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.”

Best Friends

By Jeff Stimpson

Last summer, when my 13-year-old son Alex was bolting from our apartment almost daily, I hit the roof. Something about Alex leaving the apartment and bursting in on neighbors made me raise my voice more than I wanted to even in middle age and even in this economy. My wife Jill helped me see that was time to bring in help.

“Danny’s coming? Rhonda’s coming? Danny’s coming?” Alex says these days. He’s talking about the folks we found to … what? Babysit? That doesn’t sound right for a boy who’ll be 14 next summer. It does sound right a boy who has autism. We found Danny (not his real name) on Craigslist; we found Rhonda (not her real name, either) through the psychology department of a local college. They take Alex on bus rides to locations as varied as Burger King to the Queens Hall of Science.

“Danny’s coming? Rhonda’s coming? Danny’s coming?”

“Yes, Alex. He/she is coming in an hour or so. Just be patient.”

“Danny’s coming?! Rhonda’s coming?! Danny’s coming?!”

“Alex, be patient!” He used to just say “Mommy!” or “Daddy!” He still does. But now he says other names. He asks if people are coming hours before they are coming (which we tell him, and he keeps asking). By the morning of Black Friday this year, Alex was bored out of his mind. He didn’t want to “do” letters with me, he didn’t want to pick up his room or put laundry away, jobs he usually throws himself into. He shouted into his iPad.

He would slip on his shoes, hoodie and backpack. “Take a walk!” he would say. “Wanna walk!” Alex, who will be 14 next summer and who still watches Elmo and “Barney,” has a clear need to see the world. He flies onto the buses now for overnight and summer camp; he totes his own luggage; he grabs the shopping bags of gifts or food to head to grandpa’s or Aunt Julie’s for family parties, even though he’s likely to spend the time there holed up in a spare bedroom with his iPad.

Still, I guess, the walls of that spare bedroom or that camp bunkhouse will not be the same old walls of his apartment; this seems to spur him. I wish I knew for sure.

Alex, does this spur you?

Spur you!

Alex, do like getting out more?

Getting out more!

I wish we could have these “companions” every day for many hours, but I’m two-and-a-half years unemployed, and these guys charge a lot. They won’t be there, can’t be there, every day that Alex slips on his backpack (Wanna walk!), and that hits me in the middle. In what I hope will be a trend for the future, Alex’s little brother Ned provides a voice that helps bring me off the roof. “At least,” says Ned, eying the iPad, “he’s connecting with a person.”

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.”

Heart Surgeon Speaks Out On What Really Causes Heart Disease

Heart Surgeon Speaks Out On What Really Causes Heart Disease

Dr. Dwight Lundell
PreventDisease
Thu, 01 Mar 2012 21:58 CST

© n/a

We physicians with all our training, knowledge and authority often acquire a rather large ego that tends to make it difficult to admit we are wrong. So, here it is. I freely admit to being wrong. As a heart surgeon with 25 years experience, having performed over 5,000 open-heart surgeries, today is my day to right the wrong with medical and scientific fact.

I trained for many years with other prominent physicians labelled “opinion makers.” Bombarded with scientific literature, continually attending education seminars, we opinion makers insisted heart disease resulted from the simple fact of elevated blood cholesterol.

The only accepted therapy was prescribing medications to lower cholesterol and a diet that severely restricted fat intake. The latter of course we insisted would lower cholesterol and heart disease. Deviations from these recommendations were considered heresy and could quite possibly result in malpractice.

It Is Not Working!

These recommendations are no longer scientifically or morally defensible. The discovery a few years ago that inflammation in the artery wall is the real cause of heart disease is slowly leading to a paradigm shift in how heart disease and other chronic ailments will be treated.

The long-established dietary recommendations have created epidemics of obesity and diabetes, the consequences of which dwarf any historical plague in terms of mortality, human suffering and dire economic consequences.

Despite the fact that 25% of the population takes expensive statin medications and despite the fact we have reduced the fat content of our diets, more Americans will die this year of heart disease than ever before.

Statistics from the American Heart Association show that 75 million Americans currently suffer from heart disease, 20 million have diabetes and 57 million have pre-diabetes. These disorders are affecting younger and younger people in greater numbers every year.

Simply stated, without inflammation being present in the body, there is no way that cholesterol would accumulate in the wall of the blood vessel and cause heart disease and strokes. Without inflammation, cholesterol would move freely throughout the body as nature intended. It is inflammation that causes cholesterol to become trapped.

Inflammation is not complicated — it is quite simply your body’s natural defence to a foreign invader such as a bacteria, toxin or virus. The cycle of inflammation is perfect in how it protects your body from these bacterial and viral invaders. However, if we chronically expose the body to injury by toxins or foods the human body was never designed to process,a condition occurs called chronic inflammation. Chronic inflammation is just as harmful as acute inflammation is beneficial.

What thoughtful person would willfully expose himself repeatedly to foods or other substances that are known to cause injury to the body? Well, smokers perhaps, but at least they made that choice willfully.

The rest of us have simply followed the recommended mainstream diet that is low in fat and high in polyunsaturated fats and carbohydrates, not knowing we were causing repeated injury to our blood vessels. This repeated injury creates chronic inflammation leading to heart disease, stroke, diabetes and obesity.

Let me repeat that: The injury and inflammation in our blood vessels is caused by the low fat diet recommended for years by mainstream medicine.

What are the biggest culprits of chronic inflammation? Quite simply, they are the overload of simple, highly processed carbohydrates (sugar, flour and all the products made from them) and the excess consumption of omega-6 vegetable oils like soybean, corn and sunflower that are found in many processed foods.

Take a moment to visualize rubbing a stiff brush repeatedly over soft skin until it becomes quite red and nearly bleeding. you kept this up several times a day, every day for five years. If you could tolerate this painful brushing, you would have a bleeding, swollen infected area that became worse with each repeated injury. This is a good way to visualize the inflammatory process that could be going on in your body right now.

Regardless of where the inflammatory process occurs, externally or internally, it is the same. I have peered inside thousands upon thousands of arteries. A diseased artery looks as if someone took a brush and scrubbed repeatedly against its wall. Several times a day, every day, the foods we eat create small injuries compounding into more injuries, causing the body to respond continuously and appropriately with inflammation.

While we savor the tantalizing taste of a sweet roll, our bodies respond alarmingly as if a foreign invader arrived declaring war. Foods loaded with sugars and simple carbohydrates, or processed with omega-6 oils for long shelf life have been the mainstay of the American diet for six decades. These foods have been slowly poisoning everyone.

How does eating a simple sweet roll create a cascade of inflammation to make you sick?

Imagine spilling syrup on your keyboard and you have a visual of what occurs inside the cell. When we consume simple carbohydrates such as sugar, blood sugar rises rapidly. In response, your pancreas secretes insulin whose primary purpose is to drive sugar into each cell where it is stored for energy. If the cell is full and does not need glucose, it is rejected to avoid extra sugar gumming up the works.

When your full cells reject the extra glucose, blood sugar rises producing more insulin and the glucose converts to stored fat.

What does all this have to do with inflammation? Blood sugar is controlled in a very narrow range. Extra sugar molecules attach to a variety of proteins that in turn injure the blood vessel wall. This repeated injury to the blood vessel wall sets off inflammation. When you spike your blood sugar level several times a day, every day, it is exactly like taking sandpaper to the inside of your delicate blood vessels.

While you may not be able to see it, rest assured it is there. I saw it in over 5,000 surgical patients spanning 25 years who all shared one common denominator — inflammation in their arteries.

Let’s get back to the sweet roll. That innocent looking goody not only contains sugars, it is baked in one of many omega-6 oils such as soybean. Chips and fries are soaked in soybean oil; processed foods are manufactured with omega-6 oils for longer shelf life. While omega-6’s are essential -they are part of every cell membrane controlling what goes in and out of the cell — they must be in the correct balance with omega-3’s.

If the balance shifts by consuming excessive omega-6, the cell membrane produces chemicals called cytokines that directly cause inflammation.

Today’s mainstream American diet has produced an extreme imbalance of these two fats. The ratio of imbalance ranges from 15:1 to as high as 30:1 in favor of omega-6. That’s a tremendous amount of cytokines causing inflammation. In today’s food environment, a 3:1 ratio would be optimal and healthy.

To make matters worse, the excess weight you are carrying from eating these foods creates overloaded fat cells that pour out large quantities of pro-inflammatory chemicals that add to the injury caused by having high blood sugar. The process that began with a sweet roll turns into a vicious cycle over time that creates heart disease, high blood pressure, diabetes and finally, Alzheimer’s disease, as the inflammatory process continues unabated.

There is no escaping the fact that the more we consume prepared and processed foods, the more we trip the inflammation switch little by little each day. The human body cannot process, nor was it designed to consume, foods packed with sugars and soaked in omega-6 oils.

There is but one answer to quieting inflammation, and that is returning to foods closer to their natural state. To build muscle, eat more protein. Choose carbohydrates that are very complex such as colorful fruits and vegetables. Cut down on or eliminate inflammation- causing omega-6 fats like corn and soybean oil and the processed foods that are made from them.

One tablespoon of corn oil contains 7,280 mg of omega-6; soybean contains 6,940 mg. Instead, use olive oil or butter from grass-fed beef.

Animal fats contain less than 20% omega-6 and are much less likely to cause inflammation than the supposedly healthy oils labelled polyunsaturated. Forget the “science” that has been drummed into your head for decades. The science that saturated fat alone causes heart disease is non-existent. The science that saturated fat raises blood cholesterol is also very weak. Since we now know that cholesterol is not the cause of heart disease, the concern about saturated fat is even more absurd today.

The cholesterol theory led to the no-fat, low-fat recommendations that in turn created the very foods now causing an epidemic of inflammation. Mainstream medicine made a terrible mistake when it advised people to avoid saturated fat in favor of foods high in omega-6 fats. We now have an epidemic of arterial inflammation leading to heart disease and other silent killers.

What you can do is choose whole foods your grandmother served and not those your mom turned to as grocery store aisles filled with manufactured foods. By eliminating inflammatory foods and adding essential nutrients from fresh unprocessed food, you will reverse years of damage in your arteries and throughout your body from consuming the typical American diet.

Services

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.”

What To Observe On A Child Who Might Have A Diagnosis Of Autism

Written by Rosario Elejalde, MS, CCC- SLP, BE TSHH

As Speech Language Pathologists we need to be aware of some behavior/signs that children on the Autism Spectrum might have. It does not mean that every child with Autism will present these behavior/signs, but most of them will prompt us to make an accurate observation on the child’s responses to make the proper referral for an evaluation which can lead to an appropriate diagnosis.

As Linda Watson, Ed.D.,CCC-SLP Associate Professor from the Division of Speech and Hearing Sciences at the University of North Carolina, Chapel Hill, NC wrote in different articles familiarity with the literature about the early development of children of Autism will improve the ability of professionals to appropriately diagnose and intervene young children who may have a form of autism.

In her article “Toddlers with Autism, Developmental Perspectives”, she presented the development of young children with Autism by discussing the developmental domains of affective development, sensory processing and attention, praxis and imitation, communication, play and motor features, and stereotyped behaviors.

– Affective development: fewer facial expressions are seen in toddlers with Autism, and fewer are directed to other people. These children are more likely to show ambiguous facial expressions. Retrospective video research has indicated lack of social smiling in infants with Autism.

– Sensory processing, attention and self regulation: Many symptoms, reflective of sensory processing and / or attention disturbances are present among children on the spectrum. Among these symptoms are hypersensitivities to sound, aversion to social touch, avoidance of certain food textures, lack of response to pain, poor orientation to visual stimuli, and over focused attention with sensory features of objects (e.g. spinning objects, licking objects).

– Praxis and imitation: Imitation deficits are evident in the youngest children with confirmed diagnoses of Autism, and those skills impact the gesturing development of every child as a precursor of verbal language.

– Communication: Comprehension problems impede the child’s progress in social interaction and expressive communication. Eye contact, which is reduced in young children with Autism, will affect in regulating their communication as demonstrated by reduced babbling in early development. Another behavior which points to a diagnosis of Autism is when a child manipulates another person’s body (eg. placing another person’s hand to obtain an object). A lack of pointing is one of the key items for 18 month old children who are at risk for Autism. Limitations in the ability of young children to engage in joint attention have proven to by highly reliable in helping to distinguish the children who may have Autism.

– Play: Play skills in children within the spectrum are characterized by less proximity to peers, reduced level of social initiations, fewer social responses, lack of pretend play and isolated play. Difficulties in social skills and joint attention may reduce levels of engagement in social play.

– Motor features and stereotyped/ repetitive behaviors: There is evidence that some children with Autism without cognitive delays may exhibit unusual postures, clumsiness, and motor planning problems. Two of the hallmark features of Autism among others are repetitive/ stereotyped behaviors (e.g. arm/ hand flapping, toe walking) and ritualistic behaviors (e.g. lining up objects).

In the article “The first year inventory: Retrospective parent responses to a questionnaire designed to identify one year-olds at risk for autism” by Linda R. Watson and others from the Division of Speech and Hearing Sciences at the University of North Carolina-2007, establish the need to identify one year old children in the general population who are at risk for atypical development and additionally, to highlight children whose risk patterns seem most suggestive of eventual Autism. This screening instrument is not ready for clinical use yet and is limited to research use at this time.

We as Speech Language Pathologists can observe the children’s behaviors among the following domains to make an evaluation referral which might suggest the risk of Autism1. Social orienting and receptive communication: looks when named is called, seems to have trouble hearing, turns to look at pointed out objects, looks at people when they talk, looks up from play when shown new toy, seems interested in other babies, responds to where is, looks up from playing with a favorite toy by showing a different toy, by moving or shaking the new toy or by removing current toy, turns to parent when calling by name once or several times or when name is loud or other sound is used.

2. Social affective engagement: excited when knows what will happen next, looks at parent face for comfort, easy to understand baby’s expressions, smiles when looking at you, tries to get your attention to show things, for interactive games, to obtain toy, for physical games.

3. Imitation: imitates mouth sounds, body movements, activities with objects, responds to a new game by joining immediately, with a little help or with a lot of help, smiles and laughs in response to smile and laugh, smiles when touched or tickled, smiles when swung or bounced, when imitating a sound done by the baby he/she does not notice that sound is being imitated, notices sound but does not imitate it or notices sound and imitates it.

4. Expressive communication: tries to get attention by sound and gaze, babbles, uses communicative gestures, uses finger to point at things.

5. Sensory processing: overly sensitive to touch, avoids looking at parents, spits our certain textures of food, presses against things (people or furniture), body feels loose or floppy, keeps a toy or object in his/her mouth ( never, sometimes, often).

6. Regulatory patterns: sleeping and walking patterns regularity, regular feeding patterns, how many hours per night is the child sleeping ( more than 12, between 10-11, 8-9, less than 7 hours), times per night does the baby wake up (none, 1-2 times, 3 or more times).

7. Reactivity: upset when switching activities, difficult to calm when upset, number of times the baby gets upset during a typical day ( never, between 1-3 times per day, 4-6 or more than 6 times per day).

8. Repetitive behavior: plays alone for an hour or more, rocks body back and forth over and over, repeats simple activity over and over, enjoys staring at bright lights, gets stuck on playing with a part of a toy, enjoys rubbing or scratching objects, body gets stuck in positions or postures, enjoys making objects spin over and over, enjoys kicking feet over and over, stares at fingers when wiggling them, number of toys is the child interested in a regular day ( play with 1-2 special toys per day, 3-5 toys, with a large number of toys).

Observe the children behaviors, document those behaviors and make the proper referral for an evaluation. An adequate diagnosis of autism might turn into an early treatment.

Research indicates that children who receive early intervention before three years of age are more likely to demonstrate greater gains in language and communication development. From a clinical perspective, evidence suggests that early treatment lead to better outcomes for the child.

Rosario Elejalde, MS, CCC- SLP, BE TSHH works for Bilinguals Inc. / Achieve Beyond

http://www.achievebeyondusa.com
http://www.bilingualsinc.com

Pediatric Therapy & Autism Services. The company provides physical, speech and occupational and Applied Behavior Analysis therapy services to special needs children in home, clinic and community settings nationwide. For a list of resources used to this article or to refer a child for therapy services please feel free to email info@bilingualsinc.com