Saturday, May 12, 2012

Living with Ambiguity

Navigating life with a special needs child requires learning to live with ambiguity.  I'm a trained scientist who likes to put some order into our ambiguous lives so early on this journey I started reading research outcomes from clinical trials.  Specifically, I was looking for outcomes vs. various therapies.  I found that scientific trials are often not available on many therapeutic options and, if they are available, often none of the children in the study are similar to my child - a child with multiple handicaps.

Disillusioned with the available information I found it more productive to reach out to other families with children similar to Emma.  Sharing our experiences helped me narrow down which therapies we wanted to pursue further.  Some we liked, some we didn't.  All of us were trying numerous things at the same time so we couldn't uncouple the results, but we often had pretty strong feelings on what was working better than others.

Through our research we found one practitioner we thought would be a good addition to Emma's routine.  So we went for an extended evaluation and asked lots of questions.  The practitioner lived far away, was expensive and not covered by insurance but still we thought we might want to try it out for a few months.

Emma started to make amazing progress!  Her head control made a great leap forward.  And it wasn't only us that noticed the change.  Loved ones, teachers, therapists, and random acquaintances mentioned it to me all the time.  It is still not perfect but it is much improved over what it was only two months ago.  Her sitting has also taken off.  While she isn't sitting independently she needs much less support in sitting.  Taken together it represents remarkable improvement in her gross motor skills that came on suddenly.

The interested thing is that life happened and we weren't able to fit that practitioner into our schedule.  Emma made these gains without adding anything new to her routine.  Maybe it was all her hard work over the last few years that came together to give her better control.  Maybe it is related to her getting a bit older.  Maybe it is related to her new wheelchair.  The truth is I'm not sure why she made these gains and I'm beyond thrilled about the remarkable improvements she has made.

Had we added that practitioner to our routine I would have attributed the changes to that person and therapy.  I'm actually quite glad that life happened and we weren't able to match our schedules for a block of therapy because if that didn't happen I would never have known that Emma would make these changes without the extra intervention.

Living with ambiguity is one constant on this journey through life.  While I'm still not great at it, I'm getting better at it everyday.

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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at

1 comment:

  1. I couldn't have put it better myself. I love this blog and I've linked mine to yours. What a powerhouse of experience and information we parents are especially to the newly diagnosed.

    When my son was diagnosed with Type1 diabetes, when my other son was diagnosed with Asperger's and ADHD, we knew NOTHING. And no one helped us either. It was trial by fire all the way but I decided early on that we were NOT going to be victims.

    I set about learning everything I could about state and federal laws to support our requests for accommodations and services and I feel proud that we are at a point now where we can effectively advocate for our children.

    Keep up the good work Moms and Dads...a lot of folks need us!!!!