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Down’s Syndrome & Heart Problems
While vacationing on Cape Cod, 8-1/2 months pregnant with my second child, my husband, son and I were playing at a park. As we gathered our things to leave, I heard a child call out "Mama, Mama!" I turned to see a little girl running frantically after us. She had Down syndrome. I remember saying, "Look at that cute little girl with Down syndrome. She thinks I'm her mother." Her mother apologized after gaining her daughter's attention, and I told her how beautiful her little girl was. Two weeks later I gave birth to my daughter Katie, who was immediately diagnosed with Down syndrome. I was devastated and in shock. I was a young, healthy woman and tried to think back to what I had done wrong during my pregnancy that would have caused this extra chromosome. I had an active two year-old son and wondered how I would ever manage my growing and challenging family. I had never heard the words early and intervention in the same sentence. But it came to be a critical element in our daughter's development and in my spiritual development as her mother. I have come a long way! She is a beautiful and entertaining human being. She is stubborn and tenacious and sensitive, all qualities that will take her far. She has taught me endless lessons of love, compassion and forgiveness, and she wants to share her love with everyone. I have three children now, all of whom have different needs. Each presents challenges and rewards. The road will not be without its ups and downs and I am excited for the experiences to come. May 1997 We learned our son Eli had Down syndrome only hours after his birth. The feelings of joy I felt for our family came to a halt with the news. I instantly had thoughts of limitations. Having Down syndrome would bring limitations to Eli, but what about my wife, son and daughter? What will our family be like? What kind of future would we have? Eli is now nineteen months old and I can barely look at him without smiling. He is developing into a wonderful, joyful and important part of our family. When I think about him now, I think mainly about his potential, not about his limitations. He is developing wonderfully at a pace that is slower than the course of his older brother and sister. Yet, it's his pace and his course. When my older son and daughter would reach goals in their development, I would eagerly look forward to their next achievement, their next goal. In the case of Eli, I find myself standing back and admiring his accomplishments, thinking, "Look what he did!" I usually praise him and clap. But often I see that he has beaten me to it and is already clapping anyway. Joyful... Rewarding... Exciting Dear Parent, Last week there was a message on our answering machine in which I was asked to write a piece for Children's Hospital's new Down syndrome handbook. My first reaction was one of delight and eagerness. I love to share stories about our wonderful six year-old son, Brian, who happens to have Down syndrome. I also welcome the chance to get the word out to new parents, who may be uncertain about what their child's future holds, that raising a child with Down syndrome is indeed, a joyful, rewarding and exciting experience. As I thought more about writing this piece, though, I started to feel a bit overwhelmed; how could I possibly condense all the things I want to say about Brian into a few short paragraphs? So I've decided to forego the many happy tales of Brian's infancy and toddlerhood and focus, instead, on his past year: kindergarten. Brian is fully included in our neighborhood school just four blocks from our house. It is the same school that Brian's sisters, Maggie, 3, and Evie, 1, will go to in the future. In a class of 22 students, Brian is the only child with special needs. It was apparent from the earliest days of kindergarten that he fit right in. Brian has an aide, but the other students don't see her as such; they simply think that they have two teachers. An array of specialists— a speech therapist, physical therapist and occupational therapist— help Brian, but they do not pull him out of the class. Instead, they blend right in, forming small groups to do projects which benefit Brian and the other kindergartners as well. Academically, Brian has more than held his own this year. Books have long been a love of Brian's. In fact, he won the Bookworm Award at camp two years in a row! So he has been highly motivated to learn the alphabet and letter sounds. I can't say that we were surprised to learn at one of Brian's first TEAM meetings that academically, Brian was ahead of some of his typically developing classmates. Brian's love of letters, however, has also contributed to one of the most bittersweet truths for him: because of his low muscle tone, his fine motor skills are delayed, and for a long time, he could not write the letters he so dearly loved. Thank heavens for computers. I am happy to report that over time, the obstacle to writing has been overcome. Soon after the first of the year, Brian and his classmates gathered at meeting time to discuss their New Year's resolutions. Brian earnestly informed his class that he was going to learn to write his name that year. (Talk about tugging on my heartstrings...) A couple of months later, the class was working on a math project which required them to count groups of objects set up at several stations around the room and write the correct numbers on a piece of paper. Brian had the help of an aide, but she was soon called away. When she returned, she found that Brian had not only correctly identified the number in each group but had written them down by himself. And, he was also tutoring a classmate who did not understand the activity! Emboldened by his success, Brian soon ventured out and wrote his name for the first time. It just so happened that the following week was "Pride Week." Not surprisingly, Brian listed "writing my name" as the accomplishment he was most proud of. Now, writing his name is getting to be so commonplace that Brian even jokes about it. I asked him to show our neighbor how he could write his name with sidewalk chalk. With a twinkle in his eye, he wrote D-A-D. That's a six year-old sense of humor for you! Kindergarten has been a great year for Brian socially too. In December several classmates came to his birthday party. He has been the guest at a number of birthday parties as well. Recently Brian's aide shared a behind-the-scenes story with me: at the end of the school year, the teachers casually poll the students to find out who their best buddies are in an effort to ensure that all children have at least a couple of good friends in their first grade classes. Imagine my delight when Brian's aide told me his name was one that popped up on the most lists. Having shared the above stories about Brian's kindergarten experience, it is only fair to point out that things do not always move along without a hitch. At times, Brian gets frustrated, which he channels into throwing things. That's fine when it's balls, but not so fine when he's tossing Fisher Price Little People around our playroom. However, the negatives pale in comparison to the many, many positives. And the negatives often turn into positives; I cannot even begin to convey to you how sweet the victory is when Brian clears a hurdle, overcomes an obstacle or conquers yet another challenge. Brian is our oldest child. He was our introduction to parenting, and what a perfect introduction he was. Because of Brian, Dan and I are more intentional about parenting than we might otherwise have been. We take nothing for granted and are closely attuned to the growth processes of all our children. Development, regardless of its pace, is a truly amazing and miraculous thing. We thank Brian for bringing it to our attention. Let me close by saying that Brian is a remarkable person. We love him dearly, are very blessed to have him as our son and are incredibly proud to be his parents. May 1997 Nolan is the world's biggest Beatles fan. I think we started it. Not being crazy about kids' music, my husband and I began playing Beatles and Beach Boys tapes on long car trips. Nolan owns every Beatles CD and knows all the lyrics, except for The White Album, which he doesn't seem to care for. Nolan is a drummer. He has a drum kit in his room and never leaves the house without his sticks. He drums on everything. Recently he attended a Ringo Starr concert in Boston I think more people were watching the little boy with the yellow drumsticks than were watching the show. This summer we are going to England for vacation. Nolan insists that we go to Abbey Road to meet the Beatles. Nolan loves to draw (mostly pictures of the Beatles). He loves to write (mostly stories about the Beatles). He knows all his letters, reads hundreds of words, counts and adds. He has many friends. For his seventh birthday, he's going to have a Beatles party with eight kids. Next year he will be in first grade. When we give birth to our children, we begin to develop the muscles necessary to accommodate their increasing weight. As they grow, our ability to hold, lift and carry them also grows. When the child has Down syndrome, our emotional muscles grow too. With each new challenge, we gain strength. When Nolan was born almost seven years ago, contemplating our future was terrifying. When I would start to think about school, socialization, speech or toilet training, the future seemed overwhelming. I sought out older kids and adults with Down syndrome in an effort to make sense of what our future would be like. Then I realized that I had to let it go. I concentrated on the present. I developed the muscles to handle each step into the future. I'll never forget the day that Nolan's physical therapist mentioned that he would probably never ride a bike. He was about two at the time. I was devastated. I called my husband, sobbing. His response was, " You haven't ridden a bike in 10 years. Is your life complete?" If Nolan never rides a bike, what's the problem?" My advice to new parents of a child with Down syndrome is to not think about the future at all. Enjoy each day and the gifts that come with it. You and your child will take care of the future when it arrives. My second piece of advice is to remember that you have a baby first, not a child with a disability. I believe Nolan's greatest gift was that he was our second child— not because his big brother is so helpful or treats him so well, but that as parents, we could not devote all our energy to him. We still had our lives to live and needed to allow our oldest son to live his life. As a result, Nolan was on the beach at two weeks, at concerts, on sleepovers— all over the place. In addition to leading a "normal" life, remember that you cannot "therapize" a disability of your child. Do not make yourself or your child crazy with therapies. All have a place and purpose. But remember: you have a child, not a disability. Let your kid be a kid. There is as much therapeutic value in playing on the playground with other children as there is in an hour of speech or OT. Enjoy the world together. Nolan is almost seven. In addition to the Beatles, he enjoys swimming and riding his brother's two-wheeler with training wheels. Maybe by this fall the training wheels will come off. Maybe not. The future will take care of itself. An Attachment That Was Like No Other... When I received a phone call that my two close, young, healthy and happy friends had just given birth to a baby with Down syndrome, I was shocked and did not understand. I did, however, want to show my immediate support and drove to the hospital, expecting an awful experience. The minute I met Katie and held her, I felt an attachment that was like no other, even different than to my own child. It was just different. Because of Katie's parents' amazing patience, knowledge and willingness to answer endless questions regarding Down syndrome, while at the same time learning themselves, I also became more knowledgeable about it and had more to offer as a friend. I quickly learned that what other people don't know about Down syndrome largely determines their attitudes. Katie is a great kid. She is so animated. (She likes doing her gymnastics routines all over the house!) She is incredibly lovable and gives the best hugs ever. And she is spirited beyond belief. Like many children, she does not hesitate to communicate what she wants. She loves to be with other children. She is driven, independent and confident. I do not focus on the fact that Katie isn't a typical child, or that it takes her longer to do some things or that she may require more attention than some children. It is so easy to look past all of that and see what an awesome individual Katie is. She has an amazing family that provides unconditional love. Best of all, Katie is happy! Close Family Friend I am a friend of Katie's. She is a four year old girl who happens to have Down syndrome. To know Katie's family is to know her, for although they are each special individuals, they share a unique trait: the gift of friendship, one that says I am here for you. I enjoy what you do. I am sad when you are sad. I celebrate your triumphs. As life unfolds for Katie, she will have a friend and be a friend. This is a trait that cannot be measured on any developmental chart.
Close Family Friend I love Katie because she's family. I love Katie because I love all the kids that have come my way through family and in the classrooms throughout the years. I love Katie because she needs me. I love Katie because of her strong will, her tenaciousness, her aggressiveness. Her playfulness makes me laugh, her serene, beautiful face staring into the distance fills me with awe. I wonder what thoughts meander around inside her head. You haven't seen blue until you've seen her eyes fixed somewhere, looking far away where you can't go. I love Katie's music, her songs, her dance, her rhythm. She learns through repetition, just like all kids do. Some take longer than others. I love the way Katie has learned to communicate with me, her vocabulary growing all the time. When she doesn't know the words, she signals. She has never had a problem communicating her love for me. She grasps me in a hug that speaks volumes. She snuggles during a story. She reaches for my hand. I am told that Katie has special needs. I say that all kids do. Her special needs say to me, "Love me. Help me. Reach out to me." I respond to her, "I will be there to love you, to help you, to teach you. And I will be there to be loved by you." Katie's Step Grandmother When my niece Katie was born, very unexpectedly with Down Syndrome, I learned a lot in a very few days, trying to find out exactly what this meant. At the time, my husband and I were planning to have a third child. With the sudden family "history" now, especially since her mom is my younger sister, there was an increased risk of Down syndrome in our family. With all that we now know about it and especially knowing Katie, we decided to continue to try for another child. Now almost five, Katie is a wonderful little girl and we love her dearly. I believe she has brought out the best in her parents and has made each of us who knows her a better person.
Katie's Aunt
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© 2007, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated February 1, 2007 |
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