CTR in The Ukraine

Connecting the Rainbow is on their first trip to the Ukraine to establish connections with families, doctors, therapists, and orphanages in various regions of Ukraine.

It was just a short trip (a few days), but you can see the details of their trip at the Connecting The Rainbow blog.

Shelley (adopted kids through RR from Ukraine, Serbia & Bulgaria) & Meredith (adopted 2 through RR from Ukraine in 2008 & is in the process of adopting another one from EE) went on this trip together. One of the main reasons they went was because of the DownsEd conference that was held in Kiev, Ukraine.

But, since they were on this trip, they were able to visit several orphanages (including the one Meredith's 2 kiddos came from), a therapy center that recently opened, a maternity hospital and more.

Hopefully this will help open the gateway for more connections in Ukraine and bring hope to families there, so that someday orphanages and institutions will be a thing of the past.

Connecting the Rainbow Heading to Ukraine

I've posted about Connecting the Rainbow a few times before. CTR is an off-shoot of Reece's Rainbow that is designed to educate families and professionals in Eastern European countries. Education is so important in EE countries, because families are not told the truth about raising a child with Down syndrome. They are told to put them into an institution or an orphanage. There are only a few families in these countries that actually keep their children with Down syndrome.

Actually, there was one family a few months ago, who, by the encouragement of RR, brought their child home out of the orphanage to live with them.

As I've posted about before, CTR has made a couple trips to Bulgaria to deliver resources and therapy items to families there. They will be going back to Bulgaria in March 2011 for World Down Syndrome Day for a 2-day conference.

Our book has made it to Bulgaria with CTR and to the families there. It also recently went with a family who was adopting from an orphanage in Ukraine to give to the director of the orphanage . . . he actually requested books on Down syndrome.

CTR has been working on ways to give more information, resources and therapy items to families in the Ukraine and Serbia. And just to educate the public there. Well, they have been given an amazing opportunity to attend the DownsEd International Down syndrome conference in Kiev, Ukraine!

Here's a bit of info that Shelley recently posted about the upcoming trip to Kiev:

In the midst of the beginning preparations for the CTR trip to Bulgaria next March, we were given an exciting opportunity to make face-to-face contact and really "open" our program in Ukraine!

Though the timing was a big unexpected (and fast!), the opportunity was too great to pass up.  I, along with Reece's Rainbow's Ukraine coordinator, Meredith Cornish, will be attending the Down Syndrome conference in Kiev, Ukraine!!! We will have the opportunity to meet with birth families in Kiev, speak with leaders of the Down syndrome group to assess how we can best support the families and visit the new Down Syndrome Early Development Center. We are extremely blessed to have this opportunity for face-to-face meetings with the parents that are right now "in the trenches" in Ukraine, working to change the minds and hearts of their society about the value and potential of people with Down syndrome. Just like in Bulgaria, we know that meeting these families "where they are" is THE most effective way to truly understand their needs and to plan for the most effective way to partner with them and support them and their children.

In addition to the exciting things happening in Kiev, we've been given a 2nd opportunity to impact another area of Ukraine. Connecting The Rainbow will be partnering with another organization to assist in supporting a special needs center in the Donetsk region of Ukraine. The center is in the city of Artemovsk and will serve ALL children with special needs and their families in the community and surrounding areas. It will be a place for families to come for support, information, resources, etc. It will be a place for the children to receive therapy, to play with developmentally appropriate toys and to interact with other children. We are very excited about the opportunity to assist with this project as it will serve so many children with a variety of special needs. There are already over 190 families signed up to receive support from this facility!

So, there are a lot of exciting things happening in Ukraine! Connecting The Rainbow has been given incredible opportunities to partner with families in Ukraine and to assist them in providing for the needs of their children. We're currently in the process of compiling a list of items that will be needed for the special needs center in Artemovsk and also items that the families in Kiev want/need as well. We're looking forward to the opportunity to be able to visit both facilities, gather a lot of information and take lots of pictures to share with all of you!

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 :).

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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 (http://stumbofamilyadoption.blogspot.com),

"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 3^rd 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 http://stores.lulu.com/gotdownsyndrome. 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 www.connectingtherainbow.com. To find out more about internationally adopting children with Down syndrome you can visit Reece’s Rainbow at www.reecesrainbow.com.

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Connecting the Rainbow & Our Book

As some of you know, my mother & I published a book about Down syndrome a little over a year ago.

The book, Down Syndrome: What You CAN Do is 589 pages long. My mom & I basically edited it and compiled all the info. Lots of doctors, therapists, parents and families wrote information, articles & stories for the book. Which makes it an excellent resource. Karen Gaffney wrote the foreword. Dr. Lawrence G. Leichtman wrote the introduction. Patricia Winders gave us a physical therapy article to include. Talk Tools & Sara Rosenfeld-Johnson gave us permission to use several articles from them. Just to name a few . . . but lots of other doctors and professionals gave us their time, information & articles.

It took us awhile to compile it together, but it has been well worth it. The book is only $22.73 for a hard copy & $5 for an e-Book. Yeah, I know that is really cheap in price. But, we didn't write this book to make a fortune. We wrote this book so that it will help other families and give families hope to realize there is so much that can be done to help children with Down syndrome.

You can see a 15 page preview of the book and it can be ordered from here.

I have a question for ya'll: Would you guys like to see a hardcover version of our book? Obviously it would be more expensive, but I'm sure there are some who prefer hard cover books over soft covers.

We recently sent International Nutrition several hundred flyers about the book and they also ordered a decent amount to start to provide it on their website. Hopefully they'll have good success with it.

A little side note . . . If anyone would like flyers for their local Down syndrome associations, new parent packets or just to have to give out to whomever, let me know and I'd be glad to mail you some. Our local DS association put a flyer in each of their new parent packets.

Now, all that to bring me to this, the main reason for the post . . . Connecting The Rainbow. I've mentioned CTR before, but thought it would be good to mention it again. We sent a hard copy of our book with Shelley on her first trip to Bulgaria to give to the families there who have chosen to keep their children.

Since that trip, Shelley & CTR has been gathering resources & tools to take to the families in Bulgaria when Shelley returns to bring her son home from Eastern Europe. They have received a great response and gotten a lot of good therapy tools, other tools & resources to take to the families in Bulgaria.

Because of that, I have a stack of 21 CD's sitting here by my computer that have a PDF of our book burned onto them. I'll be mailing them out this week, Lord willing, to Shelley and she'll take them with her on her trip to Bulgaria in April.

Qadoshyah