He’s a Wonder

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Not so long ago, if you used the word retarded around me I would’ve chewed you up and spit you out. How dare you use a word that demeans a group of people based on their cognitive abilities. How could someone be that rude and insensitive?

But then again, I can remember a time when I unknowingly did the same thing myself. I never meant any harm. It was just a word and I wasn’t making fun of anyone. At least, I didn’t think so. The key words being “didn’t think.”

So I’ve decided to give most people the benefit of the doubt and advocate for better word choice. We often speak words without thinking. My filter frequently breaks down. But I’m a work in progress. And giving birth to a child with an extra chromosome  put me on the fast track to improving my filter.

That being said, there are also people who, well, just plain suck. You know the saying, mean people suck. It’s true. They do. They can change if they’d like, or they can stay that way. Their choice. I find arguing with insensitive, callous people pointless. Actually, there’s a Proverb that covers the same topic: Don’t answer the foolish arguments of fools, or you will become as foolish as they are. I’ve tried sending letters to people who’ve made the news mocking those with disabilities, not sure it got me anywhere.

So today I read about a  comedian who complained about word usage and what we can’t say anymore.  His thought was that if you can’t say retarded you should substitute with “extra 21st chromosome.” I’d like to tell you that felt like a sucker punch. But it didn’t. I’d like to tell you mamma bear came out gnashing teeth and ready to claw apart said comedian. But she didn’t. They’ll always be jerks in the world. I realize I can’t change them all.  (I do find what he said extremely insensitive and rude.)

But my family and I can make a difference. My son attends kindergarten in a general ed classroom. He can barely write his name. He can’t quite count to 10. And he doesn’t know all the letters in the alphabet. Yet.

He’s learning. He says more each week. He recognizes new letters and numbers monthly. He’s far behind his peers academically. It’s a new experience for both my son and his peers. And it’s been an extremely positive experience for everyone.

You see, the students in our elementary are becoming familiar with Down syndrome. At first, it was different for them to see a student still in a pull-up. A student who is very limited verbally. Yet, they’ve found a way to connect. Whether playing on the playground, helping each other at lunch, or sharing a book together. My older son, who attends the same school, loves seeing his brother in the hallway. And he and his friends have made it a point to look out for his little brother.

My youngest walks the hallways and students from kindergarten through fifth grade give him high fives. The parents say hello and include us in birthday parties and play dates.

And just last night at a Cub Scout event, an early elementary scout said hi to my youngest. The little scout then asked me, “Is he a Wonder?” If you’ve read the book or seen the movie Wonder, then you’re already smiling. I looked at the little scout and replied, “yes, he is a Wonder.”

You see, I’m not going to start yelling on social media to a person who makes a living telling off-color jokes using Down syndrome as his punchline, even though I find it reprehensible. No, I’m going to keep integrating my son and our lives into the community. Into the world. So people get to know him. So others can see his beauty and passion for life. His perseverance.

I don’t yell. I let the world see and interact with my Wonder. Maybe someday, most people will see a Wonder and not a punchline.

 

 

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He’s More

I sat in my son’s IEP meeting waiting to discuss his kindergarten placement. I’ll be honest, I dreaded the meeting.

I felt like I might need to fight to place my son in gen ed.

I felt like I might need to persuade others that my son deserves the opportunity to go to school at his neighborhood school with his brother and peers.

I felt like my son was being viewed as a collection of test scores and data. You know, like a lab rat.

I wanted to shout:

My son is more than Down syndrome.

My son is more than cognitively impaired.

My son is more than “choose the right letter for three out five trials with 80% accuracy.”

My son loves to play hockey, basketball, baseball, and soccer.

My son loves to sing.

My son loves to look at books and to have someone read to him.

My son likes to pretend to fix his toy cars.

My son can stream music to a wireless speaker or Netflix to a TV. (And I’ve never shown him how.)

My son can follow directions.

My son knows his morning and evening routines and never forgets to brush his teeth.

My son loves to use the self check-out the library.

My son tried skiing in Colorado this spring.

My son will try to wrap you around his finger. (Don’t let him. I don’t.)

My son will make you laugh.

My son will give you a hug when you’re sad.

My son will be a blessing to those around him.

My son will start school in the least restrictive environment possible. If that doesn’t work, we’ll look at our options.

To the parent going through that the same situation; take heart, the meeting may just surprise you in the end.

It turns out, I didn’t need to shout. I didn’t need to be defensive. Our decision was respected, not fought.

And the staff at his new school were more than supportive. In a meeting where I felt like nothing but limitations were presented, his new team seemed to see the potential I did. I felt like they saw more than a collection of data. More than test scores. More than a kid with Down syndrome. They saw my son.

 

Keeping Memories

It was only two days ago when I wiped your face and put on cream.

It was only two days ago when I held your hand.

It was only two days ago when I kissed your forehead.

It was only two days ago when I hugged you.

It was only two days ago when I you last looked into my eyes.

To be exact it was less than two days. Maybe thirty six hours.

I spoke to you this morning. I don’t know if you heard me.

Your breathing was fast and labored. I told you I’m sorry I wasn’t there, but you’re in my thoughts and mind constantly.

And now I wait for the phone to ring. To tell me the news that you’re really gone.

I don’t know what that means. For 43 years you’ve been a part of my life. I’ve been a part of your life since you were 50 years young.

When I was little I’d wait on our front porch, dressed in play clothes, waiting for your arrival.

When I moved closer, we’d see each other weekly. Almost always for Sunday dinner. You made the best pot roast ever. And you always knew to have plenty of mashed potatoes for me, and honey for the biscuits.

You’d come visit me when I didn’t feel well. And when it was all the rage you even managed to get me a Cabbage Patch Doll during a Kmart Blue Light Special!

We would take trips to Arkansas during the summer. And we’d both complain about the heat. And you’d pay me a dollar if I could stop talking for five minutes.

Later I moved even closer. I was in sixth grade now and would ride my bike over to visit with you after school and on weekends.

I went to college in Michigan’s Upper Peninsula. And you came to visit and watch me graduate.

Even in your 70s and 80s, you came to visit me. After my first child was born, you came and helped out. You made me the best dinner. Ever. Homeade fried chicken, biscuits, green beans cooked the southern way, and peach cobbler.

I like to think I was there for you too. I remember my brother and I driving you to Arkansas for the funeral of one your sisters. That trip stands out in my mind as I made it with you in my thirties. I was no longer a child. We drove around and you showed me where you hung out as a young woman. Where you and grandpa would go dancing. Seeing it in person with you meant so much to me.

The past few years you’d give us a scare and I’d drive across the state to see you.  But then again, I’d always drive to see you. Nothing could keep me from you.

I enjoyed learning to bake pies from you. Perhaps one of my fondest memories. We’d make snack size apple pies and full size pies. I still love to bake pies, and I attribute that to you.

And we both love to watch the birds. You’d call me and ask me about a bird you couldn’t identify. I’d send you a video of a magpie I spotted in the mountains. Less than a week ago, you sat in your chair looking out the window at the feeders outside your living room window.

I could go on and on, but as I listen to the birds sing outside my window, I think of you. Hoping you know the birds are singing outside your window too. And when your last breath is taken, and your time on this earth is through, I hope the birds bring you to heaven and sing their sweet heavenly song for you. And when I hear the sweet chirps outside, I’ll remember you.

For 43 years you’ve been a part of my life. After putting my thoughts to paper, I realize you’ll always be a part of my life. I have memories that could fill books. I have a love of outdoors, the south, birds, and pies, because of you.

My heart is breaking. But I’m so glad I had as much time as I’ve had. I’m so happy that we’ve always been close. Because I’d rather sit here to today with a breaking hurt than sit here today void of such wonderful memories and the love you gave to me.

I love you, Grandma.

Kindergarten Roundup

While I sit at my computer, my son sits in a kindergarten classroom a mile away for kindergarten roundup.

Like the other parents who dropped off their child, I’m wondering what he’s doing right now. I wonder if he’s making a friend. I wonder if he’s enjoying himself.

When I filled out standard forms regarding what my child can do, I had a lot more no’s than yes’s.

Can your child say his name: No.

Does your child know his birthday: No.

Does your child know the alphabet: No.

Is your child able to take care of all toilet needs by him/herself: No.

And so the list of questions went. I won’t lie. It wasn’t easy. I observed a gen ed kindergarten classroom yesterday. I fought back tears as I wondered how my son would navigate this environment. Was I wrong in thinking this is even a possibility? Am I just wasting everyone’s time?

I expected to be a blubbering mess this morning. But then my son and I entered the school.

Usually, when the principal says hi my son turns away. Today, he gave him a high five.

My son hates name tags. Today he put it on with no complaints.

My son isn’t always so sure about going over a to a group of kids to play. Today He sat down and played with blocks.

He smiled for his picture. OK. So he loves to get his picture taken. That wasn’t new.

Today I saw a boy excited to do what his big brother does. At his pace.

Today I saw a boy who could adjust to a new setting better than I expected.

Today I saw the blessing that Down syndrome has brought to my life.

Good luck my little buddy. May you bless others the way you bless me.

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Love. Peace. Comfort

 

 

A quiet and kind man sits in his office and ponders the difference a year can make: not only professionally but also personally. He reads and shakes his head at the news: a presidential contender wants to make a database of Muslims in the United States so they can be tracked. Singling out groups of people based on religion always leads to suffering. He reads how people are afraid that Syrian refugees could be terrorists. He thinks of his family in Syria who are living in a war-torn country and how there’s little he can do for them here in the United States. How they would give the shirt off their back to help someone in need, regardless of the other person’s religion. He has lost family and friends in this war.

He gets up from his chair and walks around the building to clear his mind. He walks past his former boss’s office. He stops to think of the man’s widow. He realizes the holidays can be a difficult time. And just knowing someone is thinking of you can make a difference.

On his way home he stops at a store to buy the widow a Christmas card. It’s a winter-white card with a red velvet cardinal perched on a silver tree. The card has a simple greeting of love, joy, and wonderment for the season.

He brings it to work and quietly asks a coworker to pass it around the department for everyone to offer their wishes. He smiles and heads back to his office.

 

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She stands in her kitchen baking Christmas cookies as she has every year. The kitchen smells of gingerbread. Her Christmas tree is lit and carefully decorated with family ornaments gathered throughout her married life: all 33, almost 34 years. A love-filled marriage and four children. Darlene Love’s “Christmas, Baby Please Come Home” is on the radio. Sadly, this song stirs up bittersweet emotions of Christmases past and how Christmas will be different this year.

She puts the cookies in the oven and decides to get some fresh air on this unseasonably warm December day.

After a brisk walk with only the sound of rustling leaves on the ground, she heads to her mailbox. No decorating the mailbox this year. That was always his task, and she doesn’t have the heart to do it.

She collects the mail and flips through the colored envelopes. On this dreary day, a bright red envelope catches her eye. She opens it and reads the many warm wishes of thoughts and peace for her holiday season. She recognizes the names as the coworkers of her late husband. She appreciates their thoughts of her after months of his passing. She is comforted by this small gesture. She smiles and heads back to her kitchen.

 

One small gesture is all it takes.

One small gesture toward peace, love, and comfort.