Monday, October 26, 2009

Best Buddies

We have attended a number of interesting events this Fall. One of the most uplifting was participating in a humongous Buddy Walk sponsored by the Down Syndrome Association. This annual event attracted almost 5,000 participants this year.

Sarah’s friend, Gwen, first introduced us to Best Buddies and the Buddy Walk while she was a student at the University of Texas. Gwen has known Walker most of his life, and during the years she has lived in Memphis she has invited him to be her Buddy at the walk several times. Gwen majored in Special Ed and is now a great mom to three adorable children…and is back in Memphis where I hope she stays!

Steffen and Walker attend this walk every year, because they’re definitely Best Buddies. This year, at Gwen’s prompting, I formed a team of Walker's Walkers and ended up having a wonderfully warm crowd of supporters attend, including Gwen and her children. Many thanks to those who donated and/or walked with us. These are the friends and family who walk with us most every day, our Best Buddies, and for them we are truly thankful.

As I surveyed the crowd I saw families of all kinds with children and adults with Down Syndrome. I could relate to every one of them, because at one time or another I was that new mom with her baby in a stroller walking with her husband, checking things out. I was that mom chasing down her toddler with Down Syndrome while carrying a newborn baby in her arms. I am that mom of a young adult, still hoping he'll show good manners and be cordial to our guests. I don't think I realized how many of us there were until I saw so many at the park that day.

One of the best parts of the day was seeing Company D perform.

Darlene Winters, who was Walker’s speech teacher and drama coach at Madonna Day School for a number of years, directs Company D, and has has been trying for quite a while to get Walker to participate in the group. Between work, the time demands of being a member of the performance group, and Walker's total lack of interest in dancing in public, this just didn't seem to be in the cards.

Last week Darlene sent me an e-mail asking whether Walker would like to go to Dollywood with the troupe. He could be her assistant and provide tech support and he would travel on a bus with others his age, spending two nights in a hotel. I knew what his reaction would be…”No way!”…but I signed him up anyway. He’s off on Thursday for his first outing with friends in his adult life, and he’s actually beginning to be excited about it.

He has been reassured that taking a day off work isn’t a big deal because his spending money won’t be decreased. He has agreed to do his laundry and get his cell phone charged on Wednesday night instead of Thursday. He has been reassured that he won’t miss Halloween. He’s ready to go!

I will say a little prayer for the safety of the group, and hope that it leads to Walker realizing that having Down Syndrome isn’t always a bad thing…sometimes it leads to Dollywood! Perhaps he’ll come home with a whole group of new Best Buddies. I'll let you know.


Wednesday, October 14, 2009

I Want to Retire Too

During a recent family dinner son in law, John, came to the table where big Walker and I were seated and told us he had a message from Walker III. “He says to tell you that it’s too hard being an uncle and working full time, so he wants to retire like Da.”

I called Walker over, and his eyes were teary. “I was afraid to tell you, but it’s just too hard,” he said with a definitive tone to his voice. I never pursued why he had trusted John, his greatest nemesis most of the time, with his concerns, but he did and I was glad. I'm not sure what had been going on that made being an uncle a particularly demanding job at that moment, but he does take his responsibilies very seriously so we just dealt with the employment issue. I'm still not sure whether something at work might have precipated this meltdown or if it was the chaos of living in a house with five kids for a few days, but something had definitely blown his world apart.

I had recently been notified that Walker’s income needed to be reduced by about 50% or about half of his gross pay would have to be paid to the State of Tennessee. If he worked two less days a week the net loss in income would be zero. That fact, coupled with my increasing uneasiness about the nature of his job requiring him to battle the heat and cold and rain and wind on a daily basis made me much more open to his idea than I might have been a couple of months ago.

However, I still don’t think it would be healthy for Walker to spend every day sitting in his room sorting his Polaroids or trying to recapture his childhood with watching old television shows and eating junk food. He’s not a child anymore. His fitness level at the moment is as good as any person with Down Syndrome I’ve ever seen, and I know that would not be the case were he any less active. The other reservation about allowing him to become a hermit totally dependent on the public dole was the lack of social stimulation he would experience. His dad and I are pretty boring pretty much all the time.

Walker and I visited a really nice day activity center recently in hopes of finding a social outlet, but after we left it, he said, “I really don’t want to go here.” He would have adjusted if I had insisted, but the truth is that he really doesn’t need that kind of activity.

I find us now at a bit of a crossroads with no direction markers. I’m not sure I know what he needs.

More discussion has followed.

We left open the possibility of cutting his hours and talked about other job opportunities, perhaps a more indoor kind of job. “Would you want to be a stocker,” I asked? He declined immediately. “I wouldn’t make as much money.” True, his tips and salary exceed even the slightly higher pay rate of a stocker. I pointed out how flexible the grocery had been about his scheduling (11-6 four days a week) and that another job might mean an earlier start, or working at night. “Un uh, No Way! I’m not doing that.”

On Monday he went back to work after a long weekend vacation. He announced yesterday that he was keeping his job, at least for a week or two.

The matter has been tabled for a while, but I know it’s something that we need to really stay on top of.

I hope Walker builds confidence in his voice when it comes to his needs. I hope we’ll always allow him as much freedom to make decisions as he’s capable of handling. I really hope another opportunity for a safer, indoor job, might materialize. It’s always liberating to have choices.