A Story of Trevor in His World With Autism

“TREVOR’S WORLD” (Submittals for Chicken Soup For the Soul; Children with Special Needs)

I have a son named Trevor
he’s not like you and me
when he was born he changed our life
in ways we couldn’t see

In his crib we hung up mobiles
he loved to watch them spin
but his cows never quite “jumped the moon”
as we sat and wondered when:

He would communicate, or talk to us
we looked for any sign
but he didn’t progress in a “normal” way
he was “locked” inside his mind

And so began the visits
to the hospitals, and such
but when they came back they always said
“we can’t do very much”

He is autistic, also PDD
and epileptic too
he’s apraxic with low muscle tone
“there’s not much you can do”

So, medications special diets
and therapy we tried
to help our son in every way
as we sometimes sat and cried

He had no sense of danger,
could not tell right from wrong
he could not be left alone at all
we would watch him all day long

He would climb on tables and TV’s
would stand and reach from chairs
he was more adept at mountain skills
than he was on normal stairs

And if left alone in a yard or lot
he would just begin to go
there was nothing that would stop him
and he didn’t even know

Where he wanted to end up
it mattered not one bit
because hours and days could pass on end
before he chose to sit

He is thirteen now and at a school
which is a very special place
where there are angelic saints who teach him
with care and gentle grace

Trevor knows what he is saying,
he communicates by sign
he makes you understand him
it just takes a little time

We communicate by touching
there’s some things which give him calm
like running thread along his leg
or by massaging his little palm

It surprises me when I meet the ones
who care for him at school
or the ones who he rides horses with
or the instructor at the pool

He can’t play sports or army
and scouts and bikes won’t do
but there’s another world for kids like Trev
that these people take them to

Its a place that lets them know
that they have ability and right
to participate in all we do
regardless of their plight

And while its hard on families
to care for kids like this
Trevor has released me,
and has shown me what I missed

With my other kids I’d focus
on achievement and on grades
on pushing hard, cause it takes so much
to succeed in things these days

But Trevor’s goals are not the same
as they are for me and you
to watch him simply laugh and smile
he’s as happy as he can be

I go with him into his world
away from all the “stuff”
from the things that drive us crazy
which really is all fluff

He smiles and signs “I love you”
his way of saying thanks
“for doing this little thing with me”
he knows how much it takes

I think he knows more than he says
or can communicate to me
but if he wasn’t born this way
there’s a place I’d never see.

As parents of disabled kids
though hard beyond belief
they have a way of taking back
a small part of that grief

And God or nature works this way
by allowing us to deal
by finding something, however small
in a way to make us feel

That our efforts are not all in vain
that there really is a plan
that teaches us all to learn
“accept me as I am”

Though immune from all the problems
that most of us do face
he doesn’t care, he brings me there
to his special little place.

Turning the Autism Table

My sweet sister Susan loves to write too! Here is a new one of hers I think you will enjoy

Turning the Autism Table, by Susan Simmons

The following story is a hypothetical story of what I would like to see in the future, and what I think will happen in the future:

There was a time, long ago, when the word autism brought sorrow to people’s faces. When someone said the word autism people shuddered and grew their eyes wide with despair. They shivered, clammed up, and said, “Oh, I’m sorry”. They turned away, in shame (for you), because there was a person with autism in your family. In their mind, they rattled off a plethora of words they could pull out of their hat that mean stupid, crazy, less than perfect, disabled, retarded, and unacceptable. Or, if you were at a party, they either turned away from you or tried to change the subject. Their empathy or -non-acceptance was overwhelming.

During this same time, children with autism were coming out of their structured special education classroom “shells” and into the general ed classrooms. Teachers were scrambling every which way, going to conferences, workshops, getting training materials, taking classes, or becoming special education teachers. They were learning everything they possibly could to help these poor kids.

This was a time when the big table in the sky was turning ever so slowly.

It was a time when people didn’t know any better. They were not educated. Or, at least there were not enough educated people to know better. Autism is not necessarily a disease, or a terrible affliction, ready to put a person away or look at them with sorrowful eyes. It was a time of awakening. A time for us ‘normies’ to learn about them and understand how they think.

One day, the table did make it all the way around 180º and the world saw autism on the flip side.

In the ‘Learning Disabilities’ world, some label children as “learning disabled”, when in fact they are not disabled at all. They just have a unique learning style different than the way we have been teaching for hundreds or even thousands of years. We just don’t teach or assess to their learning style, thereby earning the badge of LD (learning disabled). In fact, many people with autism are still trying to figure us out.

Temple Grandin says autism is a spectrum “disorder”.  Asperger’s Syndrome is along that spectrum. Many people with Asperger’s are highly capable, intelligent people with special gifts to bring the world that the “normies” just cannot provide. We would not have the kind of wonderful things in the world we have today, had it not been for those with Asperger’s. Who would have invented the light bulb (Edison)? Who would have written The Marriage Of Figaro (Mozart)? And, where would we be without Microsoft!

Well, people kept on learning about autism and Asperger’s. They learned that many people who had been diagnosed as learning disabled (LD), were in fact not disabled at all. We just did not teach according to their specific learning style. You see, people with autism and Asperger’s, have very different learning styles from the normies. Some think in pictures, like Temple Grandin, able to see a picture in their head before it exists. Temple can completely test-run livestock handling equipment in her head before it is even put down in the design phase! Others think in numbers, on a highly complex scale.

We learned so much about autism and Asperger’s over the years, that we finally learned how to teach people with autism, as well as how to test them. We learned that by teaching them in such a way that fosters their strengths and at the same time addresses their challenges, they became the most productive, creative and famous people in the world!

Soon, everybody started saying, “I have Asperger’s”, because they don’t want to me a “normie”.

And that’s the way it was!

Susan Simmons

Temple Grandin on TED; Autism is a Continuum

Temple Grandin is very specific about how she describes autism, how to foster success in the autistic child, why the world needs people on the autism spectrum.

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

Autism in a New Light

“Autism in a New Light”, by Susan Simmons

I had the fortunate experience of “realizing” an autism episode yesterday just like the ones I’ve been reading about in my educational studies, books, and blogs. It was really quite interesting, as the child’s actions were literally replicated to the ones the experts write about. I knew from the onset of this memorable episode that it was indeed autism.

I was with my cousin and her family in their favorite candy store in Boulder CO, when suddenly a little boy started to profusely scream, thrash, and carry on like there was no tomorrow!

His temper tantrum found him in a position not standing, but pseudo-emotionally stirred like a dancing frantic starfish, barely balancing himself upright with the help of his mother and her friend. It seemed he may have wanted something, but was not allowed to have it or maybe didn’t want something – that part is unclear to me. Or, the candy store just may have been too much stimulation for him.

It may have been the stimulation of too many colors, smells and choices of candy, florescent lights, or the ambient rumble of the crowds. Nevertheless, he was clearly and deliberately unhappy and disturbed. The boy’s mother and friend attempted to escort him out of the store, but his body had taken charge of his relentless insistence.

With belabored effort, they managed to manipulate his thrashing body near the front of the store, but he somehow managed to adhere himself to a fixture just inside the front door like a monkey might have adhered to a tree if his very existence had been threatened. He had literally wrapped his arms and legs around the giant gumball machine that guarded the entrance from any hasty candy resisters.

The shrill shriek of his voice may have shattered the giant ball containing the multi-chromatic balls of gum, had it been made of glass. “I wish I had a picture of this” his mother commented, with a carefree chuckle as they delaminated him from the colorful globe of desire. Mom and friend slowly, but deliberately peeled him off the gumball machine with all their strength and finally managed to maneuver him over to the bench just outside the store. The boy thrashed and screamed for quite some time in his own private frenzy, resisting any attempt to diffuse his tantrum.

The experience was not only educational, but also very moving and emotional for me. I had read about such episodes in Little Rainman, and other books, but I took the experience just a step further. I calmly and lovingly went over to the bench where the family was sitting just outside the candy store with their screaming, thrashing child, and greeted them with a friendly smile as I sat on the bench with them. “I know all about it” and “It’s all okay”.

All the while, between the lines, but written in my eyes, I was saying, “I know what autism is, I understand what you are going through. I understand it, I am not one of those people ‘judging’ you as ‘bad parents’. I know, by our brief  but deep glimpse of each other, your boy is a loving and beautiful child. Your child is accepted in my life and some day I hope to touch your child’s life, directly or indirectly, in a positive way through intervention. I know your parenting is not only adequate, but beyond measure. I advocate for your child and revere your patience, love and understanding.” Never once using the word ‘autism’ or implying that their boy had the affliction, I assured them that it would all be okay, and he world will eventually catch up.

Autism is more prevalent in our society than many of us even realize. It is a growing concern that requires immediate attention, with an open mind and compassionate disposition. One in 110 are currently diagnosed with autism today, previously compared to approximately 1 in 11,000 in 1975.

The reason I share this memorable experience, is to share with others what autism is like and to hopefully foster a sense of acceptance of autism among those who do not live with autism. My hope is to encourage a sense of urgency as well as compassion among our society to learn all we can about autism, inspire advocacy and acceptance, and help make the world a better place, among those with and those who live with autism.

© Susan Simmons, Autism Today, Conference Liaison

Girls with Asperger’s

Are there behaviors that are seen in girls with Aspergers, but not in boys, that we haven’t yet identified as part of the profile… or certain gender-related behavior that might fool us into ruling out the diagnosis? What about the “pretend play” that has been observed in many young girls at our center, which on the surface appears to be quite creative and imaginative?

There seem to be many girls (on the spectrum) who are enamored with princesses, fantasy kingdoms, unicorns, and animals­­. How many diagnosticians observe these interests and skills as imagination, and rule out a diagnosis based on these behaviors? Might this interest in imaginary kingdoms and talking animals be more common among girls than boys, yet still exist alongside other autistic/AS traits?

And what about one typical response to confusion or frustration­­–hitting or other such outward expressions of frustration? Does this type of acting out occur more often in boys with autism than in girls? Is confusion or frustration simply easier to identify in boys than girls because we already look for it?

Among the general population, it is commonly thought that boys do “act out” more than girls. (You sometimes hear teachers complain there are too many boys in his or her class, and its impact on the class’ personality!) Is it easier to identify boys as having autism because these behaviors are more obvious, than girls who may experience inward or passive signs of aggression?

Professionals whose task it is to diagnose individuals with autism or Asperger’s need to learn more about the full range of qualities and personality differences unique to girls and women on the spectrum.

And what about the girls’ and women’s route to self-understanding? Indeed, several women I have worked with who have Aspergers have talked about the unique challenges they experience because they constitute a “minority” within this special group of society.

I believe that in order to gain self understanding, each person with – or without – autism needs to see his or her own reflection in the world. I call this ‘seeing one’s place.’ For people with autism or AS, who already are challenged in this area, it becomes imperative that they meet, listen to, talk with, read about, and learn from others with autism. What happens as a result of this coming together is that they are able to see their ‘reflection’ and better understand their own unique styles of thinking and being. Women with autism, although benefiting greatly from getting to know other people with autism, often find that they might be the only woman (or one of a very few women) in the group.

Read more…

Learn more about Asperger’s Syndrome at “Making Friends & Managing Feelings” with Dr. Tony Attwood July 12th in Edmonton or July 14th in Toronto

“Making Friends & Managing Feelings” with Dr. Tony Attwood




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