October 27, 2009


Last night when I picked Alex up from play practice she very deliberately got in the car, put down her book bag, and told me her plans for the evening. They included – and in this order – dinner, a little TV, homework and bed. Happy to say – that’s how it worked.

Plans are good for Alex. I print out our weekly schedule and put it on the refrigerator every Sunday night. If perchance, I am late, Alex will ask for the calendar. And if perchance, I forget one of Alex’s activities she will write it on the calendar for me. I must admit this helps me just as much as it helps Alex. One week at a time - that's how we get through our lives.

Alex is very adept at organizing her life - but needs to see things in print. She is a visual learning - like many people with down syndrome. Audio learning is a bit more difficult for our kids - I think it is too abstract. This translates to school where, just like all kids, Alex needs to be taught in the way that she learns. This mostly happens, and if it does not Alex gets lost, cranky and uncooperative. This is always my first clue that her classes are not going well, and it is time to intervene.

Lately Alex has been overly responsible about her schedule. She shares with me know exactly where she is at what time. Alex has a cell phone and we programmed all our numbers for her. In the long run this is a good thing – but she has learned how to hunt me down in this order – cell phone, home, work, and as a last resort- John's cell phone. Seems she can reach me whenever she wants to let me know what she is doing. This is a good thing.

Not only has Alex been diligent about her homework recently, she has been pleasant and cooperative. Sometimes it really does feel like she is 16, except for that addiction to the Disney channel. She is fun to be around, more about her humor later, gets up without a fight in the morning, packs her own lunch and yells at me if we are late for school. Just like any other kid.

Despite our recent loss - Alex has been on this upward journey for the last couple of weeks. I have my fingers crossed – but I do believe we are currently hiking up the mountain. We may cross a plateau soon – but as described in “Mountains, Valleys and Plateaus”, it is all part of the adventure we are on. We dream about the mountains and celebrate when we arrive. It is such a rewarding time for me as a parent of a child with special needs.

In the past, these mountain hikes have lasted for a month or two - then we find ourselves on a plateau. As far as I can remember, or perhaps would like to remember, the valleys are below us. I know this does not mean we will not find a valley in our future - but these new valleys will be higher up the mountain than the previous ones. People with down syndrome never stop learning - just like everyone else.

Learning and growing will always happen in Alex's life - and just like everything else it takes a bit longer. But, I know the rewards are so great - it is well worth the wait.

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