Tuesday, February 22, 2011

A life of being, having and doing enough















I read about this book and my heart softened for a moment, and I took a deep breath in and out.

Doesn't it sound grand? A life of being, having and doing enough.

Wouldn't it be sweet if we felt we were 'enough' as parents of children with disabilities and that our children were 'enough' as well? Not 'enough' in the sense of 'good enough' -- but really, we wish we and they could be 'better' -- but 'enough' in the sense of 'full,' complete' or 'whole.' 'Enough' so that you could look at your child and only feel gratitude swell in your heart?

Instead, this morning I found myself feeling frantic about moving Ben's development forward.

I haven't had time to revise the communication app Proloquo2Go on his iPod and to actively get him using it. I gave the iPod to Ben on the weekend and he deleted Proloquo (a mistake, he said). My husband then spent ages trying to put the app back on unsuccessfully. He then attempted to put it onto the iPad I bought at Christmas, even though we couldn't afford it, because I thought it was a piece of technology Ben had to have. In doing so, he realized our Mac computer at home was incompatible with the iPad because it's so old.

So by the time I got to work I was feeling desperate that I HAD to buy a new Mac computer. In fact, I found myself in a place I've been so many times over the years with Ben. Where I latch onto some treatment or technology or experience that I believe will be life-changing for him. And I tell myself that if I can only get my hands on it, he'll be able to break through a disability barrier and realize himself more fully as a person. And I launch into all kinds of mental arguments as to why this is the only viable course of action.

Yet when I look back, I see I've sometimes made choices that weren't wise and didn't make sense -- or focused on the wrong things at the expense of others.

And it makes me wonder about finding a balance between forever questioning what 'more' can be done to help my child (in my case almost an adult) and starting from a place of loving and appreciating who he is, right now, and what we already have.

Reactions:

7 comments:

"...loving and appreciating who our children are and what we already have."

relates back to enough-ness, doesn't it? such good and important questions. hug to you, xx

I hear ya, Louise. I struggle in the same way with this.

Louise I think it is natural for us to want to do all we can for our children.
Even with typical children, it is not always easy to know where to draw the line

Julia can do things with the ipad that stun me. a worthwhile purchase, but it would drive me nuts if she kept erasing stuff...

Lisa

Same here! I've been umming and ahhing about iPad or other tablet or whatever for more than a year wondering whether I'm being realistic or just hoping that the latest gadget really is what we need.

The latest update of some i-Tunes iPod thingy, now gives an option where "deleting apps" is only activated through settings. Have you updated your i-tunes?

Hi,
Please email me at support@proloquo2Go.com and I will do whatever I can to help you get Proloquo2Go set up just the way you want.
Pam Harris
AssistiveWare Support Team

Hi Louise, I wanted to comment here last week when I first read your post. Just getting to it now. I feel the same way you do all the time, if just get Ashley, this or that it will make a difference. I like to think that is why she has come so far. I think those frantic moments push us into action. I talked Ashley Augmentative Team at CTN last week to converting her Communication book to the iPad and Proloquo2Go. It going to be the first book they create on the iPad and they told me many families had been asking. Ashley is lucky #1 not sure how I got that advantage for her but I did.

We need to buy the iPad and like yourself not really sure where the funds will come from .. I'm thinking of selling a few things on kijiji and Zach list. But there is always VISA if it comes down to it. I believe it will take her 2 year or 3 years to figure it out but I don't care i want to start. I'm crazy I know but I feel it's necessary to push her forward.

I love that last comment from Pam I'll being using that email too. Just had to let you know we all have those moments and I think it's a good thing. Otherwise we would be settling and we wouldn't do that for our typical kids either we push them forward too.

Sherry