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As They Grow: Older Children with Down Syndrome (Part 2) - July 18, 2007
One mother of a baby with Down syndrome said that her first thought, even as she nursed him in the hospital, was "How will he get a job?"
It is one thing to enjoy a small child's antics and feel they are adorable, even if they have Down syndrome. Television shows like "Life Goes On" and the use of child actors in commercials or drawings in books have helped to change persons' immediate reactions to the well-known markers of Down syndrome. Whereas in the past children were sometimes even hidden by their families from public view or sent to live in an institution, today, thankfully, things have changed.
But how do such children really fare when they grow up? What do they face in high school and the working world? I'm focusing on this topic because I feel many more attitudes need to change.
Valle Dwight, the mother quoted in the opening illustration, writes about the future ahead for her child and others in a new collection of essays by Moms, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Woodbine House, 2007). "The future for people with Down syndrome is brighter than it has ever been, which makes me hopeful for my son's adulthood. Early intervention, medical advances, inclusive schools that educate all kids together, and new therapies mean that people with Down syndrome can live longer, achieve more, and contribute to their communities in meaningful ways. Most of them graduate from high school; many live independently, marry and have jobs. So while I wondered on Aidan's first day of life how he would even find a job, now I dream about the possibilities."
In this book, I particularly enjoyed reading about 13-year-old Kellen, written in the form of a letter to him from his mother, Jodi Reimer, detailing why she is so proud of him. Here are some excerpts:
"Dear Kellen: Thirteen years ago when you were born, I could never have imagined you as a teenager. Your dad and I were so busy adjusting to the news of your extra chromosome, your heart defect, and your colon disorder. As time went on and you met your medical challenges one by one, we did try to imagine the future. It was still scary, but as we talked to and met other parents of children with Down syndrome, a flicker of hope began to burn in us. We realized that if we worked hard together, it was possible for you to have a good life."
Jodi, the mother, goes on to explain how proud Kellen is at the independence skills he's developing, like being able to go and buy his own snack at Costco while his mother waits in line to pay for groceries. "Before I know it, you are heading back to me with your hot dog, your pop, and your beautiful 'proud of myself' smile. You are satisfied because you were able to articulate your order to a stranger and make yourself understood."
She goes on, "When you were a baby, I used to think about what life would be like when you grew out of your 'cute stage.' Would people treat you harshly? Sometimes I thought it would be nice if you stayed small and adorable forever. But I didn't realize how fun and fascinating it would be to see your gifts, talents and personality develop. Your sense of humor often takes me by surprise. Remember when your teenage sister was getting emotional about something or other and you said under your breath, 'Drama queen'? Or the morning the whole house was in turmoil before the school bus came and you went and put on your lifejacket?"
Another mother, Barbara Curtis, writes about Down syndrome son, Jonny. She is the mother of 12 (including three sons they adopted with Down syndrome after Jonny was born). In the 14 years since the birth of Jonny, "I've done my best to eliminate the terrible fear our culture instills in our hearts of having a baby who is somehow regarded as 'less than' what is expected. The greatest gift Jonny gave me was that I could look around the circle and see all those children as beautiful--a small glimpse of how our Heavenly Father sees all of us in spite of our flaws and infirmities."
Another mother wrote Barbara saying that after reading her blog about life with a child with Down syndrome, "I am not as concerned about my baby having a disability." Barbara reflects that looking back, perhaps she was the "disabled" one, by her limited view of persons with Down syndrome. "But where I was blind, I now can see," she says.
Contributed by Melodie Davis: [email protected] Melodie is the author of eight books and writes a syndicated newspaper column, Another Way
One mother of a baby with Down syndrome said that her first thought, even as she nursed him in the hospital, was "How will he get a job?"
It is one thing to enjoy a small child's antics and feel they are adorable, even if they have Down syndrome. Television shows like "Life Goes On" and the use of child actors in commercials or drawings in books have helped to change persons' immediate reactions to the well-known markers of Down syndrome. Whereas in the past children were sometimes even hidden by their families from public view or sent to live in an institution, today, thankfully, things have changed.
But how do such children really fare when they grow up? What do they face in high school and the working world? I'm focusing on this topic because I feel many more attitudes need to change.
Valle Dwight, the mother quoted in the opening illustration, writes about the future ahead for her child and others in a new collection of essays by Moms, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Woodbine House, 2007). "The future for people with Down syndrome is brighter than it has ever been, which makes me hopeful for my son's adulthood. Early intervention, medical advances, inclusive schools that educate all kids together, and new therapies mean that people with Down syndrome can live longer, achieve more, and contribute to their communities in meaningful ways. Most of them graduate from high school; many live independently, marry and have jobs. So while I wondered on Aidan's first day of life how he would even find a job, now I dream about the possibilities."
In this book, I particularly enjoyed reading about 13-year-old Kellen, written in the form of a letter to him from his mother, Jodi Reimer, detailing why she is so proud of him. Here are some excerpts:
"Dear Kellen: Thirteen years ago when you were born, I could never have imagined you as a teenager. Your dad and I were so busy adjusting to the news of your extra chromosome, your heart defect, and your colon disorder. As time went on and you met your medical challenges one by one, we did try to imagine the future. It was still scary, but as we talked to and met other parents of children with Down syndrome, a flicker of hope began to burn in us. We realized that if we worked hard together, it was possible for you to have a good life."
Jodi, the mother, goes on to explain how proud Kellen is at the independence skills he's developing, like being able to go and buy his own snack at Costco while his mother waits in line to pay for groceries. "Before I know it, you are heading back to me with your hot dog, your pop, and your beautiful 'proud of myself' smile. You are satisfied because you were able to articulate your order to a stranger and make yourself understood."
She goes on, "When you were a baby, I used to think about what life would be like when you grew out of your 'cute stage.' Would people treat you harshly? Sometimes I thought it would be nice if you stayed small and adorable forever. But I didn't realize how fun and fascinating it would be to see your gifts, talents and personality develop. Your sense of humor often takes me by surprise. Remember when your teenage sister was getting emotional about something or other and you said under your breath, 'Drama queen'? Or the morning the whole house was in turmoil before the school bus came and you went and put on your lifejacket?"
Another mother, Barbara Curtis, writes about Down syndrome son, Jonny. She is the mother of 12 (including three sons they adopted with Down syndrome after Jonny was born). In the 14 years since the birth of Jonny, "I've done my best to eliminate the terrible fear our culture instills in our hearts of having a baby who is somehow regarded as 'less than' what is expected. The greatest gift Jonny gave me was that I could look around the circle and see all those children as beautiful--a small glimpse of how our Heavenly Father sees all of us in spite of our flaws and infirmities."
Another mother wrote Barbara saying that after reading her blog about life with a child with Down syndrome, "I am not as concerned about my baby having a disability." Barbara reflects that looking back, perhaps she was the "disabled" one, by her limited view of persons with Down syndrome. "But where I was blind, I now can see," she says.
Contributed by Melodie Davis: [email protected] Melodie is the author of eight books and writes a syndicated newspaper column, Another Way
