There’s Something Wrong With Your Child
“There’s something wrong with your child.” Few phrases strike more fear into a parent’s heart than this one. Six small words — but with the power to completely alter a family’s future.
How do parents who’ve heard these words cope with and accept the devastating diagnoses that follow? How do families thrive when faced with the seemingly insurmountable obstacles and challenges posed by physical and mental illnesses? They do it with love, support, humor and grace. And sometimes with frustration, anger and guilt. But at the heart of it, they live their lives with hope for the future and the knowledge that no matter how different their child is, their life is richer because that child is part of it.
We asked four local families to tell us about their children with special needs. What we learned from reading their stories is that these children aren’t special — they, and their parents, are extraordinary.
Down syndrome: “Babies Are Her Best Friends.”
By Patty Dudek
Most kids love babies, but none enjoy them as much as my daughter Megan does. Whenever she sees a little one (any child under the age of 2 will do), she immediately runs over. Her opening line is consistent: “Hi, baby, I’m Megan.” For as long as she is allowed to, she will repeatedly introduce herself, ask the baby his or her name and play an endless game of peek-a-boo. Without exception, the babies are very entertained — all smiles and laughter.
At the pool during the summer, my husband and I joke that Megan “joins other families.” She makes herself comfortable in the kiddie pool, sitting with another parent and young child, probably hoping that we’ll let her go home with her new young friend.
Megan’s interactions with children her own age are very different. Megan is 7 years old and has Down syndrome. Her school day is designed to provide opportunities for social interaction and reinforcement of her academic skills. As a result, her day is balanced between children with special needs and children who are considered typically developing.
Recently, I had the opportunity to assist in the classroom and watch the children interact with one another. Megan was greeted with a “Hi, Megan,” as she entered the room. The teacher dispersed everyone to their respective centers, and Megan joined two other young girls and a mom at a table to string macaroni on a piece of yarn.
As I watched – prepared to help my daughter if necessary – I realized that, for Megan, the world must move at a pace similar to fast forward. She didn’t initiate conversation. When asked a question, some time would pass before Megan would reply, and sometimes the reply wasn’t loud enough to be heard. This is a difficult way to have a conversation, so often the other child would loose interest and move on.
There was a little girl at the table who introduced herself as Megan’s buddy. She was assigned early in the year to help Megan navigate between classes. She is a wonderful role model for Megan. She initiated conversation with bright, cheery questions and wasn’t dismayed when Megan didn’t answer right away. A few minutes passed, and then she asked another question – one that Megan answered with a huge smile. Several times during the center, Megan’s buddy complimented Megan on her work or commented on her progress.
Megan has a close friend in her school. A friend she hugs, leans close to and shares secrets with — a friend who also happens to have Down syndrome. Megan also has her babies, young children who move at her pace and see the world from her perspective. Megan also has her buddy – someone who accepts her for who she is and isn’t looking for anything more than that.
Children with Down syndrome learn best by watching other children. I know Megan is learning from those around her; I see evidence of this daily. I also know others are learning from her. Babies love repetition, and they can’t help but join in Megan’s contagious laughter. Megan’s buddy and the other children who interact with her each day learn that the world is made up of a diverse set of people. They learn tolerance and patience. They learn to be a friend.
For more information about Down syndrome or about local resources and support, visit www.triangledownsyndrome.org.
Type 1 Diabetes: “This Is No Way for Her to Live.”
By Kim Burson
Every year more than 13,000 Americans are diagnosed with juvenile, or type 1, diabetes — a devastating autoimmune disease for which there is no cure. My daughter, Frances, was one of them. She won’t grow out of it; exercise and diet won’t change the fact that all of her insulin producing beta cells have been permanently and irreversibly destroyed.
As a mother, I will never forget the helpless and terrifying day when our pediatrician identified Frances’ weight loss and constant thirst as classic symptoms of the disease. A urine test revealed the life-changing diagnosis.
We spent the first three days after diagnosis at the hospital with our then 8-year-old daughter, where we were thrown into a crash course in biochemistry, physiology and nutrition. I watched as nurses gave my little girl the first of thousands of insulin injections. We learned how food affects blood sugar, how to count carbohydrates and calculate an insulin dose, about the different types of insulin and how to mix them. We also learned emergency treatment procedures should our daughter ever suffer a severe low blood sugar that can cause seizures, coma and even death. We were scared and overwhelmed.
Two months ago, after more than 1,500 insulin injections and 3,000 finger pricks, Frances began using an insulin pump. The pump is a small battery operated device, approximately the size of a pager, that continuously delivers small doses of insulin through an infusion line fitted with plastic tubing inserted under the skin. It must be worn 24 hours a day, seven days a week. Although the pump allows for a somewhat more flexible lifestyle, she is still required to test her blood sugar multiple times every day.
So, what is an average day like? On school days, Frances wakes up at 8 a.m., gets dressed and ready for school, then pricks her finger to test her blood sugar. She decides what to eat for breakfast, counts the carbohydrates, calculates the proper insulin dose for the food she is going to eat, and adjusts for a higher- or lower-than-target blood sugar reading. She activates her pump to administer the dose of insulin (called a bolus). At 10 a.m., she has a snack at school and, again based on the number of carbohydrates, she gives herself a bolus. At noon, she pricks her finger to test her blood sugar and, based on what we’ve packed in her lunch box, she counts the carbohydrates and administers a bolus. At snack time and at dinner, she follows the same procedure.
At the end of the day, around 9 p.m., she disconnects the pump from her body and takes a shower. Fifteen minutes later, she reconnects to her pump, pricks her finger one last time, and eats bedtime snack that includes protein, which helps to maintain blood sugar levels throughout the night. She counts the carbs and administers another bolus. If her bedtime blood sugar reading is below 95 mg/dl, either my husband or I will wake her in the middle of the night to prick her finger and make sure that her blood sugar isn’t too low.
The next day the process begins all over again, and every three days we have to move the pump infusion set to another location on her body.
After 20 months, diabetes has become a part of our family’s life, but no matter how used to it we get, no matter how smart Frances is about her care, this is no way for her to live. Statistically her life has already been cut short by 15 years. Kidney disease, heart disease, brain damage and stroke are possible, as is nerve damage that could result in amputation and blindness. Diabetes affects your entire body — nothing is safe.
My daughter doesn’t complain, but she should. Her fingers are raw. She has puffiness in her tummy and legs from the injections and small holes that slowly heal over on her bottom, back, hips and stomach from the insulin pump infusion sites. She knows, down inside, that other children sometimes treat her differently and talk about her because they don’t understand. It’s hard to be different when you’re 10 years old.
So today I renew my resolve to do all that I can to give my daughter everything she needs to stay as healthy as she can until there is a cure. I will continue to work on behalf of the Juvenile Diabetes Research Foundation to raise awareness and funds for research to find the cure. That means staying on top of new technology and research, beginning every day with the goal to achieve the best blood sugar control possible and above all, supporting my daughter — even if it’s to remind her that she’s only human and it’s OK to shed a few tears from time to time.
For more information about the Juvenile Diabetes Research Foundation, call the local chapter office at (919) 431-8330 or visit their Web site at www.jdrftriangle.org.
Blindness: “There’s Something Wrong with your Son’s Vision.”
By Danielle Lowden
“Mrs. Lowden, I need you to come see this. There’s something wrong with your son’s vision,” the optometrist announced. I looked at the computer screen showing the photographs of my son’s retinas, and I could see the dark, black rings. I knew enough to know that didn’t seem right. As the optometrist explained what the retina should look like and what Eric’s looked like, I could feel my heart sink.
Prior to that appointment, we’d struggled for some time with Eric’s reading problems. He’d been evaluated for learning disabilities at his school — a long process involving lots of red tape, required meetings and paper work. In our community, school psychologists and speech pathologists often work with two or three schools, so their schedules are busy, to say the least, and testing is difficult to coordinate. After several months of waiting for answers, the test results indicated that Eric was of average intelligence and that he did not have any learning disabilities. In a nutshell: they couldn’t find anything wrong with him, so they thought he just wasn’t very smart.
My husband Chris and I knew better, so we decided to take matters in our own hands. That was when we scheduled Eric for an eye exam.
Our optometrist referred Eric to a pediatric ophthalmologist who, in turn, sent us to a retina specialist. Three eye doctor appointments later, we had our initial diagnosis. Our son had Stargardt’s Disease, a rare inherited juvenile form of macular degeneration that normally strikes children under the age of 20. Eric, then 7 years old, was very young to have contracted this disease.
We were then given the name of an ophthalmologist at UNC who specializes in the disease. His name is Dr. Kean Oh. It took us a month to get in to see Dr. Oh.
During that time, we experienced fear, depression, sadness, guilt and anger. We looked back and realized that we missed so many signs of Eric’s vision problems. We had been so hard on him — pushing him about his school work and thinking the problems stemmed from his attitude. All the while, we had no idea our son was blind!
Rather than sitting there feeling helpless, we decided on a course of action. We found www.blindness.org, the Web site for the Foundation for Fighting Blindness, which gave us a good start. We knew that we needed to go meet Dr. Oh armed with information and questions, no matter how extreme or trivial the questions seemed. After all, this is our son, and we need to know everything about this disease.
Immediately after the diagnosis, Eric was placed in the Visually Impaired (V.I.) program with Wake County Schools at Durant Elementary, where he is being trained to use low vision equipment and is learning Braille. Mrs. Peggy Holly is his V.I. teacher and has been a true blessing.
I asked Mrs. Holly how we, as Eric’s parents, could also learn Braille to show our support and encourage Eric. She suggested taking a correspondence course through the Hadley School for the Blind located in Illinois. I went to their Web site — www.hadley-school.org — and discovered that the school offers classes to parents of blind children free of charge. I have been working on the first course in learning Braille. It has been exciting and, I hope, an encouragement to Eric. We practice our Braille letters together using the Braille Writer that Durant provided him.
Eric is a very outgoing, energetic and athletic boy. He is a student at Peck’s Taekwondo in Raleigh, and he’s on a roller hockey team with the Raleigh-Cary Inline Hockey Association. When he was first diagnosed, we worried that he would go completely blind and be unable to participate in the activities that he loves so much. But we have learned that Stargardt’s patients lose only their central vision while maintaining peripheral vision. Thankfully, Eric will not go completely blind, and, although he is considered to be blind, he continues to play sports, ride his bike and his scooter, and play with his friends.
Based on our experience, our best advice is to follow your gut feelings. Do not accept something as being the truth if it doesn’t sit right with you. Pursue all avenues available to you and be your child’s strongest advocate. After all, if you don’t do it, who will?
Autism: “I Knew Something Was Wrong.”
By Ginger Espino
My father used to call me a “Worry Wart.” As a child, I worried about everything, all the time. I’ve gotten better as an adult, but my friends still tease me. That’s why, when I started worrying about my son Patrick’s language development (or lack thereof), everyone said, “Ginger, you worry too much. He’ll talk when he’s ready.”
But they were wrong.
At first, we didn’t notice anything different about Patrick. But after his first birthday, I began to worry about his language development. As he neared his second birthday, and his friends’ speech was really taking off, I knew something was wrong. Patrick didn’t act like his peers; he wasn’t interested in toys or people, and he didn’t seem to understand anything that was being said to him. Everyone who told me, “Oh, he understands more than you think,” but I was still very worried.
When my husband Byron and I finally had him evaluated by professionals, they confirmed our suspicions. “No, he really doesn’t understand you. We think he has autism,” they said.
At that moment, I felt two things: justification that I had been right — that I wasn’t worrying needlessly — and extreme panic. “Oh, no!” I screamed inwardly, “I was right! What does this mean for Patrick?”
We had never considered that it might be autism. We thought it was just a speech delay that could easily be fixed with some therapy. And we continued to believe this for almost a year after the evaluation. “He’s not autistic,” we said to each other, in deep denial. “They don’t know what they’re talking about. He’ll be fine.”
Eventually, we came to accept that our son was autistic. Instead of fighting it, we needed to embrace it, get help and move on.
Patrick had been in speech therapy and occupational therapy since the evaluation, but we hadn’t sought out the autistic community, read the books, attended the conferences. (Because, of course, none of that applied to our situation.) But, as we came to understand more about autism, we realized that the disease represents a spectrum on which each individual has unique needs and strengths. We learned that we didn’t need to focus on the label, but on Patrick and what he needs from us and from those close to him.
Patrick is now 6 1/2. He’s in a cross-categorical first-grade classroom at Salem Elementary. He is learning to read; he is a computer whiz; and he’s making a lot of progress on conversational skills. He goes to birthday parties and Sunday School, and we just returned from Disney World. We are a family, just like all of you. We just have different challenges. Like other parents, we learn by doing, trying and making mistakes along the way. There are good days and bad days (and sometimes bad months). This goes with the territory. All we can do is be there for Patrick and get him the help he needs. We do this day by day, because it can be very stressful thinking about the future. We have no idea what Patrick is capable of, so it’s best to focus on the now.
I have come a long way since that day four years ago when I first read the words: “autistic characteristics”. I still have emotional days, especially when I want the family to do an activity that Patrick can’t handle, or when I see what other boys his age are doing and know that he’s not there yet — and may never be. But, overall, I am amazed at how strong I have become and how assertive I have become as his advocate. It’s hard to imagine Patrick being any other way, because he is who he is. He’s Patrick, and I can’t even begin to describe how much I love him.