“Your son was great today. I hardly noticed he was there.”
The first time I heard this, it both broke my heart and infuriated me all at once.
You see, my son is a beautiful soul – full of love and kindness, giggles and smiles, hugs and spins. He has an autism diagnosis and that is one part of his reality. He has a speech delay and various social differences. But the reality is also that though he does not always communicate or behave the way many or most others do, he still deserves to be part of a group. He longs for friendship.
More than once, when someone has relayed to me how well Xavier did in a social situation, his ability to disappear into the crowd has been the litmus test of a good day. The first time that is etched in my mind is when we were told he had a great day because someone “hardly noticed he was there.” I’m not going to lie. I’m censoring my words when I say I was pissed. But, after many times of hearing this from various people in his life, it’s been more sad than angry.
Is my son unworthy of love? Does his voice need to be silenced? Yes. His behaviors are different, but does he have to be just like everyone else in a space to be appreciated or included? What are the qualifications for greatness? Sameness?
Recently, we were in another place where my son longed to be with others but due to his distracting behavior, he had to go to another room so the other children could learn. We played at a distance and as the children were leaving to go their separate ways, my son cried.
Scratch that. He wept. He wept not tears of “I wanted that toy” or “I wanted that cake.”
It was a different cry. I’ve seen it before.
He cried because he wanted to be a part of the whole. He wanted friendships. He wanted a relationship. He wanted love. He was heartbroken. And while no one is saying he is unloved by others or shooed away, we know and, most likely, he knows that his difference separates him. It breaks his heart. And it breaks our hearts.
When I married my husband, I became a full-time bonus mom to sweet Xavier. This sweet little boy was caring, smiley, giggly, and (at the time) recently diagnosed as on the autism spectrum. That was several years ago and I must say it has been a journey. Sweet, smiley, huggy Xavier has miles of love and understanding in his lanky body. He’s full of energy. He is not, however, full of expressed speech that we all understand. He did begin to talk again (post autism regression at age 1) when he was 4. Now, at age 10, he can verbalize his wants and respond appropriately to yes or no questions. He also often makes lots of sounds that others may find distracting. He might hum like a race car. He might whistle or make his own little beat. He’d make a fabulous beatboxer. He has come a long way with his behaviors and with proper sensory diet and other supports, he enjoys all types of environments without the sensory overload meltdowns he had so frequently before.
We do our best to teach him skills to navigate this life – the same as anyone does for their children. We’ve all invested love and time together in hugs, visuals, explanations, slowed down words, patience, therapy, lots of vestibular input, more therapy, different foods or supplements, love, love, and more love to help him grow.
He may not have many friends outside of therapists and caregivers but I am glad he has his family. He has brothers who love and accept him. He has a family that has decided that the best thing for our family is to be family. He is not my sons’ brother with autism. He is their brother. He is not my “step” son. He is my son. He is not to be simply tolerated, he is to be a part.
Last year we came across an amazing place where all kids are welcome to play with each other. This place was without judgment. It’s a place where Xavier and other children with sensory needs could play alongside their peers regardless of ability. It’s a place where his brothers were allowed to play with him on cool sensory friendly equipment that helps my son regulate and feel at ease while playing with his brothers and build community with those outside our family. John and I decided to take the brave step of opening such a place here in the New Orleans area. We are opening a We Rock the Spectrum Kids Gym for all kids of all abilities to provide a place that we’ve needed and wanted – as do many other families – to have a community with others. We thank the founder of We Rock the Spectrum for answering the call and so genuinely conceptualizing this gym out of the needs of her own family and bringing it around the world.
Autism awareness is great. Tolerance is ok. Inclusion is a huge step in the right direction. But all these are steps toward accepting people for who they are. We hope to provide a starting point for people realizing they aren’t so different after all. And even if they are, they may be different – but not less.
Brandi is the co-owner of We Rock On Wheels New Orleans and We Rock the Spectrum Kids Gym New Orleans. She has a loving husband and three beautiful boys.