Monday, May 3, 2010

A Mission of Hope

I thought I'd share the article I wrote for our local DSA's monthly newsletter. I can write an article for their newsletter whenever I want, so if anyone has any other ideas for topics, let me know :).


A Mission of Hope, Truth & Acceptance

My little brother, Osiyyah came into our lives 5 years ago. The day he & his twin sister were born, our lives have been forever changed because of him and the extra chromosome he sports, but it has all been for the better. It has been a huge blessing that God put him into our life.

When he was born, the information and “help” we were offered was so dark & gloomy. It was all this stuff he “wouldn’t” do or how hard our life would be with him. This was in 2005 and as we quickly found out, there is so much that can be done to help children with Down syndrome achieve their highest potential. You would think that we would have been offered all the powerful, helpful resources that are available here in the United States and the potential children with Down syndrome have. Instead of such a dark, “I’m sorry you have a baby with Down syndrome . . . and these are all the things he won’t be able to do.”

Because of this, my mother and I purposed to write a book about Down syndrome at some point to be able to give to families so that they would have access to all the helpful information a lot sooner than we ever did. And so, in the fall of 2008, our book was finished. And appropriately titled, Down Syndrome: What You CAN Do. We edited the book and had resources from all kinds of doctors, therapists, professionals and families put into the book. The introduction was written by Dr. Lawrence Leichtman. The foreword was written by Karen Gaffney. Many other well known therapists, such as Pat Winders and Sara Rosenfeld-Johnson (Talk Tools) also contributed. The book ended up being 589 pages long and full of resources that we wish we would’ve had access to in those first few months after Osiyyah’s birth.

In the United States, families who have a child born with Down syndrome or those who decide to keep their child with Down syndrome because of a prenatal diagnosis, often times hear a very sad, unhopeful picture from their doctor, social worker or whoever the “professional” might be. I have read the stories of those who didn’t get a sad picture when they were given the diagnosis. But, that is not the majority. This same thing happens in European countries, but it’s far worse.

In European countries, nobody knows the multitude of options that are present in today’s society. And so because the government supposedly “knows better”, the majority of these parents leave their infants to live in a orphanages and mental institutions.  Most children are in an orphanage until 4-5 years old and then transferred to a mental institution, where the death rate is very high.

These babies & children are tied to cribs or strapped down for hours or even days on end. They are starved of love, adequate care & proper nutrition. Not routinely given baths and treated with hardly any compassion. All because of a special need or extra chromosome they might have. How sad & sickening is that?!

As an example, one family who recently adopted their daughter with Cerebral Palsy from the Ukraine wrote on their blog (,

"So we asked Nina today about her life at the orphanage, not sure if she understands us, not sure if she knows how to communicate with us.

‘Nina?’ I asked, ‘Were you tied down on your crib? Did you have to lie down and they would tie you?’ She looked at me, a sad expression, her little lip came out, and the tears started to come, she said softly, ‘yes.’ And she cried some more. I held her so close to me, wishing I could take that away from her, wishing that somehow she had not had to go through that. Andy asked her why they did that. ‘Nina naughty, Nina naughty.’ She responded.”

Because of this and the need for proper education and information in these countries, a new off-shoot of Reece’s Rainbow Adoption Ministry called Connecting The Rainbow (CTR) was formed. CTR is a volunteer group that gathers therapy tool donations, book resources and any other helpful material to deliver to the few families who have decided to keep & raise their children with Down syndrome in these European countries.

CTR just took their first trip the beginning of April and brought the 250+lbs of donated items to families in Bulgaria.  The small support group in Bulgaria includes 36 children with DS ranging in age from 6 months to 13 years old. These families are going against the grain in their country so much and can use all the help and resources they are given.

We donated a hard copy of one of our books to CTR on Shelley’s first trip to Bulgaria in December. Shelley just completed the adoption of her family’s 3rd child with Down syndrome from Bulgaria. A 7 year old boy from a mental institution. On Shelley’s last trip to Bulgaria in April that included her bringing her son home and the CTR mission trip, we sent 21 CD’s with copies of our book on it to the families in the support group.

Shelley & Leah (CTR) were also able meet with some officials in Serbia in the hopes that a flow of helpful information can be brought there as well. Hopefully the “trend” of orphanages & mental institutions can be stopped. CTR is also working to try to establish connections in Ukraine & Russia. It is all a work in progress and will take a long time. But every family who decides to raise their child with Down syndrome is one less child in the statistic of 147 million orphans worldwide and one less child who will see the abuse & neglect of an orphanage or institution.

Down Syndrome: What You CAN Do can be purchased from A hard copy of the book is $22.73 plus shipping and an e-Book is $5. The book is priced so low because we want it affordable for anyone to get. We did not write a book to make money, we wrote a book to help families.

To see what you can do with Connecting The Rainbow check out their website at To find out more about internationally adopting children with Down syndrome you can visit Reece’s Rainbow at




Adelaide Dupont said...

Thank you so much, Q.

I remember 4 years ago (early 2006) reading about Czech children in institutions.

Polish children (I do not know about special needs) are on the other hand raised within families.

So it varies a great deal in Central and Eastern Europe, as well as the nations of the former Soviet Union.

Thank you for writing such a helpful and practical book which challenges the medical model signiifcantly.

Would just like to show you this:

Sociological Images: the Life Expectancy of People with Trisomy 21 by Race.

It covers white, black and other races in America.

Thank you, especially, for your words about Nina. I wonder what "assume competence" means in various languages now.

(Two great people from history: Luria and Vygotsky).

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