My cousin Kendall passed away this past year at the age of sixty-one years as we count chronologically, but he never grew up. Kendall was born in Dhahran, Saudi Arabia, and had Down Syndrome. His parents, my aunt and uncle, lived over seas for thirty years, and nothing much was being done at that time anywhere in early education for the mentally handicapped or the parents. Abnormalities in a birth always come as a surprise to parents happily looking forward to a life filled with so-called normal expectations, but to older parents living in a third world country, Kendie’s birth was heartbreaking and unexpected.
Their initial and common reaction was to take the blame. “what have I done?” “How could I have prevented this?”
Down Syndrome is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.
The average IQ of a young adult with Down Syndrome is 50, or equivalent to the mental age of an 8- or 9- year old child, but this varies widely. Education and proper care have been shown to improve quality of life, ideally from birth on. In the past, the life expectancy was about 30 years, but now it is about 50 or 60. Down Syndrome is the most common chromosome abnormality in humans, occurring in about one per 1,000 babies born each year. It is a lifelong condition, but with care and support, children who have Down syndrome grow up to have healthy, happy, productive lives.
Fortunately so much has changed in public acceptance of the mentally challenged. A hundred years ago, these people were kept in a back bedroom, and lived out their brief lives alone and unseen. It was assumed that they were incapable of learning, and even their existence was kept a somewhat shameful secret.
Education and proper care have been shown to improve quality of life. My daughter earned her college degree in the study of the mentally challenged, some of whom had Down Syndrome. Specialized education is a wide open field and now some children with Down syndrome are educated in typical school classes. Some individuals with Down Syndrome graduate from high school and a few attend post-secondary education. In adulthood, about 20% in the U.S. do paid work in some capacity with many requiring a sheltered work environment.
Kendall’s life fell in the middle of an “enlightenment” period in that though he was ubable to participate in an early-childhood education in Saudi Arabia, he was later sent to a school in the U.S. where he lived throughout his life. He never grew beyond the size of a 9-10 year old, and he was always cheerful and happy as a small child, with a big smile lighting his face when he was pleased or when he recognized a friend. These people live at the very pinnacle of innocence. It is we who need the education to accept them for what they are, God’s Special Children
About 35 years ago, a friend with two young sons called early one morning to tell us of the birth of a fourth son. This family prided itself on building good health, strength and athletic ability. Each was proficient in sports. As Dr. Advice answered the phone, I caught a slight change of expression as he said “Maybe God thought you needed a cheerleader for your basketball team.” He had promptly diverted the conversation from one of mixed feelings into one of positive anticipation. Their fourth son had Down Syndrome.
At the time the University of Washington had a concentrated study of the condition, and the mother of this child went there from California and learned what was being done to educate babies from birth. Instead of waiting for several years before teaching basic skills, Blair began immediately being prepared to live in the mainstream of society. Before speech, he was taught sign language, which hastened his communication skills.
As soon as possible, Blair’s mother took him into school classes and introduced him, explaining to the students that he had Down Syndrome and what it was. When old enough, he was enrolled in school and treated just as any other student. He was never made to feel “different” or out of the loop. His mother organized a baseball club made up of mentally challenged children, which developed their concept of team play, and their natural joy in physical activity. She even went to members of the Oakland Athletics professional baseball team and appealed to them for pieces of athletic equipment, which they gladly donated, taking the little team under their wing.
To see Blair today, with his show of confidence and compare him to Kendall, a lot can be attributed to his early training.
Years ago, when Blair was about 5, I received this poem from one of his older brothers while he was a student at U.S.C.
My brother Blair, was born with Down Syndrome, a form of mental handicap. December 1990
BROTHER, by Sean Hogan
Brother so kind, how can it be?
Brother “What happened? How come he can’t see?
Brother I’m sorry; you will never be like me.
Brother your life will set me free.
Mother please, the blame will never be known.
Mother in this life, the harvest can not be resown.
Mother worry not so much for him.
Mother cry more for me and Tim.
Father others expectations may run too high.
Father friends will come, fear, and say goodbye.
Father they say patience and time can only tell.
Father without you, his life will surely be Hell.
Grandpa, has Peter now become your best Friend?
Grandpa, how come you never stayed till the end?
(As Peter denied the knowledge of knowing Christ, Grandpa tries to deny Blair’s existence and relationship to him.)
26 thoughts on “GOD’S SPECIAL CHILDREN”
Wonderful so touching Love you
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You had so much compassion when working with the handicapped. It takes a special person to do that job, and you have it. I have always been so proud of you.xxoo
Thanks Gerard. Sometimes we need help to recognize the beauty in everyone.
Thanks Gerard. I’m glad they are able to recognize that these people are infinitely teachable. One of the tricks is to begin early.
We have come a long way in recognizing the potential in those born with Down Syndrome. Remember that actor, Chris Burke, who starred in a TV series a few years back? He really opened my eyes to just how much a person with this condition can accomplish.
I remember that TV series “Life Goes On”. Apparently he also does folk singing as well.
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The poem is heartbreaking !!
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Isn’t it! Sean was doing some writing and we had talked abut his possibly becoming a writer. He sent me a note afterwards and the poem was enclosed. I remember his grandfather’s views. Sad.
Down Syndrome people are very largely accepted without much more than a glance, these days … We all know about their condition, and I suppose that it’s the knowledge that makes all the difference. How sad, in the past …
I remember my cousin hanging his head and saying “:They’re looking at me”. Not in a good way. We have evolved.
The friend who traveled with me to the Cajun Mardi Gras has a Down Syndrome son. His name is Miah, and he’s quite a guy. The whole family has made it possible for him to achieve so much. She wrote an extensive post about him, and how much he’s achieved. Even if you don’t read the whole thing, the photos tell the tale. The ones of him at his high school graduation and senior prom are especially wonderful. It just does my heart good to see them, and to hear stories like the one you’ve told here.
What a great post about Miah. I need to take more time and read her blog more thoroughly. Inspirational really. It takes a toll on the family sometimes. My aunt and uncle were older and though they lived to be 99 and 98, my cousin their daughter was left take over and it wasn’t easy although she welcomed the opportunity to know Kendall better. It’s a learning process on both sides.
on another subject, have you heard anything from Tandi? I miss seeing her posts.
No, I haven’t heard from her. In fact, I was thinking about sending an email or just leaving a greeting on her blog last night. It’s too soon for her to be gone with her mother on their great trip. She might be snowed in on an ice floe somewhere!
I’m glad you haven’t seen her either. Hope she’s OK though. Where will she be going on her trip do you know?
It’s a cruise up into the Artic Circle or some such, so it would have to be summer. May or June, maybe. Maybe later. There’s a post about it on her blog. Maybe do a search with “mother trip” as keywords.
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The poem, Kayti, so heartbreaking. His insight, his love. I’m crying. Thank you xxx
Wasn’t it just? It brought tears to my eyes as well. Plus I remember his grandfather’s opinions.
Here in Alaska, we count those with Down’s syndrome as sort of ‘angels amongst us’. We know none ate sweeter or more loving in our community. Some utter fools went into a gas station in the early morning hours 20 years ago, and bludgeoned the employee. More wrath could not have been unleashed on those young men. They had attacked one of Palmers most appreciated people, an attendant who offered kindness, respect, and good service to all. And who was a gainfully employed man with Down’s. Fools and cowards run. The bright and brave stay and are blessed beyond reason.
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No one could have said it better Angela. They really are angels unaware. Pure innocence. People like the ruffian criminals who did that terrible deed are cowardly fools as you say.
Some of the grocery stores here are hiring mentally challenged people to bag, etc. They are prompt and courteous and proud of their job capabilities. There are so many types of work these people could do.
Your story is heartbreaking.
A beautiful, sensitive post, Kayti. I’m troubled whenever I read of advances in genetic modification. Of course, it would be wonderful if science could ameliorate the sorrow of parents of children with Down’s or other syndromes or spectrums, but how awful to think of a future without diversity, where everyone has been engineered to be tall and reasonable.
Rather like the Stepford Wives! Frightening. Science and government seem to be determined to put us all in the same category. Maybe those “special” people who are different from ourselves are here to encourage our better souls.
Yes, I agree.
My sister-in-law’s 4th son is a Down’s Syndrome child – an adult now, at 30 – and when she fell pregnant again a scan suggested she may bear another, but she refused to contemplate aborting as that would place a lesser value on the life of their previous son. He wasn’t born with Downs, but has mental challenges of a different type. This family has taught me so much about love, they all pulled together to cope and teach and nuture. Their special closeness was put to the test further when my brother-in-law died from bowel cancer. I cannot think about their love and support for each other without tears. They humble me.
I have thought about your comment so mjuch in the last few days. What a difficult decision your sister-in-law had to make. Sort of like a Sophie’s Choice. So much love and hope in their decision. I admire her so much. So sorry for your family loss. It brought even more difficulties in her life, but i can see she is a courageous person. I will keep her in my thoughts.
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Thank you for your kind thoughts, Kayti.