About Down Syndrome Amongst Us magazine
This publication was born out of a need for the community to learn and understand what Down syndrome is all about and what life with an individual with DS entails.
I am writing this article, not as a professional, but simply as a parent, as the editor/publisher of this magazine, and as a person who has learnt a lot over the years.
The human body is composed of billions of cells. Each cell has 23 pairs of chromosomes, which maps out the genetic makeup of the human being. The most common form of Down syndrome is Trisomy 21, affecting the 21st pair of chromosomes in every single cell of the human body. Trisomy 21 is not hereditary; the medical world calls it "a fluke, an accident, a mistake." We call it "bashert."
Another form of Down syndrome is called a "translocation;" that does have some hereditary components and it is advisable for families affected by Translocation Down syndrome to go for genetic counseling.
I always thank the Ribono Shel Olam that my son was born in 1989 and not in 1969, or earlier. This is a new world for individuals with Down syndrome. The medical care, the education, the social evolvement over the past two decades is remarkable. Down syndrome no longer poses the challenge it did decades ago. Early Intervention Programs address the Down syndrome baby's needs shortly after birth. At an early stage the child's low muscle tone is treated by physical therapy, fine motor skills are enhanced by occupational therapy, and deficits in oral motor development/feeding issues are aided by skilled speech/language/oral motor therapists. A special education teacher complements the team by engaging the child in educational and stimulating activities. If a child has some specific issues that the above-listed team cannot address, additional professionals are consulted and added to the team.
Children with Down syndrome have tremendous potential. It sounds funny to say it, but my son is mentally retarded, yet he is brilliant. I don't understand the dynamics of the human brain, and I have a hard time separating the retardation from the brilliance, but they are both there. The child with Down syndrome can learn and does learn, when taught properly. The intellectual capacity of an individual with Down syndrome far exceeds the general population's expectations. If social skills are properly instilled, the individuals with Down syndrome are social darlings. Their derech eretz, simchas hachayim, and love of their social peers are unique.
Children with Down syndrome impact their families in ways that are difficult to describe, because words cannot do justice to something so spiritual, far-reaching, and just plain "gevaldig!" Were somebody to ring our doorbell and tell me that they have a magic potion in their pocket that can make Down syndrome disappear and do I want to give it to my son?, I would surely say, "No thanks," and close the door.
Our Moishey's qualities because of his Down syndrome make him so unique, so adorable, so lovable, so wonderful, so funny, so endearing to all family and friends – who wants all these special qualities to go away?
Down syndrome is a challenge, but a very manageable one. Today's government programs help parents of children with DS from the moment they are born. A child with DS is less of an expense to the family than a "normal" child. There are school programs, respite programs, summer programs, etc. for the individual with Down syndrome.
For the adult with Down syndrome there are beautiful, functional group homes where the individual learns to live independently, under supervision, with peers of his kind. The new possibility is that adults with Down syndrome can get married, of course, with the supervision of parents or counselors.
Down syndrome used to be considered something that happened only to older couples. Statistics have changed that misconception; more and more young women are giving birth to babies with Down syndrome, oftentimes as first-time mothers. In the frum community, with young adults marrying at young ages, some new parents are not quite 20 years of age when their "special" baby is born.
Attitude is the number one factor in overcoming the initial shock after diagnosis. Grandparents, family and friends play a major role in how the parents will deal with their new challenge. The best advice that one can give to the new parents is no advice. They should be given support, love, understanding, and told that whatever help they need, they will get. It is highly inappropriate to attempt to convey advice that would impact the family for life.The new parents should be allowed to mourn and grieve and they should be offered only support and encouragement.
Life with a child with Down syndrome is a "zchiyuh;" it is a treat. It is a gift that one needs to have siyata dishmaya to be able to see it.