July 28, 2010 - First Post - a little background

Summer. What a summer it's been. Trips to Wisconisin and to California - with all states in-between. We've never done so much driving in so little time before. Mary has weathered it well. I'm not saying that she wants to take any more trips right away, but she endured it well.
This past spring, we connected with a wonderful woman who has a 33 yr. old daughter, who like Mary, has Down Syndrome. Her daughter, Cindy, can do amazing things. Like; she can play the piano and takes violin lessons. She talks and reads and sings and even reads music. She knows rudimentary Spanish through classes that she has taken. She leads a very full life. This woman introduced us to NACD - National Academy for Child Development. NACD has been a part of Cindy's life since she was but a baby. It, and her wonderful supportive family, are the reason Cindy is so accomplished.

Enter us. Since leaving High School, and the subsequent diminishing size of our family, Mary has been in severe regression for the past 6 years. SERIOUS regression. One year ago Mary would often refuse to eat. Some days we could barley get her to get out of bed and get dressed. She lost weight, stopped talking, making eye contact, or even smiling. She had no interest in us, her family, in interacting, or participating in activities which she had previously enjoyed so much.

I quit my job this past winter. After much thoughtful and sincere prayer, I knew this was what I needed to do, even though it would be a strain on our already tight budget. But it felt right, so we took the plunge. After just a few months of spending increased time with Mary, we began to see some improvements - smiles, hugs. But, I was lost. I was home with her, but what do I do now? What activities could help her the most?

More prayer. Enter my friend and her daughter, Cindy. (There's more to this than meets the eye - another story for another day) Since that time - in April 2010, we have applied to NACD for an evaluation - which will happen this August 18! In the meantime, Mary has gone over to their house where we have put together an "interim" IEP for her. She swims, jumps, spins, swings just to start off. Then we have puzzles and words, counting, games and interaction with her new friends, Cindy and Kristen. Her progress has been amazing - even with this interim program. She makes eye contact again, smiles, plays on the computer, gets dressed by herself and more.
And so, even though on most days, I still don't know what I'm doing, I carry on. Even though my youngest is almost 16, here I am, "home-schooling" my Mary. I'm a little scared and nervous, but I'm excited too. This blog is our diary of our journey together. We both have a lot to learn.