Special Needs – The Other End of the Stick

by Mary Ann on February 15, 2014


The Joyous Maggie Palmer

The Joyous Maggie Palmer

We Sherpa’s and Special Needs


I have had a major shift in my life as far as how I spend my time. I began going to grade school with my grandaughter Maggie, the first of January. I am her aide three days a week so that she can go to school. Maggie is non-verbal, doesn’t walk, has to be fed and changed, and has minimal control of her hands and arms. But she is so bright. So I go to school with her to help her brilliance shine. I hold her hand while she writes. I put math on a white board so she can write an answer. I move her from one place to another so she can participate in all that goes on in school. I show the other children how they can talk to Maggie and be her friend. I show adults how to interact and how to be absolutely amazed at her remarkable spirit. I advocate for her. It has been such a pleasure and a gift to me.

It has been also been challenging. Getting up every day and having to be somewhere by 9am is a new expereince for this seasoned entrepreneur. Coming home sometime after 4pm is also new. It can be a challenge moving a seven year old from place to place, lifting, holding and carrying. I am tired! Sometimes I think I can’t stand to explain to one more person why she can’t talk or walk, or do all that we take for granted, on her own.

But then I recall the words of a wise woman, Maggie’s mother, and I smile and help one more person understand how to be a friend to the most joyous person I know, Maggie Palmer. We can all be We Sherpa‘s. Based on our own challenges and the Mount Everest we have climbed we can reach out and carry someone’s heavy load. May we all be We Sherpa‘s.

What is a We Sherpa and how does it apply to Special Needs

Hi. I’m Maggie’s mom. Maggie is 7 and has severe cerebral palsy. Last year I had a first hurt. I found a picture on Facebook of all Maggie’s friends at a birthday party she hadn’t been invited to. Cry!As parents with special needs kids we come to these new layers of grieving over and over again, don’t we?Sometimes the depth of my grief over what seems to be a pebble in “the road of life with a special needs child” surprises me. How could stepping on such a little thing hurt so badly? I shake my head in wonder as the tears flow.Just the other day one of Maggie’s little next-door friends said to me, in her frustration of not being able to play with Maggie in ways that she wanted to, “I wish Maggie didn’t have cerebral palsy.” Her comment sucked the air out of my lungs, and I was speechless. What should I think about this, about her? I didn’t know.We’ve always homeschooled Maggie. Next week she’ll be going to public school for the first time in her life. In fact, she’ll go to a school that has never had a child with her sort of disability. I’m expecting that we’ll be stepping on lots of those painful little pebbles at this section of our journey. Maybe there will be some rocks I crack my shins against, or a boulder that crushes me.For this reason I’ve been considering this strange land we all have to tread when the “typical” and the “special” intersect.There was a time when I was one of “them” and lived in the “typical world”—when I didn’t have a special needs child, when I didn’t even know any special needs people. If I crossed the path of someone different I stared, I stumbled, I felt unsure and didn’t know what the heck to do with him. Should I ask what was wrong with him? Should I talk to her, or should I talk to her caregiver? Should I just pretend that I didn’t notice anything different? What would be the wrong thing to say? What if I couldn’t understand what he said back to me? Might they hurt me? Might I hurt them? Could I catch what they had? I felt afraid, I felt awkward, I felt stupid.

I have a lot of compassion for “them.”


We Serpa’s carry the heaviest load

As we prepare to enter this place of intersection in earnest, I’ve come to the conclusion that Maggie and I are going to be We Sherpa‘s. What’s a We Sherpa, you ask?

A Sherpa has come to be known as someone who guides another along a challenging journey. A Sherpa takes upon themselves the heaviest burdens of the expedition. A Sherpa understands their traveling companion may be inexperienced, awkward, and fearful as they walk through territory that is not their native country, and they are patient with that.

The “We” part of the equation is a conscious decision about how we are going to walk in this world. A world of only “us” (those who get it) and “them,” (those who don’t) is really only a world of ME. The “We” means we’re going to leave the path of ME, and walk the path of WE.

When it comes to people’s insensitivities, or ignorance about our special kids, here’s why choosing to be a We Sherpa matters so much.

If we want inclusion and compassion for our children, we have to be willing to pick up the other end of that stick.

When someone speaks insensitively or ignorantly, when they stare, when they don’t include, or worse, exclude, the We Sherpa simply sees them as a traveler who needs a guide to help them walk this uncharted territory. The We Sherpa bears the larger burden of reaching out, of inviting, of educating, of creating opportunity, of giving the benefit of the doubt, and of forgiving. The We Sherpa puts an arm around their shoulder and invites them onto the path. They may decline. And, for those who accept there will be the inevitable stepping on toes as we learn to walk together. We Sherpa’s accept that.

Seth Godin said it best. “The easiest thing is to react. The second easiest is to respond. But the hardest thing is to initiate.”

I’ll keep having these painful “firsts.” And, I’m learning to own my own grief. But, I’m going to choose to walk a path of WE.

When someone clumsily stumbles into us with insensitivity or ignorance, Maggie and I are going to scoot over, invite them to walk with us, and help them over the rocky places of fear, awkwardness, and unfamiliarity.

It’s true. We’re better, together.

By the way, if you’d like to see our latest effort to We Sherpa, check out Maggie’s introductory video on YouTube by searching “My New Friend Maggie.”

Blessings to all of us who tread this challenging path. May your grief be comforted, and the rocky way smoothed.


special needs
The Seven Paths: Changing One’s Way of Walking in the World | ANASAZI Marketplace


Please leave a comment and if you know someone with a special needs child please share this with them.

jodie best closeup

Jodie is the mother of four children, ages 1, 3, 5, and 7. Her oldest daughter, Maggie, has severe cerebral palsy. Although her energies are focused on the busy season of raising a young family, she is also a writer, teacher, mentor and coach. She has spent many years helping parents create their own unique vision, master plan and custom made systems for the education of their family. She is also the past president of the Midwives College of Utah and currently serves as a member of their board of directors. Jodie’s secret wish is to ride cross-country on a motorcycle in black leather pants.

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{ 2 comments… read them below or add one }

Randi Felshaw February 15, 2014 at 2:58 pm

I appreciated this article. Paul and I don’t have physical kids, but there are the ones inside. Over and over again I hear about how much they want to have friends and learn how to play. It’s quite frustrating. We also have to We Sherpa each other on our journey. Two adults with significant disabilities trying to find our way in a sometimes very insensitive world. I have always been an advocate, but now even more so. Do you notice that in the winter time more drivers park illegally in handicap parking spaces? My dear husband is still trying to find full time work with benefits. It’s been at least two years since he has been looking. He has a Master’s degree and plenty of experience/skills. Unfortunately, many employers only see the Cerebral Palsy and don’t even give him a chance. They seem to get afraid of ‘something’….healthcare, customer interaction….hmmm. Anyway, from one We Sherpa to another….move on and up.


Melissa February 16, 2014 at 8:41 pm

You are 3 beautiful people!!! Thanks for sharing this inspiring article and Maggie’s new adventure! My best wishes to each of you :).


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