I am very sympathetic to new parents of Downs kids. It is traumatic and frightening, but the kids are so wonderful, and every inch of progress makes for grand celebration! You only can appreciate their beauty once you relax and realize they are just kids, and they remain kids a lot longer than “normal” kids (whatever that is).
We had kids because we wanted kids and with Cara that turned out to be a kid for a life time. Cara is now 40 years old, in some ways she is about 9 years old and some ways she is 40. But overall Cara is a lot more mature than me, she is rock solid in her convictions, right is right, and wrong is wrong, all the time. Never any exceptions. Cara is extremely moral, committed to her loyalty. She simply loves everybody she meets.
When Cara was born in Burlington Vermont (on April 1, 1971, how’s that for ironic?) we were scared stiff and had no idea what to expect. People back then were uncomfortable around us, and the sometimes said some awkward things, including one guy I worked with who blurted out, “well you’re not going to keep her are you?”
We had a wonderful old family doctor who simply said, “take this beautiful child home and love her.” We asked questions of what could we expect, like would she be able to walk? She was so double jointed and flexible it seemed like there was no way she could walk. He assured her she would be fine, but it wasn’t enough. We heard of a clinic in Cherry Hill NJ that was doing super progressive work with Downs kids. We made an appointment for an evaluation. They spent the day with us and tested Cara in many ways; there was a very detailed technical report that said she would be pretty much what she is today. She is fairly high functioning to start with but the big thing we learned that became our whole recipe for raising a Downs person. If you treat her normal she will be normal, if you treat her special, you will create a special person. We had to learn to be consistent. Yes, and no, must be the same every time in every situation. If you are not allowed to climb on the coffee table today, you cannot climb on it tomorrow, or ever. It takes more discipline for the parent s than it does for the child. And this applies to all kids, not just downs. My wife became the disciplinarian and I tried to be the “Daddy.” I was not as good as my wife was at being firm. I just wanted to protect her from anything or anybody who would be unkind in any way. Time passed and our family grew with the birth of Cara’s brother Derek. They are about three years apart, and grew up learning about life and love together.
When Cara was less than two we moved to Massachusetts. Their school system was highly advanced and the Federal Education Mandation laws were just being enacted. It was mandated that all kids be educated to their fullest potential, no matter of their physical or mental capacities. But Mass was really already doing that. Cara went off to school where they developed an education plan to work primarily on her social skills, Cara was potty trained by the time she was 18 months old, and going to school in a taxi cab!
Cara was a bright penny in our family and with her school teachers. She was always outgoing, charming, interesting, and very precocious. She stayed in public school until she was 21. In the later years of high school she was a social butterfly, working for the teachers, counselors, and the school office secretaries, she had the run of her high school, and virtually everybody knew her. She did copying, collating, and distribution of tests and handouts, and mail, around the school. Cara went on to work in our local sheltered workshop, and also from there did volunteer work at the local hospital. At the hospital she worked in the women’s health unit, and again became well known and very social. She made friends throughout the hospital, the sheltered workshop, and high school that she communicates with still today. It wasn’t all roses, the workshop had a social network of all different types of disabilities, some of the people were more physically challenged than mental and there was a lot of gossip, and manipulating of weaker personalities. At one point Cara became involved with a group of very undesirable clients who were pushy, aggressive, and down right nasty. I never knew exactly what Cara’s role was in that click but it was not nice.
We got past that phase, but shortly after that Cara’s health really deteriorated, she had gained an awful lot of weight and was often sick, and hospitalized with a lot of upper respiratory problems. At 305 pounds she was sent home from the hospital with congestive heart failure, and pneumonia, on oxygen, and with visiting nurses tending to an IV of antibiotics. We explained to Cara that she could not live this way, sitting and eating and watching TV and that the doctors had told us there was nothing more they could do for her. We out right told her she would die if she didn’t get up and move. She got that through her head and started walking the hall way of our home between TV commercials. That seemed to work, so to encourage her, my wife got her a pedometer to track her progress. She logged countless miles in the house! Cara saw her weight drop a couple pounds and that encouraged her to expand her own exercise program over the following years until she was doing exercise tapes, Sweating to the Oldies with Richard Simmons, and Walk away the Pounds. She became obsessed with health and got down to 125 pounds, virtually on her own. Her story was better than many you see on Oprah. That weight loss was probably 10 years ago, and although Cara still fights the weight battle, she has gained back some of her weight but is no longer morbidly obese. Cara slept with oxygen and we traveled with portable bottles for maybe four years but eventually she got rid of all that stuff and she has not returned to the hospital since.
Today at forty years old Cara will tell you she is retired, but she works very hard in our home. She does most of the laundry, takes care of all the kitchen cleanup, and dishes, vacuums, waxes furniture and dusting. She loves her TV programs, soap operas, Country music and Ben Roethlisberger of the Pittsburg Steelers. She prowls the internet constantly, on her own computer, researching characters on her soaps, and following stars like Roethlisberger, Wynonna Judd and Alan Jackson. She talks on the phone regularly to her friends, but her social life is mostly interacting with her niece, and nephews, and family members. Some of Cara’s friends live in group homes, but Cara has always wanted to live at home. She never wanted to discuss living in a group home. She loves her life here with her family, she has her room, and her stuff, and that’s all she really wants. She takes care of her grandma, who at 87 needs Cara’s reminders to take her pills. When grandma spends the winters in our home she and grandma are together constantly, and when grandma goes home for the summer Cara talks to grandma at least twice a day every day.
People throw around the word “retard” like it is a descriptive color or shape. When some one says it once around me I usually disregard it and hope they just slipped up. The next time I hear that same person say it I embarrass them and explain how hurtful it is. The third time they say it I am inclined to take action, like when it happened in the work place or some place I can take it to a management’s attention. I usually would shun anyone like that but sometimes you are forced to associate with people who are rude and ignorant.
We wanted kids when we were young, and one of our kids still lives with us. And I wonder what was it that I was afraid of when she was born.