One of the things you learn quickly when you have a child on the spectrum is that ASD takes no breaks. It's 24/7, including evenings and weekends. You can't put it on hold for a while to catch up on sleep or get the house clean. It's relentless. The cruelty of this is that no one needs a break more than the parent of a child on the spectrum, yet no one has a harder time getting one. I am relatively lucky as my son is so mildly affected. Our daily lives have never been as challenging as they can be for families whose children have full-criteria autism.
However, I have been on a ride for the past nearly 5 years that just hasn't let me off. In order to stay sane under circumstances as these it is necessary to find some sort of escape, however brief or delusional. Eating treats late at night helped for awhile, although this diminished in effectiveness when I began to follow the special diets as well. Even on the SCD I do still find ways of indulging such as peanut butter with honey, but it just isn't the same as a big dish of chocolate ice cream. Getting lost on the Internet late at night has been a favorite of mine, and judging by the level of company I find there, a common favorite for others as well.
Every now and then I have found time to watch TV, or better yet a movie, that is in no way related to the spectrum, special diets, the toxicity of our environment, or the degradation of our food supply. These times have been few and far between but very sustaining. Recently, my husband brought a DVD home from the library about extreme sports. Wonderful, I thought- what an escape. As I watched the beautifully filmed images of people climbing glaciers, surfing 35-foot waves, and being dropped off by helicopter to ski down sheer mountain cliffs, I thought that what they were doing was probably about as distant from my daily routine as I could imagine. I reveled in finding such a complete escape from the world of our everyday challenges.
As the film progressed, we began to hear interviews with the athletes. They explained as best they could why they choose to do these things, why they are drawn to challenge themselves in such ways. Only by leaving behind the everyday world, some explained, could they really find out about themselves. By taking on increasingly more challenging goals they discovered what they were capable of- they found freedom in knowing that they had as yet not met their own limits. Some talked about how they learn self-reliance, problem solving skills, and gain a deeper understanding of human nature, and how these are things they bring back with them to their everyday lives.
Several athletes talked about how embarking on an adventure for them was like stepping out of time- they would go to a place so far removed from our normal experience, both physically and mentally, and what they experienced there had the power to transform them. They returned from this place with a sense of themselves, how they fit into the world, and what they were able to do that is just not attainable without such extreme experiences. Suddenly the film was no longer about something so removed from my life, I knew exactly what they were talking about. If you are fond of reading ASD blogs, you have probably read many accounts like the above. Parent X was just living a normal life- maybe going to school, maybe working, maybe already raising neurotypical children, and then suddenly they find themselves living a different kind of extreme sport.
I've heard a number of other parents describe the time following a diagnosis of autism as feeling like time had stopped, or feeling as if they had been taken somewhere outside of time. Like many families our lives were consumed by my son's challenges and what to do to help him. Recently we have begun to re-emerge from the isolation and indeed it does feel that time has continued for others in a way that we have not been part of. It's as though we had been transported away to some strange place and have returned transformed. Living through this has fundamentally changed me and our family as a whole. When my son was first struggling, I remember feeling sorry for him that he had a mother who just didn't have it in her to fight for him the way he needed. I had no idea what I was capable of until I was challenged in such a way as this. I guess that's the silver lining in all of this- I never would have chosen to be pushed out of an airplane (which is what this felt like), but when you are falling the only thing left to do is to learn how to fly.
I will leave you with a quote that we heard at the beginning of the film:
"Somewhere, out there, in the oceans and the mountains, is a place where time does not exist. When we get to that place, there is a voice in us that challenges us to go one step further. And those who find that place, and then return to the presence of others, become the speakers. They are the messengers"
Well, I would add that for some people that place can be found right here in our own homes. I have been to that place, and I have a message
Sierra Ansley is the mother of two children, one of which has Hyperlexia. He is now close to recovery thanks to dietary and biomedical intervention.