Monday, August 8, 2011

The UP Side of Down Syndrome

Blogaholic Designs”=So, I said on my profile and later in my blog that I would try to educate the reader about all things Down syndrome, and so here I am trying to do so. First of all, Down syndrome is a form of mental retardation that is associated with an extra chromosome on the 21st pair. In other words, instead of two, there are three; thus, Down syndrome is also called Trisomy 21. The degree of mental retardation among this population varies widely, and abilities also vary. Much of what these children and adults accomplish depends on how early intervention and developmental learning is begun.

Though my uncle has Down syndrome, I did not know him very well; when I married my now-wife, she had a daughter with Down who was (at that time) 26 - now 38. Becoming a stepfather to a grown daughter is challenging; becoming a stepfather to an adult daughter with Down syndrome who still lives with her mother was more than challenging. I am very pleased to say that over the past 12 years we have made it work, and she and I are very close and get along about as well as any father and daughter! I've made adjustments in my expectations, and she has worked very hard to get over her jealousy of my spending time with her mom (they were alone without a "dad" in the house for 20 years before I came along).

My daughter is bright, social, determined, and very active. She participates in many Special Olympics events, works as a volunteer for a nonprofit organization, is involved in a Best Buddies program at Vanderbilt University, reads and loves music, and exercises every day. She has no major health problems, though many people with Down syndrome do. We are very fortunate. She works word search puzzles, and she is so good at them that she can finish a whole book of them in no time flat. She is interested in everything, is very self-sufficient, and contributes a great deal to the household.

We are members of the Down Syndrome Association of Middle Tennessee (for which all three of us volunteer and participate in fundraisers), and I am a member of a local D.A.D.S. (Dads Appreciating Down Syndrome) group. Being a parent to a child/adult with Down syndrome presents some unique challenges, but I would not change her or our family for the world.

Like most people with a disability, my daughter is more like "typical" (we don't use the word "normal" - who among us could claim to be normal, and in fact, what does normal mean?) people than unlike them, and I just wanted all my blog readers to know how proud I am to be her DAD.

2 comments:

Syndrome Mom said...

What a wonderful experience you have given your step daughter. Your life will be well rewarded.
I plan on reading your book on my kindle. Will pass the word around to others. Hope to see your next blog soon. I know how hard it can be to keep this up.

jmrinaldo said...

Thanks so much! I appreciate your comments, and I would be very interested in your thoughts about my book.
Joe