Its a Stone’s Throw: Spreading Down Syndrome Awareness

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Last night, stretched out next to Wil in his bed, having just finished reading him his bed time story, I pointed up to the pieces of paper taped on the wall next to us.

“Where is the beetle?” I asked, and he pointed to the picture with a colorful crayon drawn bug.

“I did that one!” He said.

“Yes, I love her purple head.” I said.

“And, orange feet!” He replied.

“How do you like Ms. Wier?” I asked (Ms. Wier is his new resource room teacher).

“I like her.” He said.

“What did you do with Ms. Wier today?” I asked.

“I don’t know.”

“You mean, I’m thinking?” (A great technique I learned from Wil’s summer speech therapist.)

“Yes, I’m thinking.” (Ha! It worked again!)

“Ok, what’s ONE thing? Just one thing you did today with Ms. Wier?” I asked. “Did you count dots? Go over to the bean bag room?”

“The Fall book!” And, then it all started tumbling out.

I laid there, listening, so thankful. So thankful he could now tell me these things, and so thankful he is with people who love him during the day. People who want him to learn just as much as I do.

And, sometimes, I also feel an overwhelming sadness come over me during these same moments. I think of the sweet babies with Down syndrome in the orphanages overseas, or even children here in the US, who were given away, just because of their teeny tiny extra chromosome. Children who have no one to ask them how their day was, children who are not told they are loved. They fall further and further behind by the day, proving the statistics that their parents so feared, simply because they are not given the love, the time, or the opportunity. As these thoughts run through my head, I look, in close up view, at my beautiful boy’s face, his sweet soft pale skin, the pink cheeks, that bright smile, and his wispy blond hair. I smooth his hair back and say to him:
“You are so very loved Wil. I love you so much, I want you to know that.”

He smiles, and says, “I know!” And he goes right back to telling me all the things he did with Ms. Weir that he “didn’t know” just a few moments ago.

When I have these happy/sad moments, I think back on Mother Teresa’s quote, “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

Last Sunday, our Ds support group had our annual Buddy Walk. It was a beautiful, sunny day, the energy was high and the support for Wil and his friends with Down syndrome was no less than amazing! Wil and his buddies with and without Down syndrome held hands on the one mile trek, parents snapped pictures on the playground fixtures along the way, everyone devoured pizza, enjoyed cotton candy, participated in crafts and danced together. There is no fear of those 47 chromosomes on Buddy Walk day. In fact, those with the extra chromosomes are celebrated! And, the best part is, that celebration of our kids does not live only on Buddy Walk day. It spreads far and beyond. We carry that love with us, and have the power to influence others with that love; it is a stone cast across the waters creating many ripples.

I will still have those happy/sad moments lying next to my boy in the times to come; the great waves of gratitude, and the tides of sadness for the sweet souls who have been so sadly left behind. But, maybe, just maybe, for all of those that love my son and his friends, their love will spread to reach a mother in doubt at just the right time. And, that one mother, having been given the opportunity to see her child’s extra chromosome in a new light, will feel her fear dissipate. Over time, as her love grows, she, having known doubt, will become a stronger advocate, having even more power to focus her light on those mired in fear and doubt. And, so the stone is cast across the waters.

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A Winning Spirit

Last Friday, I took Wil to his swim lesson, and another mom from our Down syndrome support group was there with her son. We started chatting it up as our boys swam, and she was telling me how her son also plays soccer. She explained how it is a “typical” soccer team, and the other parents and kids on the team, and on the competitors teams, are very supportive and encouraging of her son, even though he is quite a bit slower.
Then, during a particular game, there was this one parent who cheered on his child to cut past my friend’s son, and score a goal, which he did….http://christieleightaylor.com/a-winning-spirit/

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Why I Gave Up the R-Word Fight

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I have given up the R-word fight. I will do it no longer.
I am done, fini, the end.
Fights take so much darn energy, they are not sustainable over the long term, and at the end, there is always a winner and a loser. I don’t want any losers in this fight, it’s too important. I want to find a way for us all to win in this. The only way I know how to do that is to share.
So, I’ve put away my R word boxing gloves, and replaced them with a keyboard, and share my heart out to you.
You see, I once used the R word, because I didn’t understand the power that word held. I didn’t need someone coming up and telling me how very wrong, awful and hurtful I was for saying it. And, if we are trying to avoid those wrong hurtful feelings, why fire back with them? To change, I needed someone to help me change my thinking. I needed someone to help me understand why it was wrong.

Now that I have the privilege of raising my sweet Wil, who has Down syndrome, I know, first hand, how very hurtful that word is. A word is not just a word. I know better. I know better, because I know my son.
So, to help you understand the hurt of that word, I want you to know my son, too. You may never get to know him like I do, and that’s ok. I just want you to know him enough through my words, that you can feel a compassion for him. A compassion for the work he has to do, and all of the support and emotions that surround that. It is not an easy life, but it is such a beautiful life, and it is very hurtful to have my son hear a carelessly used word to degrade that.

So, I will not whap you in the nose for using the R word. Instead, I will invite you into my son’s world, so you may get to know him. And, when that word is about to escape your lips out of habit, you will pause first. Not because you remember “you aren’t supposed to say it.” You will pause, because, now, there is something within you that feels it’s wrong. You know deep inside that it just isn’t right, and so choose to express your feelings in a different way. 

So, come join me, no boxing gloves needed. Sit, get comfy, let’s have a chat, and get to know each other. We are all winners here.

YOU CAN ALSO READ THESE POSTS ON MY WEBSITE: http://christieleightaylor.com/why-i-gave-up-the-r-word-fight/

October is Down Syndrome Awareness Month – Day #7

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How can you promote acceptance and awareness?
Help spread the word, in your own way, that our kids enjoy the same things your kids do. Wil has a dear friend, Annabelle, and for the Buddy Walk, she decorated a jar with pictures of her and Wil, and told people about her friend. She asked for Buddy Walk donations to raise awareness for Down syndrome.  She raised an impressive amount, but how she really made an impact was showing her love for a friend that she adores, who happens to have Down syndrome.

#downsyndrome #awareness

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Yet another “Dear Offensive Person” blog letter?

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There are a lot of letters being blogged these days, especially from us parents of kids with special needs:

Dear ____

You offended me and you suck.

Here is a list of reasons why you suck….

Sincerely,

Ticked off blogger

These letters are easy to read and get a point across. But, lately, every single letter I’ve read is a list of complaints about someone and how offensively they behaved.

Believe me, I get it. I’ve seen and heard people be rude, quick to judge and speak before they think. And, it sure can be therapeutic to vent it all out in writing.

But, in advocating for my son, I’ve always found letting people know what I do want, rather than what I don’t, to be more effective. So, I will jump on the bandwagon with my version:

Hi there,

Ahhh, you have not had much experience with children with special needs, have you? Yep, thought so. That’s ok, this is your golden opportunity!

Wait, don’t walk away, just humor me for a moment.

You think my son’s singing is strange, but it keeps him happy and occupied while we shop.  Wil, what are you singing?

“Old MacDonald!”

Surely, you know Old MacDonald. Now listen to him singing again. You hear it?

Funny, but I bet you are in a better mood right now than you were just a few moments ago. Ha, thought so!

Believe it or not, your life has just been changed. It’s as simple as that.

So many things can look and sound strange to us, but if we just take a moment to try to understand, we’ll realize that we know the same tune, we just sing it a little differently.

I appreciate your time, you can get on with your day now.

Oh, and you are welcome!

Sincerely,

Wil’s mom

Special Needs High-Low Chart

Hands up

The high of the birth of a beautiful baby boy

the low of the unexpected diagnosis

The high of the realization of endless possibilities

the low of the realization of closed minds

The high of every milestone, no matter how big or small

the low of feeling time stand still when there is no sign of progress

The high of finding and achieving acceptance, awareness and support, especially from those you least expected

the low of finding lack of acceptance, awareness and support, especially from those you least expected

The high of being exposed to a whole new community, a “coming together” for the benefit of the cause

the low of being exposed to those who have their own agenda under the guise of the cause

The high of a love so deep, that the lows are recognized as learning experiences that create stronger and more enduring highs.

I Am A Voice

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I am a voice of

love

beauty

acceptance

I am a voice of

hope

awareness

positive change

I am a voice of

sincerity

purpose

truth

I am the voice of

a mother

an advocate

a child

Hear my voice,

Love and accept him.

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