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“The Look” And What It Silently Says to Me From A Sibling Of A Child With Special Needs

Last week I got the opportunity to speak at career day at my daughter’s school.  I drag my big therapy ball, some thera-band and thera-putty, my anatomy coloring book, a baby doll, and other interesting goodies that I play with every day into the school every time I am asked to do this.  The “regular grown ups” (aka lawyers, mortgage brokers etc.) laugh kindly.

 Last week, I had 20 minutes to share what I felt was most important about the profession I love. And then I did it again 3 more times. 100 4th graders and me. I gab on and on about how Physical Therapy is repetitively listed as one of the “happiest” professions, how great the job outlook is in coming years, and what I love about my job. I share that interested students need to like sciences, can’t be repulsed by touching people, and need to enjoy social interaction with many kinds of people.  I am a total nerd, but I get misty eyed sharing about how I love the teaching part of my job and what a blessing it is to motivate parents who get such satisfaction and joy when they get to be the ones who teach their child to roll, crawl, or walk!

I’ve done this for years for elementary, middle, and high schoolers. Without a doubt, when I ask for questions at the end, I get the same ones every single time – no matter the age.

“Did you ever work with an NFL player, NBA player…Professional Wrestler?”

“What’s the grossest thing you have ever done?”

“How much do you get paid?”

“You dissected a real human in school? Ew. Were they alive or dead? Was there blood? Did you cry? Ew.”

As consistent as these questions are, I am always ready for them. And there’s another one that happens every time as well. Usually when we are almost out of time, a child will somewhat sheepishly raise a hand and when I call on them will ask…

“Have you ever worked with someone with Downs Syndrome?”

 

or

 

“Have you ever worked with someone with Cerebral Palsy?”

 

or

 

“Autism?”

 

No other comments. But none are needed. I get the look and I know. This is the sibling of a child with special needs. No words are needed because the look is enough.

The look says, “I know you get it.”

The look says, “Someone like you has been to my house every week and knows us.”

And, “You know how hard my family works for small things that people take for granted.”

And, “You know how sad it is for us when people make hurtful comments.”

And, “You know that I am often expected to be more patient that most kids my age, and that that isn’t easy, and sometimes I’m resentful, or wish for more attention, and jealous. And you know that I feel bad about that but I still can’t help it.  And you know that despite these sometimes “yucky” feelings, nothing makes me feel more proud than when my sibling overcomes and obstacle or learns something new…because they don’t do it alone…my whole family does.”

Career day is a joy. It’s a day that recharges me with excitement about my job and my calling in this world. But, the sibling “look” gets me every time. 

Sometimes I wonder if those kids can silently read my “look” back to them. If they can, I hope they read,

“You are brave. And strong. And important. Not just because of the kind of sibling you are, but because of who YOU are. All alone. As YOU.”

And I hope they hear, “What you are learning from your sibling experience is compassion, and empathy, and a patience, and an awareness, and gratitude greater than average people will ever even know. And it is a gift. And it will make you do great things in your life.”

And I hope they know, “Your parents love you for you. Not because of what you do to help but for who are you are. Are for the special gifts you yourself have.”

And finally, I hope my look back says, “I get it.” And even though I don’t know you, “I’m proud.”

I’ve spent a lot of time thinking about the kid that asked that question last week and the kids who have asked that same question in the years before.  April is a month dedicated to Autism Awareness, Child Abuse Prevention, Mesothelioma, Children’s Footwear Awareness, National Minority Health Month, and Genocide Awareness & Prevention among others.  All are so important.

But I’m here to say, let’s let every month be awareness of siblings with special needs month….awareness of their own special needs. 

How can you celebrate?

Do you know a sibling of a child with special medical or health care needs?

       Take them out for a special day celebrating just them..doing something they love and often can’t do.

       Better yet, volunteer to watch their sibling so their own parent can do the same.

       Make a donation to the many camps that offer attention and love to these super siblings so that a child can attend. Financial costs are often a struggle for families. Sharing your resources to help a sibling attend camp, or play a sport would be a gift!

       Simply be aware of the challenges with families you know or don’t know. Offer help if you feel comfortable. Offer a smile. A “we are all in this together” wink. All can go a long way.

       Teach your child compassion and friendship by modeling it. Siblings of children with special needs have their own special needs – quality friendship is one!

 

Do you have a child with special medical or developmental needs? How do you feel their siblings are best supported? What are their needs? Join our conversation!

 

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Scissors, Glue sticks, & Smiles

It’s mid-January and today it dawned on me. The trees and trimmings have been down for weeks..and I need to take down the MANY Christmas cards that I have hung on the door to our basement. One of my favorite things about the holidays is running (or having my girls run) to the mailbox and excitedly opening each card. We love, love, love  looking at each one. We enjoy familiar faces of friends and family that live close by. We comment about how much those who live far away have grown or changed. And I personally love sharing stories with my girls of the faces they don’t know well…

“These are the children of my best friend from Kindergarten.”

 

“This was Mommy’s college roommate.  We drank alot of coffee (among other things) together.”

 

Even…”This was Mia’s (our beloved (and deceased) dog) best friend’s family.”

 

 

Yes, we keep in touch with many people who have touched our lives for many years. And despite the fact that I “see” their lives through Face book, these cards are my favorite. Call me old fashioned, but I love and appreciate stationary and snail mail greatly.

So, when I take them down each year, I cut them into small portions (with darling faces still visible) and glue them into a collage. This is pretty basic…just me, the scissors, paper,  and a glue stick I dig out from the closest back pack, but I love doing it. (It reminds me of my old junior high scrapbooks..the ones with cut out phrases from Teen Beat. Anyone else do that?). I digress. But tonight, when smiling and glueing, my nephew came beside me and asked, “Whatcha doin’ Auntie Cole?” I explained what I was doing and why I did it each year.  He was quiet for a moment. And then commented,

“It’s like they are all ONE BIG FAMILY now.”

 

 

I smiled bigger. Amen buddy. They are. Our one big family that has touched our lives from the time we ourselves were babies until we had our own babies. Our friends and family who are the village that raises our children by our sides and our parent’s village that helped raise us. In a world that seems more polarizing and more argumentative each day, I choose to smile big and think of us the way my smart and kind nephew does…like one big family.

So, when you complain about the cost and labor of sending Christmas cards next year and grumble under your breath, “they are just going to throw them away,” (I have done the same), rest assured that you too may have a former elementary school friend, college roommate, or friend from the dog park, that is a nerd like me and savors your picture or those of your children and lovingly pieces them together every year in January…so she can see her “one big family” all together, even if it’s only on an old school scrap books page.  And have peace in knowing you have made her heart warm and smile big.

“We’ll be Friends Forever, won’t we, Pooh?’ asked Piglet.
Even longer,’ Pooh answered.” 
― A.A. MilneWinnie-the-Pooh