Thursday, June 14, 2007

The Leap

Posted by Aliki.

I’m posting here because I so badly want to write some things down and can’t on my own blog yet. Perhaps one day I will, but for now I welcome having the opportunity to post this on the back porch, as it were, and thus relieve a little the need I have to write about this and perhaps share it with my blogging friends who know me.


My son swam a little for the first time yesterday. He is almost seven and has been holding back for over three years—taking little tentative “steps” towards swimming; afraid but ashamed of his own fear. The water has tormented him—the kids dancing and diving in the deep end have taunted him. But yesterday he swam a little. As I watched I saw that unmistakably his feet left the bottom of the pool and I saw two slender ankles kick out against the water—briefly--but kick out they did, it all the same.

Mama I swam! He shouted, his gap-toothed grin shining from below his blue goggles. I swam!

On the walk home from the pool he asked what day it was.

It’s the 4th of June, we told him.

The 4th of June! He exclaimed. We need to mark this down as the day I learned to swim!

I did mark it down, and in my mind I made another mark. For yesterday was also the day I spoke for over 30 minutes on the telephone with his school psychologist and learned that the head of the autism team had diagnosed him with Asperger’s Syndrome—a form of high-functioning autism.

For the past year we had suspected as much, but had shied away from going down the testing road. We were afraid of labeling him; of causing more harm by perhaps compartmentalizing him into a category that could shape and define him for perhaps the rest of his life. But because of how at times desperately difficult things have been this year—particularly this past winter, we felt suddenly out of our depths. His behaviors were interfering with school—not academically, so much, although we feel is capable of much more than he is able to produce—but socially. In other words, the social side of school has become so difficult and almost unbearable for him at times that he’s developed many disruptive and upsetting behaviors to combat this and is often in a heightened state of stress and anxiety. It has been sad to see and very, very difficult.

I’m not sure what I’m expected to feel about all this. Nothing has changed with this official diagnosis yet, in a subtle way, much has. I also have this strange feeling of having done something wrong in going through with all the evaluations. Perhaps we should have left it alone, kept our fingers crossed, gritted our teeth and hoped for the best. I feel overwhelmed.

But I want the best for my son—not in terms of material success, good jobs, or even many friends. I want his days to be better—I want him to have more happy moments than painfully anxious ones. I want him to go to sleep at night and not wake up in terror; I want him to not feel so burdened by every little thing, with the need to control most aspects of his life to the point that it is physically destructive to his own health.


Yesterday at the pool I watched my 6 1/2year old son jump for the first time from the side of the pool and into the water. His body tensed—held back—but he gathered himself and tumbled into the water, popping up seconds later, wet and triumphant. It’s taken him years to build up the courage to do this; I watched him and thought about how it might always take him years to finally get the courage to do what most kids—even his sister—might do unhesitatingly, quickly and over and over again. I don’t want to keep him beside me always—that would sadden me. I want to see him take the leaps, feel the surge of confidence, look a stranger square in the eye; and—most importantly—go through his day and not feel that the world is pressing uncontrollably in on him. Life itself will not be difficult for him; it is the people in the world who will present problems for him; it is the mess of society—a society that moves too quickly and demands too much—that will hold him back, push him further into his cocoon, overwhelm him constantly.

I wish all days for him from here on out could be as uncomplicated as a day by the pool; the water clear and shining, the moment only about the leap, and the happy plunge into the shallows.


Anonymous said...

I'm so happy for your son. What a huge success. I'm tearing up as I read your post.

You sound like a fantastic mother. Trust yourself and know that you are attempting to do the best for your son. Having this diagnosis allow him so much more support in the public school system. What a great thing!

flutter said...

You and your boy are so so beautiful

Barbara said...

That is so great! Every accomplishment will build more confidence. Don't beat yourself up over the testing, the known is less scary than the unknown. At least now you can face it head on together.

Bea said...

Aliki, I saw your comment about this at Mouse's place and I've just been wanting to give you a hug!

I do think that diagnosis is helpful. Everything I've read suggests that treatment - though imperfect - is better than no treatment. Even adults who are receiving a diagnosis today will often say that it would have made a huge difference to know and understand these things when they were younger, instead of just wondering why they were different the whole time.

Sonia Wetzel Photography said...

This was so beautifully written!

I have a special needs kiddo, and while their issues are different, so much of what you said is familiar to me. The not wanting to label, feeling overwhelmed, society being the enemy to a large degree. My thoughts are with you as your family adjusts and you find YOUR normal. Your eloquence in writing tells me that you will be an excellent advocate for your son, and that this will get easier as time goes on.
Also....YAAAAAAAAAAAAY on both the swimming and the leaping into the water! WOOOOOT!!!!

Anonymous said...

All three of my best friend's sons have some form of autism. The oldest has the same form as your son. He's 10 years old now, and most of the time you would never guess that he is autistic at all.

I'm so happy for your son, that he could do something he's been afraid of. I hope that next time it will be a little easier for him.

Anonymous said...

I have a deeply anxious child. She is only just 3, and almost everything seems so hard for her. We're on the cusp of beginning testing, particularly for Sensory Integration Dysfunction, and I have wondered myself if testing and labeling is the right thing. I suppose it is, but making the choice has left me feeling tangled inside.

And when you wrote the following passage, well, I couldn't have said it better.

"I want his days to be better—I want him to have more happy moments than painfully anxious ones."

Thanks for posting this.

Aliki2006 said...

Thanks for the comments so far...Bub and Pie, I'll take the hug!

Amy, my son has always been deeply anxious as well and has always had sensory issues. I wish, actually, that we had done something sooner--I think we could have understood his view of the world better--or sooner, at least, and I do feel some guilt in this. But we struggled so with it all and it wasn't until he started school that we realized we/he needed more help.

Anonymous said...

I think you're doing the right thing. Help is good.

And I'm proud of your son. I was ALWAYS too afraid to take my feet off the bottom of the pool or to jump in. Still am, mostly. (I learned to float when I was 12 but I still can't really swim.)

ewe are here said...

You've done the right thing. Early intervention and treatment can only help him. I hope it leads to more happy days than anxious ones for him, too.

I'm delighted he's learning to enjoy the water. So healthy!

Anonymous said...

Hi there - this is my first comment, but this post hits close to home. My twin brother has Aspergers Syndrome. It was difficult to grow up with him, to say the least. He wasn't even disgnosed properly until he was 16 or so (we're 28 now). Yes, it's true that many things will be a struggle for your son, his social skills will never be what you hope them to be, nor his fine motor skills (my brother still can't tie his shoe laces properly). But my twin, he is very smart, he graduated university, he lives on his own, he has a parrot, he functions just fine. My parents never thought he could be an independent adult, as they were so used to doing everything for him. So, know that everything will be OK. Your son sounds very sweet, and very amazing. Embrace who he is, and try not to worry about his future. You won't be able to change his anxiety, compulsions, or rigid behaviour, but with your love, he will suceed.

Anonymous said...

First off, WHOOT for him swimming! That's a huge accomplishment. As the mother of a handicapped child (one with autism, but not Aspergers) I understand your worries and concerns.

It's a good thing to have the diagnosis, because with it he can get the treatment and therapies he will need to help him learn how to cope with his enviroment. And it will help you too.

If you'd like to talk with another parent who has an older (16) son with Aspergers, try Em at:

My best wishes to you and yours.

The City Gal said...

Anonymous with twin brother that has Asperger Syndrom, could you please get in touch with me?

I am 28 and I have 25 yr old twin brothers and I think one of them has Asperger but was never correctly diagnosed!

my e-mail is

Bon said...

Aliki...good for him for jumping in. and like B&P, i will say that the little i know suggests that treatment really is better than none...i worked with a number of kids with Aspergers about ten years ago now, and the treatment they were in was focused mostly on addressing the control and anxiety issues.

sometimes, i think the kids who find this mess of a society too much for them are the ones who really see most clearly.

hugs to both you and him.

Liv said...

We in this predicament so understand one another. I look at my little one and wonder what lies ahead. I have gotten to the point where I don't even feel it matters what we call the problem---it just matters that we're proactive about providing him with whatever he needs to be his best.

I'm so proud for your swimming adventure. I hope we get there one day! Best to you both

Niksmom said...

Wow, what a milestone about the swimming. I have a little one with special needs *including* autism. There's a wealth of information (both good and bad) out there when/if you are ready for it. There are also TONS of wonderful blogs about our awesome kids and the lessons and challenges. In the final analysis, your son is still the same boy he was yesterday; now you just have some ideas of where to look for new/different tools to help him be the happy boy you envision. Best of luck to you both.

Jaelithe said...

Your son is so lucky-- he's got a great mom.

Best of luck to you both.

NotSoSage said...

Aliki, what a wonderful accomplishment for your son and a milestone for you and your family. I don't know much about it, but I do know that you are nothing if not a dedicated, knowledgeable advocate for your family. You have nothing to be ashamed of.

More hugs coming your way!

Aliki2006 said...

Thanks so much everyone--thanks.

Mary said...

Wow, beautiful post! My nephew is autistic, and has problems with language. Since he started in a special needs school, he has progressed and learned so much. As with your son, Gabe is overcoming his fear of water and has been taking swimming classes with his dad.

there have been great advances in the fields of autism... don't give up hope. My nephew wasn't speaking at all 1 1/2 years ago, and now he is talking in complete sentences.

I know his autism is different from your son's. Reading your post made me smile. I know that your son is going to go very far in life having you as a mom.

Sarah said...

aliki, i have no idea how i missed this. but i know you to be a fabulous mom, and he will thrive (and has already thrived) under your care (for example, his swimming!).

yes, it's a label. but it's only a label. how you perceive it is completely within your control.

hugs to you.

Domestic CEO said...

One of my twin sons has Asperger's. He is five and was diagnosed last year. The diagnosis ultimately was a relief for me. Now we knew the reasons behind most of his behaviors that were driving us crazy!

Congrats on the pool. Come check out my blog or e-mail me if you ever want to read about our adventures with AS.