I ran into a neighbor the other day, a former teacher who does well as a private tutor, and he asked me how it was doing. “Good. Bus strike is over.” “Oh yeah,” he said. “That.” The last day of the NYC schoolbus strike — which impacted mostly kids like my 14-year-old autistic son Alex, and his families — ended in what would have been the third day of spring break. It would have, except Hurricane Sandy (oh yeah, that) imprisoned the boys in our apartment for a week of no school in early November. The NYC Department of Education (DOE) had to make up for that, so they cut the normally week-long February break to two days. The boys were set to return to school, buses or no, on Wednesday, February 20. The strike evaporated on the afternoon of Friday, February 15. I got home with Alex off the Third Avenue bus at about 3:30 and checked one of the local news sites to see that the union had received promises from the candidates that the next (likely) mayor of New York will pay attention to their demands (some job protection for the most senior drivers and matrons). By seven, it was over. The fall of the Alamo must have been like that – breathtaking and quick if you were there to see it and there to be affected. (During the strike, the DOE issued Metrocards to parents and kids like Alex. They gave one to me that expired on Wednesday, February 20. Everyone I’ve mentioned that to agrees that it’s a weird coincidence.) I always got Alex in, but a third of special-needs students in New York were out of school for as much as a month, their parents unable to get them to school. Now we move on. From something called the Office of School Support comes a memo that says, “Schools are currently collecting information on students affected by the strike and making a determination regarding what, if any additional instructional support and/or related services are required to make up for school time missed during the strike. The following steps should be followed once a school notifies the network that instructional support and/or related service(s) are required. “If no DOE teacher or provider is available, or adding services to the student’ s program would be programmatically or educationally inadvisable, the network should provide the parent with make-up instruction and/or related services by manually issuing authorizations for SETSS (P-3s) and Related Services Authorizations (RSAs) as appropriate. All manual RSAs and P-3s provided for this purpose must be issued as follows …” I also got a letter from the NYC Office of Pupil Transportation that they might soon approve one my $19 cab fares that I rang up one afternoon with Alex, because on that afternoon on the sidewalk I pretended to be kind of rich and just raised my arm for a taxi because I was tired of people trying to not stare at Alex on the Third Avenue bus. Will they pay? Hope so, because I’m about to shoot myself in my SETSS and/or the P-3. On the first afternoon when his bus was rolling again and disgorged Alex right on time at 3:30 p.m., I handed the woman (see “matron”) two $10 Duane Reade gift cards. “I’m sorry you didn’t get what you wanted,” I said to her. “I wish it could be more.” True. True too that I was glad to gather Alex off that yellow bus without having to ride the stares of the Third Avenue bus. Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting and to An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
I’ve been working with my autistic son Alex on the sidewalk or in stores in those moments when he sees a group of people approaching and his waves his hand and says, “Bye! Bye!” What’s going on with that? “No Alex,” I tell him. “Say ‘hello.’ Say ‘good bye’ when they leave…” He’ll be 15 in June and sort of four for the rest of his life, and I feel I have to talk to him like this. So Alex and my other, typically-developing Ned and I are in line at the neighborhood grocery store. “Alex,” I say, “help me put stuff on the belt.” The belt doesn’t work in this store for some reason, but the point is to get him to grasp something in his hand and put it somewhere in a productive way. But he’s staring off to the side and I’m thinking there’s another bolt to the laundry aisle coming when I hear a deep squawk. This is the same store where Alex and I had a run-in with what now I think was another autistic boy. He wouldn’t get out of Alex’s way; he had a Mohawk and was eating a hamburger in a grocery store in the middle of the afternoon, and I just didn’t have a good feeling about him being nice to my son. This time in the store, however, I see a young girl with heavy eyebrows over by the tuna; she stands behind a cart with another, older woman, and her movements are jerky. The other woman is glancing around. I did some work in this neighborhood for the New York State Department of People Like Alex, and I know there are homes in this area. I interviewed one couple who was going to get married. The apartments were nicer than anything I had in New York City in my early years: hardwood floors, white walls, gleaming appliances. The young woman with the eyebrows and who let out the squawk comes right up to me and Ned and Alex. Ned and I see her but Alex doesn’t seem to. “Papi!” she says. She’s wearing a cream-colored coat, and she holds out her hand for me to shake her palm feels firm but her fingers soft, like all the muscles aren’t being told what to do. She knew me as a dad. Alex’s? Hers” “Nice to meet you!” I say. I used to say things like this to people like this with elevated, fake enthusiasm. Not anymore. Someone like Alex is here. The mom’s by the cart. “I’m so sorry, mister,” she says. I squint and purse my lips and shake my head and even as I do I know the expression says not a tenth of what I’d like to say. “Oh no. No. This is Alex.” I present him like a passport. He’s that way, too. “Alex, now! They’re leaving. Now say, ‘Bye.’” BYE! Wave wave. Alex and Ned and I leave the store. “That was nice,” Ned says. Yes. “I’ve had some nice encounters in that store,” I tell him. “Some people have come up to me and just said, ‘How old is he?’ You can tell they work with someone like Alex.” I tell Ned about the work I did in this neighborhood. Should I even say this to a kid who’s just 11? “Maybe Alex can live in one of those places,” Ned says. “That’d be close by.” “Well, no. I think they’re a little more high functioning than Alex is.” “What do you mean?” I mean this is a good store in a poor neighborhood, Ned, and you should learn right now that probably only poor people are ever going to work with your brother. I don’t tell him this, of course, because it’s my job to protect him and because, when you come right down to it, I don’t know what I mean. Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting and to An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
Who’s aware? I hope all the people who don’t lead the life that I do. Self-pity? There’s no such thing to the dad I am. I’m aware to my core. “I was going to send you an Autism Awareness Day card,” a friend wrote a few years ago,” but I couldn’t find one in the Hallmark aisle.” Why not? God, she was smart. I am aware when my elder son Alex slams our bedroom door at 8 on a Sunday morning and a few moments later I hear a door slam in the hallway and something tells me to get my ass out of bed and find out what neighbor’s apartment he’s in. Aware when I get check in the mail for $313 in reimbursement from a well-meaning agency for stuff I don’t remember buying but that I wish I could just pay for. Aware that some of that reimbursement money goes to the camp where, for two weeks this coming August, they will make him happy and my wife and other son and I will get some time to sleep. Aware that Alex goes to a “school” where they do all they can for him – I believe this – and that it will not be anywhere near enough. Aware that I grew up in a world where they could spend on autistic people one way, and that I have stayed alive and now they don’t have as much to spend on autistic people. Awareness is a crock, a way for those who don’t understand to try to understand. They will be aware but they will never understand until it happens to them. Aware that Alex will never read what I write here and be mad at me. That I have signed him up for an after school program that’s available only to people who have a future in a world where “compassion” is a changing word. Aware that I have no way of knowing what bus he’s coming home on because I don’t have a sure way of knowing if his after school program is open today. I don’t know because they don’t tell me even if I ask, because they’re over there and I’m over here. That now when I say, “Hug for daddy, Alex?” the shoulders meet my chest and that I don’t have to bend over at all. That he will be out there in the world unable to speak or tell me what’s going on until my life is over. Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism(both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
Last night I sat on my deck and watched the sky play a game of cat and mouse with me. I wanted to be in a comfortable state of mind, so I had taken some pillows from our living room and heaped them in a corner of our deck. My sketchpad lay open, and I stared down at the stark white page. I am not an artist, but my fingers itched to translate the beauty of the sky into a visual feast on paper. Scrolls of cerulean blue, magenta, and deep ochre painted the canvas above me. Maybe the colours would leap to life under my paintbrush if I concentrated long and hard enough. I bent over my sketchpad, engrossed in getting the colours just right. How much easier it would be if I didn’t need a paintbrush…I imagined the colours magically falling from the sky and coming to rest on my page. Suddenly, the paintbrush came alive in my hand, and I didn’t look up until I felt the classic ‘aha’ moment. That moment when a little voice in the creative hub room whispers, You got it, baby… But while I had been struggling to capture the moment, the sky had shape shifted into something else entirely. By the time I had painstakingly created something that could safely be tacked to the storage-shed wall, the sun had dipped behind a bank of trees. The sun was gone, but it was a warm night. It held the kind of darkness that is strangely comforting. I was reluctant to leave my nest of pillows, so I waited for the darker, nighttime orb to take its place in the sky. The moon was smudged over by layers of gauzy cloud, and I basked in the stillness of the night. Inside the circle of the moon was a network of lacy webs, like the Spirograph patterns I loved to create as a child. The artistry took my breath away. Maybe the play of light was creating something out of nothing, but whatever the case, I was enjoying the show. It struck me that the moon didn’t choose to reveal breathtaking beauty. It didn’t labour in front of the mirror, for hours at a time, intent on showing itself to maximum effect. It simply showed up. Like a simple act of love. It arrives without any fanfare, and asks nothing of us. My thoughts strayed to my friend, and co-founder of Ideal-Way, Robert Pio Hajjar. Before the birth of Ideal-Way, Robert sat down with his Aunt Addie and Uncle Don. He took a plain wooden box from under his bed, and emptied it. Nickels, dimes, and quarters spilled helter-skelter across the smooth expanse of his bedspread. Together, they counted the coins out loud. Robert sat back and held his breath. His entire life savings, held out in the palm of his hand, for the sake of others. He figured it would be in the thousands. But the amount didn’t matter. He just knew that what he was doing was right. God had told him that his Aunt Addie was the perfect person to start up a company for people just like him. And he would be the first donor. As the last coin was deposited in the box, Addie Daabous held up her hand. “Attention, everyone! The final amount is…drum roll, please…Sixty-two dollars and five cents!” That was the beginning. The first donation to Ideal-Way. “Do what God told me to tell you. Start something for people like me. Make their lives better…because they can’t do it for themselves,” Rob said. As I sat on my deck, watching the sky transform from one glorious vision to another, it prompted me to think that I don’t need to work so hard to get things ‘just right.’ Maybe it’s time to leave the sketchpad at home, and just show up. Follow the lead of a Down syndrome man who didn’t struggle for one second with his decision to give everything away. Rob is a reminder to shine your light into every corner of your world. And don’t be afraid to offer whatever gifts you have. The beauty contained in a simple act of love will transform every life around you.