(I use the word retarded in this post. You should note I use the phrase mentally handicapped later in the post. this reflects the change that took place over time in how children with Down’s were labeled. My Mom’s generation called them Mongoloids)
The other day I wrote a post about taking our daughter with Down Syndrome to the doctor. The post was meant to be a light-hearted post and most of you took it that way. Others didn’t.
When our daughter was born 22 years ago she looked quite normal. Bethany has mild Down’s features but unless someone is focused on her face the classic Down’s facial features are easily missed. (and the reason the people at the doctor’s office didn’t pick up on it right away)
Even the doctor who delivered Bethany missed the fact that she had Down Syndrome. There is no excuse for this. She has other physical attributes that should have told the doctor that she had Down Syndrome but he missed them. He had to cut his golf game short to deliver Bethany. In fact, the nurses, for the most part, delivered Bethany. The doctor arrived in time to cut the umbilical cord, sign the birth certificate, and collect his money.
Bethany was 2 years old before we found out she had Down Syndrome. Only after noticing delayed cognitive, speech, and motor skills did we decide to have Bethany checked out. Our doctor sent us to Ohio State University for genetic testing and it was confirmed that Bethany had Down Syndrome.
As we look back on Bethany’s first 2 years of life we have concluded that she was better off not being diagnosed with Down Syndrome at birth. We probably would have babied her and treated her differently than the rest of the children. (we had 3 children at the time, ages 10,8, and 5)
Once diagnosed, we contacted the local special needs school. We wanted Bethany to have the best possible education. We went and visited the school and we were appalled by what we saw.
The school, located in one of the poorest counties in Ohio, was pretty much a warehouse for retarded kids. Very little educating was actually going on.
There were a number of Down Syndrome children in the school and we were not impressed with how they were being taught. Most every one of the children had their tongue ticking out, a classic problem Down’s children have. This problem can be corrected but it requires early and consistent training. We knew that we did not want Bethany going through life with her tongue hanging out. (and she learned not to hang her tongue out)
When asked if we were going to put Bethany in the school we told them No. Our reasoning was simple. We did not want Bethany gravitating to the lowest common denominator. Warehouse a bunch of retarded children together and what you end up with is a bunch of retarded children who show little or no educational progress. There was little incentive to progress educationally or mentally.
Instead, we set out to learn all we could about educating a child with Down Syndrome and for the next 16 years we educated her at home.
There is no Down Syndrome normal. There are people with Down Syndrome who are severely handicapped and there are people who are quite high functioning. Most of them have physical problems, to some degree or another. Bethany has thyroid problems, heart problems, and skin problems.
TV has done a great disservice to people with Down Syndrome. There are several actors with Down Syndrome who are shown as examples of the potential someone with Down Syndrome has. However, these actors are high functioning and most people with Down’s are not high functioning. I cant even begin to number the times we have had someone say “Did you see the person with Down’s on TV? Couldn’t Bethany be like them?” This is well intentioned ignorance.
Every person with Down Syndrome has a physical age and a mental age. Bethany is 22 years old but mentally she is closer to a 6 years old. (in some things she is older, but overall she thinks like a six year old) We have witnessed more than a few arguments that Bethany has had with our 5 year old granddaughters over playing with Barbie dolls.
Bethany can not read in the classic sense of the word read. She has, over the years, memorized words. I suspect she knows hundreds of words this way. She has learned to match sports team logos with their team name so it is not uncommon for Bethany to look at the score on TV and be able to tell you who the teams are and what the score is. She is not “reading.” She is reciting what she has memorized.
Bethany loves to listen to music. She is an avid country fan. Her ability to memorize things comes into play with music too. She can hear a few bars of a song on the radio and immediately identify the group. She is quite good at this.
People with Down Syndrome tend to settle in to a certain mental age. They like sameness, routine. This is very important to understand. Like a person with OCD they like to order their life a certain way and they don’t like anyone messing with the order. Bethany loves to color and copy things out of the newspaper. Her copying is what she calls her writing. Can she actually write? Again, not in the classic sense of the word writing. She does have a small number of words she has memorized and she can write them. Like her name and address. Words like Rascal Flatts, Gary Levox (lead singer for Rascal Flatts), etc.
Bethany has chores she is expected to do every day. She makes ice tea and folds laundry. She takes the dog out to the pen. She helps with general household chores, drying dishes, putting food on the table, etc. Again, she functions better when things are kept to a routine. (and so does her Dad) 
People with Down Syndrome tend to be single-minded. They tend to focus on one thing and don’t let go of it until the task is finished. We continue to work with Bethany to learn how to multitask. She still tends to want to do things one thing at a time. If she has 4 things to put away she is likely to put one thing away, come back and get the another thing, and do this until everything is put away.
What do we want for Bethany? We want her to be all that she can be. We want her to be happy. We want her to feel safe and protected. Only a parent in a similar circumstance can understand the difficulty of having a 22 year old adult child with a 6 year old mind. She is able to get pregnant as any 22 year old woman would know, but she takes to men like a 6 year old grandchild would. She is very trusting and becomes quickly infatuated with anyone who shows her a bit of attention. It is funny at times to watch, but horrifying when you ponder the potential for harm. More than once we have been in a store and found Bethany chatting up some 30 year old man. She is quite innocent and most of the time so are the men……….but there have been times when that is not the case.
There is a misguided notion in America that human value is determined by the work they do. A person’s value is only as great as what they produce. We wholeheartedly reject this notion. We believe people have value regardless of what they do and that people with a mental handicap should be treated with love and respect and not treated as a cog in the industrial machine.
Many people with mental handicaps can live on their own. I have a cousin who is mentally handicapped and he has lived in an apartment with a couple of other handicapped people for many years. It is wonderful how he cares for himself. (with the help of case workers and his parents) However, many people with a mental handicap can’t live on their own. Expecting people with grown up bodies and 6 year old minds to act like an adult and function like an adult is harmful to the disabled person. (and can be very, very dangerous)
The truth is some families don’t want to be bothered with caring for a child with a mental (or physical) handicap. They are too busy living their life, doing their own thing. So they warehouse their child, passing off to the state the responsibility for their child. Polly and I decided we would never do this. (and we feel the same way about how the elderly are warehoused in this country)
Would we like to be home alone some day, just the two of us? Sure. But, that’s not how it is going to be. Bethany is an essential part of our life. Our home is her home and it will be until we die. It is likely that she will outlive us and our other children know that our home is her home. We have talked with our oldest children about what will happen with Bethany after Polly and I are gone. We are quite pleased that our children, the loving, good people they are, are committed to Bethany always being at home, whether in our home or theirs. This is a big commitment on their part……and their willingness to do so speaks volumes about their character and decency.
People with Down Syndrome often live into their late 40’s and early 50’s. We hope Bethany has a long life. Whatever length of life she may have we intend to make sure she knows she is loved.
Right now, Bethany is sitting cross-legged (she is double jointed) on the couch. She is coloring. She has her headphones on, connected to her mp3 player. She is singing away………you guessed it……..to a Rascal Flatts song.
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