The reality is that the United States is one of the most advanced in the world when it comes to understanding Down Syndrome and helping kids and their families to maximize each person’s individual potential.  There are amazing organizations here, like GiGi’s Playhouse, the National Down Syndrome Society, and the National Association for Down Syndrome, just to mention a few.  If you have a child with Down Syndrome, this is the place to live.  We have tons of great resources available to us.

Trust me when I tell you that all countries are not like us in this regard.  In many countries around the world, the view of those with DS can only be described as archaic.  Nowhere is this worse than in the Eastern European countries where, at the advice of medical professionals, babies born with DS are immediately placed in orphanages.  The care in a majority of these orphanages is very poor.  Inadequate staffing, medical care, and facilities further exacerbate their developmental delays, making them unattractive to couples seeking to adopt.

In most of these countries, when the children reach 4 or 5, they are transferred into a mental institution.  The care they receive there is simply inhumane.  We would be charged and convicted of a crime if we treated an animal in the same way they are treated.  Tied to their cribs, often wrapped so that they cannot use their hands, receiving a single diaper change per day (if they’re lucky), many don’t survive their first year.  They succumb to the effects of malnutrition, dehydration and hypothermia.  And the lucky ones die early.  The survivors will continue to grow, but are often kept in the same crib for the rest of their lives.

I read this blog post about 6 weeks ago.  That same night I read this one.  I’m glad it was fairly late at night and that I was alone, because I sat on the couch and cried my eyes out.  I don’t know that I’ve ever witnessed such injustice, especially inflicted on those who are completely unable to act on their own behalf to stop it.  Please let me both encourage you and warn you.  I encourage you to read them both.  It tells the story far better than I can.  Look at their faces.  Imagine your child in that crib.  Watch the video.  Please don’t look away.  But I’ll warn you, you will never free yourself of those images.

Finally, let me answer the question of “But what can I do?”  Resse’s Rainbow has started a new program called “Connecting the Rainbow,” to provide information, support and resources for families caring for children with Down syndrome living in countries around the world where, until now, there has been none.  If God wrecks you, and you need to do something, anything, you can find out how on their site.

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.

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.