Olympic Musings, Autism Style
August 17, 2008 by Kristina Chew, PhD
Filed under Health
It being the “dog days of August”; us being on vacation at the beach house; the 2008 Olympics taking place; Charlie being a boy who loves loves loves to swim—-I am indulging in making a bit of an Olympic (”citius altius fortius“).
More than a few people have said to me that life raising an autistic child is not so much a sprint as a marathon. In the beginning, after you first get the diagnosis, it feels that you have to run to your utmost abilities, until you’ve drawn your last breath and then still have to give it your all: So parents race to find out and try so many treatments and therapies for their child, so parents hurry hurry hurry and “give their all” to “recovering a child from autism.” You can read many an online (and book) account of children “recovered” from autism, often through various biomedical, alternative treatments. A recovered child, it’s suggested: Now those are parents who’ve won their event, who stand on the podium and get the gold medal of autism parenthood.
And then there’s “those others.” Whose children still have their diagnosis, still are in self-contained special ed classrooms with a 1:1 teacher:student ratio; who still need speech therapy and 1:1 care all the time. Who need psychiatric medications. Who don’t have any peer-aged friends. Who live with a list of “nevers” and “nots” that seems to only get longer as the days pass.
Yeah, no medal for us; no “history-making” records set for us—-yes, I’ll say it—-losers.
This is pretty pessimistic thinking of course, and not at all how Jim and I see our life with Charlie. I think I’m a mom who’s hit the proverbial jackpot for the proverbial gold: For the zillionth time, life raising an autistic son ain’t easy. But everything, absolutely everything, is better—shimmers gold—thanks to a boy named Charlie.
I have been noting Jim’s and my worries about Charlie in the ocean this year. He is a far better swimmer than both of us—Jim has endured a serious back injury—Charlie understands that he’s supposed to “swim between the flags,” but that doesn’t mean he always does this, and sometimes he can’t help drifting outside those boundaries because of the current. Today he got very annoyed at both of us for calling him to swim “over here,” and tugging and coaxing him in the lifeguard-designated swim space and I felt like such a nag.
But hey, that’s part of The Parenthood, right? Having to play The Bad Guy, the “cop,” the disciplinarian. Having to set limits and rules and boundaries.
Once upon a time, Jim and I would have thought, maybe Charlie will just ever understand what we’re telling him. Today it was so apparent that he not only understood the flag concept, but that he was peeved: Why couldn’t he swim where he wanted to? Isn’t one wave as good as the next? And Charlie really is such a good swimmer, sensing every wave as easily as breathing and just as at ease under water as floating on it; Jim and I are klutzy landlubbers, compared to the Kingfish. But rules are rules and, the ocean being the ocean, a parent must err on the side of caution, and so the glorious swim out to sea that Charlie wanted to undertake after the lifeguards had left was curtailed, and he was not happy and told us so in wordless ways.
Later on, after Charlie (very tired, and tanned) was sound asleep, we were watching Michael Phelps and Usain Bolt. We watched them win; we watched their cameras pan over to their mothers, screaming cheers and victory dancing in the stands. Most of us mothers and parents aren’t going to see our kids compete for Olympic medals but I know we cheer as less hard, we rearrange our lives in pursuit of something bigger, we give up so we can give all, we gain.
I see Charlie in the waves and I feel that glow of victory. Because we’ve, he’s, worked so hard and persevered; kept trying; managed to endure; simply glories to be in his element working his body through the water or on the race course, and beams with pride at what he can do.
This vacation got off to a slow start. But we seem to have hit a groove, found our pace, and are moving onward, faster, higher, and stronger, even at high tide in big and crashing waves.
I wrote a post a little while after Anzac Day; (My Granpa is a Rat of Tobruk) where I compared the medals awarded for bravery in battle to what we special parents have to get through each day.
We may have chosen to be parents (or soldiers) but we didnt actively choose to be in a situation where we had to call on that extra bit of initiative and bravery that gets a soldier a “medal of honor” but a parent “through another day”.
So I suggested we start awarding ourselves medals for achieving the milestones like toileting, standing up to a bureaucrat and winning a few more hours of home help or just getting a good night’s sleep.
I also like to think of the sprint vs the marathon. The teachers and tutors have to have the fast twitch muscles to get the best out of the short times they spend working, very effectively with our kids. And then they can take a break and plan some more.
We have to have the slow twitch muscles, the stamina and the mental ability to keep going. Not so fast or effective in the short term at teaching or introducing new skills to; but absolutely crucial in maintenance, fluency and retention.
And remember, the marathon runners come into the stadium for the final lap; to the cheers of all their supporters, regardless of the final result.
xx
I really appreciated this post! It was beautifully written! And I’m proud of Charlie too!
I remember the sprinting feeling when I first heard about diets and treatments and recovered children and how “early intervention” makes all the difference. Now, I see it less in terms of marathons – the idea that the race never ends was exhausting. I needed a mental picture that gave me a chance to enjoy the breaks here and there that bring so much beauty to our lives. Now I think more in terms of hanging out in the ocean. Some days, the waves swell with a storm and it’s all we can all do to just hang on for dear life. Other days, the water is calm and we get to enjoy the scenery all around. Either way, the experience is powerful and nothing short of amazing in how it changes each of us, always (eventually) for the better.
“We watched them win; we watched their cameras pan over to their mothers, screaming cheers and victory dancing in the stands. Most of us mothers and parents aren’t going to see our kids compete for Olympic medals but I know we cheer less hard”
We cheer less hard? Guess you should have seen me on the finish line yesterday when Alex took almost 13 minutes of his personal best time in a very grueling (HILLY!!!) 25Km race. “Cheering less hard”? No!
@jypsy, thanks for catching that, should be cheer AS hard! Way, way, way to go, Alex!
@laura, can only repeat your last sentence: “Either way, the experience is powerful and nothing short of amazing in how it changes each of us, always (eventually) for the better.” (And am going to write about vaccine safety—am slow to get to it due to being on vacation!)
Honestly Kristina, your blog is more helpful to me than any autism support group or listserv I have ever participated in. This post brought tears to my eyes–especially “But everything, absolutely everything, is better—shimmers gold—thanks to a boy named Charlie.” This exactly how my husband and I feel about our son.
I cannot thank you enough for what you do.
“I see Charlie in the waves and I feel that glow of victory”. Yes! Yeeesss!
A wonderful summary to a great post.
I love when you talk about Charlie in the ocean. It reminds me that we all have gifts and as parents, we simply need to let our children find their own — yes, we will guide them and help them reach their goals, but it’s all in there, inside the child, whether he is NT or not.
Keep enjoying your vacation! xo
Great post, glad the vacation is in full swing. I miss those fun days of swimming at the jersey shore.
Beautiful post oh and welcome to the parent club where nagging has a life time membership.
Kristina, you and Charlie keep me going. You really do. Thank you for all your posts.
Lovely post that I can relate to on so many levels.
I can totally relate to your story, as a mom of two autistic children (both on different ends of the spectrum) and appreciate you sharing your story. I too share mine as well on my blog–it’s the stories that we hear and share that truly help us learn and grow and to become the “greatest” parents.