When Tony and I have gone out into public spaces, eyes are almost always upon us. The eyes of those who saw our screaming son rip an earring out of my ear when I was putting him on my shoulders outside of a local Safeway a few years ago, and mutely watched as I squatted, picked up the pieces, and reinserted the stud while my forearms held his thighs safely in place. Once I started walking, he immediately calmed down, but of course, every eye we passed in the store was following our path because I am guessing the sight of a 5’3” woman carrying a kiddo that size on her shoulders was something they don’t see a whole lot of.
The eyes of a grandmother who frantically scooped up a toddler, clutching her tightly as a fearful Tony, who was many feet from her and not moving in their direction, began to smack his own head with the open palms of his hands outside of a Spirit Halloween store two years ago. The fabulous Miss Whitney and I were trying to get him to go in, but he was scared and didn’t want to try. The eyes of an openly gaping Fry’s shopper a year later who stopped her cart a few short feet away from us to gawk as Tony briefly smacked his head. I looked her directly in the eye and told her to just keep moving. An assistant store manager of a sandwich shop who was surprised I insisted on helping clean up a puddle of vomit that had come from our son after he had a sensory system overload a little over six years ago.
So many eyes have seen so many things, and they have defined Tony only using those brief glimpses of behaviors that made them uncomfortable. And perhaps wondered many things…I have been asked, for instance, why we don’t just keep him at home- or some place else. That is because my eyes are lit by all the love of a mother who has seen so much more than just those moments. The entire picture I see isn’t the small pieces of a puzzle that all those other eyes have seen.
I have seen a sweet little boy who just a couple of weeks ago was crying inconsolably because he upset his sister. I explained to him that if he said “sorry” she’d feel better, and he immediately tried to sound out the word. Hannah came over and warmly thanked him, telling him everything was ok, and our little man instantly calmed. I have watched him try much harder to stay out of other people’s yards in our community after I explained to him that they feel about their yards the way he feels about his potatoes. For the record, Tony does not want anyone else to touch or eat even a part of his mashed potatoes.
I have felt the sting of tears after hearing him say Emily’s name for the first time, as he laughed with joy because she would be coming back after a week’s absence. He still struggles most of the time to combine sounds, and it is rare he will even attempt anyone’s name verbally, but I felt in that moment how much happiness he feels from the bonds he does have. I have seen and heard the unrestrained enthusiasm in his giggles as he requested tickles and chase from someone he loved. Because he does love. People think just because he has level three Autism he can’t, but I know he loves several people quite deeply.
We have worked very hard to help Tony learn different ways of handling his environment and his feelings, and I have seen the progress come in slowly- but steadily nonetheless. I emphatically agree with the testimony of Ricardo T. Thornton Sr, which was featured as an essay in Disability Visibility, when he addressed the Senate about the importance of allowing individuals who would typically be institutionalized opportunities to grow and develop in the community. Mr. Thornton himself had been in such an institution, and I loved so much of what he said, but I am only going to reference a small portion of it in this post:
“When I lived in the institution, no one would have believed that I could have the life I have today- married with a son and grandchildren, a good job for thirty-five years, a driver’s license and car, and opportunities to speak on behalf of the Special Olympics International…It’s important to have people believe in you and to expect that you’re going to succeed. People need to have high expectations for people with disabilities because then they’ll give them opportunities to learn and grow. People don’t grow in places like Forest Haven and in other institutions.”
And individuals with intellectual disability or certain behavioral challenges don’t grow if they’re never allowed outside their family’s house either.
We believe in our son. And most of the time he’s a pretty happy guy who finds things to enjoy in life, even with the things that scare him or are hard because of his sensory differences. We have no idea what the future will look like for him, except that it will be filled with love from us, and I will continue to resist the idea that the list of diagnoses he has should have led us to hide him away. Tony will continue to need opportunities to experience the world outside of our house to grow into that future, and I will continue to meet the eyes of everyone who looks our way. Whatever may be flickering behind their gazes, mine will be glowing with pride for both of my treasured children.
