Opinion

Alex and I get into the elevator with a neighbor. Perfectly normal thing to do after the end of a perfectly normal day. The door slides shut and the neighbor says, “Five, please” when I ask what floor she wants. Then perfectly normalcy ends.

This violates my new rule of avoiding, if I can, elevators with neighbors when I’m riding with Alex. He still presses the buttons for a load of extra floors.

Alex presses three (not our floor) and nine (our floor). “Alex, press five, please.”

“Noooo!” he says. “Alex, press five.” “Noooo!”

Once, I would’ve felt the neighbor’s eyes on my back. I don’t this time. I try to press five and Alex grabs my hand; my other hand holds a grocery bag. “Alex, press five now.”

Noooo!

I could put down the bag and, suddenly needing both my arms for this 13-year-old, force his hand to the five button. I guess I still feel the eyes for a moment, though,  because I don’t force his hand.

We get to three. Alex dashes to the door, in front of the neighbor, and stares out. He curls the fingers of two hands to make his own 3.
Eventually we get to five. I forget how, but I may have pressed the button myself. “Have a good night,” I say to the neighbor. “Take it easy,” she says. “Take it easy,” Alex says.

Alex, walk this way…  Alex, press five, please …  Those times he doesn’t, I grunt like Basil Fawlty in comedic exasperation even as I know that whatever Alex is doing is no passing instant but the way things are and the way they’re going to be. I’m getting lain old pissed at the idea that not every parent has a son who’s going to have to be a grown-up amid the wreckage of our special-needs budgets. Some doctor put it best 14 years ago: “You’re at the mercy of everybody with an opinion.” At that time, I believed he was talking about just Alex’s year in a hospital. Now I think he was talking about the rest of Alex’s life.

What must people must think when they see Alex? I pity the parents. Why do they let him do that? Why don’t they find a home for him somewhere?

He has a home. The opinions we have of him there will do for now.

Jeff Stimpson is a native of Bangor, Maine, and 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 Lostandtired blog, 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.”

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By Jeff Stimpson

I tried to line stuff up for Alex this last Thanksgiving break. “The holidays book up well in advance – parents jump right on those school holidays,” said the lady who runs the overnight-respite program. I worked for months to get Alex into this program. I called her in early October about overnights through the end of the calendar year. By Saturday morning Alex was saying, “David’s coming? Rosa’s coming? David’s coming?” as he slipped on shoes, hoodie and backpack. “Take a walk,” he said. “Wanna walk!” David and Rosa are “companions,” I guess you’d call them, if like us your son was too old for a “babysitter.”

Autism doesn’t take a four-day weekend. By the morning of Black Friday, Alex was bored out of his mind. He didn’t want to do letters with me, didn’t want to pick up his room or put laundry away (jobs he usually throws himself into). He yelped  into his iPad. He wanted to go out, hour after hour. I took him out; he wanted to go out again immediately after we come home, preferably with somebody besides mom or dad.

The big hope for Thanksgiving Break was overnight respite, a terrific program in which guys like Alex are taken by their weary fathers to a nondescript apartment building on West 95th Street near the river, past the security guard who takes one look at Alex and says “Sixth floor,” and up to a three-bedroom where Alex could stay for days and nights, gaining his independence while his mom and I catch up on our sleep.

Alex crapped out of this program last spring by bolting. Then the supervisor worked with me to let him go there for daytimes during the last week of August. He did well. So well, I guess, that the second morning the supervisor called me and said they could take him for four days, until Labor Day eve. I was tempted but he wasn’t ready, I told her. From that offer I came away with the idea that holidays are clear for vacancies in overnight respite; I come away with the idea that most families with autistic children have better parents than Alex does.

Parents jump right on those school holidays. “What’s Alex’s schedule in February?” the supervisor asks. I see that adult programs take finagling, unlike the children’s programs that Alex often just slipped into. Programs for grown-ups – the kind of grown up Alex is becoming – requires thought, planning, more thought, and a frightening amount of plain old luck.

Jeff Stimpson is a native of Bangor, Maine, and 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 Lostandtired blog, 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.”

Strike

By Jeff Stimpson

Friday at about 3 p.m. I got word that all the yellow school buses in New York might strike. A parent coordinator emailed me the letter from the NYC Department of Education:

“We are writing to inform you of the strong possibility of an immediate system-wide, and in our view, illegal, strike by our bus drivers’ union that could impact yellow bus service for more than 152,000 students citywide.” As usual with strikes that could affect me, I don’t understand the thorniest issue. It seems to have something to do with bids.

“Any idea when this could take effect?” one parent wrote. “This is a huge problem for us as my son (with an IEP) travels over an hour each way to/from school by bus.”

“Someone just called from my son’s school and said they are very concerned that it might take place within the hour,” wrote another parent at about quarter to two Friday afternoon.

I’ve been a special needs dad for almost a decade and a half, and “within the hour” wouldn’t have surprised me at all. I called Alex’s bus company about 3 on Friday afternoon. They didn’t answer; they’ve answered all year.

Both sides slung mud into the weekend. The mayor of New York – a rich man who’s recently caught flak for his orders to the police regarding Occupy Wall Street – held a press conference Friday afternoon and said Metrocards for mass-transit rides to and from school would be available to parents in the amount of, said the mayor, “If I remember correctly, four dollars and fifty cents.”

(If I remember correctly!? If I depended on votes past or future from a squeezed public, this is one number I’d always keep in mind. Perhaps the comment helps explain how we wind up with these strikes in the first place.)

The DOE regrets “the possibility of what could be a major disturbance in the lives of students and their families.” If by that they mean Alex might be home all day, I agree.

He won’t be. One advantage of living in Manhattan is that mass-transit is what it should be in most of our cities, and I’ll take him and bring him home (one disadvantage of being 50 next month and having worked in publishing being that I’m now unemployed).

What’s Alex going to feel if a bus doesn’t show up on Monday morning? On the iPad, he watches a “Sesame Street” segment that has a school bus over and over. He has always loved school buses, grabbing the little ones in toy stores.

Alex doesn’t know strikes. (“Can you spell ‘strike’?” I’ll ask him on Friday evening. “Can you spell ‘strike’?” he’ll reply.) The bus brings him home on Friday around 4, just like normal, and I mean to ask if they’ll be there on Monday? Except an ambulance is blaring right behind the bus. The bus pulls out quickly and the ambulance goes just halfway down the street and stops. Just halfway. The little guy sure gets squeezed in this world.

Jeff Stimpson is a native of Bangor, Maine, and 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 Lostandtired blog, 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.”

Letter Perfect

Letter Perfect

By Jeff Stimpson

First my 13-year-old son Alex (PDD-NOS) peeled and stuck the gold letters; they came about two hundred to a 99-cent pack, available in the hardware or stationary aisles. Actually, first of course it was the shape-sorter a lifetime ago, which Alex once played like Roy Clark once played a guitar. The shape sorter, they assured us, meant that Alex had a real affinity for letters.

I scrape an O and a D and an N and a 4 and 2 off the wood of our living room floor. they come up hard, bitchy little things alex tossed there after he peeled them off the tv to make way for new words. alex does his composition on the front of the television, on the set’s frame right above the screen. he carefully makes four five, six. why would he stick those up there? we wouldn’t mind except he’s in the way during shows (“alex, move!!”). they come up a millimeter at a time and then they rip. worse is the backing, the sticky black crap that’s left over after he’s peeled off all the letters.

These are half-inch peel-&-stick letters in block Helvetica. He seems to favor the F’s. We get these at Staples for about $5. One of his friends bought him an assortment of multi-designs, too: “This package contains 133 letters, numerals, and punctuation marks,” the wrapper reads. Some 100 of them will wind up stuck to our living room floor.

A long time ago, Alex’s teachers told us not to let him write with markers. “They make a mark no matter how much pressure you use, and we’re trying to teach him to apply pressure,” they said. “Make him use a pencil.” Sound, but one of his friends who seems well-versed in helping people with autism said he had no problem with letters, so we continue to buy them. this friend has also taken Alex on bus rides and outings, and has helped Alex use the black letters to write where he’s been: APPLE STORE FIX I-PAD; RIDING A BUS; TOMORROW WE GO SWIMMING; NEXT WEEK WE WILL RIDE A BIKE. The friend writes these words in pen, and Alex matches (shape-sorts?) the black letters to match the words.

Do these sticky letters help Alex? Forward his understanding of language? No idea, but it’s a cheap treat, and maybe someday he’ll  peel off the black Helveticas one by one and tell me what in God’s Name is going on in there.

Jeff Stimpson is a native of Bangor, Maine, and 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 asAutism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, 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.”

Seize the Day

By Jeff Stimpson

 

“Could you give me a layman’s description of what’s happening in his brain when he has a seizure?” I ask the neurologist while Alex (13, PDD-NOS) scatters the pieces of the pre-schooler puzzles across the carpet of the doctor’s office. I have a vague idea of what’s happening in the skull of my son, but after all I’m almost 50 and have no job and my insurance is making me take the generic version of Topomax and not the name brand, so it’s best to get a confirmation from someone who probably has a vacation home.

“It’s basically a lot of excess electrical activity, isn’t it?” Yes: cxcess electrical activity that made me pant “Alex! Alex what’s wrong, Alex!” in the dark of his bedroom a week before while Ned looked on and probably, deep down, wished he’d been born into some other family.

Alex is 5’2”, almost 90 pounds. “Big, healthy boy,” says the neuro, who has just listened to Alex’s heart and lungs after prying him away from the puzzles. This doctor has a lot of stuff to keep kids much younger than Alex – and Alex himself, it seems – entertained. This doctor is sensible. There’s a test, for instance, where somebody like Alex goes into a hospital for 48 hours and has electrodes glued to his head. This is meant to measure brain activity, even if in only a snapshot. They discussed this test seven years ago, and I kept picturing and still keep picturing Alex peeling off the electrodes as fast as some sighing nurse can stick them on. “It wouldn’t work with him,” the neuro says, “and even if it did it would only tell us at best that he’s prone to seizures again, which we already know.” I appreciate this wisdom.
He puts Alex back on a small dose of Topomax and says to increase it slightly in the days ahead and to have Alex’s blood tested in a few weeks. He also prescribes Diastat, a valium syringe (Diazepam rectal gel) that will stabilize Alex for transport to the ER should he get what Fred Sanford used to call “the big one” when talking of heart attacks and go into convulsions. We would inject it into Alex’s rectum. Under my insurance, the co-pay for Diastat – two syringes (his and hers?) – is $252.

“Is it a syringe or a gel?” the insurance company rep asks when I call to confirm the co-pay. In the current insurance world, hundreds of dollars that I’m not earning hinge on the answer.

Almost seven years since the last seizure (“That we know of,” the neuro stimpulates). This week was consumed by calls to the company/ corporation that handles my new and rickety insurance “(“Thank you for your business!” is how they end one call), and by calls to doctors for rush appointments, and by calls to pharmacies for prescriptions that are suddenly high.

“Over the next 10 years, he may never have another seizure,” the neuro says.

I hope that around 2026 we find the $252 syringes dusty and forgotten in the back of a closet. Jill says that if the seizures continue, however, long before then she may have shot the valium up her own rear. All I can say is that I’m glad there are two syringes.

 

Jeff Stimpson is a native of Bangor, Maine, and 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, Fatherville.com, and The Autism Society news blog. He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

From Out of the Dark

By Jeff Stimpson

I’m on the floor of the boys’ bedroom about quarter past nine, listening to the iPod and sipping red wine like any other good dad when I notice Alex’s arm over the frame of his bed. I reach up to put his arm back into a position more comfortable him to sleep when I feel his weight come against my hand and I figure he’s falling out of bed until his head appears and starts to dip toward the floor. Then his body tips out with all the bedclothes and he cascades, limp, almost on top of me out of the bed in the dark.

“Jill, Jill!” I scoop him up – much as I can “scoop” a five-two kid who’s pushing 90 pounds – and hold him as a silver thread runs from his lips. He trembles; his knee muscles fold like dough.

The last seizure was almost seven years ago. During the last bad one then, his head locked to the right. His head’s straight ahead here, but his eyes stare dead. “Alex? Alex!” He will not come back to my voice. Jill and I check all the signs of respiratory distress. He hangs there.

The yardstick of his growth that I was taught to follow was his lungs: He’ll grow, they told us years ago, his lungs will get bigger, and he’ll kick the oxygen tank and canula. And he did grow, and he did kick. His brain’s a tougher sell than his lungs, I guess.

Jill keeps a clear head. “Keep him upright. Ned, go out and time this.” Even I realize, my own breath coming short, that she tells Ned to do this to get him out of the room. He doesn’t leave, though. “We learned what to do in sibshop,” Ned says. “Keep him upright and time it and call 911.” Jill notices that Alex is hot and that heart is hammering. I hold him in the dark while Jill and Ned are in charge.

Seven years: more than half of Alex’s life, long enough for the brain to have caught up with the lungs if it was ever going to, and long enough for a dad to learn to live with as stable as a life as he can when his son’s autistic but at least seizures are behind him. I like to think things move ever forward in this life, but lately it’s hard to think that way.

My arms feel him return after a few minutes (“About five minutes,” we’ll tell people later – Ned never did get out of the bedroom to time it – and when their eyes go wide we’ll revise the time downward.) Without so much as “Thanks,” Alex snuggles down to sleep and is soon cooler and his chest rises and falls with even breathing in the dark.

Jeff Stimpson is a native of Bangor, Maine, and 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, Fatherville.com, and The Autism Society news blog. He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

Perfect Vacation For A Child With Autism

As individuals we  look forward to having a perfect vacation. We are often looking for the perfect time which typically is having the best weather, food and activities. As a parent of a child with autism we have the same desire but we also desire few disruptions, schedule changes and outbursts. At times we are nervous to go in public or meet up with people who don’t know our kids for fear that they will do something that dare I say embarrass us.

Two weeks ago we went on the perfect vacation. The weather was OK, the food was nice but we had an amazing time. You know why…. because we were at ease. Our son Collin is not severe by any means but at times can do things that make us cringe. What made this trip go so well was that we were surrounded by friend who could care less that Collin has autism. What makes this group so special is that they embrace him, never stare and flat our enjoy his company.

The don’t care that he flicks a sock while listening to baby Einstein. They don’t care that he will eat all the bacon for breakfast or that he literally puts Ketchup on his Ketchup when he eats burgers and fries. What they care about is that he has fun. They treat him like they would any other child and that makes us relax and smile. At first I thought that they did it because they wanted us to be comfortable but then I realized that they truly love him and enjoy his company. Sometimes I think that they like him more than us.

It is amazing that since we met this group over four years ago, our life has been so much happier. No longer do we worry about anything that Collin does because chances are if you have been around us you will see that at all times one of us is doing something that makes Collins behavior minor …. and that makes Collin smile.  He is more engaged at the beach trip than during the rest of the year. We wish we could replicate that feeling for him every day.

So it is not always about the perfect house, beach, weather of food, but it is about the perfect company and I can tell you that hopefully you are as lucky as us.

Oh and if you happen to be next to a house where 10 people are chanting Nachos, Nacho’s Nacho’s next spring break… be sure that it is us and Collin started it!!!!!!