Levi Howard

The following presentation is a very simple way to introduce the ectodermal dysplasia to your child’s classmates and teachers. We published this article years ago but it’s still a great idea for parents to use in their child’s classroom. Levi is now an adult who has his own family!

By Kim Howard

My son’s name is Levi Howard. He is 21 years old and the oldest of five children. He has more friends than anyone I know and happens to be the coolest person I know. When Levi was born, I was a very young mother at 17 years old. The day Levi was born, I fell in love with my beautiful baby boy. As with any mother, I knew I would do anything for him. I really had no idea what was in store for Levi and his life.

Sure, he was born with Hay-Wells syndrome (also known as ankylobepharon-ectodermal defects-clefting syndrome) but he was normal to me and everyone who knew him. However, it didn’t take long to realize that the outside world saw him as different.  So, I decided to help others to see him as just another kid, and it needed to start with his peers. I developed the M&M presentation which I would deliver to his classmates each year, always with the teacher’s permission. We became very famous.

First, I would tell the teacher that I wanted to help him/her and the class to feel comfortable with Levi by knowing about the condition he had.  They always wanted me to come in for themselves as well as the class.

The first year (kindergarten), I took a thing that Levi wanted to share (pictures, trophies, hobbies, etc.) and a large bag of M&Ms. Keep in mind that kindergarteners are simple, so I kept it simple. I sat Levi at the front of the room on a stool.  It was a great chance for everyone to look at him without it being called staring. After all, it is in human nature for people to stare at anything different.  I really don’t think they want to hurt any one’s feelings even though something that simple does start to hurt.

We would share stories about what Levi had brought to show everyone (like show & tell). Next, I would pass out the M&Ms, about five or so each, making sure to tell them not to eat them yet.

Then, I would ask simply who could tell me how the M&Ms were alike. The kids would say things like: they are round, all had an “m” on them, hard candy on the outside, chocolate on the inside, and tasted the same, etc.  I would ask them what was different about the M&Ms. There was only one answer, the color.

Then, I would say M&Ms are a lot like people. We are all mostly the same. But we all do look different. Some of us have straight hair, some of us have curlier hair, and some of us have no hair like Levi. Some are big, some small, etc. We were all made different and that’s ok. Then, I would say, “Sure Levi looks different, but not one of us looks the same in this room.” Once I put it that way, they all looked at things a little differently.

After I gave my very short talk, I let the kids ask me and Levi any questions they wanted. They never asked me anything about his syndrome. They would ask things like “Why is Levi such a fast runner?” Aren’t kids great?

I came back year after year to give that same talk to which ever classroom Levi was in. I never change the talk, after all it’s not just kindergarteners that are simple. It’s just people in general.

He was in 6th or 7th grade when he said he was too old for his mother to come into his class. But, boy did the kids look forward to it. They would see me and say, “Hey Mrs. Howard, Levi’s in my room this year. Are you going to do the M&M talk?” To tell the truth, I looked forward to it just as much as they did.

 

8 comments on “Using M&Ms to Teach About Ectodermal Dysplasia”

  1. 1
    Laura Bravos on September 14, 2017

    I sure wish I had been that mom! My son Christian is now 37 years old. Though he is not affected by Hay-Wells, I think it would have been valuable for me to have been more proactive with his school experience. Thank you Kim for sharing your story about your beautiful son Levi!

  2. 2
    Carol Nations on September 14, 2017

    So proud of you Kim. And look at Levi now!!!! What a blessing you are. Im lucky to know you and call you friend.

  3. 3
    Arabella Strasser on September 14, 2017

    Levi could not have been born to a better mom. Kim is sweet, Smart, and strong.Just like her mother, Laura, and Her grandmother Kathleen. Levi Was a Lovable and fierce fighter.He overcame Some Really rough challenges .He was able to do this With The help Of all the love that surrounded him. Levi is someone That Anyone would be proud to know. I know I am!

  4. 4
    Deborah Leach on September 15, 2017

    From the time Levi was a baby I could tell there was something very special about his spirit. It drew me in and made me fall in love with him. Kim, I was always so impressed with your intuition to give him as much love and support as he needed, but also give him the freedom to be his own person and to grow into an amazing and independant man. Levi, and the Howard family, will always hold a special place in my heart. Please give him a big hug for me. (He once told me he would never get to old for my hugs.)

  5. 5
    Kim Howard on September 15, 2017

    WOW, some many kind words! The morning I saw the post I just happened to be with Levi. We read it together, both of us feeling a little choked up remembering back to those days.
    Today reading the comments, I’m sitting here I look back at everything we have been through. What a life it has been! We were / are so lucky to have been surrounded by such awesome people!

  6. 6
    Kim Howard on September 15, 2017

    Deborah, Levi will be so happy to hear from you! You are one of those people we will never forget! When I saw your post I wasn’t sure who it was from (as I don’t know your last name) But when I read the last sentence, I new it was you.

  7. 7
    UZAIR UDDIN FAROOQI on September 26, 2017

    Hi Ms Kim Howard,

    Thanks for sharing us your story, you have the same feeling as of my mother Mrs Qaisar Jahan, I also belong to those people who are suffering from this sickness, but with very courageous and all collective family support i have completed my BBA(Honrs) and then MBA(Human Resource management) from world renowned university and now working in a National university at a good executive office here in Islamabad, Pakistan.

    But i can not forget those hard days from my childhood to teenage and now mature professional life. Still being the issue i feel so much difficulties to survive. But have to manage it any way.

    The purpose to write this comment reply is, I am always in need of assistance for my life ease and comfort-ability. Is there any international level agency or donor to support people like Levi Howard and myself.

    I need help in all ways. Please tell me the ways for getting best life to live.
    My personal Cell # is: +92-345-5935220 and email is: sfarooqiz84@hotmail.com

    Hopefully could get the positive response by you all / any mercyful heart & soul.

    Uzair.

    1. 8
      Kelley on September 26, 2017

      Uzair, this is Kelley from the NFED. I will send you an email with answers to your questions. We do not know of an organization that financially assists people affected by ectodermal dysplasias for daily living expenses.

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