Wednesday, July 20

Grange hall talk

We've been keeping busy lately.  Our family was invited to talk at the Snohomish County Grange meeting and thank their women's comittee for making blankets for new babies born with Down syndrome in Whatcom County.  My parents are in Snohomish County which made this connection great.  So we drove down to Granville grange in Granite Falls and met with the folks there to talk about Down syndrome awareness, support and to say thanks for the blankets!

I thought to share my speaking notes with all of you as a way to update what our local DsO is doing.  Each DsO is a bit different in outreach, New Parent support and activities for everyone.  And I love reading on blogs what each of you are doing within your local area support systems.  So I'll share my speech with all of you.  The questions that followed the speech were interesting, most people seemed to want to know what types of Ds there are, and to mention how their own family member with Ds lived a full rich life.  It was a wonderful day and really enjoyed having my family there to support Tommy and people with Down syndrome in general. Hannah has chosen her culminating senior High School project to be on family support systems for people with Down syndrome.  So I'm sure her speech will be a highlight next June!

Speaking notes from July 16:
I’d like to thank you so much for the invitation to come today to talk. Thank you to Jan, The Horseshoe Grange, and all the women who made the blankets for newborns with Down syndrome. What a terrific project and we are so thankful.

First I’d like to introduce myself, I’m Sandi McMillan, married to Colin, mom to four active kids (age 17 down to 4 ½), daughter to Bill and Sue Pepperell and a sister to Debbie and Tami. I’m a mom first, farmer by choice and accountant by day. To tell you a little of our story, our last two children are twins born the twelfth day of the twelfth month and 12 minutes apart! We did have a prenatal diagnosis for probable Down syndrome but soon learned after Tommy was born that he had multiple diagnosis and needed immediate medical interventions. He was born with Hirschsprung’s disease and required surgery to remove 1/3 of his colin. He also was born with a complete AV canal heart defect and required open heart surgery at 6 months old. Tommy has a g-tube which is a feeding tube in his tummy for thin liquids. He also is moderately immune compromised with a condition called Polysaccaride Deficiency Syndrome.

Since Tommy’s birth, my husband Colin and our teenagers, have been volunteers and advocates for people with Down syndrome. We began volunteering at “Down syndrome Outreach of Whatcom County” in 2007 by fundraising in our first Buddy Walk which is the nationally known fundraising walk for local areas to raise awareness for Down syndrome. We quickly turned the interest in advocacy into hundreds of hours volunteering over the past four years serving in our DsO.

One of the first projects in our DsO was to create a brochure for newly diagnosed parents, so there could be accurate information given to new parents. We learned that most new parents didn’t have a prenatal diagnosis and no time to prepare by looking for facts. We met with the manager at our local labor and delivery and hand delivered our factual brochures and explained the DsO services for outreach to new parents.

The brochure highlighted facts such as 350,000 people in the US have Ds, it’s the single most common genetic disorder. About 80% of children with Ds are born to moms under the age of 35. All people with Down syndrome have some level of intellectual disability, which can be mild to severe. Most are somewhere in between. Children with Down syndrome look more like their families than they do one another. They have a beautiful full range of emotions, attitudes, are creative and imaginative in play and pranks and grow up to live independent lives with varying levels of support.

Down syndrome will not be the most interesting thing about Tommy as he grows up. Remember we share much in common with you as a parent, raising children fills your life with unimaginable delights and difficulties.

Today, people with Down syndrome are achieving advances in healthcare and increased opportunities in education. With support, many move out of the family home, take care of themselves, hold jobs and live full rich lives.

We thought the brochure was great, but wanted to give parents more than just a piece of paper to read. Colin and I knew first-hand what it was like to feel supported by other families with older children with Ds when Tommy was first born. We had the great privilege of meeting the Weg, Gillig, Howard and Johnson families early and were very supported.

In wanting something more than just the brochure, we worked with our DsO to create a New Parent bag filled with resources, a blanket, a toy. Our DsO volunteers are creative and made a beautiful bag with yellow and blue colors on a butterfly as the symbol outside the bag. We found a developmental calendar at Band of Angels that allowed families to place a milestone sticker in whatever month the child achieved that success. Even if walking came at age 3 or 4. The first year of the New Parent Bags my mom Sue and my aunt Elizabeth made the majority of the blankets that went to new babies. One of the DsO volunteers Bill also donated blankets. Last year, we were grateful to the Horseshoe Grange for making beautiful blankets that were given to new babies. The blankets, as a piece of the New Parent bag, make a big impact to new families. The feel others are thinking of them and we are congratulating them on a new baby! Other items in the new parent bag include the DsO brochure, National Down syndrome brochure, Arc and P2P information.

The New parent bag is wonderful, and even better is the long lasting connection that a parent makes with a helping parent that has an older child with Ds. An instant support and resource is made between the new parent and the helping parent that delivers the bag.

Our Down syndrome Outreach, as a program of the Arc of Whatcom County, has an event each month.  We would love to invite all of you to events to see how people with Down syndrome lead full and rich lives. 
Again, thanks for making the blankets for DsO of Whatcom County.

Tommy Adventures