The Wrong Bus 

The phone rings at 10 to 4 on Friday. My typically developing son Ned answers it. “It’s Alex’s bus!” Ned says. “It’s downstairs!” 

Shouldn’t be. Alex catches a different bus from his school and that takes him to an afterschool program about 10 blocks away. Some 13-year-olds with autism could just walk those 10 blocks, but Alex can’t. From the program, another bus picks him up and brings him home at about 5 o’clock.

“Tell them I’ll be right there!” I say. “They’re not supposed to be here!”

When I get downstairs there the yellow bus sits, cars zipping down Fifth Avenue and ignoring her blinking red flashers. “I dunno,” the bus driver says. “They just brought all four kids out to us together…”

I call the unit teacher, who’s there almost two hours after school has ended. “Thank goodness you were home,” she says. “On behalf of the entire school staff, I want to apologize.” I call the after-school program to see if they were open and I didn’t miss some important flyer. The lady at the afterschool program utters the words that many who work with the autistic say when they hear “wrong bus”:

“Oh my god!”

Alex’s school has been getting this busing arrangement right for weeks. What happened? I don’t even think of asking Alex as he turns on his iPad, claps on his headphones and begins to watch Elmo. “What happened?” I ask the unit teacher a few days later, in the e-mail she requested. “Thanks for your understanding in the matter and I assure you that this will not happen again,” she writes back. Later, a teacher from Alex’s school calls; she was in charge of busing on Friday. She apologizes over and over.

I trust them – trust them more, I often think, than I’ll trust other people who will care for Alex in one way or another before I die. Slip-ups do happen. It was only an hour and technically it wasn’t even the “wrong” bus, but it does open a dark door.

“Ned,” I ask, “what would you have done if I hadn’t been home?”

“I would have gone downstairs and brought him up,” he says. Luxury, I admit, to have a back-up like that.

The dark door opens on stories of kids like Alex left on a bus long after hours, stories of kids who pinball down sidewalks while state police radio each other and strangers look on wondering why in hell someone doesn’t corral these people. Once Jill was on the subway with Alex when he sprinted to another seat at the other end of the car. Imagine if he hadn’t bolted toward a seat but through a closing door of the subway car? Imagine the glimpse of his back down the platform while the subway door slid shut in Jill’s face, trapping her in front of the window as Alex vanished up the stairs and into the endless streets.

I have no idea if my 13-year-old boy could get off the school bus by himself, walk through an apartment building lobby, press an elevator button, and come home. I like to think he could, but I don’t have that luxury.
Jeff Stimpson lives in New York with his wife 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) and has a blog about his family at jeffslife.tripod.com/alextheboy. He contributes to various sites and publications on special-needs parenting and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

This is a re-post from here. Not my writing, but I like a lot of it. I read it right after Curtis came outside to ask me what "no offense" means, which was difficult to explain. I'm still not sure he got what I was saying.

1)First of all I am a child.

I have Autism. I'm not only "Autistic." My autism is only one aspect of my character. Does not define me as a person. You are a person with thoughts, feelings and talents. Or you're just fat, skinny,  tall, short, short-sighted. Perhaps these are some things I notice when we meet, but this is not necessarily what you are. As an adult, you have some control of how they self-define. If you want to delete a feature, can be expressed differently. As a child I'm still discovering. Neither you or I may know what I'm capable of. Defining me by one characteristic only, ends up running the risk of keeping expectations that will be small for me. And if you think I feel that I can not do something, my answer will naturally be: Why try?

2)My sensory perceptions are disordered.
Sensory interaction may be the most difficult aspect to understanding autism. It means that ordinary senses such as hearing, smell, taste, touch, feel that go unnoticed in their day to day can be painful for me. The environment in which I live can be hostile to me. I can seem distracted or on another planet, but I'm just trying to defend myself. I will explain why a simple trip to the market can be hell for me: my hearing can be very sensitive. Many people may be talking at the same time, music, announcements, sound of cash registers, phones ringing, children crying, people coughing, fluorescent lights. My brain can not assimilate all this information, causing me a loss of control. My sense of smell can be very sensitive. If the fish sold at the fishmongers is not cool, the person who is close may not have had a bath today, alongside the baby may have a dirty diaper, the floor may have been cleaned with ammonia. I can not separate the smells and start to feel sick. Because my primary sense is visual. Then the vision can be the first sense to be super-excited. The fluorescent light is not only very bright, it flashes and can make a noise. The room seems to pulsate and it hurts my eyes. This pulse of light covers everything and distorts what I am seeing. The space seems to be constantly changing. I see a glow in the window, there are so many things that I can not concentrate. The fan, people walking from one side to the other ... All this affects my senses and now I do not know where my body is in space.

3)Please remember to distinguish between non-power (I do not want to do) and I can not (I can not do) Receptive and expressive language and vocabulary can be very difficult for me. Not that I do not listen. I just do not understand you. When you call to me from across the room, this is what I hear "BBBFFFZZZZSWERSRTDSRDTYFDYT John. Instead, come speak to me directly with a simple vocabulary: "John, please put your book on the shelf. It's time for lunch." This tells me what you want me to do and what happens next so it is easier to understand.

4)I am a "concrete thinker". My thought is concrete, I can not make abstractions. I play very little hidden meaning of words. It is very confusing to me when you say "Does not Suck," when what you mean is "do not bother me." Do not say "this is a breeze, it is piece of cake" when there is no a piece of cake around and what you mean is that this is something easy to do. Slang, jokes, double intentions, paraphrases, indirect, I do not understand sarcasm.

5)Please be patient with my limited vocabulary.
Saying what I need is very difficult for me when I do not know the words to describe what I feel. I may be hungry, frustrated, frightened and confused, but now those words are beyond my ability to express. So pay attention to the language of my body (retraction, agitation or other signs that something is wrong). On other hand, I can seem like a little professor or a movie star saying the above words of my ability at my age. Indeed, they are words I memorized from the world around me to compensate for my deficiency in language. Because I know exactly what is expected of me as an answer when someone talks to me. Difficult words that I speak from time to time may come from books, TV, or even being words of others. This is called echolalia. I do not need to understand the context of the words I am using. I just know I should say something.


6)I am very visually oriented because the language is very difficult for me.
Please show me how to do something rather than just telling me. And please, be prepared to show me many times. Consistent repetitions help me learn. A visual schedule helps me during the day to day. Relieve me from the stress of having to remember what will happen. Help me to have an easier transition from one activity to another. Help me to control the weather, my activities and meet expectations. I will not lose the need for a visual schedule to be growing but my level of representation may change. Before I can read, I need a visual schedule with photographs or simple drawings. With my growth, a combination of words and pictures may help later to know the words.


7)Please pay attention and tell me what I can do instead of just saying what I can't do. Like any other human I can not learn in an environment where I always feel useless and that there is something wrong with me. To try to do something new when I know I'll be criticized constructively or not is something I avoid. Look for my potential and you will find it. I will have more than one way to do things.


8)Please help me with social interactions.

It may appear that I do not want to play with other children in the park but sometimes just I do not know how to start a conversation or join in the fun. If you can encourage other children to invite me to play football or play with cars, maybe I'm delighted to be included. I am better in games that have structured activities beginning-middle-end. I do not know how to "READ" facial expression, body language and emotions of others. Thank you if you teach me how I should respond socially. Example: If I laugh when Sandra falls off the slide is not that I find funny. I just do not know how to act socially. Teach me to say: "are you okay?". 


9)Try to find what causes the loss of my control.
Loss of control, "tantrum", tantrums, bad creation, scandal, they are more horrid for me than for you. They occur because one or more of my senses was stimulated to the extreme. If you can find out what causes my loss of control, this can be prevented - or even avoided. Keep a log of hours, places, people and activities. Try to remember that all behavior is a form of communication. This will tell you what my words can not say how I feel my environment and what is happening inside. 


10)If you are a member of the family love me without condition.
Banish thoughts like, "If only he could ..." or "Why can not he ..." You could not meet all the expectations that your parents had for you and you would not want to always be reminded of it. I did not choose to be autistic. But remember that this is happening to me, not you. Without your help my chances of achieving a dignified adulthood will be small. With your support and guidance the possibilities are greater than you think. 


It helps to see my autism as a different ability rather than a disability. Look over what you think is a limitation to this and see what autism has given me. Perhaps it is true that I am not good at eye contact-to-eye and conversations, but you noticed that I am not lying, stealing, or  gossiping with classmates. It is true that I will not be a Cristiano Ronaldo "Phenomenon" of football. But with my ability to pay attention and focus on what interests me, I can be the next Einstein, Mozart or Van Gogh (they also had autism), a possible answer to Alzheimer's, the enigma of extraterrestrial life, etc.. - What the future has in store for autistic children like me is in their future. All I can is not going to happen without you being my base. Think about these social 'rules' and if they do not make sense to me, set aside. Be my protector is my friend and we'll see how far I can go.

Publicada por Ricardo Oliveira 

I haven't been blogging much since we've been settling into our new environment but a couple of autism related news items have caught my eye recently. First, 50 Cent is a jackass. Not that I expect a lot from a guy who tells gay people they should kill themselves, but I don't even know what this comment is supposed to mean:

"Rapper 50 Cent caused a Twitter uproar after he responded bitterly to an overeager fan on the social networking site, writing for his nearly 7 million followers, "yeah just saw your picture fool you look autistic." The fan had earlier jabbed at the rapper about his upcoming new record."

How does someone look autistic again? Never heard that one before. It must mean really good looking kids I guess. Probably not what he meant. In a rare move for the genius that is "fitty", he actually apologized for this one after feeling the heat of Twitter vitriol and one Holly Robinson Peete:


July 3, 2012

Dear 50 Cent,

Since last night my twitter timeline is flooded with tweets and retweets about a response you posted to someone who insulted you. When I read it my heart sank. I thought maybe your account had been hacked. No such luck. Granted, his comment was completely out of line but your retort: “i just saw your picture fool you look autistic”- was so so disappointing. I mean, that’s your comeback?? And you didn’t stop there. You went on to joke about not wanting “special ed kids” on your timeline. Seriously, THIS is how you use your platform of 8 million plus followers??

I’ve met you in passing over the years and I know you are a bright, astute businessman and legitimate philanthropist so it is with a bit of sincere confusion that I ask you… Do you even know what autism is? And what exactly does “autistic” look like? Do you know how wildly prevalent autism is? 1 in 88 have it. That’s 1 in 54 boys. Families suffer a social stigma you will never know. It is a financial and emotional drain for millions, so our non-profit- HollyRod Foundation works hard to raise funds to help these families cope…

I hope you can see how what you might see as a benign insult-or not- was so randomly hurtful, immature and misinformed. Maybe you are naive or indifferent as to how many of your fans might be deeply and personally offended by your insult. At the very least-can you please delete it? If you’ve read your mentions today I am sure you have felt the wrath of autism parents. We are no joke. Neither is autism. We are not about to let you attempt to make “autistic” the new “R-word” under our watch.

Finally, this is my son Rodney Peete. He has autism. So I guess this is what autistic looks like? He is in special ed. He loves rap music and is a HUGE fan of yours. He’s a tremendous kid. He has to deal with so much trying to fit in. This isn’t helping. Sincerely,

Holly Robinson Peete

In other news, check out the video below of the bus driver in New York who caught a girl falling three stories off an air conditioner. The girl is reported to have autism, to which I say 'no kidding'. Just seeing the confidence with which the seven year old is dancing on that air conditioner is enough to remind me of the days Curtis would make a mad dash to get in front of bus, walk off a ledge and that ongoing nightmare that he'd push out a screen and hop out a window.

So hat's off to you, Mr. St. Bernard. Heck of a catch regardless of the child's brain development.

For any kid, moving from the only home he has every known is bound to be tough. For a child with autism, the fear can be downright paralyzing. Luckily, Curtis is adapting just fine as we settle into our new home.

We didn't tell Curtis we were moving until we were reasonably sure. He came over to check out the house the same day as the home inspector. He came in, toured the house, and then retreated to the car where his lip quivered and he began to cry, asking why we had to move. However, we were still several weeks out from moving and once we broke the ice, we discussed the move and consequent changes at his pace when he was comfortable. Pretty soon, he was warming up to the idea and began to look forward to the move. He soon accepted the idea and here we are with a new driveway and the same types of roads that frequented our old driveway. So far, so good, and the family is doing great.

We also must extend a warm thanks to the McLaughlin's. The house we got it great, and it was at the high end of what we could afford. We've been looking for a few years for the right house in our neighborhood so we could keep Curtis in the school he knew and was comfortable with. When we saw this house we knew it was in but didn't think they would accept our offer; it was a little on the low end but all we could really afford. The house is beautiful and they probably could have gotten more for it. Ms. McLaughlin, who did outstanding work on this house, Googled our name when our offer came in. She came across this site and even though she could have waited for a stronger offer, she decided we were a family she'd like to see live in the home she thoroughly renovated and here we are. I think she wanted to help us out and a site intended to help other parents by alleviating some fears ended up helping us out as well.

Curtis has made the house his home with signature marking everywhere. There are highways in the driveway, the garage, the basement, and on the wood deck. His room is red. His mom has it set-up just the way he likes it. He was eager to help with the move and has a special office just for his activities. So we're here, in our first real home and we're busy with all that new home stuff. But we wanted to take time to throw out a quick thanks to the family who lived here before us. We hope you enjoy your new home and we promise to take care of your old one.

Greg, Dad