I had a strange realisation today. My latest bruising encounter with the education system (more later) led me to mull over all sorts of things today, sifting through experiences and discoveries to try to find a way to communicate more effectively with "them", to be taken seriously.
I went back to "the beginning"; just over 5 years ago when, 7 months pregnant, my 2-year-old was diagnosed with autism by a pediatrician in an office at the Children's Hospital. We left with a recommendation to see a speech therapist and little else.
I went home that night and got on the computer, looking for information. Where did I look? Amazon.com. Today is the first time that I have wondered why on earth I did that? Because I had no idea what organisations existed; Amazon grouped books together, sometimes offered reviews ... it seems utterly pitiful now, despite the fact that it worked. I only read one book before S was born, and it was a fantastic book that happened by some enormous coincidence to be located at my local library, all the more extraordinary since I don't know a single other person who has even heard of it: The Science and Fiction of Autism by Laura Schreibman. I'm sure this is not the first time I have mentioned that book in this blog. But it is the first time that I have felt outraged that the diagnosing specialist could not have even put a pamphlet in my hand with a summary of what the disorder was known to consist of, or even better, a support group's contact details.
As it happens, it was several more years before I picked up anything that referred to Asperger's Syndrome, because no-one explained its relevance and I was barely functional enough with two difficult infants on my hands to process any information. So instead, when I was able to read anything, I tormented myself with information which was in many ways of only tangential relevance to my son. Certainly, with some guidance, I might more quickly have understood that he would keep developing, changing, and that there was much that we could do to help. Instead there was fear, fear, fear, and grief, which there would have been anyway. But the fear might have diminished if it hadn't taken 2 years to find a pediatrician who regarded it as part of her role to support the parents.
I feel a surge of activism coming on. More next time on my experience today.
Monday, November 28, 2011
Thursday, November 3, 2011
A strange calm descends ...
The mind is a fascinating thing, is it not? I've been trying to figure out how I've gone from feeling markedly inadequate to the most calm and in control for a long, long time indeed, a real sense of being grounded, centred -- pick your metaphor/cliche.
I notice almost month by month how my boys are growing up and getting on with their own interests and interactions with less intervention from me; we all needed to get to this point so badly. Nevertheless, forf a couple of weeks my habitual 2 days to myself were unavailable, and I became very tired. In fact, I slept a lot, even for me. There were some ongoing health issues, the usual disrupted nights with kids, but I was remarkably unrefreshed by the extra rest.
Is it a gender thing, or is it specifically me, that my reaction to this was to beat myself up? To find myself hopelessly unable to cope with the day-to-day world and normal wear and tear? That's how I was by the time I took both boys to a birthday party in a play centre not long ago. A play centre; i.e., a place where kids jostle, knock, wrestle and occasionally shove each other, but where the action is generally good-humoured. I hit a low as I watched P gallop like a big puppy towards any group of kids he liked the look of; he's so open, so warm, it's so hard to see the older kids pause with unfriendly expressions and turn their backs. But even worse was watching S turn red with rage at every friendly attempt to play -- a ball thrown in his direction, a bump on the bouncing castle, a hand to his arm or shoulder ... I felt that some part of me was going into overload. After what felt like an eternity of boy-monitoring, I walked away and sat down. It was too much, watching this inexplicable fury at a birthday party.
As it happened, after food, all the kids' mood changed. Things got calmer, and S got friendlier. A welcome surprise.
The next day I finally woke up and felt awake. It was the last day of the school holidays, and I was to spend most of it alone with the boys as Q was visiting his father. I don't know why, but I sat P down and had a talk to him about his diet. I found pictures of food with protein, and I brought out small quantities of things he could choose from. He ran away, he howled, he blocked his ears, he sobbed. I admit that by the end my calm was exhausted and I felt angry and resentful at my failure to get him to eat, but I went shopping later and brought back a few other options, this time with success. Very small, but success nevertheless.
In a variety of ways since I woke up that morning, I have felt more in charge again. I don't quite know what has shifted; whether it is the simple overcoming of exhaustion (including remembering to take my iron supplements!), or hitting the bottom of that parenting spiral where I had to walk away from my own helplessness, or whether the boys' behaviour has shifted again in some fundamental way that I have yet to identify, giving me more much-needed mental space. Whatever it is, more please!
I notice almost month by month how my boys are growing up and getting on with their own interests and interactions with less intervention from me; we all needed to get to this point so badly. Nevertheless, forf a couple of weeks my habitual 2 days to myself were unavailable, and I became very tired. In fact, I slept a lot, even for me. There were some ongoing health issues, the usual disrupted nights with kids, but I was remarkably unrefreshed by the extra rest.
Is it a gender thing, or is it specifically me, that my reaction to this was to beat myself up? To find myself hopelessly unable to cope with the day-to-day world and normal wear and tear? That's how I was by the time I took both boys to a birthday party in a play centre not long ago. A play centre; i.e., a place where kids jostle, knock, wrestle and occasionally shove each other, but where the action is generally good-humoured. I hit a low as I watched P gallop like a big puppy towards any group of kids he liked the look of; he's so open, so warm, it's so hard to see the older kids pause with unfriendly expressions and turn their backs. But even worse was watching S turn red with rage at every friendly attempt to play -- a ball thrown in his direction, a bump on the bouncing castle, a hand to his arm or shoulder ... I felt that some part of me was going into overload. After what felt like an eternity of boy-monitoring, I walked away and sat down. It was too much, watching this inexplicable fury at a birthday party.
As it happened, after food, all the kids' mood changed. Things got calmer, and S got friendlier. A welcome surprise.
The next day I finally woke up and felt awake. It was the last day of the school holidays, and I was to spend most of it alone with the boys as Q was visiting his father. I don't know why, but I sat P down and had a talk to him about his diet. I found pictures of food with protein, and I brought out small quantities of things he could choose from. He ran away, he howled, he blocked his ears, he sobbed. I admit that by the end my calm was exhausted and I felt angry and resentful at my failure to get him to eat, but I went shopping later and brought back a few other options, this time with success. Very small, but success nevertheless.
In a variety of ways since I woke up that morning, I have felt more in charge again. I don't quite know what has shifted; whether it is the simple overcoming of exhaustion (including remembering to take my iron supplements!), or hitting the bottom of that parenting spiral where I had to walk away from my own helplessness, or whether the boys' behaviour has shifted again in some fundamental way that I have yet to identify, giving me more much-needed mental space. Whatever it is, more please!
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