To the Typical Siblings of a Brother or Sister With a Disability


Dear typical sibling of a brother or sister with a disability,

Today I want to speak to you as a parent — perhaps not your parent — but a parent nonetheless.

Ellen's daughters

I know you’ve had to sacrifice so much, and I wish you hadn’t. For the many times you’ve thought it wasn’t fair, we’ve felt it too. And if you’ve had to miss out on life experiences, please know that we wish we could offer you the world.

Perhaps at times you’ve felt overlooked, because your sibling’s needs demand all of your parents’ attention. But they see you, they see you in the cracks of their vision, and their hearts hurt for the moments they’ve had to sacrifice time with you. But many nights they think about you, of the wonderful person that you are. I want you to know that the pride and love they feel for you could never be measured, you are what keeps them going many times. You make their days brilliantly beautiful.

And you’ve told us – your sibling with a disability has affected you too. Yes, there’s been sacrifices and some things you’ve had to give up, but you’ve gained so much from your sibling too. You’ve said your siblings with disabilities have shaped you into who you are today. We look at you, and we’re sure there is not a more compassionate, caring, accepting and kind human being walking on this earth.

We’ve seen you be frustrated with your sibling, because after all you are siblings. We’ve seen the frustration in your eyes. But then something happens – perhaps it is a look that as parents we don’t recognize – but we see that frustration be replaced with love. You can be annoyed by hands pulling at you and suddenly be a willing participant in the biggest, sweetest embrace that any siblings could ever share. I see the love in your eyes for your sibling, and I cannot believe that the two of you can share this kind of love. It’s not typical, but it runs so deep, and it reflects a quiet strength in you that brings me to tears.

We’ve seen you stand up to the bullies, even when it was scary. Because you understand so deeply that it isn’t right to diminish anyone, in any way.

And you have extended not only a smile but a friendship to the kids that others so easily overlook. Because you don’t, you don’t ever overlook people. You notice them, you affirm them. With your smile and friendship you remind them that they matter in this world too.

You are perhaps more mature than someone your age. You’ve probably had more responsibilities than most of your peers. I guess in some ways you’ve lived a different life, life impacted by disability. And every day you’re out there, moving in this world with an understanding about the beauty and value of life that makes you stand out, and understanding that few people posses.

You’ve known these truths from a young age, they’ve always been a part of your life. As the parents, we arrived to those truths much later in life.

And you smile at life, enjoying every moment. You are stirring the people around you, helping them to see what you see, to know what you know. You are affecting people’s perceptions of disability as you advocate for your sibling, as you give them a voice when needed. You have willingly embraced this role… it humbles me, it brings me to tears.

You are moving those around you, and you will continue to do so.

As parents, we hope to make this place a better place for our kids. But as the siblings – with hearts so full of acceptance, compassion, an understanding of the value of life – you will go out into this world and change it. Not just for your siblings, but for all of us.

Thank you!

If you ever wonder who we look up to, it’s you. We could not be prouder or love you more fiercely.

This post originally appeared on EllenStumbo.com.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Little Girl Asked, ‘What Does He Have?’


Normally the question in the title of this post can set my blood to boil, cause me great annoyance or turn me into a crying mess.  But on this particular occasion, the answer seeker was a little girl about 9 years old, and that has never happened to me before.

We were at the splash pad (AGAIN!), and Owen and I were hanging out in the lazy river tossing a pebble back and forth. I was getting him to practice his “uhhhh ppppp” since he wanted me to throw the pebble high into the sky.

The pavement was quite hot that afternoon since the sun was shining brightly. This little girl came walking by and said how hot her feet were — “It feels like they’re on fire!”  I told her I felt the same way — it was very hot. She sat down next to me, asking if we’d ever come here before. I explained that this was one of our favorite places.

Owen tossed the pebble, and it hit me in the leg.  I said, “Ouch!” and he immediately signed, “Sorry, Mom.”  The little girl asked me, “What did he just do with his hands?” I told her that he was using sign language and what he had said. She waited a moment and quietly asked, “Is he deaf?” No, I replied. “Is he autistic?” No, again.

She waited another beat — “What does he have?” I told her he has Down syndrome. “I’ve never heard of that!” she said. So I asked her if she knew about DNA, to which she replied that they learned about it in health class last year. I said that a person’s DNA is made up of lots of things including chromosomes and explained that everyone gets 23 chromosomes from their mom and 23 chromosomes from their dad, which equals 46. People with Down syndrome have 1 extra chromosome, so they have 47.

She nodded her head — “What does that extra one do?” A shitload I thought! But instead I said that sometimes it can cause people to have trouble with their speech or that they might need some extra help in school or that they might need to see a few more doctors.

She thought about that, and then said probably one of the greatest things I’ve ever heard a little kid say: “Oh, so he’s just like everybody else then?”

Yes, sweet girl, he certainly is!

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This post originally appeared on The Sumulong 3: Our Family Journey Raising a Little Guy With Down Syndrome.

 

When a Woman Noticed My Daughter Because She Has Down Syndrome


It was a family affair. My family of five plus my in-laws went garage sale shopping. We found top notch walkie-talkies for $2, four Nintendo DS games for $10, an almost new set of Chaps suitcases for only $35, and many other great deals. And then there was the Mickey Mouse.

Mickey-Mouse

My youngest daughter has Down syndrome, and she happens to love Mickey Mouse. She was wearing a Minnie Mouse shirt that day, and Minnie Mouse shoes. Imagine her excitement when her big sister said, “Nichole, look! Mickey!”

In a basket, waiting to be loved, we found a Mickey Mouse.

Nichole picked up the mouse, hugged it tight.

“Do you like that Mickey sweetheart?” I asked.

“Yeth!” She said, hugging the toy a little tighter, smiling.

“How much do you want for the Mickey Mouse?” I asked the owner, who was smiling watching Nichole

“Well, let me go ask.”

She rounded the corner to go talk to her sister (they looked alike, I assume it was her sister).

“The cutest little girl with Down syndrome loves your Mickey Mouse,” she said. “She is wondering how much you want for it.”

The sister came to meet us, and asked Nichole, “Are you the little girl that loves my Mickey?”

“Yeth.” Nichole said.

“Mickey told me this morning that he was waiting for a very special girl to come and take him home.”

Then she put her hands around Nichole’s face and kissed the top of her head.

Nichole paid her back with a shy smile, and a “tenk-you.”

Then Nichole found a pink Mickey Mouse watch and showed it to her.

“Yes, you can have that too!”

Such a rascal!

I didn’t get to ask the woman what her connection was to Down syndrome, but that interaction (the way both sisters reacted to Nichole), makes me wonder if they had a personal connection. Perhaps they had a sibling with Down syndrome? Or an aunt? An uncle? They grew up with a neighbor who had Down syndrome?

Sometimes people stare at my daughter because she has Down syndrome, sometimes I can tell by the way they look at her that they feel pity, but not this time, and not this woman and her sister. There was a genuine appreciation of my daughter because of her extra chromosome, like they knew what a blessing she is to our family and everyone else around her.

Back in the car, Nichole held her Mickey Mouse close, and they have been buddies ever since.

This post originally appeared on EllenStumbo.com.

child with down syndrome learns to ride a strider bike

Specially-Made Bikes Help Kids With Down Syndrome Learn How to Ride


Introducing: the strider bike, a bike without pedals designed to improve balance and coordination. At a summer camp at The College of St. Scholastica, they’re being used to teach kids with Down syndrome how to ride bikes.

“Kids with Down syndrome are just like any other kids,” one camper’s dad, Steven L. Halverson told WDIO.com. “They enjoy Frozen. They enjoy biking. They enjoy being outside.”

Physical therapy Assistant Professor Karen Swanson runs the program. Along with Halverson, she’s part of “Down Up North,” a group for parents and families of individuals with Down syndrome.

See the strider bikes in action below:

'What Are You Going to Do When He Grows Up?'


“What are you going to do when he grows up?”

That’s the question posed to you for the last 20 years. And although you’ve given one  infant with down syndrome answer or another, time after time, it still feels as if this moment has snuck up on you.

Remember the day you found out you were pregnant? You knew then that this child was going to be the rest of your life. And it didn’t scare you. Not like it should have. Youth is invincible.

Then when he was born and you tried to figure out what Down syndrome is and what it means, how to prepare you and him for the world and how to find support in the community. So you went to a support group for special needs children. That turned out to be kind of a mistake. You were still smitten with your beautiful boy when you walked into a room full of anger. Bitterness at the schools. Frustration with insurance and government red-tape. Fear filled you. Was this your future? Were you going to brim with rage?

Yes. At times you were. You fought and reasoned and tried to reason and fought with the public schools for his first five years of life. Good teachers, good opportunities turned against you. Sigh. But then you found a private school that nurtured him, really wanted the best for him. They were growing and learning too — that made the match better, stronger. Not mired in predispositions.

So you made it,

made it through heart surgery, pneumonia, the H1 Virus. Soon enough he showed a passion for theatre, love of music and performance and hotels. You love to explore new cities and he loves hotels.

Then, when he got obviously old enough that you could no longer take him to the ladies bathroom with you, you dreaded letting him go alone into the men’s room in a strange city, strange airport, strange theater. Each time you wait, and wait and wait – hoping he will wash his hands, that he can work his pants himself, that no one will harm him.

And yet, there are times he comes out to tell you “the man helped me.” With the sink, with the paper towels, with the door. Never a concern on his face. Never a problem breathed. And you sigh. And thank God he has the bladder of a camel so you can plan for bathroom breaks hours apart and arrange for safe places or ways to find “family bathrooms.” Which he hates, by the way, but you insist.

Other than the school to some extent, you’ve kept your family an island.  You’ve worked and he’s joined you. You’ve coun marcusgraduates ted on his youth and innocence to protect you from… what? From the future?

Well here comes graduation day,

barreling down like you never knew it was coming. The two-minute warning bell and you’re standing without your homework, without your research paper, without a map to class. Even when Marcus was born, with nine months to prepare, you had exactly two packs of blankets, a bassinet and some newborn pajamas. You weren’t really ready then either, but everything worked out.

Tomorrow he is a “grown-up.”

What are you going to do?

Well, I guess you’ll do the same thing you did yesterday. Ask if he had breakfast and remind him to take his thyroid medicine. Drive him to work and smile when he comes back to the car humming a happy tune. Argue with him over which radio station to play in the car and how loud. Look into the acting classes you heard about and keep trying to find a voice coach.

You’ll try not to panic when you read about early onset Alzheimer’s, and you’ll make sure he takes his vitamins and goes to his workouts at the gym.

You’ll smile when he tells the frazzled server at the restaurant, “You’re the best,” and she stops for a minute, smiles and says, “Thank you.”

You’ll laugh every day.

You’ll know you are loved.

You’ll wonder what you were so worried about.

This post originally appeared on MardraSikora.com.

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Big Sister’s Drawings Help Others See the Beauty in Down Syndrome


When Hayley Goleniowska’s youngest daughter, Natty, was diagnosed with Down syndrome, Goleniowska and her husband, Bob, thought first of their oldest daughter, Mia. How would they explain Natty’s delays to a 2-year-old? They started searching for sibling support books, but mostly came up short. So, they figured they would just write their own.

The couple had no idea what form the book would take — until they began finding drawings and notes Mia, then 7, had been leaving around the house in Cornwall, England. One read, “I love you Natty and you are the best sister in the world and so precious to me. You are so important to me and if you weren’t in this world my life wouldn’t be the same.” They began collecting the notes and drawings. This, they thought, would be their book. They’d call it, “I Love You, Natty.”

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Now, three years later, “I Love You, Natty” is available to order online. It combines Mia’s drawings and notes with family photos, her parents’ insight and her answers to questions her mother would ask her (i.e. How did you feel when Natty went in for heart surgery?).

“When Natty was born I worried a lot about the impact on Mia, but I was wrong. Mia is the most thoughtful, sensitive and accepting 10-year-old I know, with an enormous sense of right and wrong,” Hayley Goleniowska told The Mighty in an email. “She is who she is in part because of her sister, not in spite of her.”

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Goleniowska, who also runs the popular blog, “Downs Side Up,” hopes that everyone who reads this book will learn that siblings will not be badly affected by a brother or sister with Down syndrome.

“Everything will be OK. That there will be challenges and hurdles and worries but plenty of love and laughter,” Goleniowska told The Mighty. “Life will carry on much as it did before, only a little bit better.”

Go here to purchase a copy of “I Love You Natty: A Sibling’s Introduction to Down’s Syndrome.”

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

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