Tuesday, January 10, 2012

Ben update

A quick update on Ben. He's back at school and happy to go. He's able to sit for 30 minutes or more to do his Kumon, which is quite remarkable because in the past it was hard to keep his focus on anything for more than about five minutes. It's still hard for him to write but he does it. He's still early on in the Kumon reading program but he got 90 per cent on his test at the Kumon centre before Christmas.

We started him on math, which has always been a challenge. He's able to do addition adding '1' and is learning to add '2' (some of these sums he's memorized). Because he doesn't speak and never wrote, he's never been able to 'play' with numbers the way other kids do. So I'm happy he's just becoming more aware of numbers. It is hard work for him and he has to 'think' about it whereas other kids seem wired to learn their numbers and basic math skills automatically (they can keep all kinds of numbers in their mind at once and manipulate them easily).

Ben gave some really cool ceramic pieces as Christmas presents this year. He made them in his ceramics class at school. I know he's not crazy about the class due to his sensory issues but I loved the aqua vase I got with fish and bubbles on it.

We got a bath bench so that I don't have to lift Ben in and out of our claw foot tub. He can sit on the bench, which is placed level with the edge of the bath, swing his legs over, and he's in. I was secretly thrilled when he got out and put on his pajamas by himself (even if he did leave about five towels on the floor).

I had a call yesterday from an adult hospital that will see Ben for dental when he turns 18 in March. A scary thought. Most of the services we've received under one roof here at Holland Bloorview will now be accessed at multiple adult hospitals where staff won't have the same understanding of youth with childhood disabilities.

Ben had an episode of bad pain in his right knee that kept him up for hours one night last week and left him limping for the next couple of days. This is on the knee that wasn't operated on last year. He has huge bony growths around both knees and I assume one was pushing against a nerve or in some other way bothering him. We haven't had that kind of pain since before his surgery more than 18 months ago and it was a frightening reminder of the constant pain he'd been in before. All seems well now so hopefully it was just a blip. I don't like to think about possible surgeries he may need in the future -- and in particular having them done in an adult hospital.

Ben is still in love with the cowgirl Jessie from Toy Story. I feel pressure to 'push' him into more age-appropriate interests, but then I think: "Why shouldn't he enjoy what he enjoys?" But I can see how it sets him apart from other kids. For example, at Christmas he was disappointed when his younger cousins weren't interested in watching Halloween Town 2. I had encouraged him to ask them if they'd like to watch it and he had his heart set on it. But everyone wanted to see Harry Potter.

I'm reading him the third book in the Harry Potter series and he loves that. In fact, at a recent scary part involving a dementor he put his hands over his eyes, then signed: "I can't look!"

He did have a fabulous dinner at his aunt and uncle's house before Christmas. He chose to rent the movie Cowboys and Aliens for that night.

I am grateful that Ben is in school during the day and I don't like to think about how we'll create meaningful days after age 21.

How are your kids doing??? Louise


I so enjoy hearing about Ben and his daily life. The way you wove this update in with your own feelings and concerns was brilliant, Louise. It's so hard not to have a counter to every good thing, right? I can't imagine anything but good for your Ben, though. It seems that with his family's help, he will continue to climb over obstacles, however difficult, and thrive.

Thank you Elizabeth -- it is people like you who give me confidence and inspire me to keep doing the best I can for Ben. Hugs to you and Sophie! xo

What a lovely look at Ben. Thank you for sharing it. He seems to be maturing so much and finding his own pace. It is so difficult to see our children in pain. I hope it eases for both of you!

He really is growing up!

I have so enjoyed being a part of your families life Louise, it really does my heart well.

Watching Ben grow up, gives me a joy I can't explain. He has both you and D'arcy in him and it shows. He is funny, serious, likes to be challenged, will try new things (with some encouragement) likes to dance, is smart and is a good friend, he gives the best hugs. It is nice to now be spending what are adult days with him as we go to bars and he makes friends with hostesses, asks them what's on the menu and orders sweet potato fries and crab cakes, which he eats!

I would be proud to be his Momma, he is one great guy!