World Down Syndrome Day, 2010

It's March 21st again and that means it's time to recognize World Down Syndrome Day. When this annual event was founded a few years ago, it was a day I looked forward to with a sense of pride and happiness. I thought, "How cool, March 21st- what great day to celebrate and build awareness for our loved ones with Down syndrome!" The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome, hence 3rd month of the year and 21st day of the month. I had fun finding a special way to mark the occasion.

Last year, I was a little less enthusiastic about it because I was feeling disappointed in society at the time. President Obama had made his blunder about bowling and the Special Olympics. Tropic Thunder had been given Oscar nominations. I felt like society had a lot of learning to do about respecting the differently-abled and I wasn't sure anything I did could make a difference.

To be honest, this year I am feeling even more disappointed in society. In fact, I feel downright RUN OVER by the world outside of my home. I feel like my child is so raw, naked and vulnerable to mean spirited people who find joy in the verbal and physical cruelty they inflict on people with Down syndrome. It's completely affected my reaction to how I communicate online. I haven't wanted to blog much, I've considered changing my blog from public to private, I restricted access to my Facebook photos, I'm even more sensitive to people misusing the R-word.

Why, people? Why does this have to happen? Why is it so amusing to you to make a face and say "Look at me," I have Down syndrome. Yeah, that's funny.

I'm angry. I'm angry that I feel this way. I'm angry that attitudes like that put my child's life and well-being at risk. I'm angry that more people are not angry that insensitive people like this are hurting innocent people like my son. I'm angry that I can't share the ups & downs of his life without worrying that some jerk is going to take my photos and use them to laugh at my son.

And it makes me sad and scared, too. I'm scared to death to have him in school, unable to defend himself. Unable to understand when someone is being mean to him. Unable to tell me when he's been hurt by others.

I'm doing all I can to help him. To protect him. To educate anyone who will listen to me. I'm told "it's too much, Deborah" "You're taking it too seriously, Deborah." "She didn't mean it that way." "Don't let it get to you! If you do, that means the bullies win."

I don't know what the answer is. I don't know how to make a difference, how to change the world. I don't know if I still believe I can.

All I know is that I hurt where I only want to love. I want to push that anger and those fears away and wrap myself and my family up in a cozy blanket of security and comfort.

I just want us to live together, with respect, understanding, empathy, and peace. Give me this one day to believe that it can happen. Can we all try to 'Aim High Enough' today?

*Edited this morning, to share a beautiful message created by an advocate I adore. This brought tears to my eyes this morning because the music says it all. Look for our smiling boy, 2 minutes 4 seconds in.

Make an on-line slide show at www.OneTrueMedia.com

WDS Day: Parktime Fun

We wanted to get out and do something fun as a family on WDS Day, but since Ella was sick we didn't want to meet up at the Wichita Zoo with the DSSW group. Instead, we took a little trip to a local park to play for awhile.




The kids had a fabulous time and Ella got to ride in a swing for the very first time. You tell me if it looks like she enjoyed it as much as her brothers?








Right after I took the photos of the kids swinging, Doug was swinging next to Aidan and said "Look at me! Look how high I am!" Aidan turned to look at him and somehow fell out of his swing, landing on his shoulder! Immediate tears and crying. He has a nice purple bruise there, but no swelling or movement pain. Crazy! I thought for sure he broke a bone!

After Aidan recovered, the boys headed over to what we not-so-affectionately call the Slide of Death. Sean climbed up this scary thing several times by himself and just loved it! Yikes!




That was about all my mama heart could handle, so E and I went to the van so she could nurse while the boys ran around.

The meds seem to be helping and she sounds much better today, no more wheezing. She did have another cough-then-puke fit last night. She just has too much mucus moving around in there.

World Down Syndrome Day, 3-21-09

This is the third year since the foundation of WDS Day and feels very critical in light of the recent Obama situation. It seems even more critical to continue to get the word out about the civil rights of the special needs population. So much has happened already this year that makes me feel like our efforts in raising awareness are just not making the progress they should. How else do you explain how a negative movie like Tropic Thunder can be nominated for an Oscar and win other awards? In spite of all the media attention that Sarah and Trigg Palin brought, people still do not get it!

I know that others before me have made huge strides. At least our children are not still put in institutions in the US like they are in other countries. At least our children have been given the right to a public education. At least our children are living healthier, longer lives thanks to medical advances. At least our children are growing into adulthood with marketable skills and gain tax-paying jobs.

But it's not enough.

I want more for my son and the rest of the special needs population. I want equality for them. I want respect for their abilities. I want happiness for them.

I don't want them treated like the butt of a joke. I don't want part of their medical diagnosis used as an insult.

When I first heard of WDS Day, I wasn't sure what I could do to help promote awareness. The first year, I organized a Dress Up for Down Syndrome Day fundraiser and was happy with the success of it. The funds I raised were used to buy copies of Gifts to give to doctors and libraries in my community. I also made a point to advocate where Sean spent his time- in his preschool. I bought a board book featuring children with Down syndrome and donated it to his class in his honor. I have continued this tradition each year. This year we sent a copy of I'm Ben and I've Got a Secret. I hope that by giving Sean and his classmates stories and images of kids like him will teach them at a young age that diversity is good.

New this year is a campaign to stop the use of the R-Word.



I regretfully admit that in my early adult years, I used this word in a joking manner amongst friends. I used it interchangeably with words like "stupid" or "dumb" in reference to things or people that bothered me. I didn't know better. It didn't occur to me how offensive this was. When Sean was born, obviously I became very sensitive to it. The light bulb was finally lit and I could see what it meant from another perspective. I find the misuse of this word utterly offensive and crude. I will most certainly raise my children not to use it or tolerate it's use.

I urge you to do the same. We have got to continue to make progress. Just as Sean struggles each day as his milestones are met with a million inchstones, this society must continue to make progress against hatred, ignorance and indifference towards differently-abled people. Let's all think before we speak. We can make a difference, one person at a time.