Downs Syndrome (Trisomy 21) was a serious diagnosis to hear about my newborn son 13.5 years ago. However, because my OB/GYN was raising his own 16 year old son with DS, I had access to the best information, resources and support from the day my son was born. He had opportunities to grow up in the mainstream of our community as a well known and appreciated person in our neighborhood, regular preschool and elementary classrooms and community programs (cub scouts, little league and soccer).
Seven years later, he developed juvenile diabetes. I was just devastated by this diagnosis. It seems terribly unfair that any child has to face the challenge of diabetes. My son had struggled so early and so long with early intervention, physical therapy, speech therapy, and pioneering inclusion in our school district. I'm sure that if it were possible, I would have been more overwhelmed than any other mom who has ever heard a doctor say, "Your child has diabetes."
I did not believe that my son could get used to having daily blood tests and injections; I was fairly sure that I would not be able to accept that as part of our daily life. As it turned out, he decided to make a game of guessing his blood sugar to take my mind off the finger poke. Three days after he was diagnosed, he told me out of the blue, "Insulin works, mom. I feel better."
I was fortunate that he was seven years old when he developed diabetes, and that he had learned how to count in kindergarten, and to do simple math and to read in first grade. I made up a color coded list to put in with his blood test meter so that he could find his number and read the simple comments next to it. Because we could not control his blood sugar very well due to his high activity level (little league and playground games) I marked 100 to 120 as "perfect" blood sugar, anything under 100 as "time to eat something" and anything under 70 as "drink juice or regular soda pop NOW." Anything over 120 was "drink water or Nutrasweet soda pop," and anything over 180 was "R insulin shot."
Of course our greatest difficulty was in alerting other people about his diabetes, what to look for as symptoms of dangerously low blood sugar (often the same as the symptoms of being a 7 year old boy), and how to treat episodes of hypoglycemia. Because he had communication and articulation problems, we taught him to point to his medic alert bracelet if he felt hungry. I wrote up a one page explanation of diabetes and the dangers of low blood sugar for his classmates, their parents, and school staff, so that his peer buddies knew what to do if the grown ups around them forgot that my son had diabetes. It remains my greatest fear that he will be on his own somewhere and have sudden unexpected hypoglycemia, and that people around him will attribute the symptoms to his having Down Syndrome rather than to him having a medical emergency.
So far, his greatest difficulty has been having seizures in the night due to sudden blood sugar drops, even though I have always tested him between 2am and 3am. An unexpected result of his first episode of this sort was that he lost many skills he had learned at school, including his math facts and cursive writing skills. He had made steady progress in regular Tae Kwon Do classes taking belt exams with the rest of his class until he had the first seizures. It took him a year to relearn the complicated routines and series of kicks that he had studied the first two years. Just after he earned his green belt at his first belt exam after those middle of the night seizures, he had seizures sitting right next to me after a big breakfast and an early snack. Since I caught them early, he came back quickly, but an hour later could not get his last name right in his signature. He came to me saying, "It doesn't work, mom." He had just gone through relearning all his letters in cursive and it was very painful to tell him we would have to go through and see which ones he had lost. He just told me, "Well, here we go again."
Aside from the great amount of character and patience he has shown in dealing with the challenges of diabetes on his life, my son is a typical 13 year old boy. He doesn't like to be reminded when it's time for a blood test or shot or snack when he has other things he wants to be doing. He has the same temper and sensitivity as his 13 year old friends who have neither Down Syndrome or diabetes. If it was possible for me to be more exasperated about my son's diabetes than any other mom of a 13 year old is, I am sure I would be. Diabetes is a condition that causes each of us to pass a pain and worry threshold that no parent should have to cross. I never thought anything would overshadow the anxieties that the diagnosis of Down Syndrome introduced in our lives.
Pam receives e-mail at PMWilson@aol.com.
Last Updated: Wednesday March 16, 2005 15:44:56
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