I've been thinking about the big things lately: the past, and what it means, the future, and what it will bring, and, most importantly, what's happening now. For a long time after the diagnosis, we lived in a sort of siege state: running from evaluation to evaluation, therapy to therapy, hoping for the magic sign (or someone) to tell us it was alll a big mistake; he's just a late talker, he's just shy, he's just on his own schedule.
Isaac is in many ways at the edge of the spectrum: he's become verbal, he's blessedly free of medical issues, he's social (with adults), and sometimes we even forget a little that he's different. But if he's tired or ill, or going through a growth spurt, or in a new environment, or around other children, he can become very stimmy and remote, and it all comes rushing back: yes, he is a different kind of child.
At a certain point, we moved from the initial period of crisis into something new, something that felt a little different. Oh yes, I finally realized, this is autism. This is your life on autism. And that has brought a whole host of realizations along with it. Sure, some things are better. Isaac continues to learn and grow and surprise and delight us. We're no longer obsessively over-analyzing everything he does. We've moved into a state of acceptance, and of (generally) knowing how to deal. But there are some other important realizations too. A simple cold can throw us all into chaos. I was starting to look, and feel, tired and haggard all the time. We need to eat better, get more sleep, exercise and generally take better care of ourselves. We need to find time to enjoy what we're doing, right here and right now. We need to move past the siege state into something more manageable for the long term.
And that is the crux of it: learning how to live, really live, with an autism spectrum diagnosis. Last week it included a trip to the steam trains for Isaac, a trip to the gym and record store for Daddy, and a cool new pair of jeans for Mommy. This morning, J. will take Isaac to the local farmer's market, where he'll eat fresh peas right from the pod and demand a challah roll from his favorite bakery. Tonight we have a babysitter and we're going to see the new Harry Potter movie and then have dinner together. Oh, and actually talk. To each other. In about five minutes I'm going to do three sets each of sit-ups and push ups, and a few yoga stretches, to get my blood moving and welcome the day. (How can I do this, you ask? Everyone else is still sleeping). It's small, but it's progress, and that makes it feel huge.
Take care, my friends. Do something nice for yourselves this weekend.
Hooray for you! Yes to all of it. And a brilliant reminder to stop, look, listen and take care.
Posted by: kristen | July 14, 2007 at 08:11 AM
Once again, Susan, you have captured the very essence of where I am/we are in our house! In a moment rife with irony, I was about to post a comment earlier when the phone rang--- the hairdresser calling to make sure we were OK b/c I had missed Nik's haircut this morning since he's sick. UGH! We dashed off and got to see Ms. C one more time before she has her baby but it was a stressful "Seige-like" feeling. Never seems to be time to simply relax and BE and when we do, seems something plops into our laps. Sigh...
Hope you enjoyed your yoga this morning. I got to go to the gym while Nik & Daddy went to the playground. Whew! I needed that.
Posted by: Niksmom | July 14, 2007 at 11:17 AM
I am glad you are feeling good with where all of you are at. Re-read this post on the bad days, to remind yourself that life with a quirky kid is pretty good most of the time. If I have any wisdom five years post diagnosis, it is that it gradually gets less sad. Despite the diagnosis, Isaac is still going to be delightful, and he is still going to find people in his life who will appreciate and love him like you do.
Posted by: Rachel Norton | July 16, 2007 at 01:20 AM
Lovely post. I am a big fan of treats for parents!!!
Posted by: jennifergg | July 16, 2007 at 02:10 PM