What's it like to have a child with Down syndrome?
1. Seth as a baby:
Some people want to know everything they can possibly know about their baby before he or she is born. I didn't need that much info. I wanted to know whether I was having a boy or a girl so that I could have the right clothes and so that I could talk to my baby and call him or her by name. At our 20-week ultrasound, the technician saw that Seth was a boy, had clubbed feet, and had three signs of Down syndrome: a thickened neck, short limbs, and a hole in his heart. The doctor directed us to a perinatologist who told us that Seth definitely had a hole in his heart, but that the neck and limb measurements looked within a normal range. He was 95% sure that Seth did NOT have Down syndrome. The only way to know for sure, though, was to get an amniocentesis. Since there seemed to be no health issues for me or for Seth that could be fixed before he was born, I declined the amnio. When Seth was born, he obviously DID have Down syndrome. I was so drugged from the c-section that it just didn't matter at all. Seth was alive, I was alive, nothing else mattered. After the drugs wore off, I did cry a little over the loss of my idea of a "perfect" child, but then I really looked at my baby. He was just a baby, just exactly like my previous three babies. He needed me to hold him, feed him, clothe him, clean him, and love him . . . and successfully deal with his health issues. The orthopedic surgeon casted Seth's clubbed feet. The cardiologist looked at Seth's heart and made arrangements to monitor the hole and its effect on Seth's growth and health. Every baby requires many doctor visits in the first two years in order to check growth and to receive immunizations. Seth required more than average. When Seth was seven months old, he had surgery to put a patch on the hole in his heart. The experience was so traumatic, his eyes started crossing. He had to have a surgical procedure to fix that problem. He had to have tubes put in his ears several different times because the canals that drain all the gunk were too small and not slanted enough to drain everything, so he was prone to ear infections. Overall, Seth as a baby was just like any other baby except with more physical challenges.
2. Seth as a toddler:
All parents tend to compare their children to other children of the same age. This is a VERY unwise practice for a parent with a child with Down syndrome! Every time I allowed myself to compare Seth to two other little boys at church who were born at about the same time as Seth, I would get quite depressed, jealous, and even angry. BUT then I would look at just my Seth. He was doing EXACTLY what HE was supposed to be doing. Every stage of development lasted at least twice as long as it did for my other three kids. He had to have a physical therapist teach him how to roll over, sit, stand, crawl, throw, catch, kick, etc. He had to have a speech therapist teach him how to bite, chew, swallow, and speak. He had to have an occupational therapist teach him how to use his fingers and hands correctly. He responded very well to all of his doctors and therapists, growing and developing at an average rate for a person with Down syndrome.
3. Seth as a grade-schooler:
One of the most challenging parts of Seth's nature is the way he deals with adversity. We ALL want to do the things that we want to do and have to learn to deal with change, disappointment, rules, and obligations. This process is MUCH more difficult for Seth because he can't quite understand the concept of cause and effect. I can explain in the simplest terms why he can or can't do something, but he doesn't understand. What he does understand is that he wants to do "this," but the mean mom is forcing him to do "that." Anger is the result. The complete lack of control over his own life almost always causes anger. Going to school for the first time seemed like a great new adventure, and he loved it. He worked hard to be friendly and cooperate with his teacher and assistant. When Christmas break arrived, he waved "good-bye" to his school friends, thinking he had completed that adventure. He was not happy, and was never happy again, to go back to school again after that break. No amount of encouraging, demanding, coaxing, or bribing could make Seth voluntarily go back to school. Of course, I did make him go back for the next six years. Sometimes, he would end up cooperating with his teachers. Sometimes, he would be a giant pain in the neck. Sometimes he would be nice. Sometimes he would be grouchy and yell at everyone. Some people say that stubbornness is a Down syndrome trait. I don't know if that's true because it could also be an inherited trait from a parent. I'm incredibly stubborn, so it's more likely that he got it from me than from his extra chromosome. The biggest challenge as a parent through Seth's grade-school years was trying to get Seth to be nice in all circumstances. His natural reaction to all adversity is anger. Loud, sometimes physically aggressive anger.
4. Seth as a teenager:
This is the stage that we're in now. The anger issue is still the biggest challenge. He has some health issues, but all human beings have health concerns throughout life. My oldest son had digestive issues as a child. My daughter has celiac disease and migraines. My middle son was born with clubbed feet and still deals with the effects of that. Seth has celiac disease, psoriasis, and Grave's Disease along with his developmental delays. Overall, all four of my kids are considered healthy young people, and I'm SO thankful for their good health. Seth still works with his speech therapist and occupational therapist. He still sees the cardiologist every couple years to make sure the patch on his heart is working. He sees an endocrinologist to stay on top of the thyroid issues related to Grave's Disease. I'm homeschooling Seth now because I don't feel comfortable with the Alaska public school system and because Anchorage Christian Schools doesn't have special ed. For the most part, I expect the same things from Seth that I did from my older three kids. I expect him to be kind and respectful to all people (he's not quite meeting that expectation very well, though). I expect him to try his best at everything he does. I expect him to clean up after himself the best he can.
5. Generalizations:
-- Some people think that people with Down syndrome are sweet, loving, special people. Seth CAN be sweet, loving, and special. More often, though, he's a little monster, requiring creative patience and redirection to avoid public spectacles.
-- Some people think that people with Down syndrome aren't capable of succeeding at anything that other people can do. Seth CAN do many things very well, often at a slower rate than others. Seth is learning to read, write, spell, do math, tell time, make his own food, get himself dressed, clean himself, make his own choices, etc. Some people with Down syndrome live on their own or live in a house with other people with disabilities and an adult or two without disabilities. I'm hoping that Seth wants to always live with us.
-- Some people think that people with Down syndrome are a burden to their families and to society. The people who believe that, though, have obviously not had any contact with a person with Down syndrome who comes from a family who loves without conditions. Seth is a superstar in our family, school, and church. Knowing Seth, receiving Seth's attention and affection, and spending time with Seth is a privilege. We can't even imagine life without Seth because he makes our lives better. He has influenced people to be better people and to choose paths that help people with disabilities. The saying that "hurt people hurt people" is true, but so is the opposite: "Loved people love people."
The bottom line of having a child with Down syndrome is this: life is better with Seth. His physical, developmental, and behavioral issues can be challenging. Creativity, patience, and unconditional love are requirements for being Seth's parent and/or caretaker.
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