A Pocket Full of Rye

Travel Training

Another great post from author Jeff Stimpson. Please visit his blog at www.jeffslife.tripod.com/alextheboy.

My son Alex (13, PDD-NOS) and I took a long subway ride the other day, on a slow local train through The Bronx. We sat on a hard plastic seat for an hour not looking at other people, studying shoes and pants-legs, either reading something we brought or watching the tunnel lights and the streetscapes drift past the windows.

 

One big agency here in New York is celebrating something like 75 years of travel training for adults with developmental disabilities. Teaching them safety and how to ride and read people and pants-legs, how to ride in the center of the subway train late at night, how to look over your shoulder when the world is a harder place to understand than it even is normally.

 

 

Alex sits, picks a scab, doesn’t pick his nose too much. As the train makes stop after stop after stop I scan shoes and sneakers and pant’s-legs and crotches under the bill of my baseball hat, listening as well for anyone who might get a snicker out of Alex, or, to be fair, who might look at him with that expression that says I work with people like him or My son, too.”

 

 

My wife Jill thinks I just have this thing about Alex bothering other people, like when he was younger and would spin around on his seat in the coffee shop and reach and shout toward the people in the booth right behind us. “If this is the worst thing that ever happens to them, they’re having a good life,” Jill used to say. She didn’t understand that it wasn’t so much that I cared if post-toddler Alex bothered people, but that I wanted him to learn that he lived in a world with people and that there were some things you didn’t do. Just like now he has to learn how to ride a subway in a crowded city.

 

 

Alex has, mostly, learned that. I no longer have so many nightmares about him bolting out the door at a stop, disappearing down the platform while my hand that lunged for his collar grasping only empty air. (He just got turned down by an afterschool program because of his bolting.)

 

 

He spends this hour yawning, coughing – he might be coming down with something; fellow subway riders love that idea  – and craning his neck to look out the window behind him. On this train today, a baby starts crying. I look at Alex. Sometimes he starts laughing when a baby cries. But I think he doesn’t mean that the way some people would.

 

 

“Alex, cover your mouth when you cough.” “Alex, cover your mouth when you yawn.” You see, he’s autistic but still I’m trying to teach him to be a good citizen. Is anyone even looking at me?

 

They looked once, I remember. We were headed to Coney Island, another hour-long trip. Alex couldn’t’ stop giggling. A toddler can get away with giggling for half an hour across the traincar aisle from two teenagers; a skinny little kid who needs his first shave, however, can’t. I think I heard teen ask, “What’s so funny?” and also I’m pretty sure I heard the R word. I guess I was supposed to throw them both off the train.

 

 Alex might never travel alone. About the closest he’s come is bolting from a playground a few years ago and winding up in the Central Park Zoo ten blocks south. I know most people aren’t like the teenagers with their R word. I know most people would be kind. I just don’t know if Alex will ever be able to figure out how to travel a road alone.

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.”  

 

My Prince

Jacob is full of witty bon mots this week (consolation for some really frustrating behavior), and he came up with this little gem before bed last night:

"Mom, will you go to the castle and be my princess?"

I DIE.

And he means this castle.

What is it you say? Taking a small boy with autism and anxiety to a packed theme park in the middle of summer is a bad idea?

WRONG ANSWER. And when we go, he and I will skip and and sing and jump into each others arms while singing "A Whole New World." Disney World is The Most Magical Place on Earth where nothing bad happens and our family's not going to be the ones to ruin it. Right? Right.

However.

I want to turn a blind eye to all the red lights standing between me and my sweet boy having his heart's desire for his birthday.

HE ASKED ME TO BE HIS PRINCESS, MAN!

One of the small advantages of living in Florida is that we're only a relatively short car trip away from Disney World at all times. There is no plane to pay for and endure, we could spend a short weekend and it's no big deal, and James and I both have good friends in the area (with families) if shit hits the fan.

J boy's birthday is about six weeks away, so we still have (some) time to decide. Meanwhile, I''ve been scouring sites like www.allears.net  to see if we can make the trip as enjoyable for everyone as possible. I know we could have a great time!! Just maybe not six weeks from now.

All Work, All Play

J Boy's feeling particularly put-upon this week. That's fine, I feel the same way sometimes. Among his list of complaints:

His mother has banned Trix from the house. Considering that it's one of the only foods he derives any pleasure from, I can understand. However, my mounting displeasure at his demands for six Trix meals a day only left me one alternative: banishment of said poison from the house. 

His parents are using birthday bootie against him, and winning. J Boy left his counsins' birthday party last week with A LOT of pinata loot (people love giving the strange little boy a leg up in the competition). Rather than throw it out, as we tend to do once it moves to the back of his mind, we've been bribing him to eat real, actual, recognized by the FDA food. Oh, how he resents having a lollipop dangled in front of him; he is downright pissed when he actually stoops to eating some oatmeal or chicken nuggets to get it.

School keeps happening. Why doesn't it stop? I'm sorry son, but you'll be going five days a week, about 48 weeks a year for the foreseeable future. It's a drag, I know. But you know what sucks more? When your teachers have to peel you out of your carseat kicking and screaming and drag you inside. I actually do not feel badly for you on this one; I feel badly for myself, your sister and your teachers because you come closer to puncturing all of our eardrums as the school year goes on. Just stop already.

Alligators don't wait for him. My grandparents told us a baby alligator has been visiting the lake outside their condo. Awesome! J Boy loves to tell us alligators live in lakes so we went to go see it. Not only was it not there, but we didn't see turtles, fish or anything else. His life was over. It was the worst thing that ever happened to him and we had the audacity to demand that he GET IN THE HOUSE NOW, FOR THE LOVE OF CATS, STOP BEING ALLIGATOR BAIT. Now it's all death and taxes for him until the end.

It's hard knowing more than the people in charge. I've felt like that at oh, every job I've ever had. Lessons in obedience are excruciating for him and frankly, I don't think they'll kick in for another few years. At that point I'll be a contender for the wrestling competition at the 2016 Olympics from "gently guiding" him through activities he's throwing himself on the floor and screaming over. ABA rules!

WOO HOO!

Made it onto Alltop!! For those of you who don't know about it, it's a great resource to find blogs on practically every topic you can think of. Check us out on the Autism page and browse around a bit to find some pretty awesome and talented bloggers you probably wouldn't find on your own. Happy surfing!

How To Be Brave

I often wake up in the morning with mild anxiety weighing on me, only to realize it's outlived it's purpose. It's hard to shake. It sneaks up on me while I'm driving J Boy to school, attacks me as I look through our mail, and bathes my brain in gentle waves while I'm trying to go back to sleep in the middle of the night. James tells me everyone deals with it and he's probably right, but I've settled into a routine of self-talk to remind myself that we survived the storm. We're still here, still together, and for the first time in a long time the future looks bright.

Our first years together were bad. It wasn't our relationship, really. It was that the bottom fell out and we were two people with our hands clasped together on either side of the chasm where our security used to be, trying to keep ourselves and each other from falling in. The recession hit us, so hard, and we were old enough to have briefly held our ambitions in our hands and young enough to not be able to pick them back up very easily. I've mentioned before that I quit my job as a reporter because I couldn't afford the daycare or the time away from J Boy, and guess who never got back in the saddle? My former employers frequently asked me when I wanted to come back, and I was planning to, but major layoffs happened at exactly the time when our lives rearranged themselves so I could. James continued working for that company and we were terrified he'd be called into one of the "state of the company" meetings at a local hotel to find he was out of a job, too. It never happened, he was lucky enough to be one of the salesmen who stayed and watched his commissions shrink and shrink and shrink until some months there wasn't one. My mother had to sell the business that provided me with part-time work and free childcare, and so all of us were plunged into a crisis that now surpassed our new little family.

Oh, and we had a toddler at home who I didn't understand. He had a fascination with Harry Potter that was baffling, wasn't talking, wasn't sleeping, wasn't playing or finding trouble. His new pediatrician flat out told me that he needed to be evaluated (wasn't that why we switched doctors to begin with?) and I ignored her. I just couldn't sort through the imminent destruction our family was facing and think about that, too. A few months later, I wasted precious time with worthless "professionals" and their pointless "therapies" and wondering what would happen to him if we ended up divorcing.

And all this time, I didn't realize how brave we were being. How I swallowed my pride and took a crap job far below my paygrade because that's what I needed to do. How James sold the shit out of some advertising at a job he despised and kept going to work a second job at night and not come home until midnight four days a week. How we gave up every miniscule little pleasure so we could save money by growling at each other at home. How we fought and fought and fought and still came home and woke up the next day to continue to be married. How we fought the wolves at the door and told people to piss off who deserved it, because our family couldn't be concerned any longer with the crap they were dishing out. How I spent my days trying to untangle our affairs. How eventually we looked at our prospects and decided we were going to take some dramatic steps that would save us and our kids so we could eventually get up every day knowing there would be more good to come.

And now the sun is shining, the tank is clean. J Boy is doing beautifully and there are no assessments to dread, no immediate action that needs to be taken. My family is healthy, everyone is closer to happy than ever. We finally have some mental space to sort out what we will do to make a full and happy life for ourselves.

What did I learn from this? Nothing sorts itself out. The best laid plans often depend on circumstances I can't control. And courage is found in the mundane and sometimes harrowing battles you fight with yourself.

 

Tip: we found a way to get J Boy to take some of his medicine that might help some of you.

Be aware, it requires some wrestling and outrage on his part.

Many over-the-counter medications come in melt-away form. We crush it, put in in a spoon or other narrow device (the large straws from insulated cups work well, too), and funnel it into his mouth while James holds him down. He can't spit out the powder and it dissolves quickly while he's busy being angry at us.

I know we're not the only parents who have to wrestle with their kid for their own good, but it still makes me feel bad. However, the satisfaction of knowing that he can't choose to harm himself anymore by letting a fever get out of control, or worrying a stuffed nose ALL NIGHT LONG, or crying that he "doesn't like to cough" outweighs the guilt I feel. J Boy's been struggling with seasonal allergies lately and he feels the worst outcome of being sick is taking medicine. For me, it's being up all night with him because he can't stop coughing or his sinuses are so congested he can't breath through his nose. We were looking at a third night of this after indulging him for the past few days until I squashed my sympathy for him last night and told James it was happening one way or another and it was probably going to be ugly. In the past, we tried hiding all his medicine in his food but he's wise to us and insists on choosing from the kitchen what he will eat and avoids all likely culprits for camouflage. We'd also wheedle, cajole, bribe, threaten; we even went so far as to hide chewables in a bowl of smarties hoping he'd unwittingly eat one.

Now if only we can figure out antibiotics without wasting half the bottle.

With No Doubts, I'm Afraid

Another contribution from author Jeff Stimpson. Hope you enjoy his writing as much as I do.

PFR

 

I recently got a question from a Twitter Follower: “Is there a specific reason you prefer ‘my autistic 12-year-old’ versus ‘my 12-year-old with autism’?”

Yes. "Thank you for the note," I replied. "I've long considered your point interesting, especially since I've heard that the adjective isn't viewed as positively as the phrase 'with autism'."

A pretentious beginning, but the right tone.

“Part of the reason is the space limitations of Twitter and Tweets. I also found when I started on Twitter that ‘autistic’ tended to be a better searchable word than ‘autism’ if one was looking to be found. But the major reason, I think, is that I feel autism is in front of my son, blocking the boy behind it. ‘Autistic’ has a harsher sound, I think, than ‘with autism,’ and sometimes in the frequent struggle that is parenting Alex, I feel harsher sums up the situation more clearly.”

The guy wrote back that I owed him no explanation, and “as the parent of two children with special needs and as someone involved in the special needs community, I find myself ‘correcting’ the media when they use certain terms improperly. I absolutely respect your wording and the meaning behind the statement. I have always found this a great resources to pass along: http://ncdj.org/styleguide/ . By the way, I am working on launching the largest online resource and community for parents and caregivers of children with special needs. Let's stay in touch and I wish your family all the best.” That was pretty classy – and if he’s got two kids with special needs, he owes me no explanation!

I understand “people-first” language and the theory behind it. It’s the person, not the affliction or condition, you’re dealing with, conversing with, talking to, trying hard to understand and fit into your vision of the world. And that when you’re talking to someone who isn’t your kid, someone in whom you don’t invest one of the most terrifying of human loves, then maybe “people-first” is the language of progress. I hope that everyone speaks to Alex in “people-first” language in the time of his life after I’m dead.

I wish I had room in the father-son connection for the language of progress. I stick by “autistic” because it is the language of clarity and honesty (and, as a friend once said to me when Alex was still an infant imprisoned in a hospital, “You’re the father – you’re allowed to be a son of a bitch”). Autism stands between us when Alex, 13, rock-walks down the sidewalk, darts into doorways, punches four elevator buttons on what should be a straight shot between the first and ninth floors.

It’s not Alex I address when I talk to him, but autism. I’ve never met Alex. I’ve met his autism, which has always barged ahead, elbowing aside all others and insisting on shaking hands first, like a real self-centered son of a bitch.

 

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. His first son, Alex, 14, was born three months premature, spent the first year of his life in the hospital, and has since been diagnosed with autism. Ned, 11, is typically developing; he loves Nerf guns and his sibshops, where and other siblings of special-needs individuals discuss having brothers and sisters with autism and other conditions. Stimpson 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 atjeffslife.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, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

Anyone Have Something to Say About this Little Nugget?

Hell, I'll come out and say it. I think pitocin is to blame for J Boy's autism.

I know, no one knows the reason some children are autistic. Bite me, I'm busy using my mother's intuition and have always wondered whether my crappy OB/GYN was to blame.

I have never, until now, found a possible "cause" for autism that corresponds to J Boy's circumstances. He was not a low birth weight baby, our families don't have an unusual history of mental illness, I took pre-natal vitamins and avoided mercury-laden fish. I'm not even going to approach the vaccine question, though we did use a modified schedule.

I just can't look at this information without my heart racing. Every time I read it I feel like my brain is glowing. Is that weird? It is.

Call it intuition or call it stupidity, but the fact of the matter is that I had two very high doses of pitocin when J boy was induced and two rounds in my epidural. I've always regarded the circumstances of his birth with resentment and bitterness; Jacob's entry was dramatic and I've never stopped being upset about it. The reason my doctor gave me for being induced in the first place was bunk, according to the doctor I used with J Girl. The first round of pitocin was stopped because of fetal distress and no progress; I was supposed to be wheeled in for an emergency c-section within the hour. Instead, ten hours passed and in the meantime I was given the second round of pitocin. The logic behind this sequence of events is hard to find. If it was an emergency because the staff kept losing J Boy's heart rate like they said, why wasn't he cut out when they first made the decision? Why instead subject him, AGAIN, to a procedure that was obviously not working and quite possibly causing him harm? When the induction was obviously not working --- I never dilated past four centimeters --- why couldn't they just stop? Is it an all or nothing proposition once you artificially start labor? I don't know, but I do know I had no reason to be in labor in the first place. J Boy's due date was still four days away, he wasn't abnormally large, his placenta was in the beginning phase of insufficiency but apparently that's normal at 39 weeks. My doctor had not checked my cervix once (sorry to be graphic) during the course of my pregnancy, not even when he told me he was scheduling an induction later in the week. In fact, he told me at my very first appointment that I would have a c-section. Funny how that happened.

There are a few theories for why pitocin can cause autism. One is that it down-regulates the fetus' production of oxytocin by flooding his body with a synthetic replica. Another is that pitocin causes unnaturally strong contractions with shortened intervals between them, hence the FETAL DISTRESS many babies suffer during labor. I know J Boy had a tough time bonding and breastfeeding, two processes that rely heavily on oxytocin. I had terrible post-partum depression, another circumstance that is linked to oxytocin. 

Stumbling upon this information has forced me to re-examine this experience in a new and devastating light. If eventually it's proven that inducing birth can lead to autism, it means I was complicit in causing my son's disorder. The fact is that I knew my doctor was a jerk and I trusted him anyway. I didn't object to his amateurish performance in the hospital, even though I knew things weren't adding up. I am not someone who sets my heart on having a magical birth experience; I just want my baby to be delivered safely according to what the circumstances require. Overwhelming evidence suggests, some of which I haven't included here, that J Boy and I weren't exactly the priority in that birthing circus. Pair the rise in autism over the last decade or so with the increased rate of inductions  and you have a very interesting correlation.

I am in no way suggesting that using pitocin is the only cause of autism or will certainly result in an ASD diagnosis. It's a complex disorder with seemingly complex origins. I'm just saying, no other shoe fits. And it's not exactly as if I'm jamming my toes in like I try to do when other research pops up its ugly head. It seems that these days the medical profession is preying on women's natural concern for their babies and a societal habit of implicitly trusting the people holding the M.D. Of all the women I know who have had babies the last few years (trust me, it's a lot), I can think of only three who were allowed to go into labor naturally. Doesn't this mean something? Hopefully, none of their children will turn out to be autistic or otherwise compromised. Women (read:me) aren't paying attention to this problem and not using their authority as mothers and paying customers to get the care they deserve. 

Miracle of Miracles

We ate inconspicuously in a restaurant last night. J Boy did an excellent job and was not overstimulated or anxious in the slightest. Even the wait for a table went smoothly and he showed us excellent manners.

I'll wait while the applause dies down. He deserves it.

James came home to me dying of a head cold and cabin fever so he suggested we go out to eat. Typically, I'd say no thanks, but Saturdays tend to be looooong, boring days when James is working because after the grocery store fiasco, I am really reluctant to take the kids out by myself. The kids had been so good all day so we chanced it and were rewarded with not only J Boy's good company, but also Thing 2's relative compliance.

I think my babies are growing up. It makes me teary.

To be fair to J Girl, she's almost always a treat when we are out. And she really likes salsa, so that bought a good 25 minutes of quiet before the food arrived.

Have you ever seen a toddler have something mildly spicy that they can't stop eating? It's pretty funny to see such a blatant lack of self-control.

Top 5 Reasons to Not Sell Your Toddler on the Black Market

After J Boy and I suffered through forty minutes of screaming and wailing and a great gnashing of teeth from his sister on the way to school today, I need this exercise to remind myself I love her. 

Lindsey, you love her, you love her, you love her.

That helped.

 

    Somebody do something about this child.

 

Has anyone realized that a car is basically a sound chamber? You can really have a thorough and nuanced experience of your child's agony. Not to mention clear understanding of her vocal range and breath control.

 

Here we go.

5. They are cute. Does anyone else in your house have those glossy round cheeks and plump little lips in your house? No. And it's a ploy for compliance.

4. They are audacious. J Girl's new trick is to lean against the couch and say to her brother "My coach." After a spirited round of what belongs to whom, she upgrades to "My daddy/mommy," and effectively sends her brother into a tailspin. Mission accomplished.

3. They point out your flaws. After noticing we had some dirty dishes in the sink, she decided to cram all her play food and utensils into the sink in her kitchen. It would barely hold a bowl of cereal, so it was really a more life-like representation than I appreciate. Maybe this is a reason to unload her.

2. They make you appreciate your older children more. Does J Boy overturn anyone's glass to see what will happen? No, he knows what will happen and is not interested in the consequences. J Girl, however, is fascinated with the consequences and (I'm pretty sure) likes to see how I react.

1. They give you opportunities to exercise virtue. Oh, how I would enjoy losing my everloving mind a few times a week. Do I? Yes, but only on the inside. Or in frantic text messages to James and my mother. 

And let's be honest, white slave traders would hand them back after about 24 hours anyway. Wouldn't you if you unwittingly bought a two-foot-tall psychopath?