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.

Keeping Time with Amy

Even though she doesn’t entirely understand the concept, my daughter Amy has several ways of keeping track of the passage of time. She keeps track of the seasons by the condition of Patterson’s Fruit & Vegetable Stand which we pass by every time we go shopping. After sitting closed for a couple of months she knows they will have flowers for Valentine’s Day, then again for Easter and Mother’s Day. She anticipates summer, watching for the place to open with its fruit and vegetables. She knows that as the pumpkins appear that Halloween is in the offing and that when the stand closes after Halloween they will reopen after Thanksgiving with Christmas trees.

Amy keeps track of the months by family birthdays. She knows when everyone’s birthday is, hers being the most important. Amy looks forward to October as much as I do, but for a different reason. It is the month of her semiannual perm. Amy is stuck in the ‘80s. She loves the music, the movies and the big hair. It’s the decade she grew up in. She began getting her hair permed in about 1982 and has twice per year since then. Like many people with a disability, Amy is routine bound so perms in April and October are a must. Her stepfather’s one request—that she not look like a poodle. We try.

There are no accidents in life. I believe that as long as you are open with the universe and have a need that situations and things will come along to fill that. When we moved to Gig Harbor, WA from the Long Beach Peninsula we needed to find someone to cut the boys and my mother’s hair and to perm Amy’s. We knew no one, but my husband who had lived in Gig Harbor for only a couple of months when we arrived. Quite by chance we wandered into a beauty salon located in Gig Harbor’s main shopping center and met Carrie. That was nineteen years and lots of perms and haircuts ago.

Besides being a good hairdresser and a nice person, it turned out that Carrie had a special needs daughter of her own, younger than Amy. She understood and treated Amy like a princess when it was her day to get her hair done. Over the years and over Amy’s roller festooned head we’ve traded war stories. The girls were alone the day of the Nalley Valley earthquake. Well, Amy wasn’t quite alone, but Dave was on his way out the door to work, pausing just long enough to make sure she was okay. Ginnie really was alone, but had the presence of mind to scoot out the back door on her bottom to the back of the yard to wait for Carrie to come rushing home. I rushed home, too, having borrowed a van from school since my purse was in the school and they wouldn't let me in to get the keys to my car. Dave had locked the house and I had to throw rocks at Amy's window. She was not pleased when she opened the window and asked what the heck I wanted. I finally got her to come downstairs and open the door for me so I could use the bathroom and get a coat (it was February). It seemed that Amy had been asleep and the earthquake had waked her, but the lights were on (ours were not at school) and the heat on so she was more annoyed at the rude awakening than anything else.

Carrie and I had both the girls employed when they exited the school system and both of us discovered that it was more trouble than it was worth to have them working for a few hours per week at a minimum wage job that caused their social security to fluctuate monthly and if a job ended trying to get the full SSI reinstated took something next to an act of Congress.

We’ve commiserated at the exorbitant cost of handicapped seating at performances and the logistics of traveling with them. Although Amy is not in a wheelchair she is short and short of stamina. We arrive early to movies in the hopes of having her sit behind a wheelchair spot and then pray that no one in a wheelchair needs the spot. One night we were outfoxed when a literal busload of wheelchair bound movie goers arrived. Amy ended up in the front row in order to be able to see.

So yesterday was the big day. I sneaked away from work a few minutes early to go home and get her. At Amy’s birthday I take the entire day off from work and we really make a big deal, usually ending with a family dinner at whatever restaurant she fancies that year.

Over the years we’ve followed Carrie from shop to shop since our beginning with her in 1990. One time, when the shopping center burned down and the shop where she worked along with it, she even came to our house to cut my husband’s hair. We were a little early and Carrie had gone home to check on her daughter, but we waited with varying degrees of patience for her to return and get to the business of Amy’s afternoon of beauty.

Part of Amy’s perm routine is fast food. I don’t remember how it began, but the original shop was near to a McDonalds and since the process takes so long we began entertaining her with a chicken sandwich and fries. Now Carrie’s shop is right next door to a Burger King which is very handy so once her hair was wrapped around pink curlers she happily munched a chicken sandwich with a chocolate milkshake which was a first.

I would like it if Amy just gave up the ‘80s look, but then I wouldn’t get to sit and gossip with Carrie so we’ll keep going as long as Carrie keeps dishing out the beauty.