Thursday, October 8, 2009

Down's Syndrome Dementia

As if having a friend and neighbor lose her step-son abruptly in a motorbike accident weren’t enough, I’ve had another occasion to feel afraid as a mother. In the life of a parent of an offspring with a disability there are markers that can be painful. The diagnosis, when the gap between them and their peers begins to widen, when the Spring arrives when in another world the child would be graduating and making plans to go off to college.

When I was ten or eleven the mother of a classmate had the last of six children. One day when I’d been to the mailbox with my mother she stopped to talk to a neighbor in the street. They started talking about my classmate’s mother.

“Did you hear about the baby?”

“Yes, a Mongoloid. So sad. They’re hideous creatures you know.” Two things flashed through my mind simultaneously. First, Kevin wasn’t Chinese. Second, how sad for the family to have a hideous baby. That notion couldn’t have been farther from the truth.


About twenty years later I had reason to remember that incident. It happened at in the pediatrician’s office when my daughter was six days old and he told me that he wanted us to take our sweet baby girl to the University of Washington to be tested for Trisomy 21 or Mongolism. Well, I knew he must be crazy because there was nothing hideous about my baby girl. We were both right. She wasn’t hideous and she did have Trisomy 21, also known as Down’s Syndrome.

At the time of our daughter’s birth, her father and I spent a lot of time with my classmate Kevin. Needless-to-say he understood what we were going through and understood our future. He carried messages from his mother to us and we were encouraged by how well his brother Bobby was doing. Bobby had learned to read and write and was learning to work.

When there is a divorce a couple not only splits up the furniture and household goods and makes arrangements for the children, they split the friends as well. It’s not necessarily intentional, but it happens. Amy’s dad got custody of Kevin as a friend and we drifted apart. His family was raised across the street from my current husband and so I’ve had the occasional update on the family, but once my in-laws moved away from the old neighborhood in Bellevue we heard even less. Recently I reconnected with another of Kevin’s brothers on Facebook and last night learned that he is dealing with one of my worst fears. Bobby isn’t doing well. It is widely documented that people with Down’s Syndrome age faster than the rest of the population. When my daughter was born we were told that no one knew why that was. We were also told that this was actually good news because historically they died quite young because of respiratory infections. The advent of antibiotics had greatly increased their life expectancy. When you are hit with life altering news you grab at things to be thankful for. When your daughter is six days old the notion of her living into her thirties is comforting. It sounds llike forever. Until it arrives.

When Amy was in her early thirties her Department of Developmental Disabilities case worker asked if we’d seen any evidence of Down’s Syndrome Dementia. Ah, what? No, I don’t think so. That’s right, we were told she’d age quicker. She doesn’t have any gray hair. Mood swings? Well, she gets teary every month, but I’ve always laid that to hormones.

Now every time Amy has a fit of temper I think, is this it? So when Bobby’s brother sent me a private message on Facebook to say that he’d begun to slid downhill about eighteen months ago it was another punch to the gut. Bobby is 47. Fortunately, although both of his parents are passed he has siblings who care for him. He lives in an adult facility and two of his brothers are his guardians.

I am reminded again to bless every day I have with those I love just as they are. I pray for their health and prosperity and ask that I not have to bury one of them. I also know that we do not always receive the answers we want. The woman who said that having children was agreeing to having a piece of your heart walking around forever certainly nailed it.

2 comments:

brix1 said...

Stephanie,
I really do enjoy reading your blog. Your heart is really out there. It must help to write down what's going on, figuring things out and letting your emotions take life, if just for a moment.
We attended a doctor's appointment with "Bobby" the other day. His meds were giving him nightmares and some hallucinations. It appears to be a side affect of the meds, so he's getting along better without.
Thanks for giving a voice to the vulnerable.
Jamie

Stephanie Frieze said...

I am so sorry about the medication issues. My mother and a friend of hers were both taking a sleeping pill that does those types of things. My mother was having nightmares and thought she was losing her mind and her friend thought little children were rummaging through her cupboards. They are taking other meds now. I hope that "Bobby" gets his straightened and at the very least is calm and happy.