The journey of a train enthusiast on the spectrum of reality seperate-titus

IMG_0810Cooper is my 13-year-old son who Lindy Hops on the Autism Spectrum. I have written about him as a child and his rabid fascination with NJ Transit, not trains but Transit trains specifically. The one thing that you should know about Cooper’s different-ability is it is wildly specific. It’s not spaghetti its spaghetti with Pomodoro sauce from Daniella Trattoria in NYC (not an ad, but could be an ad, if you are willing to pony up a few plates of pricey pasta for him). Okay, I could spend an entire story catching you up on Cooper but instead I am going to jump to the recent iteration of what we refer to as “Life With Cooper”.

Cooper’s joy the last several months is “working” the trains whenever possible. He spent time thinking he could be satisfied traveling various train lines, some of which include but are not limited to: Trenton, Montclair State University, North Jersey Coast in New Jersey. Oyster Bay & Long Beach on Long Island and countless requests for Amtrak, although to date I think he realizes that this without tickets is prohibitive. Word has it he was permitted a ride on Amtrak from Newark Penn to New York Penn one day, but I think travel outside the tri-state area will have to wait. Now if you are thinking, what irresponsible parenting letting her son ride Transit without supervision, please stop reading and return to your perfect parenting, because mine is an imperfect household filled with the perfect understanding of our shortcomings. So, Cooper “works” for Transit.

Friday night lights, filled with horns and bells
The movement beneath his solid stance feels easy.
4632 to Bay Head making stops at…

Saturday runs to and fro starting with Les and ending with Randy
The rhythm of the tracks the only steady in his brain
7695 to New York City making stops at…

Sunday is reserved for morris/essex maybe multis or commons
The traps and the doors every task he will sharpen his skills
7920 to Dover making stops at…

Cooper and I were on our own a few weeks ago while Doreen and the girls were in South Carolina. We were in a nice routine together and he took time away from his busy work schedules to be with me at the theatre or at home, so the only time he “worked” was when we were riding back and forth on the train to my work. Wednesday night we were on our way home after the show; typically Cooper isn’t on Wednesday night trains because of therapies or school, but this week was special. The rules are always the same when Cooper is with me at theatre in the evenings, he leaves the Palace early so he can find out what track our train will be on and secure the first four-seater at the front of the train, on the top left hand side specifically, for me to sit in with his skateboard and back pack while he works. He loads his pockets with schedules and maps in homage to his heroes, the conductors. A few of these conductors are super friendly to Cooper, they give him old zone maps and let him help with the traps at the train doors, they are okay with him trailing behind as they check tickets or letting him announce the stops throughout the lead train car. Cooper carries my work flashlight at night so he can wave down the platforms to the ticket takers signaling the all clear at station stops, when instructed of course. The night before, Cooper sat with one young conductor having a pretty incredible conversation about engines, equipment, schedules and the recent cancelations. It was a really friendly conversation that made my heart full and proud. I guess you might say it was a parental high to hear your son, who doesn’t always know how to conduct himself in conversation, really engaged. On this particular Wednesday night I was in my seat early so I got to hear his exchanges with familiar people (and some not familiar) as they boarded the train. These were far more typical of Cooper’s interactions; some of the guys would ask, “how many stops to Orange?” and Cooper would quickly rattle off a response which includes what zone that stop is. Somebody got on asking if the train stopped in Newark Penn to which Cooper replied, “No, you need to get off this train and go to track 7 I believe that is where the train to Trenton is. This train doesn’t go there.” A lady across the aisle smiles at me as she hears men board the train with greetings of, “hi ya Coop?”, “how’s it going tonight Cooper?” Cooper will assume a voice of a conductor he spends a lot of time with, “how’s it going? Very good, very good.” Pretty typical stuff. This Wednesday  was a pretty crowded train so I was sharing my four seater suite with a few commoners that didn’t realize that I was train royalty because of my association to Cooper.

We were about 15 minutes into our journey, having just left Secaucus Junction, when I hear the actual conductor talking, he is one of the grumpier fellas, but I cannot make out what he is saying. A few minutes later Cooper appears in front of me, his brow furrowed in distress. “Can you come with me please?” He says in a low sweet voice. Knowing that this is serious I grab all my wares and Cooper’s skateboard and backpack and as I head back to the rear of the car after Cooper I continue to hear the conductor talking to someone. I punch through the door into the train’s vestibule where Cooper is standing on a trap looking out the window with his head low. I said softly, “did you get in trouble buster?” and he turned to me crying, lowered his head on my shoulder and said, “he took my maps, he said they were Transit property and I wasn’t allowed to have them.” I said, “Did you explain that you had been given them Buster?” The tears were coming harder when he said, “I want them back.” I was in a parenting pickle, I wanted to march up to the conductor and give him an ear full, but frankly the way Cooper processes information I didn’t want him seeing me barking at a conductor as a solution. I continued to comfort him and said, “Buster, obviously he doesn’t think you should have them and that they are Transit’s property. Do you want to go ride in the back of the train?” “No, I want to get off at Broad Street and Lyft home.” I hugged him harder and said that wasn’t going to happen, but we could sit in a different car. Suddenly the door opened behind me and it was the conductor he sees me and hands me the maps saying, “I didn’t realize you were on the train,” he recognized me, “here I’m giving these back to you.” He says handing me the maps, “but he shouldn’t have them, so he should put them away.” He went on to say, “I had my bag stolen so I saw those maps and you know it set me off.” I calmly said, “he was given those maps sir, he didn’t steal them.” “Oh, I know” he responds quickly, “it’s just there is another kid who walks around on these trains and he’s really crazy.” Referring to another kid that I see Cooper with who is also clearly on the spectrum. He then says, “come on now, stop crying, big men don’t cry. Stop.” Now I actually want to punch him, not only has he referred to a kid as crazy but he is now shaming my son for being upset. I can tell Cooper is trying to stop, wiping his eyes and nose on my shoulder so instead of letting loose on the conductor I say to Cooper, “Did you hear that Buster, he had his bag stolen and so he got mad when he saw your maps thinking they might have been his.” That ended the exchange and Cooper and I went to sit at the end of the car on benches until we got home. As we left the train a fellow theatre commuter, a musician, asks if Cooper is okay and said to me he tried to reason with the conductor about what a good kid Cooper is and how he loves the trains, but he wouldn’t listen. Cooper was quiet when we got home, he just wanted a bath and an ice pack and went to bed. His spirit was broken. I had no idea if I had done the right thing as a parent, I mean should I have said to the conductor; you know what, fuck you and your big man bull shit, he’s my son and he can cry if he wants to because you were a dick and took away his maps. Furthermore, if you had an aware bone in your fuckin’ body you would know that he is autistic and not “crazy” you douche bag… But I didn’t say any of that, I just didn’t want Cooper to think anger is the way to deal with problems.

This incident had me a little shaken the next day, I further advised Cooper to keep his maps low unless he knew the conductor was a friend. I also reminded him that the conductor from last night wasn’t bad he was just upset about his bag. I considered having Coop take a train break but that’s like suggesting a bull dozer go easy. So Friday that week off Cooper went on a journey while I was at work. Within a few hours he was calling me to report that his conductor buddy Randy had given him an up to date zone map for the Morris Essex line and he was thinking maybe he should give it to the conductor from the other night who had his bag stolen so he could replace his missing maps…

I think that’s my son displaying empathy or ready to show that conductor who was the real “big man”. Maybe, just maybe it was a parenting win after all.

Dear Cooper. I love you. Please read this letter. Mommy

Dear Cooper,

You are growing into a young man and I am proudly terrified. Please listen to me. You are a young black man and you are a target. A target for so much hatred and violence in this country. The people who loved you as a cute little boy don’t love you any less than they did but the people who never met you, the police that don’t know your good natured ways are going to look at you as a threat. Crazy right? You a threat, that’s impossible! Not my buster who loves watching videos and sitting in a hot bath (several a day), you’re definitely not a threat to anything but my water bill. My sweet Mommy’s boy that cuddles up with me in the mornings before it’s time to start our day, my train loving guy who wants nothing more than a trip with me on a NJ Transit train being pulled by an F40PH3C engine, my baby that I sit and watch sleep late at night and you will occasionally appear as your sucking a pacifier ten years after the “paci” is an option. These are not the threatening qualities that you will be judged by. Strangers will judge my big twelve year old boy with dark skin who demonstrates behavior that can be taken the wrong way by someone who doesn’t understand you have autism. A young black man riding his bike or his skateboard at dusk in the park is frightening to a racist. When some lady yells at you because while you’re walking through a parking lot and you look in a car that looks just like ours don’t talk back in your big loud voice because you don’t know why your being yelled at, “you didn’t do anything wrong.” That lady may  call the police who don’t know you and won’t know you have a 3DS, a few Pokémon cards and maybe some candy in your back pack and when you can’t make eye contact because you have a neurological difference called autism they may mistake that for guilt and then you say something that they don’t like because your brain actually cannot keep up with the situation and then they can say they thought that bey blade and it’s launcher in your backpack was a gun so they had to shoot you.

I will keep fighting for this obscene violence to stop. I will keep questioning shoot to kill, stop and frisk, excessive use of force; but in the meantime I pray that you will safe when I am not there to be your “white” sheild in this still sadly racist world where black people are often guilty until proven innocent… if given time to prove that innocents.

I love you buster and I wish I could just keep you trapped inside or by my side but you have the spirit of an explorer and that is so awesome. Know that Mama and I will never give up on you learning right from wrong so you stay safe in this world which still, with all the great progress that has been made, is far from created equal.

Mommy xo

 

Acceptance

This blog strikes close to home. While our son Cooper is “high functioning”, a diagnosis we are grateful for, we have been through the diner wars and The Mapleleaf Diner in our home town has not only been a safe space as a training ground for Cooper but he has also become a favorite diner there. We are far from out of the woods, just this last week while Cooper and I, accompanied by his sisters, went on a regular train trip Cooper became agitated by his lack of ability to control the situation and expressed himself too loud & a train customer decided to scold him as he disembarked the train. It took several hours to pull Cooper back together that day and the next train trip will be a tense one for me since I was never able to pinpoint his agitation that day.
I am grateful people are growing in their understanding of this disease, but I am even more grateful for people, including my friend Claire who wrote this original blog, to the people advocating for this puzzling disease.

A Project for Kindness

autism

When I began this blog nearly two years ago, it was with the intention of spreading kindness and sharing good news stories.  That has changed a bit, but I still like to share things I read about or see – I have been using my “Random Kindness Tour” button on my site, where I share videos or stories I find on the internet.  I have added a lot of them there.  Once in awhile though, something is shared with me that I want others to see and spread as well.

Today, a friend from college shared this link.  She has an autistic daughter and she is her biggest advocate.  I have learned so much about autism from her.  My nephew is “on the autism spectrum” as well.  This “What Would You Do?” story sheds some light onto the daily struggles families dealing with autism go through on a…

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