Tag Archive | down syndrome

October is Down Syndrome Awareness Month

 October is Down Syndrome Awareness month.  Many cities across the country celebrate this with a Buddy Walk.This year in Houston, because of Hurricane Harvey, the Down syndrome group we belong to canceled our walk. Although we were blessed with no hurricane damage, there were nine families from our group who were flooded out of their homes.  The outpouring of love and gift cards that came their way was amazing.  That is the truly wonderful thing about Down syndrome support groups.  We are a family. When we get together our kids go from being “different” to just one of the gang. Our group has classes and events for infants all the way to my son’s group, the adults. Last year on National Down Syndrome Day (March 21 for Trisomy 21) we had a sock hop and my son won Sock King. That’s right. Pulled out his Captain America socks that had little capes on the back. Winner, winner chicken dinner.

I created the character of Danny in my Pecan Bayou Series because people with Down syndrome are a big part of my life. I couldn’t imagine a world without them. Although I love Danny, my son is nothing like him. Danny is a composite of many Down syndrome people I have met over the years. Many times when we are out in public, my son gets his share of stares. He is nonverbal and yet very loud. He has to wear a helmet most of the time because of seizures. We are quite a sight.  Even though being different can be unnerving to some people, we love it when they say hello or smile.   We also understand why some folks shy away. It’s a lot to take in.

Smiles and hugs to all my DS buddies out there. God bless.

 

Happy World Down Syndrome Day!

March 21 is  World Down Syndrome Day. Why 3-21? Because people with Down Syndrome are diagnosed as Trisomy  21 which means they have 3 twenty-first chromosomes instead of 2. Please take a moment and watch WDSD Global Video.

I am the proud mother of a son with Down Syndrome and being acknowledged and heard can be a daily battle for him.

For 2017, Down Syndrome International presents #MyVoiceMyCommunity, messages from people with Down syndrome, among their friends and peers.

They talk about how it is important for their voices to be heard, as equal citizens of their countries and they encourage their governments to listen to their concerns.

When a Writer is a Parent of a Special Needs Child: Guest Post at My Recent Favorite Books

 

 

Yesterday I visited My Recent Favorite Books and talked about what it’s like to be a writer and the mother to a Down Syndrome/PDD child. Melissa also has a great page of autism links for parents and caregivers. I have to tell you the comments posted after my guest post were really wonderful.  Please check them out.  Thank you Melissa! Here is some of my article:

When I first started wanting to be a writer I pursued publishing down traditional paths. One agent stated that if I wasn’t willing to make at least 50 appearances a year there was no way they could promote my book. As a parent I was not willing to make that kind of sacrifice so I tabled my writing. I eventually decided to take the plunge and independently publish and with that create my own appearances in the virtual world.

Read my full blog post “What Happens When a Writer is the Parent of a Very Special Person?” on My Recent Favorite Books

 

World Down Syndrome Day and a Book Review

Happy World Down Syndrome and much love goes out to all my friends with Down Syndrome and the people who love and care for them.  For today I have a review of a very special book about a man named David.   Here is the review I posted on Goodreads.

How David Met Sarah How David Met Sarah by Anne Kelleher

My rating: 5 of 5 stars

I loved this book. How David met Sarah is a story about David, an adult with Down Syndrome. After reading just a little of it, I realized I wanted to read it to my son who also has Down Syndrome. It shows what the world is like for a person with developmental delays. We see David’s fears, his joys, the discrimination he endures and his understanding of life. I applaud Anne Kelleher for so beautifully telling David’s story.

If you know an adult with Down Syndrome, please share this book with them and then check out the sequel, When David Was Surprised.  It is wonderful to find fiction like this for the people we love.

Walking With My Buddy

Like thousands of friends and family members of people with Down Syndrome, I’m participating in a Buddy Walk during the month of October, Down Syndrome Awareness Month. My son and I went for our walk this weekend with many other families and after some warm ups, dancing with cheerleaders and a snack, we set out for two exhausting laps around a ball field. His favorite part was not the walk, but the firetruck they had out for the kids and adults. He, of course, was ready to go in and drive the thing out of the park!

How fast can this baby go?

If you ever wonder why I always include the character of Danny in my books, it is because of this guy. I can’t imagine any part of my life without him…even my imaginary world.

Down Syndrome Buddy walks raise funds for education, advocacy and fellowship for Down Syndrome people and their families.

The really good ones have firetrucks.

Seeing Life Through an Attic Window


Come and visit me today as I guest post on the blog, Bringing the Sunshine. I am writing about our journey with our son who has Down Syndrome and finding the many positive parts along the way. Andi’s blog Bringing the Sunshine is all about finding the good and supporting parents of children with special needs!

October is Down Syndrome Awareness Month


I just came from the natural foods store where I shopped with my son, Andrew. I told him (bribed) if he behaved he could have a gluten-free, soy-free cookie. Andrew is nonverbal so whether or not I was getting through is not certain. His behavior was…questionable, especially when he decided we didn’t just need one bottle of vitamins, but pretty well one of each kind. When we got to the cookies he went for a large bag of the kind we used eat but now must abandon because of soy flour. I found him another, smaller single serve cookie and put it in the basket. He wasn’t having that. We need the BIG bag, Mom. I finally had to wrestle it out of his hand, show him the other cookie and steer him toward the checkout. Did he deserve that cookie? Probably not. Did he get that cookie? He had his first bite down before we left the parking lot.

Some days it’s not so much about the achieving as the trying.

For all the kiddos and adults we know and love with Down Syndrome, we love you, good days and bad.