Category: Special Needs

Serving and Receiving – Two Sides of the Same Coin

Let me tell you a moving story about my grandpa. My grandmother had passed away, and my grandfather who was in his late eighties, was living with his daughter and fading. I visited him and he was happy to see me. We talked for a while and then I visited with my Aunt Carol Lynn.

Later, I made a trip down the hall to the bathroom. As I got close to the door of the room where my grandpa slept, I heard him crying. I stepped in, laid on the bed beside him, and asked, “Grandpa, what’s the matter?” He looked at me with tear-filled eyes and replied, “Time goes by so fast, I can’t catch it.” Grandpa told me how grateful he was for his life and family, how much the time with them had meant to him. He talked about those he had served and those who had served him. Hence the tears, it was all going by so fast.

His answer surprised me because I always thought that as you grow older time would slow down. Now, I’m almost 75 and I know the truth of his words. I never suspected this when I was young. You can’t know until you get there! This story of my grandfather reminds me of two great gifts life offers, serving and receiving.

In 2012, because of an experience, I decided to be more open to receiving help from others. Trust me when I say my progress has been slow! I’ve always prided myself on my independence, ingenuity, and ability to do whatever needs to be done. I have always felt confident in “doing it myself.” However, it’s a challenge to do everything by yourself, all the time, and you miss out on the other side of the coin, the value that comes from receiving. I’ve had to learn this the hard way.

My inspiration to work on allowing others to share in my burdens came because of two people in my life that I loved, both with significant special needs. One was my unofficially adopted daughter, Michelle, in her thirties, and my granddaughter, Maggie. They both had cerebral palsy. Here is their story and how it affected me.

Two Girls Who Understood Both Sides of the Coin

For my adopted daughter, Michelle, time, and her condition took their toll. She was in a wheelchair, had lost many of her former abilities, and lived in a nursing home. She needed help with most daily activities. She passed away a few years ago and has been missed. Maggie, my granddaughter, who is eighteen, was six in 2012. Maggie can’t use her legs and using her hands is a challenge. She cannot feed herself and does not speak. My special needs girls could do virtually nothing on their own.

At Christmastime I had the privilege of spending a full day with Michelle, in the nursing home, helping her make her Christmas presents. With help, Michelle frosted and decorated the cookies and cupcakes I had baked. I held the item and turned it slowly while she did the frosting. Then I would hold and turn it while she sprinkled the decorations. We then bagged the items.

She made a couple of pies for special friends. Michelle did her best to roll out the pie dough, but pressure was an issue. So, I helped her press down while she rolled. Then I assisted her in grabbing hold of the circle of dough and plopping it into the pan. I cut off the excess and Michelle crimped the edges. We baked them in the nursing home oven. She painted pictures for others. I got water, handed her brushes, and turned the paper to the correct angle periodically.

When Michelle gave out her presents on Christmas Eve and Christmas Day she was pleased. She commented to everyone that she had made them all by herself and was proud. She felt the full joy of having done this project. My helping had not diminished her joy or made her feel less than.

I had observed these same feelings while working with Maggie when she was 6 and now when she is eighteen. It doesn’t seem to matter how much help she needs, when it’s done it belongs to her. She takes complete pride and ownership in a job well done. Both Maggie and Michelle love doing it ‘all by themselves.’

I found myself judging this behavior to some degree, back then. After all, they hadn’t really done it all by themselves. All the while, despite my love for these girls, I was massaging my own pride in my many accomplishments and my ability to be so independent. What I had yet to learn was that help from others doesn’t diminish our part or our success in the result. These two beautiful souls understood both sides of the coin perfectly!

Later, as we entered the new year, 2013, I thought deeply about that holiday season and a scripture came to my mind. “Are we not all beggars”? Mo 4:19 Do we not all need a great deal of help every day to both receive and give good gifts to those around us; serving and receiving – two gifts that go hand in hand. Are we not all beggars? I decided then to practice receiving. As I said, it’s been a journey and not an easy one.

As we enter the new year, it’s valuable to stop and evaluate our lives, the opportunity to raise wonderful families and serve others, neighbors, friends, family, and strangers. But we also need to contemplate the value and necessity of receiving from those same people, our family, neighbors, friends, and sometimes strangers. We can lift, teach, and help, but we can also be taught, served, and have our burdens lightened as long we are open to both gifts – serving and receiving.

For behold, are we not all beggars? Do we not all depend upon the same Being, even God, for all the substance which we have…Mo 4:19 Receiving help in any form is not a sign of weakness, it’s a sign of our humanness and an acknowledgment that serving and receiving are two sides of the same blessed coin.

A Real Life Example

As I finalize this message, it is the last day of January 2025. Yesterday, I came face to face with what I have shared with you today. Since August of 2024, I have had some medical issues. I had an appointment in May, but the situation required help sooner. Next week I will be seeing the specialist. My daughter planned to go with me because I need an advocate, so I am listened to and not seen as just another old lady. However, when we took the only earlier appointment they had, it was a date when Jodie was not available. What to do?

I want you to know this wasn’t the article I planned for today. I had worked on a different article earlier in the week. However, on Thursday, as I sat at the computer and looked at the articles I felt drawn to this piece. I read it and decided to use it. That evening my youngest sister stopped by with two of her grands. They wanted a picture with my mom, the great-grandmother. It came out Jodie couldn’t be with me at my appointment. Nanette said, “Hey, I’ll drive down and go with you. I want that doctor to know you’re a writer, smart, and totally organized!” Then she gave me a big smile.

My immediate reaction was to say, “No, you can’t. You live over an hour away. That’s more than two hours on the road. I’ll be Ok.” My sister replied that she would make a trip out of it. One of her sons and his family live just twenty minutes from me, in fact, in the town where the doctor’s appointment is. I was again going to protest. This was my younger sister and I am fully capable of going alone, asking questions, and advocating for myself. Then I had a thought, “Mary Ann, isn’t it interesting that this is the article you chose to work on for this Sunday?” That took me by surprise. I knew I had been reminded of the goal set back in 2012. Needless to say, Nanette is coming and will be helping me out at this important appointment.

This may be something you need to work on, as I have had to. There’s no glory in doing everything by yourself. There is only a heavier burden and oftentimes, loneliness, as you struggle on. It’s a choice! Learn to receive as well as serve. This is a practice, and you can learn to do it with grace, as did my beautiful girls.

It will bless you, your family, those you serve, and those whom you

allow to serve you.

Choose The Scenic Route

I have the privilege of having a granddaughter with severe cerebral palsy. Whenever anyone finds out they always respond with, “Oh, I am so sorry.” They don’t need to be sorry. Maggie is one of the happiest human beings I know. Her mother loves her and magnificently cares for her. I have the privilege of living in a four-generation home and I see what having a special needs child can entail. There is no getting around how challenging it is, but there is also no getting around how rewarding it can be, how you are changed and privileged to grow.

I have a dear friend who has special needs and is a brittle diabetic to boot. She and I go to our temple once a month. I have had to learn how to manage if she has a diabetic episode and that has worked out well. I have had to learn how to help her when I take her shopping because, although she is 54, she shops like a ten-year-old. Not one large container of kitty litter but four, because you don’t want to run out. : )

Michelle usually stops at my home once a week when she walks her dog, Max, in winter, or summer. It’s fun having the mini-conversations that occur, while constantly telling Max to sit. : ) I have had her in my home teaching her to make treats that are wheat and sugar-free. My husband is a diabetic, so I have had lots of experience. I have taught her to make ice cream bars, cheese crisps, and granola, to name a few. Again, it has been rewarding and I have changed and grown just knowing and serving, Michelle.

I had a friend years ago who had six children and will remain anonymous, per her request. Their special needs ranged from autism to dyslexia. From anxiety to cerebral palsy. From nut allergies to regular growing-up issues. She said, “Being the mother of special needs children is an honor and a privilege. The blessings that have come to our family cannot compare to anything else. We are blessed to see life through a unique perspective.”

Life is Full of Difficulties and Challenges for Every Family, Special Needs or Not.

My friend often said when you are working and teaching children with special needs you need to learn to think outside the box, inspire in simple ways, and continually re-group and re-focus your efforts. This is true. I have watched Jodie learn to do this. I saw Michelle’s mom doing it. And I had to do it with my seven children. This mom called it taking the ‘scenic route’, when you find joy and beauty despite the difficulties you encounter along the way.

Most of you who read my articles have children without special needs, at least not the kind I have referenced above. However, is there any child who doesn’t have special needs? Is there any time we don’t have to re-group as each child grows and changes how they think and feel? Parenting is all about thinking outside the box, inspiring in simple ways so that individual children can move forward to their destinies, and re-grouping and re-focusing as we go along. It can feel intimidating, but with prayer, thoughtful pondering, and eyes that see, it can be done.

Practice Out of the Box Thinking

My friend who made the above comment told me she always felt like an out-of-the-box sort of girl. Once, she told her mom while doing chores differently than her mom had taught her, “There is more than one way to skin a cat.” While raising her children with all their special needs, she realized how powerful this way of thinking was for her. She had to think out of the box. She had to let go of the sucker’s choice and seek the third option. She had to look for what was needed, not what was considered normal or expected.

My daughter Jodie and Michelle’s mother had to let go of the idea that everyone learns the same, needs to understand the same information, and needs to BE a certain way in the world. I’ll bet you have kiddos who are square pegs trying to fit into round holes.

My dad believed there was only one way to do a thing. Being obedient, I did it his way. But when I left home the world opened for me and I began making different choices than my peers. I didn’t always fit in. I worried I would miss out, and be shunned, but I wasn’t. Learning to think out of the box, and it took time, has made a world of difference in my life!

Begin thinking outside of the box and helping your children do the same. It isn’t comfortable. I am a bit controlling like my dad. When my grands mow the lawn, do their laundry, or make food I want to tell them to do it my way. That is the best way. But I DON”T. I know that as they learn to think out of the box they will fare better in the world.

Every Family Has a Mission

Every family and every child has potential. When Maggie was small it was assumed that her mental age was moving along as it should. Jodie was looking for ways to help her so that she could eventually go to college.

When it became clear that Maggie’s mental age did not match her chronological age it felt deflating. What could Maggie do with her life? Well, here is what she has done. With minimal hand movement, she has learned to use her iPad better than I can. With a controller, she can manage the TV. I don’t even know how to work their TV. And with these skills, she has learned to ‘speak’ with her iPad. She says wise and funny things. After I used the lift for the first time she said, “Grandma did good.”

She was in her high school talent show two years in a row, telling her favorite jokes to a standing ovation. She makes videos for her friends and our family. She brings joy to our hearts. There is nothing like having a bad day and going to the family video site to see Maggie laughing and sharing her favorite joke, or telling someone she is sorry they are sick or struggling. Her mission is magnificent – to bring joy into the lives of those around her; and to bring hope to those who are struggling and think they can’t go on. They look to Maggie and know they can.

I live with three other grands, and I have lived with them since they were toddlers. They are now all teens. There have been times when we have wondered what would become of that unruly child, that messy child, that child getting the D’s. But they are blossoming because their parents know that every child and every family has a mission.

When you know this there is room for failure. There is room for stupidity. There is room for tantrums. There is room to grow and change. There is room for unconditional love despite your worries, fears, and sometimes anger, at the process a child or your family may be in.

Be Patient with The Season You Are In

When hard things come into your family learn to stop and breathe. Take a moment to evaluate the season of life you are in. Be patient with yourself and allow the season to run its course. Take having a new baby for example or when your first child enters puberty. And what if you go to work? Be patient with the season.

Keep Learning

My friend shared another interesting thing with me. “I am learning something important about myself. I find that chaos ensues, and peace is threatened when I don’t make my own study a priority. You can’t fill your children’s cups when yours is empty. No matter the twists and turns life throws me, I have to make a priority. I have to keep reading my personal canon, which includes scriptures and other important works. When I allow myself to forget this principle then chaos takes over.”

This is true for any person or family. Doesn’t this make you think of the article I shared last week – Read, Learn and Bless Your Family

Understand That Family is about Creation

Plant your feet and bloom where you are planted. I heard my grandmother say this, as did my mother. I didn’t get it then because I wanted life the way I wanted it to be. But now, at 74, living in a four-generation home, giving full-time care to two adults, and helping with my special needs granddaughter, I think I understand what it means. LOL

I believe this statement has great application to our lives and the health and well-being of our families and children. We need to trust ourselves and believe we can know what our children and family need. That what we lack can be learned and practiced. We need to let go of looking over the proverbial back fence to see how we compare to our neighbors. Social media has made this a challenge. It doesn’t matter what your neighbor is doing in their backyard. The goal should be to create a backyard that works for your family’s needs. When you do this, it will be unique, because your family and its make-up are unique. This is true for special needs families, and it is true for all the families we think of as ‘normal.’

Life is constantly changing. Children with special needs have medical issues and new challenges. Families with toddlers move from that place to the world of childhood, preteen, and finally the teen years. Parents lose jobs or get one for the first time. Families move. Systems become outdated and need to be revamped. Nothing stays the same and how we manage must change with our family. Hence the need for that out-of-the-box thinking.

As my wise friend said, “This means that we often find ourselves standing on new ground. So…we plant our feet, and bloom in the fertile soil of that season of life until that season is over, and we find ourselves on a new plot of land. It’s all about attitude and enduring to the end. It’s important to speak with the Master Gardener about our children! He knows what they can become and how best to inspire greatness within them. I know He can provide every resource necessary for their proper growth and survival. Whenever I feel myself start to worry about what they know and don’t know, I ask Him to remind me of His plans and purpose for them.”

I love this because I lived it while raising my own seven. We suffered through drug addiction, a mother who raged, a father who was on the road, and many other hard things. But through it all, resources came. Knowledge was provided. Growth happened and we not only survived, but we also thrived.

Summary

The path for each family is different. If we choose, we can take the scenic route to get there. It requires that we:

Find what works for our family. Stop comparing yours with someone else.
Seek resources.
Be willing to learn, change, and grow.
Think out of the box.
Have great conversations with your children.
Continually re-group and re-focus.
Know that your family and each member have a mission.
Be patient with the season you are in and with yourself.
Keep learning.
Understand that a successful family is about creation.
Seek help from your Higher Power or someone you trust.

As my friend so joyfully put it – “In the end, we will reach our potential and help our family members reach theirs. And while we are at it, we just might become experts in the field of Changing Seasons and Soil Exploration…if there is such a thing.”

Choose to take the scenic route despite the challenges, worries, and fears. You can do it!

Putting People Ahead of Projects. Can It Be Done?

Here are two stories that will become one.

I am a finisher. This will be important for you to remember as you read this article. Being a finisher is a blessing in my life and the lives of those I live with and serve. But it has its drawbacks. I can get caught up in projects and leave people behind.

Story One

I needed a mammogram. Ugh, I would like to be done with that forever, but whether I like it or not, I needed one. On the appointed day, I showed up and was pleasantly surprised by the technician. She was awesome! Vicki and I had a fabulous conversation about interesting and important things while we took care of this slightly unpleasant task.

I could tell that in some ways, we were alike. She is also a finisher. Our conversation got around to the topic of being patient with people when they got in the way of the work at hand. This was a problem for her at home and work. Boy, could I relate. Projects or work can supersede the very people we are serving. We laughed about it.

Then the conversation took a serious turn. Vicki was down on herself because she was new to the ‘I need to be more responsive to people’ party. She said, “I’m never going to get this.” I have felt this way myself. I told her, “You will get this and have a change of heart if you keep working on it, if it is a true desire of your heart. I know because I have been doing this work of changing for a long time.”

Story Two

The next day I was at my neighbor’s home picking mulberries. I had gotten up very early to do the job because I oversaw getting Maggie up, dressed, and into her wheelchair that morning. I had almost finished one section of the lower branches of the huge tree. I had a clear thought come into my mind, “Remember, Jodie is working, and you need to get Maggie up and dressed.” I have a good handle on time, and I had already felt that it was close to the time that Maggie would need me. But I kept picking. I told myself, “It’s just going to take a minute. I’ll be quick.” Sound familiar? Maggie can do nothing for herself, and she was dependent on me, and so was her working mom, but I wanted to finish.

I heard a ping on my phone, but I ignored it and kept picking. Five minutes later I was so pressed by the feeling that I had to go that I checked my phone. Jodie had gotten a message from Maggie saying she was awake. Fortunately, Maggie’s iPad was propped on the bed in front of her just in case she woke up and needed to let someone know. Jodie was texting to tell me Maggie was awake and to give me a few instructions for getting her dressed and out of bed. Maggie had just had surgery so I needed some coaching as it wouldn’t be a routine morning. Another reason that putting Maggie ahead of the mulberry picking was important!

I can’t believe it, but I began picking again. I mean, I was almost done with this section. I wanted to finish. Then I could pick up where I left off later. But again, I was pressed to STOP, and this time I did.

As I walked home, I felt slightly irritated. When I was in Maggie’s bedroom it all changed. She and I have fun conversations and laugh when I am caring for her. We use our system of questions and answers to communicate. I like working with her. She is funny and so cheerful. As I was ‘talking’ with her and getting her dressed I was overcome with a sense of gratitude. I felt grateful that she was my granddaughter and that I could serve and love her, talk with her, and laugh with her. I felt in a real way, the value and importance of what I was doing. It eclipsed any satisfaction I would have felt had I completed that section of the mulberry tree.

Learning to STOP what we are doing in favor of something that is truly more important, usually having to do with our spouse or children, is a process. I worked on this for many years as I parented and I am still working on it as I grandparent. I am certainly better than I was in the beginning, but I have had to learn to give myself space and time to keep practicing. Changing one’s way of being, whatever that may look like for you, takes intention, effort, consistency, and time. I have had to learn to forgive myself when I must be reminded that something else matters more than my current project.

A change of heart, a new way of being, can take years to achieve and then it isn’t usually a done deal. We must be reminded occasionally of what we know and our new way of responding. Perfect rarely happens. Changing our way of being is not the same as ticking something off a list, like making your bed every morning. It is deeper and it matters more.

As you work on STOPPING when your child needs you, it will impact your relationships hugely. It can make all the difference as they move from childhood to adulthood. It can and will cement relationships, and your children will be able to trust you. They will come to you when they are in need because you will have sent a clear message that they matter and that you value them over all the projects you must do in a day.

I would rather not have confessed to this crazy mulberry experience with you. It would be cool if I could tell you that I always put people over projects. But helping you understand what change takes, how important allowing yourself to make mistakes is, accepting your imperfections, and keeping going compels me to be honest, and vulnerable. : )

We all have ways of being in our family and with others that need to be adjusted. We all do! So, take heart, decide how you want to be, and then go for it even if you are still working on it decades later. Reaching the end isn’t what matters. It is your children watching your journey that in the end will make all the difference.

It has made a difference for my children.

Maggie Understands Happiness!

When the weather is good, I take my granddaughter Maggie for a walk. In the spring, summer, and fall, that’s almost every day. She has minimal use of her arms and hands and no use of her legs, so getting out for a walk is a real treat.

Maggie happened upon something that makes her very happy on these walks. She waves to every car that passes us. She holds her hand as high as she can and moves it as much as she can. From behind the wheelchair, I wave too so that people don’t miss her waving to them. It’s like being in a parade!

When people pass by, one of three things happens:

They see her, give a big wave, and then their face lights up with a smile.
They see her, give a half-hearted wave, but don’t smile.
They are looking in a different direction, or they are distracted and don’t see her at all.

For those who see her, who wave and smile, Maggie is like a small gift. It doesn’t matter what else might be happening in their day. It might have been a bad day. Maybe they had a fight with their spouse or are short on money or have some other significant problem. But for that moment, as they pass Maggie, they feel a spark of joy. Those who wave but don’t smile have the opportunity to have their spirits lifted but choose to stay down. They decide not to have their spirits lifted for even a moment from whatever is troubling them. And what about those who don’t see her or are distracted. Because they weren’t looking, they missed the opportunity to be lifted. They lost out on the gift.

This little example of what Maggie and I experience every day is what happens in life. Some, no matter their problems, let light in when it comes their way. They choose to be lifted even for a few seconds. Some choose to stay down, to struggle and feel bad. Some are not even aware that there is light and happiness to be had because they aren’t looking.

Maggie is an excellent example of the first type of person. She can’t walk, talk, feed herself, or even take herself to the bathroom. Maggie has to wait for everything, and we aren’t always as fast as I am sure Maggie would like us to be. She is often in pain. Her legs ache, and she can’t always find a way to tell someone. Of all the people I know, she has every reason to be unhappy. But Maggie is like those first people in our parade. She finds small things that bring her joy. She embraces them and chooses to be happy.

Jokes, for example. Maggie loves jokes. She laughs and smiles and throws her arms in delight. She chooses to see the small moments of joy that happen in some very long days. Being pushed in her wheelchair brings a smile to her face. Waving at perfect strangers, even if they don’t wave back, makes her happy. Maggie fills her days with small moments of joy, making her days pleasant, despite her struggles.

Life has its ups and downs. Sometimes there are so many downs they threaten to overwhelm us, but happiness is a choice. Look for the moments of joy and let them in. They won’t solve your problems, but you will feel better, you will see more solutions, and life will feel lighter.

Know someone who needs more joy? Pass it on.

With Kids, Don’t Bite Off More Than You Can Chew!!

Keep It Simple

I know about this and I work to keep things simple. However, being at home for an extended period of time has been wreaking havoc on my brain. : )

The other day I decided to help the grands, all four of them, make cookies. Now that isn’t a big deal except, I decided to let each one make their own kind. And let’s not forget that Maggie is special needs and must have constant help to participate.

I know, I was out of my mind! : ) I asked Don to help. I reasoned that he could help the two boys, one 12 and one 6. The 12-year-old wouldn’t need much help. I would help the girls, one 10 and one 14, with special needs. The 10-year-old is creative and fairly independent. That should work out alright.

NOT! Don couldn’t manage two at a time and was totally involved with the six-year-old. That left me with three. As for the twelve-year-old, I discovered that when it comes to cooking, he needed a lot of help. And as far as the 10-year-old goes, she couldn’t read my cursive. Of course, her recipe card was in my cursive. Sigh. It was like trying to wrangle chickens. You’ve never done that. Well, trust me, it’s tiring!! And here is another thing. I am perfectly aware that expectations can do a good project in. I teach that. I am an expert.

BUT I forgot my own advice.

Here is what I thought. Each one will be able to measure the ingredients. All but Ben will be able to cream the sugar and shortening, no problem. Then they will cook their cookies, we will eat some and each will clean up their spot on the table. WHAT WAS I THINKING!!!

Here is how it went. No one knew that you had to pack shortening or brown sugar into the cups and had to be shown. No one could cream the sugar and shortening without significant help. They struggled to even find the correct measuring cup. After one pan of cookies, they were done and had flown the coop, so to speak. As for gathering them back to clean up, GET REAL!

I have to say, that I remained CALM while I was working with the kids. During the baking, I felt myself begin to slip. That is when I should have STOPPED, thought it out, and packaged a ton of dough in plastic wrap and utilized the freezer. But when we are brain-fried we stop thinking. LOL

It took me three hours to cook and put all those cookies away and I had two ovens going. We began at 1:30. The kids were done in by 2:30. I finished at 5:30. Then I was grumpy the rest of the evening. Fortunately, I live in a different part of the house and they never even knew. Poor Don, he lives with me!

When we work with children there are ways to keep it happy for us, as well as them. There are ways to remain energetic to the end and spend the evening cheerful. That is useful because unlike me, you do live in the same house with your kids.

Five Tips For Happy Times With Kids

1. Remember that kids are process-driven. They like the process of whatever the activity is and when that part is done, they are done. They are not concerned with the outcome – in other words baking the cookies or cleaning up, for that matter.
2. Watch your expectations. Link your satisfaction to your ability to enjoy what is even when it falls short of your expectations.
3. Mentally prepare for a mess. There will be one. There is NO way around it!
4. If you keep things simple you will manage better. Only make one batch of cookies at a time, not four!
5. Think through the time needed for the whole project so you don’t find yourself giving more than you planned. The present example is perfect – making cookies from 1:30 to 5:30. To long!

Working with children is so rewarding if we manage our adult way of thinking, have realistic expectations, keep it simple and stay present.

I appreciate it when you share and so do your friends. Thank you!

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!

Mary Ann Johnson