Happy Birthday Nonny!

Love, Nate

What was your first introduction to inclusion?

Last week Eric participated in a panel discussion through our local childcare association about early childhood inclusion. The panel included a preschool directer, early interventionist, a EEE teacher, child care provider and a parent. Each of the panelists were asked to answer the following questions:

• What was your first experience with inclusion?
• What is one example of a time inclusion worked well--what made it go well--what did it look like/sound like/feel like?
• What is one example of a time when inclusion didn't go so well--what did that look like/sound like/feel like?
• What is one recommendation/wish/ piece of advice you would give to others regarding inclusion?
  

When Eric was asked to address his first experience with inclusion he talked about an experience he had in college. He shared that one day when coming home from his classes he found himself on a bus sitting next to a young man with Down syndrome. Being friendly, Eric decided to ask the young man what he was doing. This young man shared with him that he was in the process of building a surfboard. Of course this peaked Eric's interest for two reasons: one because we live in New England and nowhere near the coast and (2) because it isn't very often you hear about an individual with Down syndrome building something like a surfboard!

For Eric that encounter represented the spirit of inclusion. Eric didn't know what kind of education this person had, but he knew from talking to him that something had worked. The fact that this young man was riding a bus to town (independently I might add) and talking to Eric about his surfboard showed that something was right about his education. It was clear that this young man's family, teachers, and community found a way to give him the skills and support he needed to pursue his dreams. Isn't that what inclusion is all about?

What was your first introduction to inclusion?

Airbrushing away diversity?

Our friend Jane shared this article with us soon after Nate was born. In light of all the advances in prenatal testing (which we hear is becoming safer and more accurate), we are faced as a culture and as a community to consider what this testing means for individuals with Down syndrome. Will we someday have a world without Nates?

http://www.canada.com/ottawacitizen/news/story.html?id=7ef9c418-70c1-49cc-bbbf-cb1ae997b326&p=1

This whole idea of prenatal testing feels a little like pulling a thread on a sweater. First we may be diagnosing Down syndrome prenatally, but down the road it could be the breast cancer gene or something else. It also makes me wonder about "designer" babies with pre-selected genes. Are we saying that there is more value in a certain kind of person or a certain kind of life?

On top of it there is so misinformation expectant mothers receive about Down syndrome. Unfortunately the medical community doesn't always give parents accurate and complete information about DS. Dr. Brian Skotko from Children's Hospital Boston reviewed research that showed a 15% decrease in births of babies with Down syndrome between 1989 and 2005 in the United States. Talk about airbrushing diversity! By no means are Eric and I advocating that prenatal testing not be done, or that other couples should make the same decision we did, but we do want medical staff to have accurate information about Down syndrome and a protocol for how they talk to families about what a Ds diagnosis really means in 2010. Things have changed a lot in the last 30 years!

http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P1sublevel560.html

Below is a picture of our Bean (and hopefully future taxpayer) that was taken at our first trimester screening.

The language we use...

Thank you to Bill and Ria (http://billandria.blogspot.com/2010/08/downs-syndrome-boy.html) for sharing this language guide written by the United Parent Support for Down Syndrome: Go to
http://www.upsfordowns.org/home.aspx. Click on "Information" in the drop down menu and then "Brochures" and "How do I talk."

Good words to use:
Baby/Child/Person with Down Syndrome - the emphasis should always be on the person first, not the disability. When we take care to put children first, and let the disability remain in the background, we are teaching others where the emphasis needs to be.

Developmentally Delayed - This term is the common reference to describe delays in development, such as language, walking and all other areas of a child's learning process. Most families find it less offensive than the term mentally retarded.

Has Down Syndrome - Someone who has Down syndrome is not a victim of, diseased by, nor do they suffer from or are they afflicted with Down Syndrome. They simply have Down syndrome.

Mental Retardation - This is an accurate term to describe developmental functioning level, but is less acceptable to many parents than the term "developmentally delayed". Use it with caution.

Typically developing/ Non-disabled child - Both of these terms are acceptable and positive ways to refer to people who do not have Down syndrome or another disability.

Big No-No's:
A Down(s) - A person with Down syndrome is not the disability. There are many things that should, and do, define that person. It is dehumanizing and strips people of their dignity to be referred to as a disability. Instead of saying "He is a Down" or "She is a Downs", try "He or she has Down syndrome."

Down Syndrome Child/Baby - This goes back to referring to the person first, not the disability.

Normal kids - Please realize that we perceive our children as being pretty normal kids. Comparing them to normal children implies that a child with Down syndrome is something less than normal.

Retard/Retarded - The best reference is developmentally delayed (for children) and developmentally disabled (for adults).

Mongolism - As most of us know, this is an extremely outdated term that was once used to refer to people with Down syndrome. This word should never be used when referring to or about someone with Down syndrome.

"They" as in "they are so loving; they smile all the time; they are always happy." - Please don't generalize about people with Down syndrome. "They" are not all alike; nor are people with Down syndrome "eternal children."

"How mild/severe is it?" - A person either has Down syndrome or they do not. Down syndrome is not an illness. Having Down syndrome does not mean a person is sick.

"But you're so young!" - Although the chances of a woman having a child with Down syndrome increase significantly over the age of 35, there are far more children with Down syndrome born to younger mothers - they are having more babies.

Handicapped - Use "has a disability" instead.

Downs or Down's Syndrome - There is no "s" or "'s" in the name of this syndrome.

Suffers From/ Afflicted With Down Syndrome - Our children are not suffering or afflicted. We must instill a great sense of pride and self-esteem in all children, so should ensure that we do not make anyone feel that Down syndrome is something terrible or something to be ashamed about.

I imagine that there are different opinions about whether or not some of this terminology is acceptable. More than anything, we want our friends, family and community to be thoughtful about the language they use about our sweet Bean.

Do you have a favorite place?

We do. It's Green Mountain Orchard in Putney,Vermont. Besides the fact that they have the most amazing apple cider doughnuts, sticky buns, pumpkin muffins, and apple pies, they have gorgeous rolling hills with beautiful apple trees --- And blueberries, plums and a pumpkin patch too!

I'm not sure how exactly this happened, but we've now been there every weekend since the last weekend in July. Sometimes we just walk and visit with the horses and chickens and have a snack. Other visits we load up on their fruit. I am loving those Macouns.

The vastness of the orchard seems to open us up. We find respite from our daily unfinished to-do list. Breathing in that sweet apple air, we fall into that happy, sleepy, silly, no worries kind of place. We walk, talk, listen, and laugh.

The pictures above are from today's visit with our love-bug. What a kiss-a-saurus!

The 2nd Annual Brattleboro Buddy Walk!

I have to say that today was pretty amazing. It was a cool crisp morning with bright blue skies and a warming sun. Nate was up early like last year - and so was I. This is a day we'd been waiting! We had a few minutes of family snuggling time (which these days mostly involves making funny sounds and funny faces) and then we were up and moving.

This day came together pretty perfectly.......Dedicated volunteers, amazing supporters, great vendors, an inspiring key note speech, lovely walk, great music and yummy lunch. Not only did we get to see old friends, but we made many new friends today as well. It just felt so good to be there. I think we must have had at least 300 people attend and had over $9500 in donations. Wow.

The best part of this magical day is that everywhere I looked I saw people smiling. It was just one of those days....

Thank you my family..thank you friends...thank you beautiful sunshine.
And most of all, thank you Bean for being you. We love every one of your 47 chromosomes.

31 for 21 Blog Challenge!!

Did you know October is Down Syndrome Awareness month??

We've decided to accept the 31 for 21 Blog Challenge from Unringing the Bell! (I'm having some difficulty connecting her link to this post).

It may be late -- but we're in ; )

Quote of the day....

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities,

and so weave a less arbitrary social fabric,

one in which each diverse human gift will find a fitting place.”
-Margaret Mead

....now off to get some sleep before our 2nd Annual Brattleboro Buddy Walk tomorrow!!!

http://brattleborobuddywalk.org/