An Overdue Conversation About Our Obligations to Special Needs Children


When Sarah
Palin burst onto the national political stage, the public quickly learned
that she was the mother of Trig, a baby with Down syndrome now almost
six months old. Many families with special needs children were thrilled
when Palin pledged early on in the campaign to be an advocate for families
like theirs. Many were excited to see an extraordinarily high
profile voice on a long-neglected issue was emerging. Trig Palin shines
a light on our failure as a nation to openly discuss Down syndrome and
children with cognitive disabilities, and our need to better understand
the intensely personal and private decision women make to continue or
terminate a pregnancy for any reason. 

Down
syndrome, or trisomy 21, is a chromosomal disorder caused by the presence
of all or part of an extra twenty-first
chromosome
. The condition is characterized by
a combination of major and minor differences in structure. Down syndrome
is associated with some impairment of cognitive ability and physical
growth, as well as facial appearance. Individuals with Down syndrome
tend to have a lower than average cognitive ability, ranging from mild
to moderate learning disabilities. Health concerns include a higher
risk for congenital heart defects (as high as 40% in some studies),
gastroesophageal reflux disease, recurrent ear infections, obstructive
sleep apnea, thyroid dysfunctions, and an average life expectancy of
49. As adults, a high percentage hold jobs, but many have difficulty
living independently.

Until 2007, it was typical
only for pregnant women 35 years of age and older to be tested routinely
to discover whether or not their fetus had the extra chromosome that
causes Down syndrome. As a result, younger women and couples did not
receive the diagnosis until the birth of their babies. However, a new recommendation
from the American College of Obstetricians and Gynecologists now encourages
doctors to begin to offer a new, safer
screening procedure to all pregnant women, regardless of their age.

Increased prenatal genetic
testing means that more women will be better informed and able to learn
in advance the health status of their pregnancies. This is important
information for women so that they are able to make the best choice
possible regarding their pregnancies, whether it is readying themselves
for special needs children or deciding to have an abortion.

A
1999 study
found
that 92% of women who are given a diagnosis of Down syndrome chose to
have an abortion. But a
growing number of parents

of children with Down syndrome believe that more couples might choose
to continue their pregnancies if they had access to better information
and support and more fully appreciated what it really means to
raise a child with the condition. For them, it is imperative to share
their real-life experiences when a decision is too often dominated by
overwhelming medical statistics and doctors who frequently describe
only the negativities and difficulties of life with a disabled child.

"What we have found historically
is that physicians are giving biased information when they’re presenting
a prenatal diagnosis," says executive director of the Down Syndrome
Guild of Greater Kansas City Amy Allison.  According to a 2005
survey of nearly 1,300 parents of children with Down syndrome, a majority
reported a high level of dissatisfaction and said that the doctors did
not tell them about the positive potential of people with Down syndrome.
In fact, most doctors have minimal training on how to relay a prenatal
diagnosis of Down syndrome. So advocacy groups have embarked on education and outreach
campaigns
to educate
physicians, medical students, and expectant parents about the genetic
disorder. "Families [receiving a prenatal diagnosis of Down syndrome]
can walk out the doors [of the doctor's office] feeling isolated and
alone, or they can walk out feeling like they’ve got a support system,"
Allison adds. 

In Massachusetts, volunteers in a
"first call" network

link "veteran" parents of Down syndrome children to new ones, and
are also now offering information and support to couples still deciding
whether or not to continue a pregnancy. In Detroit, Michigan, a mother
of a pre-teen daughter with Down syndrome has coordinated presentations
with genetic counselors and obstetricians at local hospitals in which
she and her daughter openly talked about themselves. "We want people
who make this decision to know our kids. We want them to talk to us,"
said the mother. Meeting with local doctors, rewriting outdated literature,
and urging health care workers to give out information about support
groups is critical, say parents.       

Parent advocates say that the
joy and richness of their children’s lives is poorly understood. They
have seen that early medical intervention, expanded therapeutic approaches,
and expertise in infant heart surgery now stave off many health problems
and increase cognitive potential. Legally mandated inclusion in public
schools has mainstreamed children with Down syndrome, created opportunities
for friendship and increased socialization, and fostered broader
social acceptance and awareness

of the condition.

At this time, Down syndrome
is the most commonly occurring genetic condition. One in 773 live births
is a child with Down syndrome, , which amounts to approximately 5,500
children born with the condition annually in the United States. Due
to the number of abortions that occur due to this diagnosis, the population
of Down syndrome has dwindled to approximately 350,000. With the previously
mentioned ACOG recommendations, parents
fear an even lonelier world for their children, with even fewer people
like them
. Fewer
numbers of children and adults with Down syndrome could eventually mean
less institutional support, reduced funds for medical research, and
an overall lack of acceptance for disabled individuals. Looking out
for their children’s future, parent advocates often identify as pro-choice
and do not seek to force anyone to take on the task of parenting a disabled
child. What they do want is destigmatize Down syndrome, humanize their
children, and secure better resources for them.  

All of which explains why the
emergence of Sarah Palin and her baby Trig has brought hope and validation
to so many special needs families. But hope is only the beginning and
it is not enough. Children and adults with special needs need societal
understanding, respect, and acceptance, expanded funding for improved
education, training, and care, improved and specialized services and
programs that are portable from state to state,  and an end to
waiting lists for services. More than anything, society needs to
see them as valued individuals in our society who should not be feared,
but loved and accepted.

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  • invalid-0

    … I’m torn. In a way it would be like saying, “if we are able to transplant limbs, there would be a smaller population of amputees in the world, and they would lose acceptance.” The other part of me wants to have people with developmental disabilities more public, more accepted, having every chance and opportunity available.

    This article gives one a lot to think about. I had my daughter with Down syndrome at age 23. I had a healthy child already, I had no reason for AFP or triple-screen testing (which had a lot more false positives 13 years ago). Looking back, if I knew as much at the time as I know now, when they gave me a second ultrasound because of “nuchal fold thickening” I would have demanded an amniocentesis. I gave birth to a primarily healthy, 8 pound 2 ounce baby girl- who happened to have trisomy 21.

    Had I known early enough in my pregnancy I would have chosen not to continue to term. While the world would indeed be a little less bright without the presence of my wonderful daughter, I would have chosen then not to bring a child into the world that faces daily challenges.

    I suppose this is why Ms. Palin and her pro-life stance while hauling baby Trig about annoy me at a visceral level. At this point she hasn’t a clue what the real challenges are going to be. A baby is a baby, and unless there are heart issues or other life-threatening problems, an infant with DS is just that, an infant. It’s all well and good to bandy about how you chose life, and want the best for your special-needs son when you have nannies, financial support, and access to the best of everything. It ignores the very real needs of families struggling to care for their special needs children and adults, and makes light of the whole situation.

  • invalid-0

    It really bothers me with Palin bringing around Trig and her other children. It’s not for Trig’s best interest or the other children…it is for the campaign’s best interest. And although I don’t have any children, I worked many hours as a respite worker for 20 years, and have been in the trenches with families. Palin doesn’t struggle, other people do everything for her. She doesn’t know what families go through. I don’t think she truely will work for special needs children, because she doesn’t know what people’s realities are. I think it is just a way for her to get elected, and to show she’s “pro-family”…what a crock..

  • marysia

    Marcy,

    I am glad that some prochoicers are paying attention to the needs of disabled children who might not otherwise have been born, as well as their families.

     

    But not everyone who supports the rights of disabled persons, who are disabled themselves, and/or have disabled family members are prochoice on abortion.  Some of us believe that human rights and disability rights start *before* birth. 

     I am all three of the above, and I am not uncommon in believing that abortion of disabled fetuses contributes to–is an integral part of–a society that does not welcome us before or after birth.   While I am leftist politically, I get frustrated at the difficulties of discussing this perspective with other progressives.  In the end, abortion rights trump the rights of disabled unborn children, and so no one wants to hear why many disability-conscious people feel as I do on this subject.