I’ve been asked this innocent question many times in the last couple of days. My standard answer has been that it was good. Why wouldn’t it have been good? I was lucky enough to spend most of it at the cottage with the kids, getting lots of time with my extended family, eating way too much great food and visiting with good friends on the lake.
And it was good. But it was also very exhausting. There was no lying on the dock reading a book. There was a lot of pushing and pulling a wheelchair on uneven ground, around tree roots and over rocks. There was a lot of lifting Deane into and out of boats and stabilizing him on flutter boards in the water. Then there was the regular lifting and care of looking after a disabled 14 year old.
This was the first summer I did not have any help. I have been lucky enough up until now to have a series of wonderful caregivers who have come up to the cottage with us in the summers. They not only help with the physical demands of being out of the city, but have also been wonderful at engaging Deane in everything from reading books to swimming and going tubing. Unfortunately, they have all moved on to full-time and/or better paying work.
This year, I tried many avenues to find at least part-time help. I put an ad on the website of the nearest college that has a personal support worker program. I called the local community care agency and followed the few leads they could give me. I spread the word through friends. Nothing.
Finding care for disabled children is difficult and time consuming at the best of times. Some families are lucky enough to find someone who can meet their needs and they don’t let them go. Obviously families’ needs vary, but unless professional nursing care is involved, the methods of finding someone are rather hit and miss.
Deane’s needs are not medically complex. He takes some medicine, but it is usually mixed in with his food. He needs help with feeding and most other daily care, including diapering and dressing. As far as that goes, most nannies and other caregivers could do the job. The hard part is you have to be able to lift him out of his wheelchair. He is small for his age, but lifting upwards of 65 pounds in a 4’6″ body that may or may not help you is not something everyone can do.
I’d also like someone who like a camp counsellor knows how to get a sometimes reluctant participant outside and doing stuff. This is what I had, but I realized it’s asking a lot.
My friends have told me that I need to get more serious about finding help during the year and for next summer. I hear them, but I’m just not sure how I’m going to do it. Any suggestions?