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

Life as a 7.5 year old Boy

Lately I have been thinking about all the fun things Aidan says and does that just excite us. Watching his mind explore different thoughts and learn new concepts is so fun. I can't say enough how pleased I am with his public school education, we feel very blessed to have found a great school for him. Doug and I try to go over concepts they are learning in school at home and also to talk about things we think interest him. Sometimes it is hard to get to really talk with Aidan about things, because he has his active siblings vying for attention as well. We often find we get the most out of our little one-on-one errands we do with him. I thought I'd jot a few recent conversations down that made us smile.

1. Doug and Aidan went for a drive to check out some videos one afternoon. Aidan mentioned to Doug that several houses had recycling bins like ours. "They must care about the environment, too!"

Then, "That house doesn't have one. They are SHELLfish."

LOL, Doug proceeded to tell him about the difference between the words shellfish and selfish and their spellings.



2. I was making scalloped potatoes for dinner one night and in a hurry to get it in the oven because it takes a long time to bake. The phone rang, I answered it and it was someone wanting to do a survey so I hung up. Went back to preparing the dish. Phone rings again, I told the kids, "Don't answer! I can't talk right now so I am going to let the machine pick up."

Aidan walks into the kitchen, talking on the phone, "Sorry. Mommy can't talk right now. She's cutting the cheese."

Oh.my.word! I started laughing so hard I almost cut my finger! I quickly washed my hands and took the phone, relieved that it was my mom on the phone and not anyone else! I think she was also laughing so hard she had tears coming down her face.



3.This one did not make us smile, but did illustrate what a kind-hearted boy we have. Doug picks Aidan up from school every day and one afternoon a girl in Aidan's class stopped Doug to tattle on Aidan. She claimed he had called her a name at recess. She said, "Aidan called me retarded today!" Doug looked at Aidan then looked back at the girl (who has a history of rubbing Aidan the wrong way) and told her, "I'm quite sure he did NOT say that to you. That is not a word we use in our home."

Aidan added, "See! I told you, J! I don't even know what reTARTed means!"

Doug told her that we do not like that word, it is a very hurtful thing to say. She seemed sullen that he didn't fall for her story.

This happened right before our parent-teacher conference, so we did bring it up with his teacher and ask that she help with that relationship.



4. Aidan got the idea that we need to have one more baby, another sister so we can have two of each. I told him that God doesn't let moms & dads pick if they have a boy or girl, He gets to decide for us. I said if we adopted a child that didn't have a mom or dad then we could pick. I said we could even pick how old they are, what they look like, and could even find a sister that has Down syndrome like Sean.

He determined, "I want a sister with blond hair in pigtails, blue eyes, and light skin like me."

I assured him that as nice as that sounded, we are content to stay a family of five.



5. Aidan has been reminiscing about preschool. He has asked if he can go to school with Sean for a day. "Sean's school is more fun. You get to play in the ball pit (sensory therapy room), go to P.Mooney (speech therapy session) and paint with cool things (fine motor therapy). First grade is tough."

I've been talking to hm about Sean starting kindergarten at his school. He's excited to walk Sean to his classroom in the morning and wait outside with him for Daddy after school. He questioned me, "What are you and Ella going to do when we are at school all day? Just stay home and be bored."


Yep, the boring life of a mom!

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.