Friday, August 6, 2010

Finding the right groove

Hannah has said some pretty amazing things lately. Yesterday at breakfast: "Even though I have a disability, I'm still happy." She's so matter-of-fact about it and meanwhile, my heart is being squeezed so tight I think it might burst. She must be going through an almost-five-years-old phase of realizing differences in other people and herself, and trying to make sense of it but without all the added baggage of that will probably be heaped on when she's a little older (like right now, it's all about noting things but not internalizing them, what a great space to live in, huh?!)

Another one of Hannah's gems: "It's okay if people have a disability. It's not sad, or bad, it just means they need a little extra help."

I'm so glad she is expressing what we try to tell her all the time: that she is different and some things are hard, and that there are other people who are also different and have things that are hard about them. But that there are a lot of things she can do that aren't hard for her, and we all have things that are hard and easy. And that's life.

It's tempting sometimes to take the "you can still be and do anything you want" approach, but I'm very sensitive to the potential perils this can bring. I've read a lot about people with disabilities sometimes feeling like they have to be "super amazing", overcoming all kinds of obstacles to do things people didn't think they could do, etc etc and that some folks just wanted to be an average Joe who didn't WANT to feel like they had to live up to these big expectations.

I also don't want to sweep Hannah's difficulties under the rug so they are not acknowledged. I definitely don't want to be a downer and focus on what Hannah can't do, and we are constantly offering up opportunities for Hannah to try out all kinds of things But I feel like it's really important for her to know that if she decides some things are just too hard to do, that's totally fine and also, to acknowledge that it SUCKS that some things are really hard for her to do.

I do hope that in our quest to introduce Hannah to a world of opportunities, we find something (or things, plural) that she can do with little or no effort, things that are just where her natural talents lie. Because while it's awesome for all of us to stretch ourselves and do things that take hard work, it's also awesome to feel naturally competent and confident in something that we just seem to do effortlessly.

In this process of helping Hannah to find her groove, I'm grieving some for the things that we most likely will NOT do as a family, or do with the ease and regularity I would have liked, if we didn't have a kid with a physical disability. When I fantasized about having kids, I pictured introducing all of my favorite things to them: canoe camping in remote wilderness spots, snowboarding, going on big hikes...things that we could adapt in some fashion so that Hannah could participate, but that will not be like what B and I used to enjoy doing before we had kids.

Maybe all parents have to do this to some extent: you help your kid to find their rhythm in the world, and are super excited when it matches your own lifestyle, preferences, etc. and are maybe not totally psyched, and maybe even a little bummed out, when it is the polar opposite of how you would like them to live their lives.

But through this process I think you also get introduced to new rhythms, new experiences, new ways of moving through the world, and that's pretty cool too.

So that's what I'll focus on, because in the slightly amended words of Hannah, the wise sage, "My kid has a disability, but I'm still happy."


Cary said...

What a totally cool post! I love it!

Everyone keeps asking us if Ben knows he has CP...and nope, we're not there yet...I don't think he even realized at all that he's "different". This post makes me feel better about the time when he starts to realize it.

Danielle said...

Your post makes me so happy, I'm welling up. :) I have spastic quadriplegia CP, and I cannot tell you how difficult is to try to sell parents (and the general public) on the idea disability can legitimately be viewed as a difference of body, and not a loss of the "normal" body I was "supposed" to have.

So, thank you for all the frustration you are saving Hannah by teaching her self-acceptance. It was my who taught me to see the flawed negative thinking in expressions like "confined to a wheelchair", and when I compare that to a friend of mine whose parents told her that she was "acting too disabled" when she decided to get a scooter- I think my mom gave me a huge gift.

I'm 20, living independently, and earning a degree in psychology. I still don't think I've fully found my groove (working with attendants is a SKILL not developed overnight), but I know I what I'm good at, and what I want my life to be like. My hope for Hannah (and every disabled kid) is that she will know themselves too! It sounds like you've given her a good start.

Anonymous said...

I saw a piece on ESPN just last night that I think you might appreciate. It's about a surfer with Asperger's and how his condition actually makes him a better surfer because one of the hallmarks is the ability to uber-focus on one thing. You can watch online at They also interviewed his mother extensively and she talked about how for so long she just wanted to be able to give his condition a name, not to protect him, but to understand him better and allow him to succeed in whatever way the condition allowed him to do. I thought it was a powerful example of a mother's love and also the kind of balance you are talking about finding a way to strike. -Marlisa

BusyLizzyMom said...

Wow, I can't believe she said that, my heart would have broke and melted at once. She has this way of thinking because of how you are raising her; teaching her to be herself and to be accept herself. Elizabeth has not mentioned her disabilty yet but I am sure it is coming.
Finding something that Hannah can excel in is so important but also so hard. I was just reading our new Fall Parks and Recreation book and I could not find one program that Elizabeth could do on her own. I do have to really try to find something that makes her 'work' and just something she can enjoy.

Heather said...

K-you are a wise, wise, woman. :)

Anonymous said...

Agreeing with others with the thought that you are incredibly balanced parents. Well done.