Friday, February 3, 2012

A Different Lifetime

Peter, age 4
Do you ever look back on certain periods of your life and wonder how you coped?

Today, I read Ruth Schwarz's blog, "the mom" where she outlined just ONE of her days caring for her special-needs daughter Davy as well as her three sons, and it brought back memories. She writes,

I had to leave the house by 8:30 to get to Davy's first therapy (OT) at 9. had to secure a sitter (thank you Heather) and a ride to and from preschool for Harper. Went to Davy's second therapy (pt) at 10. Then had to jam over to CHOC by 11:15 for her feeding therapy. Then had a speech evaluation right after that.
And that's just her morning; she and Davy didn't make it home till six.

Such is life when you have a child with special needs. And it is exhausting, completely draining.

I have a frozen-in-time image of sitting in a waiting area at the Ottawa Children's Treatment Centre (OCTC) (about which I cannot say enough good things!). Peter, who has Asperger Syndrome, had back-to-back appointments for occupational therapy, physical therapy, and speech therapy.

Emily was just a toddler and she was bored. As a single-income family, we couldn't afford to hire a sitter while I took Peter to his appointments.

What others may not realize is that all of these therapies for a child require parental involvement. I was not just sitting in an uncomfortable lounge chair reading year-old magazines. I was learning and working along with Peter, and was expected to continue these exercises at home between appointments. (I failed so often, though I always started out with the best intentions.)

It is not physically arduous, but it is emotionally draining: my inner dialogue kept hoping he would surprise us. My outer dialogue quietly encouraged him without making him feel like he was disappointing us. I was also conscious of wanting to impress the professionals by what a Good Mother I was, or at least have them feel I was adequate.

And, really, Peter's needs were quite minimal, compared to many of the kids seen at the OCTC. He was able to walk, dress, and feed himself. He could talk in full sentences and make his needs known. But he was behind on all the milestones, and there was an emotional/psychological aspect to his disability that I found hard to explain.

This was at least a year before he was diagnosed, so at the time, we were just dealing with an interesting array of challenges. In some ways he was so close to "normal" that I wondered if I were not making things up or exaggerating things. But, to me, he seemed vulnerable, so I kept pushing for help.

Peter has made great strides, and we are so proud of him. Those days are so far away, but surprisingly immediate in my mind. I sometimes still feel like that exhausted, young mother.

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