When Nichole – my daughter with Down syndrome – was first born, I joined an online forum for parents of kids with Ds. I was able to ask questions, share my feelings and thoughts with other parents that walked the same path and understood my journey in a personal way.
There was a group of more “seasoned” moms that took me under their wing as their children were older than Nichole. Their words of encouragement and affirmation made a difference in my journey, and I stuck around these incredible mamas.
As we talked and connected, we began to discuss advocacy efforts for our kids within the medical community, and the high statistic of abortion for a prenatal diagnosis of Down syndrome. Diane Grover stepped up to the plate and decided we needed to stop just talking about this, and actually do something about it.
And then the International Down Syndrome Coalition (IDSC) was born. Just a group of moms with the same passion and heart to spread awareness that ALL life is precious.
We never imagined what the IDSC would become! Just a couple of weeks ago, the Great Wolf Lodge hosted our first get together in five different locations as we kicked-off World Down Syndrome Day.
Many people worked hard and long to get us to where we are. I am incredibly thankful for all these people!
So I want to share the IDSC with you by sharing our World Down Syndrome Day video. It is amazing, and I think you will be moved. This is the reality of our humanity, of being loved and created by God – perfect – just the way we are.
I consider it a privilege to be a part of the International Down Syndrome Coalition and serve alongside these amazing people.
You can also find the International Down Syndrome Coalition on Facebook and Twitter.
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Photo featuring Alicia Llanas and her kids. Alicia is a valued member of the IDSC as she heads our efforts in the Latin community.
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I have a 52 year old daughter,Gretchen, who has lived independently for most of her life;worked in the community, traveled and is now afflicted with Alzheimer disease (mid-stage). She can no longer speak. walk, eat on her own and is totally dependent on assistance for everything. She still has her beautiful smile and can recognize family and friends by her facial expressions. She is personified unconditional love!
I have been in contact with the National Down Syndrome Assoc, and worked with the Alzheimer Assoc. here in Connecticut, where we live. Please try to communicate more information to parents on what to be aware of with Alzheimer’s disease as there loved one ages. Gretchen was diagnosed in 2003 with onset and the progression was slow until about 3-4 years ago when everything started to escalate. A more informed parent is an educated parent. God Bless to all.
Lorraine, you are absolutely right, there is very little out there in regards to what to do as our children are no longer children and they “age out” of available programs, or as they become adults. With my children being so young, I have spent enough time devoted to that type of research. But I know there are other parents and bloggers who have and are sharing their experiences.