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

Why International Adoption . . .

Someone posted this on a DS group I'm on and she gave me permission to post here . . .

Exposing Europe's guilty secret: the incarcerated children of Bulgaria

Views and Records
From The Times

By Rosa Monckton


It is the smell that assaults you - filthy nappies, unwashed babies, rotting
flesh. Then you are hit by the silence, an eerie, unnatural silence, the
silence of babies who have given up hope of ever being consoled, cuddled or
comforted. It is the dreadful quiet of starving, neglected, unloved children
waiting to die.

I was in an institution for children aged three and younger in Bulgaria, and
I found myself crouching beside a cot so that the duty "nurse", who was
three rooms away but who could survey all the rooms through the viewing glass
placed in each dividing wall, was unable to see me. All I could see at this
level were bars stretching all the way to the viewing station, bars imprisoning
these children, whose only crime is to have been born. What sort of a Europe
is it that consigns innocent babies and children to a life like this - a life
bereft of all hope?

The poor child whose cot I was hiding next to had hydrocephalus. His swollen
head was turned to one side, and I could see his brain oozing out of his
skull. The girl in the adjacent cot was so pitifully thin that she looked
flattened, like a cardboard cut-out. The next one along had his legs tied together,
with an old pillow case pulled over them - I felt a huge growth on one of
his spindle-like legs.

The children in this particular wing have no human contact. They are fed
lying on their backs, and have their nappies changed only when there happens to
be a supply of new ones. Not one single word is uttered to them, so none of
them is able to talk. This is how they live, and this is how they die.

Over the past few months I have visited eight institutions in Bulgaria, and
have been staggered by the total lack of humanity. The baby world does not
exist for these children.

Children in Western Europe are institutionalised because of abuse and
neglect, whereas in other parts of Europe, particularly the old communist
countries, it is because of abandonment and disability. In Eastern Europe there is
still a widely held belief that disabled children are best dealt with by being
removed from their families and separated from society.

So the flow of children into the institutional system continues, with many
parents being forced by the State to hand over their children at the moment of
birth if a disability has been diagnosed. Bulgaria has the second-highest
rate of placement of children in institutions in Europe (Russia is top of the
list).

In another institution I was taken around by a blonde Cruella de Vil:
stiletto heels, heavily made-up, clutching a clipboard as we marched along a
corridor. Stopping at each window, she consulted her list, took the pen from behind her ear and pointed: "This one cerebral palsy, this one very handicapped,
this one Down's Syndrome, this one don't know...."

I asked to go into one of the rooms and picked up the nearest child, a
living skeleton. And what was wrong with him? He was blind. Just blind. But now he was starving to death, rocking and banging his head against the side of his
cot. On another visit, I asked the director, a paediatrician, about a child
with Down's Syndrome. Why was she here? "She has Down's Syndrome, she will
die." I told her that this was not true, that these children could live
fulfilled lives. Angered, she asked: "Are you a doctor?" No, I replied, but I was the mother of a child with Down's Syndrome. "But you are not a doctor, so you
don't understand... these children have no use. They should never have been
born."

I am working with a charity called The Bulgarian Abandoned Children's Trust
and our aim is to re-educate government, doctors, midwives and parents to
bring an end to institutionalisation and build small-group homes for the
children to move into. Because, unlike Romania, which has made huge progress in the reform of its institutions and has shown that it is ready and willing to
change, Bulgaria remains in denial. The Government sees little need for change.
Nor has it come under the sort of pressure that Romania faced when it was in
discussions to join the European Union and reform of its children's
institutions was a condition of entry.

One of the problems with the old Eastern bloc countries is that where the
State was the guarantor of all moral values, it dehumanised society. The idea
of charity, of social responsibility, of caring for others, was eradicated.
There seems to be no recognition on the part of the carers that they share
something with these children - and that what they share is a common humanity. In homes for the dying in India, you find volunteers serving food, cleaning, or
simply talking to patients 24 hours a day. There is a purpose and a feeling
of life, and hope, in even the most impoverished homes.

The sterility and eerie silence of the Eastern European children's homes is
all the more shocking by contrast. These children are Europe's guilty secret,
hidden away from the world. We need to talk about them, to bring the whole
issue out into the open. We need a co-ordinated European strategy, operating
at the highest levels of government. A tightly run ten-year plan could lead to
many of these shameful places closing their doors. This will need to include
social reform, services in the community, fostering being made an
occupation, easier adoption laws, the building of small-group homes and, most
importantly, more support at birth. More than 96 per cent of institutionalised
children across Europe have at least one living parent. Help is needed to persuade families that they can cope.

It is too late to help many of the children incarcerated in institutions -
their lives are already irreparably damaged. But we can stop the flow of
children into these places. We need early intervention programmes in hospitals and maternity wards; we need to make people care. If you are one of those people who hunts through the supermarket to avoid buying a battery-raised chicken, think for a moment about these children, who are treated no better