well, but as you can see, sometimes the draw to stim is greater than the need for speed.  I also must add that it felt deliciously parental to ride home with three brand-new bikes (and helmets, yes) in the back end of the van.  We smiled at each other so googley-eyed so often that evening, and even managed to skip the ten bucks extra for Richie and Mae's and assemble them ourselves.  Such a blessing it was to be able to provide such a wonderful treat for our kids!

But as Richie and Ryan (and, as soon as she figures out pedaling, sister) often discover, if you lean a little too far to one way you'll fall over.  Especially on a turn.  Each of the boys already had a wipe-out, and I've been proud of how they get right back up and try again.  At times I'll notice Richie leaning out of a turn a bit too much and warn him, and he corrects, avoiding the fall.  But I can't catch it every time.  Sometimes I think he's doing great and all systems are go, and then he's on the ground.  Other times he just doesn't listen when I say something.

Eric and I are working our own balancing act, as parents do.  We want our kids to have opportunities to show what they can do and be who God made them to be, and at the same time we want to protect them from harmful or potentially harmful situations.  This is one of those times that Ryan's challenges make things different.  We want them to have room to ride, so we back out the van and the truck and let them have the carport.  This creates a boundary that keeps the kids safer and keeps us calmer.  The boundary is clear... just don't go to the vehicles.

We want to be careful to give them... all of them... chances to fall and get up.  To make a mess and clean up.  To fail, then succeed in dealing with the failure.  As negative as that sounds, I can honestly say that I've learned more through pain and frustration and working through something than I ever did through something that came easy.

That said, there's a difference in giving them a chance to try something and setting them up for failure, injury, or even death.

Yes, they ride bikes.  Yes, they wear helmets.  A bike helmet narrowly saved the life of a friend of ours, so yes, they will wear them.  I don't care how dorky they look.  I don't care if people call me overprotective.  Do what you wish, that's cool.  My kids will protect their brains.  I am fully aware that I rode down my Nanny and Grandad's incredibly steep, twisty driveway a billion times as a kid, and lived through it all.  But we know better now, so we should do better, right?  The choice is up to each of us, however.  I know that in our area I'm likely in the minority on this issue, and I can assure you I'm not judging those who don't make the same rule I do... but I'm sticking to it for my kids.

Now for something a little harder for a non-special needs parent to see.

Ryan doesn't know danger.  Danger to my little man is candles, butterflies, dishwashers, washers, and elevators.  I have watched him try to walk, stimming, straight into a moving car.  I have seen him stim on the wheels of my van until, from my perspective, it looked like I would hit him.  Knowing this, and knowing that the number one cause of death in individuals with autism is accidents associated with wandering, we hang on to the little guy tightly.  Just last week a little boy with autism was killed in Arizona when he wandered away from home, where he'd been left with a babysitter, and to a highway, where he was last seen alive standing on the road, passersby trying to help him.  I can just see him stimming on cars going by. I look at his picture, and it looks like so many we have of Ryan... and it's chilling.

So not only do we ride our bikes in the safety of the driveway or the back yard, we do not let Ryan out of the house alone.  He knows how to walk in a line, to stay with his teacher, and his classmates love him and encourage him, and he knows to stay with me, even repeating the line from the social story about going to the store ad nauseum.  "I stay with my Mom," he says, over and over.  But I can't tell you how many times we've had to reach out and grab him to keep him safe.  We know that in any situation such as a church picnic, large family gathering, any time there's not a clear boundary that he knows to follow, one person at a time being responsible for his whereabouts is a must.  We look one another in the eye and say "you have Ryan" and the person receiving MUST SAY "yes, I have Ryan" or something clearly similar before person #1 walks away.

One of the dangers is that people who aren't his parents or family who know him best and see him in different settings often grow desensitized to these dangers.  They may see him looking like he's in line, in control, every day at school, church, or at home being himself and think we overreact.  Most of our friends, his teacher, and several of the aides at school know we're not crazy.  And it used to bother me to think that people might think we're overreacting, and at times it still does.  But more and more we're seeing that the greatest difficulty lies in striking the balance between opportunity and foolishness.  I still feel bad for keeping him home from a couple of things this year that I just didn't think were safe.  I had his teacher's understanding and the understanding of my husband and everyone else who is around him much, but there's still that Marlin parent in me.  You know, Nemo's dad.

Granted, Nemo had some seriously fabulous verbal communication skills.

But even with his wicked-awesome communication skills, Nemo got lost.

Even though Ryan has conquered so much, even though he can do so much, even though he is capable of doing so much, even though he's almost seven, even though within his routine he's pretty awesomely manageable, there are still some distinct differences in the level of protection he needs.  Anyone who has him in their care for any amount of time must understand that, especially outside his element, he is prone to wander... to slip away unnoticed... in an instant.  And it would only take that one instant for me to be without Ryan.

So, rather than sending my kid to the drop off, hoping that the movie ends the same way for us, I'll choose to err on the side of a more educated Marlin. We'll make sure the proper things are in place before sending him to the drop off.  I like to think that if Marlin had a little education and inclusion law on his side, he'd have brought his issues to the table well before the field trip to the drop off.  The district, knowing that Marlin is an educated, dedicated parent would trust his concerns, giving little Nemo (among other things, such as extended time for finishing swim races and a fin-resting period if he needs it) what he feels Nemo needs to be safe.  Maybe a rail on that drop off?  Some crisis aides for Mr. Ray?

Wait a minute... maybe Marlin isn't such a bad guy after all.  More every day I'm seeing Marlin as misunderstood, and maybe even a little mistreated.  If he had a little parent education for Nemo's particular need, and maybe a little PT and OT for Nemo, his little fit wouldn't have been needed.  I also can't help but feel for Mr. Ray's position.  He's obviously a seasoned, loved teacher who wouldn't knowingly place a kid in harm's way for the world!  It's got to be a little insulting to be told he wasn't capable of keeping track of Nemo.

So where's the balance?

It's in every situation, every day.  It's in every time we step out of the house, every time we pay the monthly monitoring fee for the security system on the house, every time I take the kids somewhere, every time we plan a trip, every situation at school where he will do something different or go someplace different.  It's in listening to the warnings, heeding them, and not being afraid to look a little... well... crazy.   Overprotective.

If I ever figure out how to strike the perfect balance without skinning my knees, you'll be among the first to know.  Till then, we'll keep pedaling, thankful for the caring, loving, amazing teachers we've had so far.

And as always, the ultimate thanks be to God.

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