Category: Special Needs

Process vs Outcome. Which brings joy?

Recently, I posted a photo on Facebook of my twelve-year-old granddaughter making cupcakes. She has cerebral palsy and so it requires some special accommodation to cook with her. We’ve been cooking together now, for many years.

It’s also coming up on April 2, which is my oldest daughter’s birthday. That recalled to my mind a memory which I wrote about and want to share because the message is timeless and priceless as it applies to creating a relationship with our children and in allowing us to enjoy working and playing with them. Enjoy!

3-18-2010
Three of my grandchildren live just a couple of blocks away. Maggie is almost four and Jack just turned two. Mary is brand new. Maggie has cerebral palsy. Working her arms and legs is a real challenge. These children belong to my oldest daughter, Jodie. Today is her birthday. I had planned to make her a cake and then decided to have Jack and Maggie help me.

My intention was to allow them to experience new things, really help make a cake, and have a lot of fun. I knew that there would be a huge mess, something unexpected might happen and I would be worn out when we were through. That knowledge has come from working with hundreds of children, of all ages.

Because of Maggie’s condition she has a special chair. It isn’t high enough to reach the table, so I put her and the chair on the table. Jack, of course, took his position on one of the kitchen chairs.

I opened the cake mix and allowed each one to pour half of the contents into the bowl. Some made its way to the table top and some to the floor. Next, I filled three measuring cups with liquid, 1 cup water, ¼ cup water, and 1/3 cup water. I helped Maggie get hold of the large cup and pour it into the bowl.

Because this isn’t the first time that I’ve cooked with them I wanted to see if Jack could pour the cup himself so I said, “Pour it in Jack.” He took hold of the 1/3 cup and gently tipped it to one side, onto the table. Ok…he still needs help. So, we tried again with my help.

Next came the eggs. I showed Jack and Maggie how to break one and get the contents out. Woohoo!! Whacking eggs suited Jack just fine. He gave it a whack and voila! egg all over the table. Not to worry. We just picked out the eggshells and scraped the egg into the bowl. Good thing we started with a clean table.

Next, I helped Maggie get hold of her egg and smack it against the cup edge. That was necessary to make it pliable enough for her to squeeze out the contents, and squeeze she did. Some was dripping down the front of her shirt, there was a small stream running down her knee and the rest was oozing out her fingers. We did get all the egg out of the shell, the shell pried out of her little fist and hands wiped clean. Whew!

My sister had come to visit just as we began and was observing what we were doing. As I got a cloth to wipe up the egg mess, Maggie, who was just desperate to “do it herself”, reached down and plunged her arm into the batter. I turned around at that same moment. It was perfect. I took hold of the bowl and said, “Stir Maggie, stir.” She really had a tremendous time stirring that batter. It’s very difficult for her to hold a spoon and when she does, I have to help her. For a 4-year-old that’s so lame. But stirring on your own, now that’s living! I would never have come up with the solution she found. I glad my sister was there because she was able to video that small moment of magnificent success and joy for Maggie. You can see Maggie stir the cake here.

Of course, being unable to control her limbs, her hand and arm went in and out of the batter a couple of times, so we had cake mix on her, Jack and the table. Not to worry, there was enough left to bake!

I put the bowl on the mixer and turned it to stir. Watching them learn to cook was fun. Each time I accelerated the mixer the change in sound would make Maggie jump. She’s very sensitive to sound. I would pat her knee and say, “It’s OK Maggie.” After a few times, Jack reached over, patted her little knee with his smaller hand, and said, “It’s loud.”

Soon the cake was in the oven, all hands were wiped, and the table cleaned. Then I put on Winnie the Pooh and made the frosting myself.

When the cakes were cooled, I invited the kids back in and we got to work. Maggie, like any 4-year-old, wanted to lick the beater. I gave her the rubber spatula instead. She held it in place on her knee, bent her head down low (ah, the flexibility of children) and got busy. For the next half hour, we didn’t see her face once, but we heard lots of smacks and slurps. She cleaned that spatula.

While I was frosting the cake and Maggie was smacking her lips on the spatula, Jack was sucking frosting out of the decorating bag. It was a grand sight, grandma letting her little friends experience new and enjoyable things. There was no nagging about being neat, quiet or being patient. We just did our thing however it happened to happen.

The cake turned out great and I suspect, despite the fact that it didn’t get its full measure of egg, it will taste just fine. On the way home, Jack almost fell asleep. He was totally worn out from a fabulous day at grandma’s house. Maggie cried because she knew we were going home, and it’s so much fun at grandmas!

I shared this cake baking experience with you because there are some important things that I want to point out that will help many of you.

1. When you work with children, no matter the age, your intent, and your expectation really do matter.
This experience with my grandchildren would have been very different if I had worried about keeping my kitchen clean or making sure that everything was in order and done a certain way or trying to keep clothing clean. It wouldn’t have been as much fun if I had said, “Don’t be so messy”, “Don’t spill”, or “Look at your clothes”. You know what I mean. We all do it. That’s because our expectation is that it will be a well-run project, go smoothly, and the end product will be perfect.

2. As we begin to feel the tiredness that comes from working on a project with children, we can begin to feel impatient, frustrated, and possibly, even angry. That’s because we expected to have this perfect time with our kids and it wasn’t perfect, at least not in our eyes.

But let’s think about that. When we work with children whose eyes matter, whose interpretation of what should happen matters. I’ve learned that for most children it isn’t the result that they care about, it’s the process. They like doing. They like experimenting. Sometimes things don’t turn out, cookies are crumbly, plaster of paris is runny, paint is too thick, etc. It doesn’t matter to kids.

3. Is the project, chores or activity about me or the kids? For decades I would go to my children’s school and help children make gingerbread houses. I was VERY well organized, so it was a smooth project. I could help 25-30 kids by myself. But I’m going to be honest here. It went so smoothly because the project was about me and not about the children.

When I first started it mattered to me how the houses looked when they were done. I knew they were going home, and I wanted those parents to be amazed, to see what a great teacher I was. So, when the kids were doing their thing I would go around and make sure that the entire milk carton was covered and that candies were evenly spread on the house. In short, I meddled with everyone’s creation.

As I got older and wiser, I stopped doing that. I made it about the children! I learned that kids don’t always care if the milk carton shows. Sometimes all the candy will be on one side of the roof and nowhere else. I learned that not everyone wants icicles that look like icicles. Some kids would rather do it themselves even if they are just bumps on the side of the house. And you know what; I’ve never talked to a parent yet who didn’t think their child’s house was great, no matter what it looked like.

I suspect that is true for a lot of you if you’re honest. It’s your expectations you think about. It’s your outcome that matters. It isn’t about just being with your kids and letting them learn and enjoy. Be honest.

4. When we’re honest we will approach projects and activities with a different set of expectations and a very different intent.

5. If being Present with our children is our ultimate goal, whether we’re playing, doing chores, homework, or any other activity, we will have a better result.

6. When we’re Present we’re better able to remember this huge difference in adults and children: adults are project driven and kids are process driven.

As we adjust our expectations to include these differences it will increase our enjoyment in working, playing and being with our children.

Your shares are the best compliment! : ) 

 

Special Needs – The Other End of the Stick

Five years ago I became my granddaughter Maggie’s aid at school.

Maggie has severe Cerebral Palsy. She is non-verbal, can’t walk, has to be fed and changed, and has minimal control of her hands and arms. But she is so bright. I went to school with her to help her brilliance shine.

I held her hand while she wrote. I put math on a white board so she could write an answer. I moved her from one place to another so she could participate in all that went on in school. I showed the other children how they could talk to Maggie and be her friend. I showed adults how to interact and how to be absolutely amazed at her remarkable spirit. I advocated for Maggie. It was a gift to me.

It was also challenging.  It was a challenge moving a seven-year-old from place to place, lifting, holding and carrying. I was tired! Sometimes I thought, “I can’t stand to explain to one more person why Maggie can’t talk or walk, or do all that we take for granted.”

But then I would recall the words of a wise woman, Maggie’s mother, and I would smile and help one more person understand how to be a friend to the most joyous person I know, Maggie Palmer. Maggie is now twelve years old but the words of her mother, a We Sherpa, are as true now as there were five years ago when I was Maggie’s aid at school.

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 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/her. Should I ask what was wrong with him? Should I talk to her, or should I talk to her caregiver? Should I 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, and I felt stupid. I have a lot of compassion for “them.”

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. 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.

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

Love,
TheJoyfulPalmers (Jodie)

I appreciate my daughter’s words of wisdom. They move me and I have been learning to We Sherpa right along with her and Maggie. It isn’t always easy but it is preferable to feeling like the world is “us” against “them.” If you know someone with a special needs child please share this article with them. If you know someone without a special needs child it might be even more important to share. It might help both along their own rocky path.

You might also enjoy an example of how Jodie and Maggie We Sherpa. Jodie, Maggie and friends made this video to introduce Maggie to any new groups of kids. They used it both in church and school. It will inspire you. “My New Friend Maggie.”

Jodie is the mother of four children, ages 5, 8, 10, and 12. 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 and a personal student mentor. Jodie’s secret wish is to ride cross-country on a motorcycle in black leather pants.

Your ‘shares’ are the best compliment. Thank you!