Saturday, May 12, 2012

Club Friends

When we decided to try putting Simon into an inclusion kindergarten last fall (meaning that he spends part of his day in a typical kindergarten classroom instead of spending all of his day in a special education setting), I had many concerns. One of my biggest worries stemmed from something one of Simon's doctors had said to us when I asked him his opinion on special education vs. inclusion -- he said that often, for kids with special needs, it was "kinder" to keep them in a group with kids more like themselves because, "kids can be mean to people who are different."

I didn't know if I agreed with him or not. Part of me hated the implication that I should sequester my child, and another part of me wondered if he was right. He does have a lot of experience, and I know he has the best interest of his patient's at heart. Directly contradicting him, however, Simon's school felt strongly that we should give inclusion a try. They, too, have much experience and the best interests of their students at heart. After about a month of weighing pros and cons and after assurances from school that if things did not work we could change them, I decided to try inclusion, albeit with the by-now-familiar sense of uncertainty I harbor when making decisions about Simon's future path.

Fortunately, just a month into the school year I knew we had done the right thing. Simon had his second status seizure and -- despite the fact that he had only been in school with his class for a few weeks -- each child made him a card and created an amazing poster by tracing their hands and sending "a hug for Simon" right to his hospital room with their teacher and Simon's aid who visited us that night. We still keep the poster in Simon's room and I get a little teary every time I look at it, knowing how much love and well wishes were sent his way by kids that (at the time) barely knew him. They just knew he was one of them.

Over the course of the year, the child I was worried would never make friends had his first playdate, was invited to birthday parties, and even had his own well-attended "playzone party." When he was absent or ill, I was told that the kids missed him. When I visited the class, the children told me how much they loved him. Through teacher reports and classroom visits I came to see that Simon wasn't just  included with the "typical" kids -- he was loved. And, because they loved him, a child that had no interest in other kids now gets excited to see his friends. Though he still doesn't communicate in a "typical" way, the children accept him for who he is. They love his big (sometimes sloppy) hugs and always compliment his shirt (right now Simon's sole conversation with peers is "I like your shirt! Look at my shirt!").

I honestly did not think that things could get any better. Until they did.

Last month a teacher from Simon's school that coordinates the student-run "Club Friends" contacted me. She explained that "Club Friends" had been started by some of the students at the school who wanted to find ways to do nice things for people in their community. They had created care packages for soldiers, made cards for children in hospital, and provided blankets to those in need. They had heard about Simon and his seizure dog in training and the Club wanted to help with a penny drive.

At the time, I told them we had paid our portion of Tigger off (with MUCH help from so many friends!), but that we were waiting on a grant from the Chelsea Hutchison Foundation. I suggested that, if they still wanted to help, it might be a good idea to take whatever was raised and donate it to the Chelsea Hutchison Foundation. Not only would they be helping Simon by putting money towards his grant, but they would be freeing funds to help more children waiting for life-saving pups in training. They agreed and so I came to visit the Club to talk about epilepsy and service dogs. Then, quite ably, they kicked off the campaign, calling it "Cents for Simon."

I was very impressed by the fact that these very young people were so actively seeking ways to make the world a better place, one act of kindness at a time. I was also very touched by the kids desire to help a kindergartener that most of them didn't know. However I am sorry to say that I also underestimated the impact they would have. Not only did the cents (and dollars) pour in (they had to switch from collecting the change with buckets to tubs!) but emails like this came to me through Simon's teacher:

"The day the announcement was made the school was collecting pennies for Simon, M came home so excited and immediately emptied his piggy bank.  He proceeded to ask his sisters and parents for their change for Simon because it was so important for Simon to get his seizure dog.  He called his cousins in Chicago to ask them to send their pennies and when he received the money in the mail he was so excited to take it to Simon.  He also called his grandparents and uncles and asked them for their pennies, who all handed him a baggie of pennies.

Tonight at family dinner he said he had something very important to say. He proceeded to tell everyone about his friend Simon who has a seizures and needs a dog to help him but it was very very expensive and we need to help him.  The other people who were there for dinner also gave a small donation to M for Simon.  I can not tell you how excited he is to be helping his friend."

I went through a box of tissues the day I got that email, and it didn't stop there (and I've lost count of the tissues). Some children had lemonade stands asking for donations, some parents made incredibly generous donations on behalf of their kids, and the outpouring of love and support from the faculty and administration of Simon's school was absolutely staggering.

Thursday was the last Club Friends meeting of the year. They asked me to come with Simon so they could show me what they had been able to raise. As Simon happily spun in a circle in the middle of the room singing a song, the Club's little classroom filled with kids, teachers, staff, and parents. Standing in front of the group, they told me that Club Friends had set a goal of raising $2,000 -- and they had achieved it. They handed me a card with a check and, as astounding as the amount itself is, it was what the card said that so overwhelmed me.  

"Keep your spirits up. In life we are certain to be confronted by circumstances and challenges beyond our control, but keep your spirits up... you always have the support of others who truly care!" -- signed the Faculty, Families and Friends of the entire school.

As I openly wept (thank goodness I remembered to wear waterproof mascara for once) and a fourth grader found me a another box of tissues, I turned to the child nearest me to thank her. I told her that it was hard for me to put into words how much it meant to our family; that she and her friends should care so much about Simon.

The little girl (who looked about 7) took a deep breath, tilted her head to the side, and squinted at me for a long moment -- as if she were trying to decide how to explain something to someone who really doesn't get it. "Well," she said, "Simon's just a little kindergartner, and he just needed some help..... so we helped him."  


  1. That is so amazingly fabulous! It sounds like an amazing community you have there!

    Also, know that not only was this a positive experience for Simon to be in the regular kindergarten, but it was also a learning experience for all of those children. Much of the being mean that children do in school is learned, and you are helping every single one of those children to understand what it means to be outside of the norm, and that it is ok. You taught them a hands on personal touch to why being different is ok, and hopefully they will carry that compassion with them the rest of their lives. Kudos to you for teaching another step out of the bullying phase! And I hope that every class Simon is in is just as accepting!

  2. Wow. You are such a great writer, and I absolutely loved reading this--especially the quote at the end. Thank you for sharing Simon's story--and yours.

  3. Thanks Anelle! I have to give a LOT of credit to the adults at Simon's school -- they do an amazing job of teaching the children how to accept one another and appreciate each other. We are blessed to be a part of it, and I know whatever the future brings having had this experience is going to give me strength.

    Rita -- that is quite the compliment coming from an outstanding writer!!!

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