All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the twelvth one from Holly McBain!

Cookie-Cutter Mentality Needs to Go

(by HollyMcBain)

Just now I was researching potty-training because my 6 year old son, who is diagnosed as High Functioning Autistic, still is not using the toilet. He turned 6 on July 29^th and is in the 1^st grade. Besides being HFA he also has a speech delay including cognition issues. When he was 3 years old he had a vocabulary of about 12 – 15 words. After trying a variety of private and semi-private therapies, we placed him in the PPCD program with the school district and he blossomed. Needless to say he and his brother (Asperger’s Syndrome) are the light of our lives.

Anyway, back to my point about cookie-cutter mentality needs to go: while researching potty-training for people with ASD I once again ran into the proverbial “brick wall” of just set up a routine and stick with it” approach. I really do not understand why that when dealing with a “spectrum” disorder, intelligent professionals want to place everyone in one category. Both of our boys are on the Autism Spectrum with both being extremely intelligent; but that is where their similarities end. From there, they are as different as night and day, so why would one process or plan work for both? It wouldn’t.

How I work with, discipline and deal with them is very different – not only because one is 6 and the other 8, but also because each one is an individual with their own characteristics, tastes, idiosyncrasies and issues. I realize that no one book is going to encompass the litany of possibilities to choose from when developing strategies for your child, however listing in one paragraph how to develop a potty-training routine using a cooking timer is just a wee bit simplified and seems almost condescending because essentially for me it is “been there, done that”.

I am looking for help to understand my child’s issues with potty-training and help him understand what I am trying to explain to him. Have you ever tried asking someone “are you getting the pee signal” who is autistic? God knows what he thinks I am asking – it could be anywhere from thinking a bell should ring to getting a phone call or some acute pain. I have no clue if he really understands because he cannot enunciate to me what is or is not happening just prior to soiling his diaper. So to offer advice like “oh just use a timer and set up a schedule” is useless information for me.

This is what I mean by cookie-cutter mentality – if every person on the Autism Spectrum is different in their issues, why aren’t there a greater variety of ways to help them? You know we are taught not to “pigeon-hole” neuro-typical children because everyone is their own individual entity. Maybe it is time this was extended in greater detail for ASD kids and adults.

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the tenth one from Jeff Stimpson!

The Terrible 13′s
(By Jeff Stimpson)

 My son Alex, who has autism, just turned 13. Hair is sprouting all over his body. He’s started using roll-on.  His voice has deepened.  Parts of him are suddenly stunningly large.  Others don’t seem to be growing at all.  “He must be getting very … wilful,” says his service coordinator, looking at him in our living room.  He’s watching Elmo.  I can see his first moustache from here.  Yes.

It seems a blink ago that he was a premature baby in an isolette in a neonatal intensive care unit. It was 13 years ago.  It was a blink ago – about 15 minutes, actually – that my wife Jill called to say:  “We haven’t had a good outing.  He’s lying down on the line for the registers and I’ve tried taking his ear and it didn’t work.  People are staring.  It’s going to take a special set of people for him, and we’re not them.”

“I didn’t like it when he was five and he drank out of puddles, but nobody laughed at him and nobody made fun of him,” Jill says. True.  But in the past six months Alex has become more embarrassing than at any time in his life. People are starting to look at Alex, then look away, then look back, as if at a train wreck, says Jill.  They never used to.  He pitches forward and back on stiff legs.  His voice is getting loud and embarrassing as he sprawls on the floor of a store and bellows “Banana!”  Jill says that during their recent outing Alex had to use the bathroom.   Jill can’t go in the bathroom with him anymore, of course. She says a boy about 13 came out while Alex was in there.  “You could tell he didn’t want to be in there with Alex,” Jill says.  “People are starting to react to him.”  She also said her legs hurt when she returned with him.

His school – school,  that bastion of sanity in Alex’s life – has reported that he needs a 1:1 para-professional to shadow and monitor him so he doesn’t bolt to the playground or barge into counselling sessions with students or into classrooms.  “With hormones and puberty and everything going on, it’s becoming a little too much for him to focus,” said his head teacher.  Indeed.

An adult recreation program I tried to get him into last month sure reacted to him. They found him in a pre-school room on the fourth floor, with its huge red rubber ball and Elmo books.  We all watched him press the ball to his midsection and flip through Elmo books.  “He’s obviously more comfortable in this environment and we’re not set up to deliver that,” says one staffer, speaking of the big ball and the Elmo books.

He grabs his crotch these days and purrs “Mooooommmmmmmyyyyy …”  We tell him to do that in private, when he’s alone.  He does it on the sidewalk, too, between bouts of running ahead of us, shouting, bobbing and weaving and biting his arm.  “God it’s embarrassing,” says Jill.”   I hate to say it, but it’s true.”  He seems to prefer men as companions — I sure found females confusing at 13, too — and when out with a female sitter recently darted into a health club kids’ room and started pressing a big ball against his midsection.

Can the teachers, can anybody, help him understand that he shouldn’t leave our apartment and bust in on neighbours?  Stop biting his arm when frustrated, stop unravelling and ripping his own T shirts? Can they help him understand the dangers of traffic?  “I can’t have him run across the street when I have five kids back here on this corner,” his teacher says.

Busting in at home:  There was the couple that we think was having sex.  The young woman in the middle of her first brunch for friends in her newly renovated two-bedroom.  There was the couple with the great cats.  The family with all the expensive ship models in glass cases that I could picture Alex missing by a hair as he darted into their apartment.  There was the surgeon. “Do you need any help?” he asked.  He wasn’t smiling; neither was his wife. “He took my hand and tried to go right in,” Mrs. Surgeon said. Alex was sprawled on the carpet outside their door.

I bought three white plastic doorknob covers for babies  (babies, for Christ’s Sake; Alex is shaving.). Aunt Julie suggests a combination lock.  Ideal, but we checked into this back in 2006 when Alex first bolted.  You want a what?, the locksmith asked.  He figured, after some head-scratching, that a combo lock wouldn’t work that way – the bolt goes into the door jamb the wrong way– unless installed upside down.

I’ve sent notes to neighbours, and made Alex apologize in person.  “I’m sorry,” he says;  I stand there wondering if he knows what the syllables mean.  Jill suggests that when he gets home from school, we take him out.  “Take him floor to floor.  Let him get it out of his system.”  This sort of works  for one night.

“Will he get over this?” they asked at a sexuality and autism workshop a year ago. This is the question I asked a prospective babysitter (…babies, for Christ’s Sake…) whom I interviewed this afternoon. You can expect more aggression, said the first.  Sure it’s normal, said the second.  Great, but once again in my son’s life I feel myself groping for what others find normal.

jeffslife.tripod.com/alextheboy
Twitter Name: Jeffslife

“Alex: The Fathering of a Preemie” (on Amazon and at academychicago.com) and “Alex the Boy: Episodes From A Family’s Life With Autism” (available at vervante.com and on Amazon)

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the eighth one from Caroline Washington!

Judging a Book by its Cover
(By Caroline Washington)

That saying was told to me as a child, but it’s a saying some of us have forgotten. When I go out with my son in public most people automatically assume that I am a bad mother because Uriah has tantrums in public. My son is a normal little boy in so many ways, but I know that my Child has Autism Spectrum Disorder.

Uriah was diagnosed with Autism in June of 2000. As a mother, I felt guilty because I thought it was caused by something I had done. Of course, now I realize that I couldn’t have done anything to control the Autism. Yet, that doesn’t stop the hurt that I feel. With Autism, I find myself struggling to keep my child’s life as normal and stress-free as possible.

 Like many, I had never heard of this disorder before 2000. It took a neurological doctor to explain that it is a developmental disability. Uriah’s mind works like a two and half year olds. He has little or no speech, he tantrums a lot, which has led to a behavioral problem. As a mother, I want him to experience the same things other kids do, but I find it hard to do so. Not because the kids aren’t accepting of his Autism, but because of the adults. I guess they feel that if Uriah plays with their kids in the park, then their kids might become “special” too! Things like that have not stopped me from taking Uriah out, I just explain to them that Uriah’s brain works a little different from everybody else’s.

In December of 2000, I decided to leave my job to care for him full-time. It hasn’t been easy going from a two income household down to one. I guess, in my mind, there was going to be a system set up to help me financially. I quickly discovered there wasn’t. In the beginning, Uriah had qualified for SSI disability, but when my husband received a raise at work he was cut off.

My son is now in a public school program for special needs children and I keep being told he could use extra speech and occupational therapy, something my husband’s insurance does not cover. I find myself working with flash cards and the like at home, hoping this will help until his Autism Waiver is approved. (I have been told this can take up to seven years). I never regret that Uriah is here, because I realize that my son gives me a purpose.

My life’s joy is to help Uriah succeed in whatever he wants to do now and in the future, and to let other people know that when they see a child acting out in the store or whatever, don’t just assume it’s bad parenting. It just maybe a special child acting out…and they cannot help themselves. That’s why it’s not good to Judge a Book by its Cover.

All My Readers,

As a Chicken Soup co-author I’m always looking for your stories to share with everyone else.  Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions.  I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis.  Here is the fifth one from Nancy Bernotaitis!

Autism Is Definitely Not for Wimps

(By Nancy Bernotaitis)

I’ve heard it said that parenthood is not for wimps.  If that’s true, then parenting a child with autism is definitely not for wimps.  

With two fairly well-adjusted kids and a marriage intact, I thought I was pretty good at the mommy thing.  Then God threw us a curveball.  Remember everything you’ve learned about being a mom?  Well, throw it out the window because it won’t work.  Your special child will not care how his behavior affects anyone else, if “everyone in the store is looking” at him, or if he should be ashamed of himself.  He’s not.  Being the parent of a special needs child is going to challenge your imagination, creativity, and patience more than you ever thought possible.  You will be forced to look at the world through his eyes and figure out how he thinks, how he sees the world, before you can begin to figure out why he does the things he does.  Then you’ll have to adapt your way of doing things to accommodate that. 

For instance, when we began toilet training our youngest, we would sit him on the toilet backwards, which required complete undressing from the waist down, to be sure his aim was on target.  After a year of this, we decided it was time for him to stand up like all the other boys.   Our older son had made this transition on his own so we figured it was just natural.  Lesson #1, almost nothing comes natural to our special kids.  When we tried to stand him in front of the toilet, he would scream bloody-murder until we gave in, mostly out of fear, and quickly placed him on the toilet backwards.  So I analyzed the situation, looking at it from his point of view.  He obviously did not understand what we were asking of him.  I then took a piece of construction paper, traced around his feet, stuck it to the floor in front of the toilet with contact paper, and waited for nature to call.  When it did, I walked him into the bathroom, stepped onto the outlines with my own feet, and then backed up.  I, literally, saw the lightbulb go on over his head and heard an audible *ding*.  He then stepped into the outline of his own feet and tinkled in the toilet.  Problem solved!  It was a miracle! 

Nothing in my life before I had a special needs child prepared me for the life I have now.  It’s stressful, chaotic, frustrating, and challenging beyond belief.  When I was the mother of two typical kids, I was arrogant, I’ll admit it.  I breezed through the day kissing boo-boos and packing lunches like Mary Poppins.  Then I fell down the rabbit hole.  It’s as if everything has been magnified.  It’s 100 times harder than parenting a typical child but when joy comes, it’s overwhelming.  I get sad when I realize that parents of typical kids just have the typical milestones to reach.  Nothing spectacular, everyone does it eventually.  They rarely get to feel that they’ve witnessed a miracle.  With autism, there is no roadmap so everything is a surprise, everything is huge, everything is a gift.   Don’t get me wrong, I enjoyed my typical children as they reached each and every milestone, but with this last one I get to witness a miracle every single day.

About the author:  Nancy Bernotaitis is the mother of three children, two “typicals” and one diagnosed with autism.  She provides in-home childcare specializing in special needs.  Nancy currently volunteers as President of the Dayton Chapter of the Autism Society of America and sits on several committees including the Miami Valley Autism Coalition, the Ohio Autism Coalition, and the Parent Advisory Council.  She lives in Dayton, Ohio with her husband of 20 years, her 3 kids, an autism service dog, and 3 cats.

Eustacia Cutler

Eustacia Cutler is the mother of four children. Her oldest child is Temple Grandin, who has become a successful person with autism in the world today. Eustacia is a graduate of Harvard. She has been a band singer at the Pierre Hotel, New York City, performed and written for theatre and cabaret, and written for major television networks.

Her current book, “A Thorn in My Pocket” describes raising Temple in the conservative world of the 1950′s.

Dr. Temple Grandin

Eustacia was one of the first to tread new water as she overcame the difficulties of “challenging the system”. Like every parent and teacher, she wanted the best for her child. She understands the myth, reality, angst, and guilt a family experiences in society. She is where you will be in the future: looking back on the things you did to help you.

When the “system” is not meeting the needs of your child, you must be creative and design your own program. Piece by piece, you and your child can develop a meaningful, interrelated reality.

Hear Eustacia Cutler speak at this extraordinary upcoming event, the 3rd Autism Vancouver Biennial Congress 2011, April 8 – 9, 2011, Vancouver BC. Register early and Reserve your seat today!

Sincerely,
Karen Simmons

Can Food Sabotage Your Child’s Progress?

by Dr. Daniel Dantini, MD

In the mid 1980s, I conducted a study on food sensitivities and their effects on ADD/ADHD symptoms. After testing the patient for delayed food sensitivities, the study consisted of two phases:

The Avoidance Phase, in which the offending foods are avoided for six weeks.
The Challenge Phase, in which the excluded foods are slowly added back into the diet. The reason for the challenge phase is to prove that the foods identified by the test are actually causing specific symptoms.

Included in this particular study, was an autistic child around 2 years old.  During the avoidance phase when the harmful foods were removed from this child’s diet, ALL of the autistic symptoms disappeared.
With such dramatic results, the parents withdrew the child from the study before the challenge phase. They not only feared that challenging the foods back into the child’s diet would cause the symptoms to return, but that they would not be able to reverse them again.

This was the first autistic child I had ever encountered.  I consulted my dad who had been a General Practitioner for 50 years, and he had never seen a single case.  As an otolaryngologist, I didn’t see many cases of autism.

However, just before I moved from Pittsburgh to Florida, I saw the son of a nurse at the hospital who had just been diagnosed with Autism. After I tested him for delayed food sensitivities, I instructed his mother to have him avoid the harmful foods.  16 years later, he and his mother stopped by my office.   He had continued the protocol and was preparing for college.  As far as I could tell, he was normal. The only unusual remnant of his autism was that he couldn’t lie.

In Florida, I started seeing more and more patients on the Autistic Spectrum.  I have been watching results in my own practice and getting feedback from DAN doctors and others who regularly treat Autism.  What I have found is that, in delayed food sensitivity, immune complex plays a vital role in the progression of autism.  And the younger the child we treat, the better the results.

Certainly there are genetic predispositions that affect the population, but since it was rare before the 1980s, there is obviously something else, which is drastically contributing to, if not causing the huge increase in cases.

Allergic load and an over-stimulated immune system seem to me to be major culprits.  Allergic load is the amount of allergens the body can successfully tolerate.  When we’re exposed to more than we can handle, the immune system reacts badly.  In the case of autism, the brain is affected during its development.  By decreasing the allergic load, the immune system is better able to handle any other onslaughts it may encounter.  Since food is such a large portion of the potential allergic load, it makes sense to test children early for both immediate AND delayed food sensitivities and eliminate the foods to which they react. This increases the chance that the brain can develop normally.

Autism is a very big continuum, from severe (nonverbal) to brilliant to (scientists). The kids growing up now can be the next great inventors.

There is a fine line between nerd and someone with Asperger’s. Many times, these ‘nerdy’ types or kids that can’t get focused on their assigned lessons in school get pushed aside because teachers just don’t know how to deal with them. They don’t know what to do with them and they don’t have the resources to help them flourish. Temple’s deep concern is expressed “…one of the things that really worries me is where is the younger version of those kids going today? They’re not ending up in Silicon Valley, where they belong!” (Grandin, 2010).

The autistic mind is a ‘specialist’ mind. Some are visual, photo realistic thinkers and are poor at algebra, They see thoughts or words just like “google for pictures”. The autistic brain picks out the details, but the ‘normal’ brain ignores a lot of details. She says if a bridge designer ignores the details, it will crumble and fall!

There are pattern thinkers, who are good at math and often have problems with reading. There are verbal thinkers, which are poor at drawing, but know every fact about everything.

Temple learned very early that she had to sell her work, not herself. Social people sell themselves in a job interview, more so than their work. Temple showed her amazing drawings! She also learned the importance of manners at an early age, through intensive mentoring as a young child.

It’s important to show kids on the spectrum interesting stuff to get them excited about learning whatever their specialty is. A mind can be social or ‘geeky’. The autism mind is less social, to the severity of being non-verbal. To take art, drafting, music out of the schools is a critical mistake, as autistic kids need to have these programs to nurture their ‘fixation’. These kids are really smart, and teachers need to know how to direct these kids.

We need to get these kids ‘turned on’. Take notice on what they fixate. If they can’t get their mind off horses, then center the [math] lesson around horses. Maybe they should skip math altogether, if they aren’t pattern thinkers! Temple cannot emphasize enough the importance of  a good mentor for helping a child develop his or her autism special talents