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A Parents Perspective

On April 28th, parent co-chairs Russell Carey & Rebekah Ham received a standing ovation after their moving speech at The Wolf School’s annual fundraising gala, Discover the Difference.  As parents of a child with complex learning needs, navigating their daughter’s educational journey hasn’t always been easy but it’s always been worth it. Read on as Rebekah describes the impact The Wolf School has had on her daughter and family’s life. ____________________________________________________________________________________________

Our daughter Grace entered Wolf three years ago as a 6th grader and will graduate 8th grade this June. Grace has a complicated medical history and complicated academic profile, but what isn’t complicated is how much she loves Wolf. She has enjoyed her middle school experience, and, when you’re 15 years old, that’s saying a lot.

If I asked you to raise your hand if you loved your own middle school experience, I don’t imagine there would be many hands in the air. I can definitely say that my own hand would not go up, and I didn’t have half the hurdles Grace has had.

Grace was born 14 weeks early and spent the first 2 ½ months of her life in the Neonatal Intensive Care Unit. Her lowest weight was 1 pound 9 ounces. We knew her early arrival would likely have implications for her health and abilities as she grew up, but we were thrilled that she would, in fact, grow up. We would bring her home from the hospital with us, and she would have a wonderful life.

Then, at age 5, Grace was diagnosed with brain cancer. Instead of kindergarten, she would endure brain surgery, high dose proton beam radiation, and 9 months of chemotherapy. As parents, we had to give permission for treatment. We had to sign forms giving the doctors permission to radiate her and pump her full of toxins. The treatment could cure her, but there was a long, long list of side effects. If she survived… hearing, fertility, vision, cognitive development, physical development, and, as a result, social development, would all be affected. She might need to learn to walk and talk again. Her balance would be affected. Her hair might never regrow. Secondary cancer and strokes were possibilities. She would have a 95% chance of chronic health problems by the time she turned 45.

There was really no choice for Russell and me but to sign. If all went well, we would bring her home with us, and she would have a wonderful, though redirected, life. As long as she was here with us, we would manage the hurdles to come.

Grace has been lucky in that her elementary experience was a kind one. Despite this kindness, by the time she reached 4th grade, the stomachaches and exhaustion had begun. The stress of being pulled from class for support services, the difficulty of hearing and participating during recess and lunch and transition times, the lack of invitations to birthday parties….  they were taking a toll. The middle school she was supposed to attend would only make matters worse, and we knew we needed to make a change so that Grace could continue to grow and thrive.

We didn’t know much about Wolf. But we heard through friends of friends that it was a must-see. When Grace visited, after looking at 3 other schools, she knew immediately that Wolf was the school for her and she wanted to just keep going. We followed her lead, trusting that the small class size, Immersion Model© learning, and individualized student attention would provide the substance behind Grace’s gut instinct. Grace’s 6th grade class would be completely new to the school. That seemed like a risk to us, but we’d taken greater risks, and we trusted Grace.

So… 6th grade began and Grace’s stomachaches went away. She would get in the car at the end of the day energized and full of stories about ancient Egypt, about social thinking rewards, about plate tectonics, about drops in the bucket. She would ask if she could stay longer to attend a basketball game, a science program, or weekly afterschool art. She made impressive progress in her academics. And most importantly, she felt herself to be a valued and included member of the community. If you’ve ever been on the receiving end of one of Grace’s hugs, you know just how much she appreciates the love she has received from friends and teachers. One teacher even suggested she should hire Grace as a chiropractor.

One of Grace’s greatest achievements while at Wolf happened outside the classroom. After years of trying to learn to ride a bike, she became enthusiastic about trying again, this time at Wolf, because she felt so very secure and confident there. With two summers of lessons from the physical education teacher, she was riding around the gym and feeling more capable than she ever had before. It was a big deal. That fear of what cancer could take away was being replaced by the sight of her balancing on a two-wheeler. What another parent might take for granted as a “normal” milestone, felt monumental, and if you’ve been there, you know it’s almost impossible to hold back the tears.  

Last winter, Grace spent a week visiting a high school in Providence to see if it was a fit for the next leg of her journey. She participated in classes. She asked questions when she needed to. She attempted conversations with potential friends. When this was reported to me, I wanted to say, “My Grace?” But yes, my Grace. That is who Wolf has helped her to be. While Grace is reluctant to leave Wolf (we all are), she is also ready. When she graduates in June she will be far more confident and willing to be heard than when she arrived. That wonderful life we hoped for for Grace is happening. It’s happening right now. Despite life’s redirections and hurdles, Grace is making it happen because of all that Wolf has offered her.

And, ready for the very best news? This September, Grace will be 10 years beyond her brain cancer diagnosis. Thanks to The Wolf School, she will enter high school knowing that school can be a happy and accepting place, where everyone is valued. Her curiosity and love of learning has only grown. Grace is healthy, and she is happy. She has even been invited to a few birthday parties. What more could a parent ask for?

Rebekah Ham

 

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