Reaching for life’s milestones

The authorities have come to realize that it’s time to adapt assistance to Down Syndrome patients and their needs and not try to adapt patients to the preferences of the establishment.

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April 1, 2018 01:24
Down syndrome children

Down syndrome children 311. (photo credit: Reuters)

 
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Chen, Tal, Noam and Or were the stars of the day, with their mothers the impressive supporting actresses. The four were all born with Down Syndrome – the genetic condition caused when a fetus has three copies of chromosome 21 instead of two in each of its cells that affects seven million people around the world.

Or, a beautiful girl with long tresses who is due to enter first grade in the fall, is the first Down syndrome model in Israel. Noam proudly volunteered to help children in a Jerusalem school and now wears a sergeant’s uniform in the Israel Defense Forces, working competently in a storeroom. “I volunteered for military service because I wanted to be like everybody and contribute to my country,” he said. “I went to visit my sisters at their military bases. I learned from other soldiers what to do.”

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Chen is a religiously observant young woman who lives in an apartment with others like her and takes Jerusalem buses on her own. For her 21st birthday party, she invited her neighbors and friends to her family home for a party.

Tal, a 23-year-old Jerusalemite, passed a matriculation exam in agriculture and now takes care of elderly people who live alone.

They and their mothers appeared late last month on the stage of Shacht Auditorium of Hadassah Medical Center on Jerusalem’s Mount Scopus, telling an audience of 200 about their achievements, problems and dreams. The occasion was the World Down Syndrome Day annual conference organized by Shalva (the Israel Association for the Care and Inclusion of Persons with Disabilities), the Hadassah Medical Organization, the Shalem Foundation, the Ministry of Social Affairs and Social Services and other organizations.

Presiding over the event were Kalman Samuels and his wife Malki. In 1977, their second son, Yossi, at the time 11 months old, was injured by a faulty DPT vaccination and rendered blind, deaf and acutely hyperactive. After seven years with no communication, Yossi’s special education teacher, Shoshana Weinstock achieved a breakthrough by relaying sign language into the palm of his hand, teaching Yossi his first word, shulhan (table in Hebrew). In gratitude, and seeing a real need for an organization for people with disabilities, the Samuels family established Shalva.

The Jerusalem center at the foot of the Bayit Vegan neighborhood has a 400-seat auditorium, a large gymnasium, accommodations for 100 “respite” sleepovers per night (children with disabilities, including Down syndrome children), a dental clinic, hydrotherapy and semi-Olympic-size pools, a Snoezelen sensory-stimulation room, a family counseling unit, a café where disadvantaged youth work and much more.



THE EXTRA chromosome copy (trisomy 21) results from the normal two copies failing to separate during the formation of the egg, resulting in an ovum with two copies of the chromosome. When this egg is fertilized, the resulting baby ends up with three copies of chromosome 21 in each of its cells. The cause of this process remains unknown. It occurs in all population groups, every race, nationality, socioeconomic group and religion.

The chance of having a baby with Down syndrome increases with the mother’s age; however, about half of babies born with Down syndrome are born to mothers under 35 years old simply because more young women have babies. Down syndrome births are more common in the ultra-Orthodox (haredi) and Muslim populations because parents tend to refuse to undergo medical tests during early pregnancy and have an abortion when trisomy 21 is detected.

Common physical signs of Down syndrome include a small head, ears and mouth and a short neck, with excess skin at the back; poor muscle tone; a flattened facial profile and nose; upward-slanting eyes, wide, short hands and short fingers; a single, deep crease across the palm of the hand; and a deep groove between the first and second toes.

Physical development in Down children is often slower than that of healthy children; babies may be slow in turning over, sitting, standing and walking. They can usually meet these physical milestones, but it takes them longer, and they may exhibit impulsive behavior, delayed language and speech development, a short attention span and slow learning.

But although a generation ago, many parents who saw a Down child decided to leave them in the hospital to be cared for by nuns, voluntary organizations or adoptive parents, the children are lovable and capable. The mothers on stage – Mira, Merav, Lital and Moriah – said that raising their children was a privilege and a joy, albeit not without difficult decisions and problems. They can do many things and have productive lives.

In fact, the five-hour conference, with many moving moments, was moderated by Raphael Cohen, who has Down syndrome, writes poetry and works in Shalva’s café. It was co-moderated by Liat Rahat, who is healthy and also works in Shalva.

Down Syndrome patients are human beings who have the right to enjoy life and make decisions. For too many decades, social welfare institutions required Down children and their parents to adapt themselves to the system.

Chen, who lives in an Alei Siah institution with peers, held a microphone and shyly told the audience that she likes to sing, produce art and play cards. Tal also lives with friends and attends Hapoel Jerusalem basketball games.

Their mothers described the difficult decisions of whether to apply for kindergartens, elementary schools and high schools in which they were integrated with healthy children or separately with other Down children.

A greeting from Dr. Tamar Elram, the new director-general of the Mount Scopus hospital, was followed by warm words from Gideon Shalom of the Social Services Ministry’s disabilities’ administration

“I see how important the right to choose is,” said Samuels.

DR. ARIEL Tenenbaum, a pediatrician who heads the Down Syndrome clinic at the hospital, noted that about the same number of children with trisomy 21 are born each year in the world – about one per 1,100 babies – but there are many more of them now because more of them survive than previously.

“There might be a premature baby with Down Syndrome who has a heart problem, but if he dies, it is not due to the syndrome. Life expectancy is 60 or 65 or even more,” said Tenenbaum.

He showed a slide of a new report from Ynet that claimed there were “no Down babies in Iceland.” But this, he said, was fake news and a “low level of journalism.” Every year, hospitals in Iceland, which has a much smaller population than Israel (“something like the population of western Jerusalem”) deliver one or two Down babies.

There was also a study in the PLoS journal that claimed numerous Down children suffer from autism as well, but it was “ridiculous,” he told the audience.

Tenenbaum continued that a relatively new blood test (not covered by the government or basic health fund insurance) to determine if a woman’s fetus has the syndrome is not completely accurate. “There have been women who paid for this test and were told their fetus is healthy, but then they gave birth to a Down baby.” Thus he recommended that women undergo other tests as well.

The pediatrician objected to the fact that some parents refuse to allow their Down infants to receive life-saving treatments even when they can be helped.

“When Ronald Reagan was the US president, there was a baby there with an obstructed esophagus whose parents would not allow very simple surgery. The baby died. Now there is a US law that prevents parental or medical discrimination against such children.”

He advised parents not to purchase expensive, imported vitamins from abroad on the basis of false claims that they will help their children.

“We have excellent fruits and vegetables here; such supplements are completely unnecessary.”

RINAT LEVI, a clinical dietitian at Tenenbaum’s clinic, said that all children – with trisomy 21 and without – should get the same nutrition.

“The parent is responsible for what the child eats, when and where. They should buy a variety of foods to choose from. The child is responsible for whether they eat and how much.”

As Down children tend to be overweight, she recommended regular meals around the dining table and not in front of the TV, so the child “doesn’t eat from the refrigerator or consume a lot of junk food. Don’t give up easily if they refuse. There are often struggles between parents and children over what they eat. Sometimes parents limit their food intake, try to prepare more vegetables of different colors and less rice. Don’t tell him you can’t leave the table until you finish everything on the plate. Make a growth chart to ensure that the child is not losing or gaining too much weight.”

As most of the country’s potable water is desalinated, Levi recommended giving magnesium to children and buying iodized salt – in the inexplicable absence of a Health Ministry directive for all salt companies to add iodine for good health.

“Children who got more iodine show improved cognitive abilities,” she explained.

As the Down child gets older, he or she can develop low bone-density and osteoporosis, so parents are advised to give them dairy products, tehina, pulses, dark green vegetables, eggs and fish with edible, soft bones. Regular exercise is also good for them.

Shani Strick and Michal Avrahami, two Shalva social workers, said that parents whose child is born with the syndrome initially react with shock.

“They have no reason to apologize.” Shalva organized support groups of mothers, fathers, grandmothers and siblings of Down babies, each of whom reacted differently and had a variety of feelings. A group for grandfathers will open soon. Samuels and Tenenbaum have personally briefed fathers, some of whom were initially reluctant to attend and had to be “pushed” by their wives, but they didn’t regret participating, the social workers said.

Healthy brothers and sisters are often ashamed to tell their friends about their affected sibling.

“We asked them to write a letter to their Down sibling to express their feelings and an imaginary letter of what their sibling might communicate to them. It helped them escape the feeling of loneliness and opened a new channel of communications between them.”

The grandmothers felt a need to share, said the social workers.

“Many of them cried. When parents are told of the birth, there are procedures for preparing them. But nobody thinks of how to break it to grandparents, who like to boast about their grandchildren. They must be taught to be proud of them.”

VIVIAN AZRAN, a senior Social Services Ministry official, said that of the 1.14 Israeli children under the age of three, 507,000 have some kind of disability. In 2012, the UN ratified a special inclusion treaty endorsing the right of the disabled to have significant lives and to enjoy them to the fullest.

“We have to report to the UN every year to show what we have done to implement the provision,” she said. “We still have a long way to go.”

Years ago, a unit in the ministry was named for “the retarded person,” but officials changed the name to disabilities when they realized how insulting it was.

“We now put the person in the center of the focus – what he can do and what he needs – and are trying to get away from being patronizing. It will still take years to change the perception and be more holistic. The families are important partners in the process. Today, we speak of integration of Down’s syndrome patients and their families,” Azran concluded.

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