May 2007 Issue
DSAGSL Annual Membership Meeting: Wed. June 27, 2007. 7:00 - 8:30 p.m. St. Louis Children's Hospital, Third Floor Auditorium. Election to our Board of Directors, Volunteer recognition, overview of the past year's activities, plans for 2007-2008 and Janet Webb, Education Coordinator, Community Outreach for St. Luke's Hospital will present "Stress and Parenting". Attendance prizes, including 4 tickets to the DSAGSL Walk in the Park Sep. 2 Cardinal game. Kamali Mitchell receives a "Do the Right Thing Award" Kamali Mitchell received a "Do the Right Thing Award" from the Edwardsville school board for his outstanding leadership character shown in and out of the classroom.
When the boy said that he was feeling too weak to walk all that way Kamali picked him up and carried him the rest of the way so that he would make it safely to the Nurses office. Kamali is currently in 5th grade at Woodland Elementary School in Edwardsville. His homeroom teacher is Mrs. Kelly Baird and the Principal is Mrs. Nancy Spina.
Kamali has shown himself to be a leader to the younger students in his classroom showing them around and helping them to get acclimated to the new environment when they come to the school. His teachers say that Kamali makes the new classmates feel very comfortable and welcome. Kamali has had a positive influence on the students and the staff at Woodland Elementary.
Kamali and his proud parents, Marc and Peggy, live in Glen Carbon and are board members of the Riverbend Down Syndrome Association.
Local EventsJune 11- 15. Lose The Training Wheels Bike Camp "2 Is Greater Than 4." West County Christian Church, 17795 Wild Horse Creek Road. Chesterfield, MO 63005. Sponsored by the Down Syndrome Association of Greater St. Louis and the Pujols Family Foundation. Contact: Gretchen Montgomery, E-mail: email@example.com. For more information, see: http://www.losethetrainingwheels.org. June 13- 15. Jensen-Schmidt Tennis Academy for Down Syndrome. Children and young adults with Down syndrome are invited to attend the Academy that focuses on physical training, tennis instruction, and fun. The Academy will be hosted at the Creve Coeur Racket Club. For more information, call (314) 606-3639 or to download a registration form, go to: www.jensen-schmidt.com. September 28, 11:00 a.m. Puttin' for DS. The third annual charity golf scramble will be held at Clinton Hill Golf Course in Swansea, IL.
Dinner and silent auction will follow. Lunch, cart, drinks, and prizes will be included. Proceeds to benefit St. Louis Children's Hospital Down Syndrome Center and the Down Syndrome Association of Greater St. Louis. For more details, contact Tim Nienhaus E-mail: firstname.lastname@example.org or (618) 799-8515.
Molly made her First Communion in May. "A true milestone, Mrs. Hanson," said the priest, referring to the fact that our three daughters had now all been through this rite of passage. I nodded, smiled and thought, "You have no idea."
That weekend, Molly had come home from foster care in "big girl" panties for the first time. She was finally toilet trained at eight and a half. I didn't take any chance on her big day, however. Under her pretty white dress I put Pull-Ups on one more time.
First Communion was a Christian ritual we were going through for the third time in as many years. I was anxious to have Molly make hers at the age-appropriate time, if only to keep the process on schedule of moving our children through the various sacraments-First Communion, First Confession and Confirmation. Tina and Maya made their First Communion when they were Molly's age. Maya will be making her First Confession next year, and Molly should be making hers the year after that-just before Tina begins preparing for Confirmation.
When I grew up, you made your First Confession and Communion at the same time-in first grade-when you reached what the Catholic Church called "the age of reason." I didn't know whether Molly had reached the age of reason, but we attend a very inclusive Catholic Church in Minneapolis that isn't rule bound. "Molly can make her First Communion whenever you want her to, Mrs. Hanson," said Kathy Itzin at St. Joan of Arc. We forged ahead. Still, I had my doubts about whether Molly would "get it" as we commenced our weeks of preparation. I was pleasantly surprised.
Molly and I did a lesson or two together every week in the month before her First Communion. She seemed to look forward to this special time we shared when she came for weekend visits from the foster home she lives in during the week. She'd sit up close to me at the kitchen table as we read from her workbook and shoo her sisters away if they tried to join in. Molly seemed to "get it" much better than I anticipated. Sometimes she'd asked if we could do another lesson.
During one of Molly's weekly visits in March, we tried on dresses. Maya had been unable to wear Tina's so we already owned two First Communion dresses. I prayed we wouldn't have to buy a third. We got lucky. But I was surprised that Molly could wear Tina's dress, the smaller of the two. I used to joke that my home grown child (Molly) was bigger than our imports (Tina and Maya having been adopted from Honduras). This was clearly no longer true. Molly was tall, thin and very pretty in Tina's dress; she could wear Maya's veil and we took her shopping for new shoes of her own.
In April, I sent out invitations to everyone I could think of. I was anxious to make this event special for Molly for whom I'd never staged as much as a child's birthday party.
Maya was starting to get jealous. "You didn't invite all these people when I had my First Communion," she said. "She'll get over it," Jim said.
Finally the big weekend arrived. Friday night I bathed Molly, using special, perfumed shampoo and soap her big sisters keep in their bathroom.
I rarely bathe Molly since she's only with us one night a week and her Foster Mother often bathes her before she sends her home. If Molly thanked me once, she thanked me ten times for this simple act other Mothers perform with their children daily. I smiled but my heart hurt when she said, "Thanks. Thanks for the bath, Mom."
First alone and then with the family, she and I practiced eating the bread and wine, using French bread and apple juice, which I'd poured into one of the Waterford crystal goblets I'd bought when my Mother and I went to Ireland.
"Body of Christ, Molly," I'd say.
"Amen," she'd answer.
Saturday morning I dressed Molly, and Tina did her hair. As we left the house, I asked Molly to stand on the front steps so I could take a picture. She refused to wear her veil, but she looked beautiful. Without prompting, she folded her hands in prayer for the camera. SNAP. I got it for posterity.
We were on our way into our church in the city by 9:00 A.M. Because Molly is disabled, we'd been assured seats in the front row, but we also wanted to be there early to usher our friends and family into the correct chairs. Several came. There was Marge Delin . . . There was Mary Jane Heinisch . . . There was Nancy Kiolbasa.... And there was my sister, Sally, her husband Ray and their son, John, who would be making his First Communion in a couple of weeks.
Molly covered her ears and cuddled next to her Daddy and me for most of the service.
But at the right time and in the right way, she moved with her family to the front of the church and said "Amen" when the priest said, "Body of Christ," and "Blood of Christ," a moment later. It's hard to describe the pride we all felt.
We stayed around for cake afterwards, then headed home for a picnic lunch with friends and neighbors in the backyard.
The only wrinkle came much later in the day when Molly let herself out the front door and disappeared for half an hour. The family took off in four directions to find her, our hearts pounding. Maya spotted her across busy Croixwood Boulevard in the yard of perfect strangers. They'd offered to take Molly home if she could tell them where she lived. She couldn't.
"I wait here for Mom," Molly had said. "I wait here for Mom." I thanked these people for their kindness. And I thought again of what the priest had said that morning at Molly's First Communion: "A true milestone, Mrs. Hanson." Father, you have no idea.Down's syndrome: 'She wasn't the daughter I wanted' by Edward Batha, Sep. 19, 2006. Reprint permission granted on the behalf of the author by Dan Hedley, Syndication Executive, The Independent © 2006.
The registrar looks at the baby for a second before returning his attentions to Tash and passing our first-born to the nurses to be slapped and wrapped. For a second, I sense something is wrong. They examine for just a bit too long, considering what an everyday event this must be to them. "Congratulations on your beautiful girl," they say to Tash as they hand over the purple, wrinkly baby. I ask if there is anything we should know, and then they say it: "I'm afraid we suspect she suffers from Down's syndrome." Wham! You can feel one-half of your brain try to block the information as the other half staggers under its weight. Down's syndrome, my ultimate nightmare come true.
Fourteen hours before, we had gone for a scan and been told, "The baby hasn't eaten for two weeks. It's not a problem, but she's got to come out." Thus ushered in one of the most intense weeks of my life. A squirt of prostaglandin was administered to kick-start labour. Thirty seconds later, labour started and after five hours contractions were so strong Tash was sick in the bath. When someone finally examined her, she was fully dilated, and suddenly everyone seemed to appear - probing, gassing, scurrying, and generally mauling her. Ten minutes later as Tash pushed, the registrar pulled. A few long tugs and the blooded placenta bowed out, too. By the end, it felt like she might as well have been squatting in the woods.
We were just starting to recover from this extreme primal experience when we were given the news. Poor Tash. I just remember her looking at me and saying, "We'll be all right, won't we?" and me saying, "Of course", and thinking, "Aaaargh". Reassuring each other seemed a lot easier than reassuring ourselves. Being a man, I had to get some distance and while Tash had a bath, I went and stood outside, smoked cigarettes and just thought, "My life is over." That night we went to sleep clinging to each other.
The next few days are an emotional rollercoaster. Every time your brain returns to the subject, it's like testing the memory. Every time I test accepting the situation, I feel sick. Incrementally, the enormity of the situation sinks in and you are left numb over how long a sentence you have been handed out. I thought I could manage being a parent, but I don't think I care enough to be a carer.
Thinking these angry, cruel, and shameful thoughts is all part of this initial stage and to deny them is to store up trouble for the future. Questions such as, "Would I rather she had been born dead?" and "When can surgery make her face more normal?" cross your mind. At first, we cannot face telling anyone. This is worse for the mother, who has nurtured her child all this way and then is left wishing she had a different one. Suddenly the world is full of smug parents with their normal children. You hate them for their carefreeness. "Do you want to come to the new parents' coffee morning in the day room?" Only if I can bring my Kalashnikov.
They give us a perpetually hot room to ourselves, so that through strength and tears we can try to come to terms with what lies ahead. We are all used to having a say in the major events in our lives, and being able to opt out if we don't want it any more. Not here, though. This is a fait accompli, the only choice is to take it or leave it. Half the Down's children in our hospital are left behind. This, at least, is one subject we don't have to discuss.
Then there's blame. Who's to blame? Am I to blame? Could it not have been prevented? Every pregnant mother is offered screening for Down's. At 39, Tash is at the older end of childbearing, so the NHS gave her a 1:80 chance of having a Down's baby. At 12 weeks we had a nuchal scan, which measures the thickness of the back of the baby's neck - a possible indicator for Down's. The result of this test (which I later learn is only 75 per cent accurate) reduced the risk to 1:173, which seemed safe, if scary. But as we were still considered high-risk we were offered an amniocentesis. Here, a sample is collected via a needle injected into the amniotic fluid, thereby giving a definitive genetic result. However, this can only be done in the 18th week and comes with a 1:100 chance of miscarriage. Statistics were never my forte, but we did not feel the risks fell down in favour of the amnio test.
This is an area we revisit repeatedly in the days after the birth: did we miss something? Did we make the wrong decision? The more we try to make the maths explain it all, the more unanswerable questions assert themselves: if we'd had the amnio, would we have terminated at 18 weeks? Would this have caused huge rifts between us? What if we never had another chance for a child? What if we had miscarried a healthy child? And now we have the lovely little bundle of daughter in a cot at the end of the bed, am I really spending my time working out the ways I could have killed her off?
After blame comes downright selfishness - I do not want my dream of wandering down our sunny street holding hands with my beautiful daughter dissolving into one where everyone stares at us because she does not look right. Tash does not want to lose the pride she wants to feel in bringing up a spunky, successful girl. Coming to terms with the situation means saying goodbye to many of the hopes and expectations one has had for one's child's life, and hello to a new spectrum of mostly less palatable issues of mental and physical disabilities including possible sight, hearing, and heart defects.
But with time, conversation and a good dose of gallows humour comes a philosophy and resignation, and this creates acceptance. This is the turning point. The other factor, of course, is baby Mia. Through all the tears, fears, frustration, and anger we start to love our baby. She may have slanty eyes, but they are actually quite beautiful and she stares deep and long at my face. The myriad faces she can pull are fascinating; some are so charming and none different to any other baby. One evening she lies on my chest and I feel the life coursing through her. She is alive, she is who she is, and she is ours. Gradually your mind starts to focus more on her, for it is she who will bear the brunt of having Down's syndrome, and what she needs most is our love and determination.
After four days of hard work by Tash and the midwives, Mia starts breastfeeding and a huge bond is forged between mother and baby. Tash emanates happiness. Now, when she is with Mia, all-negative thoughts vanish. Also, knowing that children with Down's lag behind other learning patterns, the speed with which she cottons onto breastfeeding is encouraging.
Gradually, the pressure is starting to drop. Our families come to visit and coo while friends offer love, encouragement, and wisdom. The hospital finds a double room for us all and I spend nights in the hospital to be with Tash during the lonely hours when thoughts creep up in the dark. This is all the more important, as the echocardiogram has found holes in Mia's heart and she will be needing heart surgery in a few months. Although this is common among Down's babies, it just seems so unfair. Hasn't she had her share?
With breastfeeding established, Mia loses her nose tube and moves in to the room with us. We start to feel less cut off from the world. We learn to bathe the baby and change nappies. Maybe we will be all right after all.
In the hospital café, we approach other families with Down's kids, all with their own story. "You won't always feel like this," Tash is told. The gamut of the condition is wide, from one Spanish boy who could speak three languages aged seven to another who just waves a flag and still wears a nappy at 11. The nobility, resilience, and love of the parents, and the friendliness of the children, brings a faith in humanity that is hard to find in everyday life.
It seems that the stance adopted towards those with Down's syndrome has moved a lot over the last 15 years. Whereas experts previously preached segregation, now, where possible, integration is the key word. Those affected are now seen to be individuals on a spectrum and a child's placing can be dramatically improved by early learning and specific training. Early intervention, for example, can hopefully teach her to speak more clearly and also to keep her unfortunately large tongue in her mouth, thereby reducing one of the more obvious physical signs of Down's. Children with the syndrome learn better by example and practical application, so tend to enjoy pursuits like acting, music, and gardening. It is now quite usual for them to attend regular schools and a few have even made it to college. It is not uncommon for them to get married or live happily with partners. From the ashes of one set of dreams and aspirations, so rise the next.
And so you accept, the die is cast and now we must just get on with it. We leave the hospital 10 days after the birth, eager to be home and get on with life with our baby. Tash and I are twice as strong with each other now; we were dealt the killer blow and got through it with affection and kindness, rather than blame and acrimony. We are proud of each other. A phalanx of people from local councils, welfare, hospitals, and health trusts descend on us offering help. A special needs outfit is dropping toys off next Friday and starting Mia's training process. The great thing about something as relatively common and pinpointable as Down's syndrome is that a whole structure of response, help, and monitoring automatically kicks in.
The day after I get back I go for a walk and realise quite how many different people there are on the streets of London, and it suddenly seems less likely that my daughter will stick out so much. The tremors are easing and a semblance of normality is being reclaimed. Humans survived because of their adaptability and so over a short process our life has accommodated the disaster. And baby Mia, who has somehow managed to swerve through man's best efforts to search and destroy her kind, has made it. She is immensely welcome.Not an "Error" But Our Child by Laura Echevarria. National Right to Life News, February 2006. Reprint permission by Dave Andrusko, E-mail: email@example.com.
Sarah Hanson is an adorable nine-year-old. Looking at her photo, you immediately notice her strawberry blond hair, her blue eyes, and her ready smile. She recently was named Student of the Week at school. Her teacher wrote, "Sarah demonstrates the six pillars of honesty every day. She is honest, kind, and compassionate. She plays by the rules and always perseveres, trying to do her best. Sarah is very enjoyable to have in our class."
You may have noticed from her photo that Sarah has Down syndrome. Some children with Down's are more susceptible than other children to certain conditions and diseases. While the winsome photo of a cute and happy Sarah gives little evidence of the struggles her body has gone through, her facial expression tells us she is loved and adored by her parents.
When Brenda was seven months pregnant, she and her husband Mark were told that something was "wrong." Their daughter had Down syndrome. Brenda says that her doctor never mentioned abortion but she and her husband would never have considered ending their unborn child's life.
Since her birth, it seems as if Sarah has suffered from every disease or condition her Down syndrome makes more likely to occur. For instance, when she was 20 months old, Sarah's young body was ravaged by a series of strokes that left her a quadriplegic. Moyamoya syndrome, the condition that caused the strokes, is an extremely rare genetic condition that occurs more commonly in children with Down's. Sarah subsequently had to have lifesaving brain surgery to route new blood vessels and provide her brain with a better and more reliable supply of blood.
Likewise, leukemia is often more common in children with Down syndrome than with children in the general population. Sarah has suffered from this disease but is in her second year of remission.
While Brenda and Mark have had more than their fair share of troubles, Brenda has an amazingly positive response to helping Sarah deal with her disabilities and conditions. Brenda views them as opportunities to become better parents and better people.
She is unstinting when she writes about Sarah's medical conditions. Sarah, Brenda writes, has "Down syndrome and hydrocephalus. And a heart defect. And a vascular disorder that led to some serious strokes, which led to spasticity and the inability to perform any activity independently. And a feeding tube. And diapers for the rest of her life. And acute lymphocytic leukemia."
But, at the same time, "I [have] never, ever, ever thought of Sarah as an 'error.' ... Children with Down syndrome, just like normally developing children, have the potential for experiencing life. There is purpose in that. They have the potential for teaching us the joys of 'small' successes. They remind us to be thankful for our health and life and capabilities-because each of us, really, is just one car wreck away from being disabled ourselves. [Children with Down syndrome] offer us the chance (in C.S. Lewis' words) of 'becoming heroes.'"
It's not that Brenda and her husband haven't struggled, or that Sarah's diseases and conditions haven't taken a physical, mental, emotional, and spiritual toll. But, as parents, Brenda and Mark have taken the opportunity to experience Sarah's life as a blessing-however long Sarah may be with them.
Sarah is a happy little girl who strives to do her best. In turn, she has brought out the best in those around her.
One example is Sarah's 10-year-old cousin Emily. Emily was assigned to write a paragraph at school about a Christmas wish. She wrote:
"If I could give one wish to someone it would be my cousin Sarah. I wish that doctors could find all of the cures for Sarah's many diseases. One reason I would wish for this is so she wouldn't have to go to the hospital. She has to go for a lot of transfusions. Sarah has multiple diseases and disabilities. I wish that I could find a cure for her leukemia also!! I would do this because that is her biggest complication and most serious she is facing right now. Sarah has a lot of complications and that is why I wished doctors could find a cure for them!!"
Sarah's young life, no matter how difficult, no matter how long, has been full and has had meaning. Brenda writes, "Sarah's Down syndrome and other medical struggles have meaningful purpose that I, as a parent, am responsible for helping her discover and then sharing with the world."
Would that the world would listen and learn.Book, Multimedia, and Software Reviews.
This is one book in a series, "Topics in Down Syndrome," published by Woodbine House. The second edition, similar to the first edition, is well organized and easy to read. It was written to serve as a practical resource for both professionals and parents. Professionals can use the information to explain to parents what a child with Down syndrome can do at different stages of development, and to provide parents with activities to do at home that will help the child master emerging motor skills. Parents will be able to use the book to understand how the development of fine motor skills re affected by the characteristics of Down syndrome, how to identify hen their child is ready to learn new activity, how to choose toys and activities that develop the basic components needed to accomplish a motor skill, and the approximate age hey can expect their child to master various skills.
The author clearly explains why a child needs to develop stability, bilateral coordination, and sensation before they can master finger and hand skills. Detailed guidelines tell parents how to facilitate the development of these basic building blocks by incorporating the exercises into day-to-day activities.
It is generally accepted that children with Down syndrome take longer to learn. The second edition contains new information on how children with Down syndrome learn and a chapter on sensory processing. In chapter 2, "Building on What is There: Learning Step by Step," the author proposes that in order for the child to learn, 4 questions must be considered:
Chapter 11 explains how difficulties with sensory processing can negatively affect learning and behavior in children with Down syndrome. This chapter also provides strategies that can help a child manage various sensory problems in order to facilitate learning.
One notable feature is that this book contains many clear and appropriately placed pictures that enhance the text. It also has a glossary of terms and 2 appendixes. There are visual motor worksheets in appendix 1 and a list of household items that can be used for hand activities in appendix 2. References in the bibliography have expanded from 36 in the first edition to 72 in the second edition. The list of resource companies and support organizations also has been expanded.
Fine Motor Skills for Children with Down Syndrome is an excellent resource for both parents and professionals unfamiliar with Down syndrome. It is a good companion to the book Gross Motor Skills in Children with Down Syndrome, which also is in Woodbine House's "Topics in Down Syndrome" series.Marylou Ingles, PT, is Director of Physical Therapy, Sullivan County BOCES; Liberty, NY. A cruel, dual blow for special patients. Down syndrome and Alzheimer's go hand in hand. As lifespans rise, so do problems by Gayle White. The Atlanta Journal-Constitution. 03/11/07. Reprinted with permission from The Atlanta Journal-Constitution, Copyright © 2007. For more information about reprints by PARS International Corp. visit us online, at www.ajcreprints.com.