Monday, September 07, 2009

Disability is Natural, Part II

It is hard not to notice that Bridget's development is delayed in comparison to other kids her age. What that actually means depends on who you are asking. I honestly don't care much where she falls on a standard development scale.

In general, it seems to me that Bridget is thriving--she's happy and healthy and fully able to do many, many things. There are times, though, that it seems like she would benefit from some extra help to reach a goal (of hers) or something she is already clearly working toward herself.

And that help is out there. And it is being offered to us. Do we reject help because it is tied to the "service system" and because accepting the help means we would have to "buy in" to the service system mentality?

I don't think so. We do, though, need to have a clear vision of what place "services"/"therapy"/"help" have in our lives, and what they mean for our children. We need to realize that we (parents) are a huge piece of the puzzle, and that we set "the tone" for our child's early life.

As many of us have already learned, a spotlight on development can be a constant reminder of deficits--and of differences. Too much therapy and focus on what a person cannot do happens at the expense of celebrating what the person can do, and what he or she has achieved. It also often happens at the expense of offering a person the typical experiences that we all need and deserve to have.

People with disabilities are often offered different opportunities in school and in life because they are seen as different (or worse yet, incapable--or worse still, "less than") which, in turn, keeps them isolated rather than encouraging them to be a part of things. If we're not careful, we can unknowingly accept this--and even encourage it--by our enthusiastic participation in early intervention programs and/or extra therapy sessions. If we're not careful, we can--without even realizing it--effectively begin to treat our kids as different and in need of help to make them more like their peers.

Chris and I have thought a lot about "therapy" and services over the past three years, and how best to make use of help that has been offered without somehow underestimating Bridget or pushing her unwittingly into a "special" life--a life of being different. We don't see her as "broken" and in need of fixing, but if we're being realistic, it seems clear that she will benefit from targeted teaching and extra help (all kids do in one area or another).

We want Bridget to have every chance to live a full, healthy and happy life, to develop meaningful relationships, and to have lots of experiences and opportunities. We know we have to find the delicate balance between giving her the support she needs and not placing emphasis on her challenges.

We had a great early intervention experience (a true partnership with her EI team), and I'll write more about that here later (I'll print the text to an article I wrote recently about the subject). There are many valuable aspects in having a team of developmental specialists to help support a child's learning and overall health.

But it is interesting that we see the most development in Bridget not when we've had a lot of "therapy" sessions, but rather when we're on vacation (over the Holidays, Spring Break, Summer break) or when we're with extended family for several days in a row. It is when she is exposed to lots of different people, of different ages and interests, personalities, etc.--or when she is provided numerous, rich opportunities to explore, interact and experience life--that she really seems to thrive and grow.

To be continued...

**Lisa at Finnian's Journey has several great posts up about parenting a child with a developmental delay, and about the book Disability is Natural by Kathie Snow. If you have a chance, visit this page for more background on Kathie Snow and her philosophies.


  1. I totally agree w/ your post. We use therapy as a supplement to what we already do in our daily lives with John Michael and his 3sibs. Some weeks I wonder why we do therapy because there doesn't seem to be any benefit, but sometimes it's nice to have reassurance that he's on track or if we have questions about something. But nothing takes the place of our day to day family life and outings. Therapy is just there to make sure we're moving in the right direction.

  2. Perfectly stated, as usual! We too had a fabulously collaborative and positive EI team with focus on all that my daughter can do and would be able to do! I consider myself very fortunate. Even our school IEP meetings have been more positive than not- usually a festival of all of her accomplishments. I too notice leaps of development during the summer especially. I tend to think of those times as consolidation periods- when all of the pieces that have been learned fall into place in a more whole way. It's fascinating just to be witness to isn't it?

  3. Balance -- that is the perfect word in all this.