Thursday, July 29, 2010

Bowling for Smiles


Both of Mary's sister left for Girls camp yesterday. Usually that makes Mary sad - she misses them. But...
Yesterday was a good day with Mary. And, to make it even better, she was invited to Kristen's birthday party at the Bowling alley.

Years ago, when Mary was in High School, she loved to bowl. Loved it. LOVED, LOVED, LOVED it. Did I say she loved it? It completely delighted her, plus, she was pretty darn good at it. Well, bowling is one of those things that Mary no longer wanted to do during her regression. SO..., I wasn't too sure if she'd like this bowling party thing.
Mary & sisters in the van

I worried for nothing. From the time we got there and got her shoes on, to the time she went to bed last night, it was BIG smiles. So happy. Giggling. She still loves bowling, obviously. Plus, she loves her friends. Kristen and Cindy are so good to her. They watch out for her - maybe because they are older - they feel protective of her.

I am grateful for good friends for Mary. I am grateful for bowling and all the other things that Mary loves again. Looks like we'll be doing this for Family night more often in the future!

Wednesday, July 28, 2010

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.