We all encourage our children to be different in some way, not to follow the crowd but be THEMSELVES. If Max jumped off a bridge, should you do it? If Rosa cuts HER bangs in class, should you do it? NO, you are your own person. We have this emphasis on self and independence and on confidence in differences that make us who we are. It’s all good. Until your child is truly different. Then…it is heartbreaking.

Shawn Joaquin was recently diagnosed with something that will affect him his entire life. It will perhaps make him stronger as he fights to overcome it. It may someday, possibly, be a gift in that way. But in the interim, astute children will see it and comment on it. Weak-minded bullies will sense it and use this perceived weakness as a way to taunt him. My tenderhearted boy is going to have to develop more than confidence; a carapace may have to develop to get him through the coming years and even into adulthood.

I cringe when I get emails from my new Yahoo group with postings like “how to explain your child’s disability”, “your disabled child can…”, “alternatives to public school for disabled children”. I now understand the battle of many to remove the word “handicapped” from the general vernacular. Of those with paraplegia fighting against being called paraplegics. Those words are limiting, placing people into little buckets as if that single word describes who they are versus one of the many challenges they and we all face. I am not ready to apply any label to my son.

I had thought that with the general cluelessness of children under 8 and Shawn Joaquin’s own innocence and naiveté that we would not need to deal with any of this for some time. We have not talked to him about what’s happening, nor has he asked – he is simply grateful for his extra time with me as we go to various appointments every week. He loves the tradition of bagels with cream cheese before one appointment, snacks in the hospital cafeteria before another, and the simple joy of singing along to XMKids in the car with his mama. We have lived in this bubble for some time, and I had hoped to keep it going. But in the last weeks of kindergarten he came home discouraged and hurt by the taunts of two of his “friends” whom I suspect will someday be in the bully camp. Then yesterday his inability to keep up at camp in the various games – capture the flag, Frisbee football and other games we all played as children — had him feeling frustrated and in tears. And my heart broke just a little as I realized that not only did I need to talk to the counselors about how to help him, I had to talk to him about his differences. And somehow convince him that his differences make him special, not handicapped, disabled or otherwise boxed in. Though what I want to do is wrap my arms around him and shelter him from any cruelty or unkindness from any corner, to keep him safe and protected until the day I die.

As is apparent from this posting, I am unable even now to put a label on Shawn Joaquin, to describe what is happening with him — I am not ready for anyone to put limits on him or to discuss his challenges in the school parking lot at pick up. And perhaps I want to preserve my own innocence and naiveté that will surely be damaged when I learn that someone in my circle is not as compassionate or supportive as I had hoped or expected. So for now I too will enjoy the bagels and the snacks and the singing, until I can come up with the right vocabulary to talk to Shawn Joaquin and those I depend on to guide him daily in his life – teachers, counselors and others intimately involved in our life now. And hope that they too can see past any label and see only my beautiful, smart, creative son — and all that he is capable of now and in his lifetime.