The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Friday, April 3, 2009

Hindsight: Hints of DS, Part 2

If you are interested in Part 1, it's here.

While I was in Dent County last week, in the midst of driving those memory-reviving roads, I passed a place a few times that held another bit of what I consider to be foreshadowing.

Honestly, as I thought about this, I am missing alot of the details about this time in the file drawers of my brain. I don't know why that is. This little snippet of that era is foggy.

What I do remember is for a short while I worked at the adult day care facility of what they call Enrichment Services for the county. I think that I had an aquaintence that worked for the ES, and she had asked if I had time to help them since they were quite shorthanded. I really don't remember exactly where this falls in the timeline of things that happened during my three-year period of living in Dent County. But I believe it was after my stint in Mrs. B's class, and I know it was before the opening of the after-hours clinic.

During most of my time in that town, I had at least two jobs, since most of them were just "as needed." I thought that was really handy, as I could work as much as I wanted to, and I could still take time off without causing anyone to be in a bind. For instance, I was working at the school during the day with my long-term assignments in 7th and 8th grade when I was at the after-hours clinic at night. And when I was doing day-to-day subbing at the school, I had odd days here and there that I could fill with other things. This time at ES was one of those things.

The levels of functionality were varied, not surprisingly. But most of the people could handle their own self-care needs and such. Most of the clients lived with their families who worked during the day, and it was better, or in many cases just more fun, for them to come and hang out with friends instead of being home alone during that time. The days there consisted of playing Bingo, alot of Bingo, with a particular couple of the people. Routines were very, very important, as most all of them were much more comfortable with it that way. Some days there would be friends come and play the piano and sing everything from hymns to show tunes. Those were fun times. Lunchtime was a favorite, and the meals were provided by the center and were considered pretty yummy. Some clients had food issues, as in allergies, and many had environmental meal requirements, like placement of the utensils, colors of the tableware, or what drink they liked best. There were a few of the clients who went to work for a while during the day at a sheltered workshop or nearby business.

I wish now I could remember more about the individuals from a clinical standpoint. I don't recall much that would help me guess at the various diagnoses. But the people there were not scary. They were not useless. They were not disposable. They were people, gathering with friends each day, and enjoying it immensely. I'm sure there were negative experiences at times, but which of us can say we are free of the like at work or school or even at home. Life is not perfect, but these neat people didn't seem to mind at all. They were excited to arrive each day, eager to tell their friends what had happened the evening before, and ready to see their families at the end of the day. Sounds like most of us, doesn't it? Except more of us could probably use an extra dose of the "excited" part at the beginning of our days.

The picture of our intellectually disabled child as an adult is not one that most of us want to dwell on. Some I've met refuse to even discuss it in passing. I admit that it can be a scary prospect, but I don't know what Braska's future holds. I don't know how it is all going to play out with services, facilities, living arrangements, available jobs, etc. But I hope that wherever she finds herself at age 40 or 45, she is as happy with her life and as much a blessing to those around her as these wonderful friends were. For it does not matter much what else is true, as long as she is happy, I'll be pleased as well.

1 comment:

Anonymous said...

Thank you for your posts. Your daughter is beautiful.

My daughter is looking at the possibility of a DS child come July. We are not sure just yet but Mom's like you make the prospect so much easier to accept.

I am so glad you are blogging about it.