Tuesday, September 15, 2009
When I attended the RDI two day conference, I heard a phrase for the first time, "crisis mode". Although I had never heard this before, I understand exactly what it meant and how it related to the world of autism. Dr. Guthstein asked the audience who among us would take a 2 year old the grocery store willingly. He was shocked by the small number of hands that went up. "That's really sad", he said, "because it means non of you know what it's like to be out of crisis mode". He went on to talk about the importance of attitude and how it effected your child and the importance of getting out of "crisis mode". So... What is crisis mode? In my experience, it isn't necessarily brought on by tragedy but usually by change. Transition is hard and I'm not just talking about our kids on the spectrum. I felt this when both of my children were born. When they were newborns I would have nightmares about them falling off cliffs or getting run over by a car. I would wake up frightened and look over to make sure the baby was o.k., with my heart beating fast I would watch and wait for any sign of abnormality and when none came I turned over and went back to sleep. As the kids got older I found my panic begin to subside and we all settled into a routine but what happens when you have a child on the spectrum? For those of us that had a child who regressed you feel this brief moment of normalcy followed by chronic worry. When does it end? I don't know. Just as I've never really been able to meditate, I've never really understand being completely out of crisis mode. I listened to Dr. Guthstein's words... they made sense. Of course, your children are effected by your own state of panic, why wouldn't they be? Remember when you were a kid and how it felt when your parents were upset? Don't get me wrong, I'm a pretty laid back person. Most days we live our lives and I don't spend time with my child thinking "he's autistic". I just see Aydan. I see his smile, his personality and I feel his warmth. It's just sometimes I hear the clock ticking. When people tell me about the "window of opportunity" in autism, I say "hogwash". Do you really believe a child is incapable of change beyond the age of 6? That's absurd. Is it optimal to have early intervention? Sure, but that doesn't mean that at 4 years old my son has peaked. To say it out loud sounds ridiculous but in my heart... I'm scared. I know in many ways I am extremely fortunate to have a child like Aydan. He's affectionate, he eats well and he's a smart boy. I know all of this and would advise a friend in my position not to worry and to know that many great success stories didn't occur until 5 or 6 or even 40 years old. This is what I say and this is what I believe as a thinking person but as I a mom what I feel is different. I want to feel that sense of calm that "aah, the house is clean" or "my work is done" or "you passed the test", feeling. I do at times but it never lasts. As a logical person I think, "of course, it doesn't last, people change, things change, life is about change". Yet what I feel and think are seldom the same. I want that but I wonder is it ever going to be attainable to me? I know that I am doing what's right, the best I can...right? Am I missing something? Is it only kids of the rich that recover? What is recovery really? When I ask myself that I am reminded that recovery is merely a label as is Autism, ADHD, Dyslexia, Mental Retardation or whatever other label our kids are saddled with these days. The labels aren't for us, they're for the insurance companies, regional centers and school districts so they can determine whether or not your child is eligible for services. What I want for my son is that he be happy. I want him to have friends, to have a good life and to feel good about himself. This is why I find myself re-emerging back into "crisis mode". I want out but I don't know how to do both. I don't know how to relax and take it easy and still help my son. Until I learn that I find myself reeled back into "crisis mode" like a fish on a hook.