Archive for February, 2010
Disturbing Trends
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There have some couple of very disturbing trends in the world of Down Syndrome:
- 92% of women who receive a prenatal diagnosis of Down Syndrome for their unborn child choose to terminate the pregnancy.
- Mothers in the US who received such a diagnosis and chose to continue their pregnancy indicated that their physicians often provided incomplete, inaccurate and often offensive information about DS.
- In a survey conducted in 2004 of 2500 medical school deans, students and residency directors in the US, 81% of medical students report that they “are not getting any clinical training regarding individuals with intellectual disabilities”, and 58% of medical school deans say such training is not a priority.
- In a questionnaire completed by 532 ACOG (American Congress of Obstetricians and Gynecologists) fellows and junior fellows in 2004, 45% rated their training regarding how to deliver a prenatal diagnosis as “barely adequate or nonexistent” and only 28% felt “well qualified” in general prenatal genetic counseling.
I don’t think these are disconnected. I’ve talked to so many parents of children with DS and so many who received a prenatal diagnosis report that the doctors were pretty emphatic about urging them to terminate the pregnancy.
I want to make it clear that I am not judging parents. To receive such a diagnosis is devastating to parents. I would never presume to second guess what is an incredibly difficult family decision. My concern is that parents are often making that decision with inaccurate information.
I also want to acknowledge that there are some excellent doctors that do a great job of educating parents after a prenatal diagnosis.
What concerns me most about this is that this is a perfect storm. Poor training leads to poorly equipped physicians. Poorly equipped physicians give bad information to scared parents. And scared, misinformed parents are terminating their pregnancies. This is a predictable sequence.
But beyond the statistics are people. Thousands of them. Little people that will never have a chance to learn, love and live. It breaks my heart.
Gabby’s birthparents could have chosen to terminate her life. I praise God that they made a decision to let her live and put her up for adoption.
Down Syndrome – What is it? What isn’t it?
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For many people who read my blog, they won’t read any further than the title of this post because they don’t see this topic as relevant to them. It’s like the single person having to sit through one more sermon series on marriage, knowing that there is little value to them personally, other than the ‘when/if it happens to me’ perspective. I want to offer another perspective for you to consider. God has a special place in his heart for the disadvantaged. Scripture shows it over and over, and God calls us to minister to them on God’s behalf. Can I encourage you to take a few minutes and learn something that you might not already know? Who knows how God might use it to bless one of his children.
Down Syndrome is a chromosomal anomaly caused by an error in cell division that results in the presence of an additional third chromosome 21. It occurs in about 1 out of every 800-1,000 births, in all races and economic groups. The incidence goes up significantly with the age of the mother. DS is the most frequent genetic cause of mild to moderate cognitive disabilities and associated medical problems. Most people recognize someone with DS because of the physical features that usually are present, such as a flat facial profile, an upward slant to the eye, a short neck, abnormally shaped ears, and a single, deep transverse crease on the palm of the hand. However, a person with DS may not possess all of these features; some of these features can even be found in the general population. Several other well-known medical conditions, including hearing loss, congenital heart disease, and vision disorders, are more prevalent.
In the past, a diagnosis of DS has been much like delivering a death sentence. In 1929, the average life span of an individual with DS was nine years. By 1970, that had risen to 12. Today, it is common for a person with DS to live to age fifty and beyond! In addition to living longer, people with DS are now living fuller, richer lives than ever before as family members and contributors to their community. Many people with DS form meaningful relationships and eventually marry. Now that people with DS are living longer, the needs of adults with the syndrome are receiving greater attention. With assistance from family and caretakers, many adults with DS have developed the skills required to hold jobs and to live semi-independently.
Some fictional works have portrayed those with cognitive disabilities as being dangerous. They have been portrayed as killers, psychopaths, child molesters, and all sorts of crazy stuff. Let me tell you how angry that makes me. It might make for good scary-movie entertainment, but it fosters the kind of misinformation that casts doubts and keeps a society at arms length from individuals with DS. There is absolutely no statistical support to indicate that such behavior is associated with DS. It’s just nonsense.
I guess the thing I’d like you to know, beyond all the facts and figures, is that a person with DS is far more like you than they are different. They have feelings. If you insult them, they get hurt, discouraged and withdrawn. If you demonstrate caring towards them, they will experience joy, encouragement and a sense of belonging. Sounds a lot like you and me, right?
If you don’t already have the privilege of doing life with a person with DS, I pray someday you may. You might just experience life from a little different perspective.
The Placement of a Single Word is So Important
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Have you ever noticed how the placement of a word in a sentence dramatically changes the meaning? For instance, recently I heard a speaker inviting people to “a large men’s bible study.” Being a large man myself, I wondered if there would be supersized snacks, to help us maintain our physical largess. But no, the speaker had simply misspoken. It was the study that would be large, not the individual participants.
While this is a silly example, there are more serious examples that take place every day. For instance, I’ll often hear people refer to my daughter Gabby as a “special needs child.” This may seem like a really small thing, mere semantics to those who are not in some was associated with such a child. But it is far more important than that. You see, Gabby is first and foremost a child. What defines her, what makes her special, is that she was created by God, in His image, and placed in this world for such a time and place as this. This ridiculously cute 4 year old is just like any other child in most regards – she laughs, cries, has feelings, experiences delight, experiences frustrations, throws tantrums, sings, dances, throws, helps dress herself, entertains us, says the alphabet, recognizes her numbers, and has her mom and dad wrapped around her little finger. Yes, she also has Down Syndrome, and that certainly impacts her. But it doesn’t define her.
You may be thinking, “While that’s true, is this whole distinction really important? Does it really matter whether I say “special needs child” or “Down Syndrome child” rather than “child with special needs” or “Child with Down Syndrome?” Believe it or not, it makes a huge difference to me as a parent, and her as a person. Let me explain. Our job as parents is to help Gabby to learn about and fall in love with God, then to become well adjusted and socialized into the world as a contributing member of society.
Believe it or not, the greatest obstacle she has is not the Down Syndrome. Really. Today, individuals with Down syndrome are active participants in the educational, vocational, social and recreational aspects of our communities. In fact, there are more opportunities than ever before for individuals with Down syndrome to develop their abilities, discover their talents and realize their dreams. For example, more teens and adults with Down syndrome each year are graduating from high school, going to college, finding employment and living independently. The opportunities currently available to Gabby have never been greater.
The greatest obstacle she faces in realizing that potential is the limitations others will place on her, without any malice whatsoever. They will be well-meaning in their desire to shield her from painful failure, but in doing so will box her into a life that falls so short of her ultimate capabilities. I believe in her. I believe in her future. I believe that she will love God, accept Jesus as her Lord and Savior, and even advance His Kingdom. Look into her eyes. Look past the tell-tale eye-lids and into her eyes. She’s in there – a whole person – alive and well. She’s going to change the world.
Yes, she is a special child.
