Friday, September 30, 2016

I can't catch up

A month ago I decided I couldn’t keep adding things to my to-do list.

I wanted to spend more time with my son learning and modelling how to use his Speak For Yourself app, as well as adding content and purchasing a mini iPad as a dedicated device.

At the same time, I was in the process of hiring a new support worker; trying to get my son an opportunity to work with animals on a farm; organizing personal training and physio to help with his curved spine; implementing new exercises at home (they should be done daily, but that’s fallen apart); arranging to have an oxygen monitor overnight so we could check on his breathing; driving across town to get a new lift put on his shoe; taking his clothes to be altered since he doesn’t fit standard sizes; and buying him a fancy electric razor. In addition, I did a CCAC assessment and redid the cumbersome, mind-twisting SIS assessment for Developmental Services Ontario, to reflect his new diagnosis of scoliosis.

Inhale. Exhale.

Given these demands, I decided we’d drop Kumon for a month. My son usually goes once a week and does math and reading books during the week. This would give us more time for the voice app.

It is now the last day in September, and I can report that we’ve made a teeny tiny bit of progress with Speak for Yourself. I purchased a mini iPad and I then ordered my husband to set it up because I didn’t have the brain power.

I figured out how to back-up my son’s profile, and I added the word “stupid” with an image I pulled off the Internet. He kept signing “stupid” when I tried to get him to wear a pair of adapted Tommy Hilfiger khaki shorts I’d bought online. The word wasn’t in the pre-programmed vocab, so I figured he’d need it. He does use the device to ask his dad to play Lego Dimensions with him. But I need to spend a significant amount of time getting more familiar with the device, programming it and modelling it.

I also need to get some kind of case or holder for the mini iPad.

I’m working on the BLOOM e-letter and our care-tip for October is about teaching life skills. The first step is to “start early.” As I edited the story I felt a twinge of inadequacy. I wished I could turn back time and try all of that again, with a younger son.

I suggested my husband and I have a discussion about life skills, with an emphasis on consistency, and he said, “Well, one thing we are consistent about is our failure as parents.”

Then I read this piece by Sue Robins called So Much Lemonade. Sue and her family moved from Alberta to British Columbia earlier this year so she could take a family engagement job at a children’s rehab centre there. Due to a lack of supports for her son, who is 13, she’s just resigned. A short school day (9 or 9:30 to 2:30) and lack of after-school care made swinging work, home and advocacy for her son impossible. “I fear,” she writes, “the only people that care about these issues is us. And us are tired. Really tired.”

“If Sue can’t do it, who can?” I posted on Facebook. And I thought: Maybe I'm not the only one who feels like I’m running a marathon, and that no matter how hard I try, the finish line keeps moving.

Today Boston author Susan Senator posted on a similar theme. Her book Autism Adulthood came out earlier this year. Since then, her 27-year-old son, who was living on his own with support, returned home when it was discovered he had unexplained broken ribs and bruising.

She writes: “I feel a little sheepish when people ask me to give talks about Autism Adulthood. I feel like Didn’t they get the memo? I failed Autism Adulthood! I already have to rewrite parts of that book, for God’s sake.”

To be honest, while I wish only the best for Susan and her son, there was a tiny part of me that was glad that another parent was acknowledging just how tough supporting our kids in adulthood can be. 

Louise Kinross


I am indeed feeling it's tough, and would muse more about all the reasons for that
if I had energy and time to spare. I wish caring for caregivers were a social norm.

I hear you loud and clear. Each situation is different. I’ve learned a few things. After being way too hard on myself for not setting up a dream life for my kid, I started looking around and realizing that no one has a dream life: not me, not my neighbours, not my other kid. So I dropped the concept. I do what I can. My biggest focus is getting my adult child and myself used to having other people care for her so that when the inevitable happens, it won’t be a shock to her system. The rest…if letting it go won’t kill her, then it can be let go.

You are all doing fantastic jobs, great parenting. Sometimes what we want is simply not achievable for us and our children.

My only suggestion to all parents with children who have disabilities is to have as strong as you can make Plan B which involves money for future care under most trustworthy people for when you are no longer able to help your children. If it's just extra and unneeded, wonderful. A windfall. But if needed it can make all the difference in the world in quality of life for your children

I'm still hoping that my child will be self supporting and sufficient. But he s in his 30s and I am getting old. Plan B looms as ever so important. Presume competence, enjoy the awesomeness but prepare for the worst.