Spread the Word – 2014

Imagine you’re a stand-up comedian.

Your audience is comprised of people with Down syndrome and other intellectual disabilities.

Would you proceed to make jokes about riding the short bus or licking windows?

Would you say “that’s so retarded,” “don’t be retarded,” or “don’t be a retard”?

If you wouldn’t say it then, you shouldn’t say it ever.

Take the pledge to end the word: http://www.r-word.org/r-word-pledge.aspx

For a beautifully written article on the subject, read the following article: http://www.huffingtonpost.com/john-franklin-stephens/i-am-the-person-you-hurt-when-you-say-the-r-word_b_4904579.html?1394038063

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Christmas List

Recently I watched a video on YouTube by two boys, ages 6 and 7, who wanted to make a video to speak up for their sisters. You see, the family’s house was spray painted with hateful and ignorant comments because two of their young children have Down syndrome.  (You can watch the video here.)

Being the mother of a child with Down syndrome, I felt a huge range of emotions watching this.

First, I was angry. If I ever caught some jerk doing this, all 5’3” of me would come down on that person like a mother grizzly defending her cubs. I seriously had the urge to kick someone’s ass. (And I promise to start throwing punches should I ever see someone being this malicious!)

Second, I felt hurt. Hurt because nobody deserves to be the victim of a hate crime. Hurt because I can’t bear the thought of someone mocking my child. My sweet one-year old has the best smile. He lights up a room by just being his sweet self. It’s a hurt I can barely describe. It feels as though someone has grabbed your heart and stomach and started twisting them and won’t let go.

Third, I felt hope. After I had a moment to calm down, I realized that I had watched two young boys show more compassion than some adults. Their video has gone viral and it’s being shared all over social media.

I watched this video by the glow of the Christmas tree. And I knew what to put on my Christmas list. My wish is that every person who reads this blog post will share my list with at least one person.

My Christmas Wish List:
•    I wish that people would stop using the word “retard” as in insult. Don’t call someone “retarded” because they are slow to catch on to a joke. My son isn’t the butt of your joke. He has feelings.
•    Please don’t use the phrase “short bus” “window licker,” or the one I really can’t stand, “F$#%tard.” I’m sure my son will ride the short bus to school, but he’s no less of a person than your child who rides the full-length bus.
•    Please don’t be afraid of someone with a disability. Don’t back away from them and act like they have some contagious disease. People with disabilities are people.
•    Show compassion to others, and teach it to your children.

My hope is always that as my son grows older, acceptance will become the norm.

Happy First Birthday

One year ago my planned course in life took a detour.  I wasn’t expecting this change in course, but life has a way of reminding us that we don’t know what the future holds.

Today is my youngest child’s first birthday. He was a little peanut when he was born—6 lbs, 4 oz. Now he’s a whopping 21 lbs. And he’s been pretty healthy, other than a bout of RSV and pneumonia. Neither illness lasted long or resulted in hospitalization.

He wakes up in the morning by cooing and chatting in his crib, brining an instant smile to my face. When he sees me, his brother, or his dad he gives us his ear-to-ear smile. It’s a smile that radiates happiness to everyone around him.

He loves to look into my eyes and study my face. Sometimes it seems like he is looking into my soul.

He loves to chew on Sophie the Giraffe. (An excellent toy, even if it is over-priced and ridiculously trendy.) And he loves to play with his elephant busy ball popper and superstar sing-along stage.

He loves to eat spinach-mango-pear puree and yogurt. Like his brother, he seems to enjoy Sunday morning pancakes.

He loves to swing and go for bouncy rides.

He’s learning and absorbing so much his first year of life. But I’ve learned more.

I’ve learned that the timing of developmental milestones matters more to me than to him. He isn’t crawling yet. His hypotonia makes it more difficult. He works hard on building his core strength and gives it his all in physical therapy. He keeps trying. He doesn’t give up. I don’t think he looks around and thinks “I can’t crawl yet, but that other one-year old can walk.” I do, however. But if he’s happy and doing his best, then why should it matter to me. I know he will do those things too. In his time.  So I’ve learned to enjoy each moment. I don’t spend time so much time concentrating on the big picture that I lose sight of the little details that make it complete.

I’ve learned Down syndrome isn’t something to be scared of. The past twenty years have been full of research in ways to help children with DS. Early Intervention starts in infancy. Sure, there are lots of appointments for physical therapy, speech therapy, and occupational therapy, but it advances a child’s development. Every day I read about people with DS who do more than thought possible: owning a restaurant, acting, writing, and drawing.

Unfortunately, I’ve learned that words can hurt more than I thought. Using the word “retard” as a punch line demeans my son, and thousands of others with disabilities. Making fun of people’s appearance, particularly those with Down syndrome is like a punch to my stomach. It hurts. That being said, I have learned I’m also much tougher than I thought. Words can hurt, but nothing will stop me from protecting my son and advocating for him and others.

I’ve learned that I have wonderful friends and family. (OK, so I knew my family was pretty cool and my friends too, but I didn’t know how great.) The first few weeks were tough for me. I didn’t know what having Down syndrome meant for my child, or for me. I just needed someone to listen to me. I just needed people to congratulate me on the birth of my child and not treat us any differently. And every one of my friends and family did just that. Thank you.

But most important, I’ve learned that my education has just begun. I look forward to what he will teach me and what we will learn together.

I’ve learned to look forward to our future.

Happy First Birthday To My Little Buddy!

My unexpected trip to Holland

They say your wedding day and the birth of your children are some of the best days of your life. I have found that to be true. My wedding day, the birth of my first son, and the first half hour after my second was born were the happiest moments of my life.

Then the moment pauses. The pediatrician examining my son said she had a few concerns: the extra folds around his almond-shaped eyes, the straight-lined crease on his hands, the hypotonia. Immediately after she mentioned the shape of his eyes I knew what she meant.

My baby boy has Down syndrome.

Blood is drawn. An echocardiogram performed. A social worker visits and hands me a packet of information. Another pediatrician confirms the preliminary diagnosis. I want everyone to leave and let me sleep so I can wake up from this dream.

As I held him he looked straight into my eyes. It may seem absurd, but it was as if he was trying to communicate to me that even though he wasn’t the little boy I expected he still hoped that I would love him. And I did. From that first moment I held him I was completely and utterly in love. I knew I would do everything in my power to be a strong advocate for him. To give him every advantage I could.

Less than two days after his arrival we were discharged. (My son was only a week early, and other than being a bit jaundiced, he had no health concerns. I was, and still am, very grateful.) I decided to take him for a walk around the Labor and Delivery Ward to show him off. As I walked along I passed a young man sweeping the floor. He stopped to tell me Congratulations.

He had Down syndrome.

As I turned the corner I broke into tears. It’s terrible to say, but it’s true. You see, my boys were going to be all-American, well-rounded quarterbacks—look out Peyton and Eli! I had laid out their future before one was born and before the other was two. But none of my visions had one pushing a broom around a hospital. I was mourning the loss of the child I had expected. And that was OK.

Once I collected myself, I continued on my walk. I ran into the young man for a second time. I was mad at God; how much more “in-my-face about the future” did he have to be? The young man asked about my baby: his name, weight, number of siblings. Then he congratulated me again, looked at my baby, and said, “He’s beautiful…he looks like me.” I swallowed back the tears and thanked him for his kind words.

Beautiful. Like Me.

He seemed to be referring to not only my son’s sweet face, but also his own inner beauty. He didn’t see the bleakness I saw. He saw a newborn not Down syndrome. Perhaps it’s a gift far greater than tossing a football in the NFL to look at oneself and see the beauty and not get hung up on what society deems beautiful and “normal”. A gift I don’t know how to pass on to my children no matter how hard I try, but perhaps, my son can instill in me.

My mother’s intuition tells me that my son will teach more than I will have ever expected. There will be struggles. There will be tough times. This world can be a cruel place. But something tells me the joys are going to be beyond my comprehension.

He is my pride and joy.
He is my beautiful boy.

(The poem “Trip to Holland” explains the title. http://www.our-kids.org/Archives/Holland.html)