Notes from the Mama Bear Diary: A Tale of Summer Inclusion

by Cynthia Carr Falardeau Print This Article

Silhouette of a child with prosthetic limbs holding onto a railing.

Summer Inclusion

“As our son has grown, he has led the change and taught me a lot about letting go. My advocacy has been instrumental in his development. However, I am learning that as he changes – so do I. I need to adapt to his development. Inclusion is the solution to his independence. Here is how I am working on curbing my grizzly attitude to allow my cub to grow…..”

It was a defining moment. As I sat there quietly, I looked around the room, and watched the other mothers. Each of them held a kitchen utensil. We were asked to share what was wrong with our tool. I believe the process was to identify our need to upgrade to a “pampered” version.

I am not sure if I was delirious from lack of sleep, heart monitors, oxygen tanks, the stress or re-bandaging my son’s recent amputation. I just know that as I held my worn and battered spatula I could only focus on one thing – what made it special.

I am often reminded of that moment when I think of advocating for my son. Now please understand that I am not comparing my child to an inanimate object. I am merely making the connection that sometimes in an effort to protect our children – we focus on what is wrong, or rather, what they can’t do. We want to protect them yet we lose sight of what they can do.

We made a big leap a few years ago; we left the cozy comforts of attending the local school district’s ESE summer program. My son was tired of the setting and wanted to attend theater and outdoor camps. He led the change and was the one who convinced me he could do it. I did my best to retract my helicopter wings and park my Mama Bear attitude. Now, at age 11, and has thrived in these enriched settings.

The one thing I have learned through all of this is that I no longer need to point out my son’s differences and exceptionalities. I have decided that I am no longer going to call ahead, fill out camp forms or notify anyone in order to protect him. I am not throwing him to the wolves; rather, I am allowing others to appreciate that he is as an individual – a person first. His labels are inconsequential.

I had thought that by doing these things I was protecting him and keeping him from being misunderstood. My analysis was actually causing him “paralysis” and through that, I was causing others to make judgments that led to limitations in my son’s participation.

In the beginning it seemed so rational. I wanted there to be no surprises. My husband and I both work full-time and do not have any family near-by for back up. We could not afford a call from the camp director saying, “I am sorry but this is not working – please come get your child”.

Several experiences this spring and last summer changed my view. I anticipated that there would be concern about my son’s ability to be understood or about his behaviors when he becomes overwhelmed. To my surprise, the greatest concerns were about his missing right forearm and hand. Truthfully, this has been the least of our challenges. But for some, it is the most visible difference. The counselors convey fears about explaining my son’s limb to the other children.

Honestly, I will never forget the first call, I was flabbergasted. Well, really, I was speechless. I remember the camp counselor asking, “Mrs. Falardeau….are you still there”? I was fitting back tears and anger. I wanted to blurt out, “Well how do you explain why the fat kid eats too much? What about the child who chews their nails to the bone? Or how about……”? I refrained because I did not what to become the monster that I perceived I was about to battle.

I took a deep breath and asked the simple question, “Do you want my child to attend your camp”? There was an agonizing silence. The director said, “Well, yes, of course I do”! And then I pushed the ball back in her court and said 8 simple words in a strong tone, “I am sure you will figure it out”. I hung up and threw my arms up in the air. I felt like a modern day Rocky Balboa. I pranced around the room throwing air punches like I had taken down the “Apollo Creed” of inclusion. Triumph faded quickly and my euphoric moment led to tears.

We did follow through with the camp. It turned out it was not my son’s favorite. I never told him about the call from the camp director. I think we both learned a lot from that experience and a few others that have impacted how I register our son for summer camps.

I fill out the forms completely. When I get to the section that says, “Is there anything else you would like us to know about your child?” I now write a simple sentence: “He is amazing”!

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This post originally appeared on our May/June 2014 Magazine

Notes from the Mama Bear Diary: A Tale of Summer Inclusion

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