Tuesday, July 22, 2008

Unanswered Questions

It's still difficult to see adults with Down syndrome. Lately, I've run into some groups of disabled adults at the park and at the mall and there is always at least one or two adults with DS. It's very surreal for me as I look at them and then look at my baby. I don't think I've noticed as many Down syndrome adults in the past five years as much as I do now. Lately the groups of people I have seen are severely impaired and have the very typical behaviors that are often associated with severe disabilities. Their group leaders escort the adults through the mall, holding their hands or escort them to the park picnic tables where they all sit quietly with little or no interaction. This is so terribly difficult to see. I can't help but wonder.... what kind of childhood did they have? Are these the babies that were sent away to an institution? Are these the babies that were more severe and the parents weren't able to take care of them? Where do they live now? Are their families at all involved? Did they have services early on to help them achieve their potential or were they just left alone to fend for themselves? I have so many unanswered questions.

What is so strange is that I have always been around disabled people and I'm typically very comfortable around this population. My major in college was Recreation Therapy and some of my first jobs were working with disabled children and adults. For over 8 years I worked with all different types of patients in every setting imaginable from disabled day camps to stroke and head injury clinics and children's hospitals to state hospitals with criminally insane men. I wouldn't say it was my calling but I've always had a place in my heart for the disadvantaged. I think somewhere deep down inside I always thought I might have a child with a disability. My mom and I have always sought out babies who have Down syndrome at church or at big public gatherings. I remember when pregnant with Joaquin, seeing an adorable infant with DS at a San Francisco Giant's game and my mom and I were mesmerized by him, pointing him out to Hector. I have always been curious about these children and loved their beautiful smiles and pretty eyes. I can even recall thinking and even saying to Hector, early on in our relationship before we were married, that we were the type of couple that would be given a child with Down syndrome....with my background and his experience with his nephew. He doesn't remember this conversation but I do. It's still surreal to me that this is now my reality. Even my mom who is a neonatal nurse has always said that her favorite babies in the nursery are the "Down's babies" and now she has her own.

But it's the adults in group settings that I still am challenged by and I'm a bit ashamed of it to be honest. I know I shouldn't pity them but I do. I guess what makes these recent experiences so uncomfortable for me is that I never want Joaquin to be "shuffled" around. With my background in Recreation Therapy, I know that there is a reason these adults are escorted around and taken to malls and parks. It's called life enrichment and normalization, but now as a mother with a child with DS, I see it as just the opposite. I know these adults probably weren't offered early intervention services or quality interactions as babies and young children. The life these adults lead is still valuable, of course, but all I see is the loss of potential and what could have been. I know that the future for Joaquin can and will be very full, active and enriched and hopefully this is the case for most every child born today with Down syndrome, as it should be. In the near future, I hope to see more adults with DS walking independently in the mall or with friends and family shopping where they want to go. I want to see adults with DS taking their own young nieces and nephews to the park to play and to push them on the swings. That is normal and that is life enrichment. That is my hope for Joaquin.


Joaquin in his new crawling track

Wah Keen!


Marcy said...

Just remember how blessed you are for the knowledge society has gained of the potential for children with special needs. Because of those parents who brought their children home and tried to give them the best possible is the reason we have so many resources available to us today for our little ones. I believe our children will live very full lives because of the early intervention they get today and because of our knowledge and resources.
You are a great mom-a perfect one for each of your children.

Hector & Jennifer Varanini Sanchez said...

So true Marcy!

I hope not to offend anyone with this post. It is certainly not my intention. I am grateful for the lessons we have learned from the past and hope to start a brighter future for every child born with DS.