A Miracle in Progress

This is an inside view of our most long-time and faithful Son-Rise worker. 

Working with Ezra was definitely a challenge for me. I started out two years ago after reading an invitation to play. I wanted to just take a look and then make up my mind about working with Ezra or not. I had never met an autistic person. I had no experience, no credentials. I just simply enjoy being with kids and was trying to give something to someone who does not walk through life as easily as I do. Vanessa told me to just try it out and she would provide me with some basic training and answer all my questions.

Ezra was not quite like I expected him to be. He did not sit in a corner, rocking back and forth, that’s pretty much the image I had in mind of an autistic person. He did, however, flip pages of books or spin the wheels of cars for hours. One of my first questions was: What do I do when being in the same room? The answer was simple: Just copy what he does and try to find out why he loves it so much. And I have realized in the last two years, spinning the wheels of cars can be interesting. Why do they not all spin for the same length of time, how do they catch the light while spinning?

Playing with Ezra was in some ways easier than I thought and harder than I thought. The idea was to use the three E’s in his playroom: excitement, enthusiasm, energy. Sounds easy but can be challenging if you are tired or having a bad day yourself. Some days were great, we had loads of fun with a game that I had thought of or we made up together and the next day would be frustrating for me because Ezra would just want to play the exact same game again, creating a seemingly boring ism out of an interaction. One of the greatest challenges during the past two years manifests itself in exactly this situation: MY attitude. If I went into the playroom confident that we would have a great time, that I would just be fun, loving and accepting no matter what Ezra wanted to do, we always had a great time together. I could join him in his isms for hours and still felt like we had achieved something and in the end I was usually rewarded with a look, a touch or a smile. If I, instead, had very clear expectations of how Ezra should behave (because of a previous interactive session or a specific goal that I felt I needed to reach), then Ezra would react by being very exclusive. He would not look, speak or invite me to play in any way; he would definitely not do what I wanted him to. Those were long hours and I felt frustrated in the end.

I have seen Ezra progress a lot during the last years. In the beginning he barely talked, sometimes he answered questions with just one word if at all. He would scream a lot, he would not look at me and he did not like to be touched by me. By now, I know he has beautiful brown eyes. He loves looking at me when I do something funny, he loves it when he can scare me and I always pretend I did not know he was sneaking up on me, he loves numbers, he likes to draw and tell stories. He loves talking about elevators, airplanes, family and friends. He knows the birthdays of everyone in my family. I always have to be careful when making up stories; he remembers them better than I do. He still screams and throws tantrums but if I stay calm, he calms down quickly. And I have to say, I totally love it when he comes up to me and snuggles with me when reading a book together.

Looking back I can say it was a wonderful experience watching Ezra develop and knowing, I am part of the world that Ezra has decided to join. I have learned a lot as well. I now know I can be fun, enthusiastic, creative (create games for every motivation), patient (pressing the imaginary elevator button for the 60th time), excited about small and seemingly boring things (house numbers, for example) and I can celebrate like hell if I know it will light up Ezra’s face. Appreciation for the small things in life Ezra has taught me: gestures, looks, sentences like “will you come to the playroom with me, Leonie?” make my day. I have learned how hard it is to truly accept someone for who they are without trying to change them but how important this unconditional love is to the other person.

With Ezra, I know that I left a mark in his life. And I know that he will always remember me.

After these two years, there is only one thing left to say: Ezra, I love you. See you in April! And to everybody else: Do not be shy, try it yourself. It is time spent wisely!

Leonie joined our team in the early stages of our Son-Rise program and was with us for two years. She is now moving on to her internships. We are sad to see her go, but grateful that she was such a big and precious part of all of our lives, especially Ezra’s. We love you, Leonie. 

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