Down Syndrome

I’ve thought of many ways to start this new blog over the past few weeks, when today I came upon a touching story on cnn I knew I found my first topic. You can read the story here: Prom king with Down syndrome goes to college.

When I was born my mother was only 19 years old and single. Being so young, it was difficult for her. For many years off and on I lived with my maternal grandparents. One of my mother’s older brothers had down syndrome and he lived with my grandparents. Growing up around someone with down syndrome was interesting to say the least.

When I was young I didn’t really know how different my uncle Fred really was. He used to go to a school for retarded children every day. My grandfather and I would get up and drive him each morning. When we’d arrive at the school all the boys and girls would welcome us with huge smiles and warm greetings. I don’t recall exactly what Fred did at the school because I was so young at the time but I do remember that he used to run the cash register in the cafeteria for a while. He was even able to count the change himself. For many years he also participated in the Special Olympics as well. He had tons of ribbons hanging around his room that he was very proud of.

Fred always had a limited vocabulary but this didn’t stop him from conversing with everyone he knew. He had his own way of speaking. For instance, “goo goo” was chicken. “papa” was dad. I was “baby”. If he wanted to tattle on someone for smoking he would pretend to puff on a cigarette. He liked to tattle. He liked to swear (the result of growing up with brothers who liked to teach him bad things) and he also liked to fight! He had a pair of boxing gloves that he used to wear all the time and punch the air. It was always amusing to watch. I recall one day while up north visiting my Aunt and her family he talked my cousin into boxing with him. He punched her square in the nose so hard it blooded it and she ran off screaming and crying. That’s the day I realized how much strength he had for such a small man. He was only 5’2.

When we were at home Fred loved to play the guitar. He could only strum it but he’d do so for hours, while singing. He also had a harmonica that he loved to play around with. The house was always filled with music. He loved to watch Grand Ole Opry, westerns and The Three Stooges. He’d sit up at night in the wee hours after everyone else had gone to bed and laugh it up all night long. Sometimes he’d put on his Native American clothes and pretend to play cowboys and Indians.

Everyone who knew Fred loved him. He always loved to shake your hand and then hold his out for some cash. He loved collecting one dollar bills. He’d sit in his room for hours counting it and then stashing it away. He never really spent it, only collected it. I remember always being so envious that people were so generous with him. I wanted free money too!

The greatest thing about my Uncle Fred was that if you were sad and upset, even though he could be a mean old bugger he would come over to you, put his arm around you and pat your back.

Once my grandfather died (in a cruel twist of fate I’ll write about some other day) my grandmother had a hard time caring for him. She hadn’t retired yet and worked afternoons. Eventually he went to live with my Uncle down south for a few years where he made tons of new friends and absolutely loved it. My grandma was always so lonely without him. Unfortunately my grandma had a lot of strokes and various other problems that made it difficult for her to watch after him. When she finally convinced my uncle to bring Fred home it wasn’t long after that, that my aunt put him into a nursing home. I didn’t agree with what happened because the nursing home was so far away from my grandma and since she was no longer driving she barely got to visit. It was a very sad time for her.

Eventually Fred’s health deteriorated and hospice was then called in. I was told by my mother that he was in a great deal of pain before he passed and he was crying out. The one thing that touched everyone was that before he died he reached out and said “papa”. It was as if he was joining my grandfather after so many years apart. The thought of it now makes me cry.. but in a happy way, knowing that he was finally at peace and in no more pain.

When I moved back to this home (my grandmother now lives down south) last year when I was pregnant my husband was away working for weeks at a time. I was very lonely. One day while I was taking a nap I am absolutely sure that I heard a harmonica coming from the sound of my Uncle Fred’s room (which is now my office). I quickly awoke and ran to the bedroom. I knew I owned a harmonica but it was packed away, or so I thought. When I looked on my desk, there it was. Now even though I am not a religious person it was then that I knew my Uncle Fred was still here. It made me happy and it made me feel protected. As I sit here now in his room typing this and crying a little I can’t help but wonder if he is touching my shoulder telling me it will be ok.

If you know someone with Down syndrome.. please be kind to them. Don’t call them “retards” and don’t teach your children to say such things. They’re just like you or I, only more innocent. If you get to know them they just may change your view of the world. Don’t ever be ashamed of them. They are capable of just as much love, and probably even more than we are. Raising a child with down syndrome is a life-long commitment. When I was pregnant I worried a lot that I would have a child with down syndrome. I wondered if I’d be able to be as strong as my grandmother was. I don’t know if I could have. I do know one thing though.. and that is, knowing my Uncle Fred taught me a great deal of compassion, patience and love. Even if you could never see yourself in the position to care for someone like this you must respect those who choose to keep their down syndrome baby and raise them, undeterred by all the ignorance in this world. I believe it’s one of the most unselfish acts anyone could ever do.

If you’d like to read more about Down Syndrome, you can do so here:

National Down Syndrome Society

National Association for Down Syndrome

National Down Syndrome Congress – A link for expecting parents.

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