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.”

Autism Night Before Christmas by Cindy Waeltermann

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…

How Parents Can Use Maximum Potential’s ABA Training Program

By Garrett Butch/Founder of Maximum Potential

 

I have been asked over the years by various parents and professionals how I came up with MP and how we use it. I never put it in writing until I was asked a few days ago to do so.

Here is the background. Collin our son who is now 9 was diagnosed at the age of 22 months. We knew something was wrong with him at roughly 15 months. We began the labor intensive process of testing Collin at 18 months. We had no idea what we had in store for us and I am glad that we didn’t. Not sure I could have handled a diagnosis and potential of financial ruin all at once. We had created a little nest egg for the future and were debt free….although not for long. We got the diagnosis and within 48 hours had therapists lined up. They were SLP, OT, PT, Music, and ABA. We had much of the early therapy paid for because he was under three and Babies Can’t Wait here in GA paid for it….except ABA. My wife was home with Collin while I worked and our focus was on him. Although I kept track of the hours that first month was a whilwind. Then I got the first bills and they combined to be $4,000!!

Whoa…Is this going to be the bill every month? Will insurance pay for this? I work for a big company. Of course the answer in 2004 for any state was a big NO.

So to make a long story short we blew threw that nest egg in a few months and like many other families any other savings ,investments and it quickly started eating into our monthly bills. We at one point had to put therapy on hold because we could not afford it. No one should have to do that to their child, especially during the early stages. We sold our house and lived in an apartment for about 8 months to get things under control.

My story is no much different than dozens of families that we knew at that time. What we did realize from the beginning was that my wife and I were  extremely capable of working with Collin. My wife sat in on years of ABA, Speech, OT and Physical therapy and learned how to work with Collin. When he was engaged in therapy we were working with him when the therapists left. When therapy was not an option, my wife would spend hours working with Collin during the day at the table and anywhere else she could. The best part was that it was having a positive effect.

This helped us come up with the idea of Maximum Potential. We started our project in 2007 with the belief that parents and family members could have an impact on their child. If they only knew what to do. . Over the past 4 years we have had our program utilized in over 300 school districts and in 14 countries around the world.

But people always ask me…How do you use the program. There are 5 distinct ways that we have personally used the program over the past four years.

Training ourselves. My wife sat in on 3+ years of ABA therapy before we began our program but she did not know everything. As we began to develop the program and watch the Lund’s present their material we realized that we still had a lot to learn. We also knew that we had probably forgotten a ton of what we observed during the early part of Collins therapy. So we used the program extensively at first to view and review the concepts that Coby and Janet taught. Throughout the years we have gone back and reviewed modules when situation have come up that baffle us. In most cases watching the appropriate video has helped solve a situation or reduce a behavior.

Training family: My family lives in the north and my wife’s family is close so they engage Collin in different ways and at different times. We sent a copy of our program to each of our families to review. We specifically asked them to review certain modules like behavior, social skills, reinforcement and the autism overview. They were able to take what they learned and combined with what we told them to make their experiences much more enjoyable. I have an old school Italian mother and it was tough at first to get her to change the way that she wanted to handle Collin but now things are much easier and that is because she and my in laws know what to do.

Friends: We trained our friends more by just passing along information then having them watch our program but it has made a huge difference. Just by giving them the  knowledge has given them a perspective of Collin and they have zero program spending time with him. See my blog post Perfect Vacation and you will understand how lucky we are to have great friends and the knowledge to give them.  Here is the link https://autismdad.wordpress.com/2011/04/16/perfect-vacation-for-a-child-with-autism/

Tutors/Helpers: Over the past few years much of Collins therapy has been done at school. We have had an ABA therapists that has worked with Collin about 6 hours a week. She was great but still cost prohibitive. So we have hired tutors to work with Collin. Some of these are teachers but others are high school and college students. These tutors have taken our program and used the skills that they have learned to work with Collin in a number of different venues. The first tutor we hired worked with Collin on Math. Another individual worked with Collin in our local Crossfit Gym. We have also used our program to train individuals who baby sit our kids. So the important piece is that they are not all doing discrete trials but working with him in his natural environment using the skills that our program taught them.

ABA Therapist: We were fortunate over the past 4 years to have an amazing therapist that Collin loved. At times if things were rough, she was the only one who (outside of his mom and me) who could get him to do work. Then last April I got an email from her while we were on spring break telling us that she was leaving the ABA world effective immediately. Wow…… Not her fault but we were in a bind. Many of the therapists we knew had a full schedule. So we improvised. Through a friend we found a college student who was looking to get into the field of autism. We hired her on as a baby sitter first and then took her though our program as well as some “Collin training”. She has been amazing and Collin really has taken to her. She is using our program and lesson plans to help Collin with his homework and then to work on some additional skills. Is she a BCBA… no but she also does not charge $85 an hour. This is not a knock on BCBA’s because they are amazing and I recommend that every family hire one if there is one in their area for at the very least consulting, but our new therapists is the right fit and without our course we would be struggling to get Collin the hours he needs.

So the point of all of this, is that the program we envisioned and developed is comprehensive enough to use in a number of different settings as well as broad enough to train a number of different people. If you are a family that just wants to add to the hours that you currently are doing we created the program for you. If you are a family that can’t afford therapy, then we created our program for you. Finally if you are a family who does not have a qualified therapists in your area, we created our program for you.

The final goal was to create a program that was affordable. In regards to expense, I  have put my son through college from the age of 2-9 and are still climbing out from a mountain of debt.. We developed this platform so that almost every family would have the ability to understand the concepts of ABA and to use them throughout the day with their child.

 

Feel free to contact me. I will be more than happy to answer any questions that any parent, family member of professional has.

Enjoy our program or view it at http://www.maximumpotentialkids.com

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.”