Friday, March 11, 2011

Feel the fear, and do it anyway

When your child has disabilities, there are times when you feel vulnerable and exposed.

February and March have been those kind of months for me.

It started with Ben’s psychological assessment – something I’m confident strikes terror into most parents of children with learning problems.

You hand your child over, not certain what the outcome may be, yet knowing how an IQ score can close doors, lower expectations and marginalize your child.

To get around that, we didn’t do IQ testing. Instead we looked at where he is academically, and at least in terms of reading, there was some good news.

Next month we have an IPRC to look at Ben’s school placement. I anticipate this with some trepidation because I’m used to being told that no good options exist for my son and his complicated needs.

On the one hand, I want a program that focuses on literacy and numeracy, and that can’t happen in the life-skills program he’s in now. But on the other, I worry about the stress of a new program on such a complicated kid (better the devil you know, they say). At least in his current program he’s safe.

I’ve wrestled with whether to hire an advocate for the IPRC, but at this point I’m hoping his regular psychologist can attend.

I've booked a session with Community Living to bring people together to help Ben plan a rich life. I’ve been told about the benefits of ‘circles’ of support since Ben was four. But I’ve always avoided the need to ask others for help – to make myself openly vulnerable.

With Ben turning 17 later this month, I don’t have that luxury anymore.

But there’s a part of me that would rather pretend that we’ve got everything under control and can manage on our own. A colleague once surprised me by saying: “You’ve handled everything so beautifully with Ben, not all families do.” And I thought: “If you only knew how it feels on the inside sometimes."

Ben’s weekly physio just came to an end. He’s been doing physio since his major hip and knee surgery last year. He’s at a point where he needs an exercise program, but he doesn’t need the expertise of a physio.

I work out at a club, and I thought it would be a great idea to get him a membership. His physio agreed. But then I had to think about the comfort level of this club. I’ve never seen anyone with a disability there. What if they weren’t willing to take him on? What if the other members weren’t welcoming? What if people I knew there were surprised to see I had a son who was different? What if they couldn’t believe he’s 16, going on 17, when he looks about six years old?

I put my confident face on, met with a club rep and signed him up. He’s going to have some personal training sessions after March break. He won’t be able to use most of the machines because of his tiny stature, but the treadmill will be good for him, and I’m hopeful he might be able to do some light free weights. But to be honest, I’m petrified. He’ll resist it at first, but I’m hoping he’ll start to associate it with the exercise ‘high’ he gets following physio. And I want him in a mainstream setting. It seems that the only programs open to him now are segregated.

I’m going to meet with someone at Community Living next month to learn about what services are available to Ben as an adult. I don’t want to do this, because I don’t want to acknowledge that he is almost an adult, and that he won’t have the same opportunities as other youth to make choices about his life. I don’t want to put him on wait lists for segregated programs I don’t believe in.

I’m still hopeful that somehow we can carve out a meaningful life for him without relying solely on traditional services. But I know we have to cover all the bases.

I’m also looking for a reading tutor for Ben. Because he can’t get the reading instruction he needs at school, I’m hoping to find a tutor. But as soon as I start explaining the fact that he doesn’t speak and uses sign, it tends to flummox people. I have to ignore a negative voice inside that says 'it’s too late.'

And I’m meeting with a life-skills coach here about whether Ben could attend a program in the summer. They include things like learning to take transportation, cooking and making friends. I kept putting off this meeting because I was afraid I would be told that Ben was too disabled to attend. So I e-mailed the coach explaining my fear. She spoke to another colleague who worked with Ben at a sailing program and they suggested a program called Making it happen – which is the first in a series. I hope it will work out.

And remember that blog I wrote about Scrabble the other week? I sent it to my brother. He responded in a very open, compassionate way, and we’re meeting next week to discuss further. But...I’m afraid. It's easier to keep up a pretence of invulnerability.

I chose the picture above because it was taken just after I lost my hair to a bizarre auto-immune disorder called alopecia nine years ago. Talk about exposure! For a month, I stopped going to the exercise club, because I didn’t want anyone to see me bald.

When I finally did go back, I wore a hat. But in the change-room, I knew there would come a time, after workouts and a shower, when I’d have to take the hat, or a towel, off my head. I would unwrap my head and in my mind I would count to 10. That was the extent of how long I could handle that vulnerability at the beginning.

I liken all of these steps I’m taking with Ben to removing my hat and acknowledging who I am.

Hopefully, in time, taking these risks with Ben will become easier, in the same way that I can now move comfortably about the club change-room – without my head covered!


Hi Louise,

Time goes by so quickly, and often I find myself living in the "what I should do or have done" place for far too long. Escaping that place and moving forward is not always easy and I respect what you've revealed in this post.

Little by little we move forward, and as risky as it may be, I think time softens the jolt of change. I do hope that you and Ben and your family can develop a life that makes Ben joyful and productive. We all could use both!

I love your comparison of how you coped with letting the world see you, without hair, and that of the risks involved with Ben's future. Again, you move me and make me see how important it is to move forward.

I don't know where you live, but have you considered contacting a school for the deaf to tutor your son in reading? They are used to all kinds of challenges, and wouldn't even bat an eye when you explained what you're looking for. At least I hope they won't! Another option would be to see if your local university has a deaf education program -- and see if there's a student who would be interested in some creative tutoring.
Sign me -- teacher of the deaf for way too many years.

taking ourselves by the hand and going through all the challenging steps which confront our fears- is not easy, but of course necessary. thanks for reminding me of this and sharing some of your courage via vulnerability.

Thanks for sharing your journey here Louise. I always enjoy reading about your experiences and perspective.
I 'came out' to a colleague at work who has a child with CP. When I made jokes about how horrendous our experience has been he told me I was handling things well. I assured him this was not actually the case.

A bit off topic, but I wonder if you could tell me where you got the lovely pink cap you are wearing in that picture. A close friend has recently lost 95% of her hair to alopecia and has been anxious about going to yoga class etc. where she can't wear her wig.
Thank you so much!

Thank you everyone -- I've been tardy in responding.

Lianna -- I read this interesting post related to getting stuck in regret in Gratitude in Grief, by a mom who lost her young adult son:

Anonymous -- welcome to BLOOM. Ben is complicated in that he's not deaf - he has a moderate hearing loss -- but he isn't able to speak and uses sign language (but a lot of it is modified because he has poor fine motor skills). So he can hear and can benefit from some phonics -- but it's hard for him to express what he can read if he doesn't know the sign for a word (as we aren't fluent). However, I had contact with a reading tutor who has worked with some non verbal kids. So I'm hoping we may give her a try and see what happens. Thanks for your input.

Tekeal, I thought of that when we were going to the club last night -- I have to hold my own hand!

Lisa, I think there are all kinds of pressures on us to appear that we have it all together.

And beauty obscure -- I have a wonderful friend who crochets my hats. I would check out -- and look in the crochet category under hats -- there are many craftspeople selling crochet hats there and you can order them online.