On mandarin-orange chicken day

Our son recently started using a communication device, his “talker”, to communicate with us. As many of you know, he’s medically complex with special needs and he is nonverbal. He’s getting quite good at telling us he’s “all done” or if he wants “more” of an activity. We were with family the other day and we were using his talker;  I was asking him if he wanted more books. Upon asking him this and presenting him his communication device a family member said “how does he know what more means?”

I had to take a deep breath. I had to think of an appropriate response, to be honest, I was completely taken aback. This is someone who has known him since birth and sees him often but yet was questioning his intelligence. I simply responded “how does anyone know what more means? He has learned like any other child.”

I went home and was extremely hurt, angry, but more than that I was completely heartbroken. If a family member wonders about his abilities then how does the world see him? Does the world see him as less than? Does the world see him as unintelligent? Does the world view him as someone who doesn’t understand? And quite frankly, it frightens me. It worries me that he is growing up in a world that will underestimate him.

And as his mother, I feel as though it’s my job to prove to the world that he’s smart, capable, funny, charming, and even manipulative just as any other four year old can be. I take it upon myself to be armed with responses to questions regarding his abilities. I prepare myself for the worst in people. I am always standing tall ready to protect my son against any hurtful remark, question, or comment. I absorb them all and in the shower or a drive alone I release them. I cry for him. I cry for us. Tears roll down with worry that I will forever have to prove to the world what an amazing human being he is. And oh how I hope that the world will see him as we do. I desperately want him growing up in a world where differences are embraced and he’s not seen as less than.

The other day we decided to venture to the elementary school to have lunch with his first grade brother. I worry that our older son will be met with questions of why his brother is the way he is or something will be said in front of him to hurt his feelings. He fiercely loves his little brother and loves him unconditionally. We rolled into school, him in his wheelchair watching Daniel Tiger on his iPad, feeding bag hanging on the handle, and his bright green hearing aids in. My older son and his friends were thrilled to see us. We sat at the end of the table and chatted about the day so far. A little buddy made mention that our son can’t walk, and my older son matter of factly said “and he might not ever” as everyone took another bite of their lunch. That was it. End of conversation. I smiled. My heart brightened. He is their friend’s brother; that’s all they saw. Conversation moved on to Nerf guns and magic tricks. And as we were packing up to leave I heard one of my son’s first grade friends say to him “you’re lucky, you have a cool brother, he looks just like you.”

So when I worry about the world viewing our little boy as less than, I am shown that the few who will underestimate him do not make up the entire world. I can only hope that the world has more people like the first graders at the lunch table on mandarin-orange chicken day. Thank you to the parents of these lovely little boys for helping them to see the world with compassion and understanding that being different is ok.

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