Monday, July 6 at 9am I will pick two winners for the two copies Pleasant St. Press so graciously have provided.

I love the book!!! It is so authentic and so real and illustrates so beautifully the sentiments of siblings of children with Down syndrome. Although the focus is positive, there is attention given to the negative feelings - which will be a great way to stimulate your children to share honestly about their own.

From a Christian point of view - that every life has value in God's eyes:

She peers long and hard at crickets and June bugs and dragonflies, She watches ladybugs warm themselves on our red door.

Then she counts their dots: "One lady dot, two lady dot, three lady dot . . . "

I think God is glad someone notices these things.

Authentic, real and beautifully illustrated. Love it!

You can read more or buy it at Amazon:

More resources:

Children's books on Down syndrome
Down syndrome books for parents
Children's books on disabilities

Brand New Man: Reflections on Fatherhood and Down syndrome

Many of you who have children with Down syndrome may be familiar with the book Gifts, edited by Mrs. Kathryn Soper.

If you are like me, the stories from all of the mothers out there were inspirational, and more than one has brought me to tears. Knowing that there are others who have walked down the same path before me has been a blessing, especially in the beginning.

One day, I sent Mrs. Soper an email asking whether there were plans for a book that focused more on a father's perspective. Her response was relatively simple: "No.....I hope you'll consider creating the book you'd like to read." After much thought, I've decided to do just that. I am looking for vignettes from fathers, brothers, uncles, grandfathers and self-advocates for "my" book.

The working title is "Brand New Man: Reflections on Fatherhood and Down syndrome". Write about what moves you, what inspires you, what you wished you'd known. I want this book to bring a sense of peace to new fathers who are faced with the unknown, who are questioning God and his infinite wisdom, and I want to reassure them that Down syndrome is just one more way we are all the same and we are all different. People are people first, and my hope is that when this is all said and done, more people embrace this philosophy.

You are welcome to pass this on to anyone who may be interested. If you have a story to tell, please feel free to contact me. Even if you don't, send me an email letting me know what's on your mind. I will endeavor to answer every email promptly, but remember, I am a father and husband first, so it may take a day or two.

Thanks. And I look forward to hearing what you have to say.

Mike Burgess
burge02c(at)duke(dot)edu

The picture is my husband Tripp and our four sons with Down syndrome - Jonny by birth, Jesse and Daniel and Justin by adoption. Forwarding this to him - and our four older sons - now.

By Stephen Smith, Globe Staff | June 1, 2009

It is a scientific riddle that has stumped, and deeply intrigued, specialists in cancer and genetics for decades: Why do people with Down syndrome so rarely develop life-threatening tumors?

The famed Boston scientist Judah Folkman puzzled over the question for decades, since encountering it on an exam as a young medical student.

Now, 17 months after he died, researchers in his lab at Children's Hospital Boston have found an answer, and their discovery could provide a beacon to scientists developing treatments and preventive medications designed to be broadly effective against cancer, wherever it resides in the body.

The scientists discovered that the extra chromosome carried by people with Down syndrome - which causes the condition's distinctive features - harbors a gene responsible for starving tumors of the blood they need to survive and flourish.

That had been Folkman's suspicion all along.

"Most people don't appreciate the fact that these individuals with Downs potentially hold a secret that might lead to quite substantial and revolutionary new treatments for cancer," said Dr. David Sweetser, who treats patients and researches cancer at MassGeneral Hospital for Children but was not involved in the Downs project. "The obvious hope is that this is going to give us information to help develop a tool that we could use to treat a whole variety of solid tumors."

Read entire article here.

Use the share button below to pass this wonderful news!

Yet they made way for Jonny - Down syndrome and all.

No matter their worries, they behaved very professionally and treated Jonny with the respect we should all accord each other. His kindergarten teacher was a woman named Miss Bessie, who'd been teaching kindergarten there for 30 years and was now teaching children of her former students.

She'd never had the modern training and experience that teachers have nowadays. Who knows what she was thinking when Jonny entered her class, so far behind his peers? I only know what she soon realized - the enormously beneficial impact Jonny had on all her students.

And I can share what she wrote after Jonny had completed two years of kindergarten, leaving me to wonder if he repeated because he needed it or she needed it (just kidding, but there was so much love there).

Claire, when you paint such a distorted and destructive portrait of pro-lifers, it only shows that you live your life in narrow boundaries which have never been challenged. Your ability to reason has suffered from the lack of persepctive, and you have become guilty of the same things you accuse others of.

I want to affirm my challenge: to get outside the confines of your carefully-constructed circle of acquaintance - who may all think you did a fabulous job with Terror in the Heartland - and come out to the Heartland and meet the pro-lifers you equate with terrorists. Interview some of us. Eat dinner with us. Talk to us. Listen to us.

If you consider yourself a journalist, why not? I'm currently reading a book
by a 19-year-old Brown student who - in an effort to break past the stereotypes of people who didn't think like him - enrolled at Liberty University for a semester. Do you still have that kind of curiosity - the curiosity that fuels true writers?

Why not ask Vanity Fair to pony up some money for you to take a tour? I already have readers signing up to invite you to their homes. And my readers are very sincere and authentic - it might be a refreshing change of pace for you - just as it was for Kevin Roose to get outside his insulated world where he had been free to pass judgment without the slightest idea what he was passing judgment on.

But back to Jonny. Many babies like Jonny died at Dr. Tiller's hands. They didn't need to. Their mothers could have been encouraged to see that people with Down syndrome have something to offer society. I wish Dr. Tiller had seen that, just as I wish that the man who killed Dr. Tiller had seen that only God should have the power over life and death.

I hope you will read what Miss Bessie wrote about Jonny. Funny, Jonny was my 8th child, but this was the first letter I ever received from a teacher thanking me for one of my children. And another funny thing, it wasn't the last.

You can also find some wonderful pictures of Jonny by clicking the album below:

Jonny

Just noticed that someone landed on MommyLife by googling

How to keep a down syndrome child safe who is a great escape artist?

Interesting because after many years of our boys not wandering, on the day of BenAnna's wedding, we had a neighbor knock at our door with Daniel. We live in the country, where everyone is on at least five acres and only a few houses in sight. Although I'd met this neighbor when we first moved in, I actually don't know exactly where his house is, as it comes off the dirt road with a long driveway.

He'd found Daniel in the horse paddock. Daniel, of course, was dressed in full Clint Eastwood regalia. Though he is currently obsessed with the Lone Ranger, we don't have anything resembling the Lone Ranger, so he settles for a colorful serape and brown hat a la Clint Eastwood.

The neighbor was very concerned. And I understand because I am too. But how to communicate that this wandering thing is such a common problem with children with Down syndrome?  In fact, one time when several of ours were wanderers, I researched and started a file to plead my case should CPS show up at my door to whisk our children away from parents judged negligent because we had kids with physical mobility developmentally beyond their ability to think through where they were going, much less safety issues.

Anyway, as I wake up each morning and blog about whatever comes up, I guess this has come up. And I hope some of you will share your tales of woe concerning wandering children and make sure we will always be there for each other to do the research to make our cases.

Yes, we do need to be more vigilant than most parents, but we will definitely be humbled by our inability to be the perfect parent - as in golf, we are playing with a handicap (no pun intended)

One suggestion I have - which I haven't done since we moved as it seemed that wandering was no longer a problem for us - is to make the rounds of the neighbors with your child with Down syndrome in tow - to introduce them, make them comfortable, and let them know the scoop.

Of course, you must talk to your child and in every way possible communicate where the boundaries are which they may not go beyond. Don't take for granted that they will intuit them like non-disabled children. As I said, their physical development and curiosity may be beyond their abstract thinking ability. And most kids with Down syndrome are weak in the boundaries department anyway, thinking everyone is their best friend.

Here is a resource for all of us:

"Which Way Did She Go?"
Wandering in Children with Down Syndrome
by Denise Bockwoldt

I didn't know I was supposed to worry about this any more than usual. I had read all
the books on Down syndrome for new parents, my pediatrician never said anything about it, nor did the staff at the Down Syndrome Clinic. Yet, in my daughter's five years of life, I have found nothing more stressful for me or more dangerous for her.

I'm talking about wandering away. Escaping. Slipping away undetected usually in the direction of something dangerous: a busy street, a large dog, or a parking lot. She has wandered at home, at school, at the store, at church, and at friends' homes. It doesn't matter where we are. I've become attuned to my daughter's movement at every moment of the day. My "Mommy Radar" is on whenever she is awake, even when she is tucked away in a preschool program or classroom. When we go new places I quickly assess the potential for danger for her if she wanders away trying to outwit her before she does me. I am never far from the phone for fear someone will need to call me to tell me she's escaped again.

For a child who is labeled with mental retardation, she is very, very smart.

Read the entire article here.

Article from a great resource/monthly newletter for parents of children with Down syndrome:

Also, check under Barbara's Picks - Child safety - in my left sidebar for locators to see if they might be of help.

For more, see also

Children's books on Down syndrome
Children's books on disabilities
Down syndrome books for parents

Remember the T21 Traveling Afghan Project? Chandos has now signed up families of children with Down syndrome in 48 states to be host to the fabulous Traveling Afghan.

She's looking for someone in New Mexico and someone in South Dakota. If you or someone you know has a child with Down syndrome in that state, please contact me. Not only will you be added to the itinerary, but Chandos has promised to make an afghan for both the host family and whoever gets the referral!

Our Little Extras: A Mother's Day Down syndrome celebration

If you know someone with a child with Down syndrome, please pass this on - use the Share button below - and let them know we'd love to have their photo too!

The T21 Traveling Afghan Project was started by CJ, in honor of her daughter Emmalee. Emmalee was adopted at the age of fifteen months and is the joy of her family's life.

CJ taught herself to crochet about three years ago and wished she could make every child with Down syndrome a blankie of their own. She has found an enormous amount of love, support and friendship within her Down syndrome family and she wanted to pass that on. Since she would never have the time (or yarn) to make one for every family, she decided she would make ONE afghan to send to them ALL. And why not chronicle the project in the process?!

The Project grew by leaps and bounds. What began as something fun has become another strand to bind together all those families who share a little something extra!
Click here for the T21 Traveling Afghan Project website and more information.

I've signed up Jonny, Jesse, Daniel and Justin!

When our eighth child Jonny was born in 1992 with Down syndrome, my first thought was, "God must love me so much!" I can't explain why somehow I knew that God had provided our family with the opportunity of a lifetime. As Jonny's extra chromosome appears in every cell of his body, I felt that loving response in every cell of mine.

As I mentioned this morning in Maddy's Sweet Sixteen!, Jonny had a baby sister a year later. And between 1995 and 2000, we somehow ended up adoption three more baby boys with Down syndrome - bringing our family to an even dozen (you can read the details in A Tale of Four Adoptions. At left, you can see Jonny with his three younger brothers in 2006.

Did you know there are actually many families waiting to adopt babies with Down syndrome? While currently 90% of babies diagnosed prenatally with DS are aborted, the word is getting out that there is an alternative - and now many lives are being saved as the Internet has made it easy for us to network and find each other.

In 1995, we didn't have the Internet. All I had was a phone number for Robin Steele, who somehow had become a hub of information. Checking in with her by phone on May 29, 1995, I learned of a baby who'd been born in San Diego the day before and signed over to the state of California by his overwhelmed parents. Though it took us two months to wrest him from the foster care system, we have been blessed ever since to have Jesse in our lives. The part Robin played was small - but it had enormous impact on all our lives.

Robin is still in the matchmaking business - see her latest email:

I have been contacted by at least 12 birth famililes or professionals representing birth parents (genetics counselors, hospital social workers, etc.) in the last month of so. These are often families in the beginning stages of their pregnancy and they are gathering information on Down syndrome and on their options. While many (hopefully most!) of these families will choose to parent their child, some will want to make an adoption plan.

I would be grateful for any information you can share with families who may want to adopt a child with DS. We are ALWAYS looking for families so that we will ALWAYS have more families available than we have children who need families! Thanks so much for your help! You can pass on our website (www.dsagc.com) or my email address. We also have an 800 #which is 888-796-5504.

Robin
--
Robin Steele, Adoption Coordinator Down Syndrome Assoc. of Greater Cincinnati

And it has been!

Tripp sent this to everyone in our family last year on Jonny's 16th birthday:

Dear Family,

Today is a "day of days" in our family...Every one of you is special in God's Eyes and in my heart, but I believe we were all transformed in one way or another by Our God when he sent us Jonathan. I praise Our Heavenly Father for His goodness and thank my wife for being Jonny's Mother and Advocate.

Love to you all!
RoboPop

Along with a bunch of pictures - which I can share with you too:

Since Jonny was a baby, this has been my song for him:

And you can tell everybody
This is your song
It might be quite simple
But now that it's done
I hope you don't mind
I hope you don't mind
That I put down in words
How wonderful life is while you're in the world.

~~~~~~~
See also: About that extra chromosome