ACCEPTANCE

by Maria Iliou

I'm happy that I started to come to the GRASP/AHA support group. I found a babysitter for my daughter so I was able to attend and it has been wonderful! I fit right in and it's the best thing I did for myself. I have friends from the group and we talk and do things together. We all have a good time.

I received a warm welcome and was overwhelmed with all

the beautiful flowers, butterflies in my presence.

As we listen to different flowers;

each one has it's own uniqueness and special gifts.

Butterflies flutter, birds sing,

flowers giggle, laughing,
and repeat.

We all were searching for levels of comfort and to fit in a group.
Unique quality of all these flowers have Asperger's Syndrome.

Dilemma or Disorder?
by Teri Schwartz

"Why doesn't he look people in the eye?"
"Does he ever sit still?"
"Why is he always pretending?"
"He seems like a brat to me!"
"I'm six and I know dinosaurs aren't real!"
"Why won't he play my game with me?"
"Let's hide so the weird kid won't find us!"

The comments, questions chill me
To untrained eyes it's invisible
My son's another spoiled only child
They don't know the diagnosis or symptoms
Unaware it's something he'll never outgrow
Medications, Psychologists, Therapies
All tried, improvement marginally momentary
It's all part of the Spectrum I'm told
Behaviors typical of non-neurotypical kids

Maybe he doesn't make eye contact enough
He's always in motion, never winds down
Always the safe landscape of his imagination
Can't handle noisy, dark environments
Difficult for him to separate fantasy, reality
Fails to realize he's misunderstood, spurned

How do I explain this unseen ailment to
A material, seeing-is-believing world
Will anyone comprehend if I find the words
Special Ed. a stigma, Disabled a label
Intentions misunderstood, Options few
Support Groups, Battle wearied moms
We must stay within the Spectrum- scene
Socialize with the ones who share our plight

Autism is not just a disorder,
it's our dilemma.

An excerpt from Long Island Expressions: LI Writers
for Autism Awareness available at www.liexpressions.com

Late Diagnosis & Transition Issues

by Bernice Polinsky
read in Albany - January 2001

If the goal of education is to produce a functioning, productive member of society, New York State Education Department (NYSED) has failed many, and continues to fail many, individuals with HFA/AS/PDD (High Functioning Autism, Asperger's Syndrome and Pervasive Developmental Disorders) and their families.

When the full spectrum of all these disorders is included the statistics would be staggering. Tony Attwood, Ph.D. and John Pomeroy, M.D. state that the incidence is 1 in 250. HFA/AS/PDD may be medically different, but are educationally the same, which is vitally important because the treatment for Autism Spectrum Disorders (ASD) is education - appropriate education, and "education" is not a synonym for "academics".

Lack of access to services from VESID (Vocational and Educational Services for Independence for Disabled) has an enormous negative impact on the quality of life experienced by these students, adults and their families. Because many of the students labeled with higher functioning autism spectrum disorders may seem to have less educational needs, their lack of functional, vocational and daily living skills are overlooked and they will fail in life. This is VESID's responsibility. NYSED has the power to change that.

My son Michael is 28 years old. He lives at home and falls within the high functioning range of autism.

Although we knew at age 2 1/2 that Michael had a speech problem, our pediatrician told us to wait until he was 4. "He might outgrow this stage and improve" was the philosophy in those days. At 4 he was diagnosed with LD (learning disability) and then the archaic term of MBD (minimal brain damage) at the North Shore Hospital Children's Diagnostic Center where he received speech/language therapy for a short period of time.

What he really needed was intensive language therapy but we didn't know that then.

North SHore recommended a BOCES (Board of Cooperative Educational Services) placement, which he attended for kindergarten and 1/2 of First Grade. He had picked up a great deal and was too academically capable to remain there.

It didn't take long for the teacher in his regular first grade to pick up on his social and language difficulties. The school did their own evaluation, classified him as learning disabled and placed him in a self-contained class.

He was misdiagnosed, misclassified, misunderstood, miseducated, and mistreated throughout school. Because of this he fell through the cracks of standard special education strategies although there was a lot of attention directed towards him.

His IEP (Individual Education Plan) twice, said he had "some autistic symptoms". When we asked about that we were discouraged from using the term autism. Throughout school we were told by his private Psychologist as well as the Director of Special Education, "Why do you want to label him? Labels will just hold him back and place him in BOCES, which would have been inappropriate for him. We were discouraged from ever appropriately classifying him, labeling him and getting him the help he needed.

By Fifth Grade he was fully mainstreamed with Resource Room. Yet he struggled. He never learned the skills that he needed, to be fully mainstreamed. He was lacking in many of the needed skills for doing higher-level academics e.g., research, writing a term paper etc. In addition he lacked Executive Function. Which means, difficulty engaging in planning activities, problems with organizational skills, impulsivity, preservation, lack of future orientation (transition problems) difficulty with self-monitoring, both in terms of accuracy and progress toward a goal.

His disability not only impacted on academics, it impacted on his whole life, for e.g. social skills-he had no formal help with this. He does not get social clues-this is part of his disability.

Secondary School was often a nightmare for him. He still can't forget the bullying, teasing, kicking etc.

He has some paranoia. This may be because he doesn't know if people like him. He wants to be liked. He has trouble reading facial expressions. Again part of the disorder so he can't tell. Off and on he has suffered from periods of depression, loneliness, anxiety, anger, agitation and mood swings. He has trouble shifting to relaxation methods when he's stressed.

We were not well served by many of the professionals. I recall the attitude of a resource teacher who told me, "You do too much for him". We didn't realize that he was a visual learner, that he would learn better if things were broken down in steps for him. We will never know if modern day early intervention would have helped him with his academics, social skills and language.

Academically he struggled through and he graduated at 18 totally unprepared for the next step. His transition plan was useless. It didn't prepare him for life after high school.

Professionals saw him as college material. So he's smart, so what!!!

Let him grow up; send him to an "out of town college" (they assumed that this was a solution, little did they know). Our gut feeling was that they were wrong but to satisfy everyone we checked out a few colleges in CT and Mass.

When we took a look at the kind of students that were walking around on campus it was so obvious to us that he would never fit in and it would never be the right thing for him. He simply didn't have the skills; he had inadequate independent living skills, social skills and academic skills to be independent.

Transitioning from High School to a local college was enough of a change and challenge for him.

He was accepted at Dowling College in the LD program where he had a tutor twice weekly. In some ways college was a holding pattern for Mike till we found out what he could do next. He did understand some of the academics but he really didn't have the skills for college.

He drove himself to college, a part-time job, and jiu-jitsu 2 times weekly. He continued jiu-jitsu until 4 years ago when he was 24. He had no friends or social life of his own.

At age 19 it was realized that he wasn't accomplishing the needed independence or learning academic skills. There were missing pieces. He was thought to be ADD (Attention Deficit Disorder) but after a diagnosis by Dr. John Pomeroy of Stony Brook we found out to our surprise that he indeed had autism, HFA. He had many of the symptoms, was more able in many areas but needing so much help with social skills, interactive language etc.

This was the beginning of a new awareness for him, for us... It was such a relief to understand ...why. We were now sure that it wasn't our or his fault.

Eventually Mike came around to accepting his diagnosis and finally having an explanation for why he was the way he was. He knew for the first time that he was not alone, he met others who had similar diagnoses. We looked for opportunities to bring him together with others so he knew he was not alone and he could have others to identify with.

He was very fortunate to obtain a job but a few years later we approached VESID to get a job coach. We saw the value of the support and structure that he needed on the job site.

The job coach is needed to customize the environment so he can work with people and so he's not isolated and in his own space.

VESID is extremely important to someone with HFA/AS/PDD. VESID has the ability to support, change and improve their quality of life.

VESID

• needs to provide trained job coaches
• use visuals, written or pictures with job procedures and sequence
• break jobs down into small steps depending on the individual
• create sensitivity for other employees and employers

VESID needs to provide daily living skills such as:

• money management
• budgeting
• time management
• travel training and/or transportation, which is affordable. (Transportation was an issue for our Mike. He needed a sense of independence and ability to get around by himself. Public Transportation was more than a mile away; therefore he needed to drive to get to all of his activities.)

All of this is still happening today, much of the Education community and VESID does not fully comprehend their role with regard to AHA/AS/PDD clients.

Sadly, we are reminded that the reality is that these facts are not isolated. Families are so overburdened, particularly families of individuals with autism spectrum disorders over 21. If they don't have a job or go on to school after high school they are at home and usually completely isolated from the outside world. Their immediate family is often their only contact. They may sleep to all hours of the day or watch TV all day. The lack of structure and activities may lead to anxiety, depression, anger or agitation.

When Mike stays home he is bored, lonely, restless and hasn't enough structure. I try to provide some but I'm just his mother and he needs more contacts.

It wasn't until the passing of NYS CARES that we were able to find people to spend time with him. Sadly, the only people in his "circle of friends" are people that are paid. Mike's been designated to be in a group home with similar people. He needs to move out to be have a life of his own, a chance to grow as an adult, an opportunity to be more independent. We look forward to seeing him begin a fulfilling adult life sometime in early spring 2001. Not to complain... and we are so grateful, but it's through our enormous efforts that we reached this goal.

Everyone deserves to have a life that is fulfilling, he has the capacity to have one, and his disability could be compensated for with housing and good supports.

We want our kids to move along the continuum, we don't expect a cure.

This story is being unnecessarily repeated over and over today.

Just Imagine- A Personal Story:  

With thanks to the Wisconsin ASA

April is Autism Awareness month and like many parents, children and adults dealing with Autism, I'd like to elicit some understanding toward our lives. My son was diagnosed with PDD at the age of 4 1/2. PDD (Pervasive Developmental Disorder) is the main category of Developmental Disorder under which Autism fits. I believe Autism to be a spectrum disorder with many different symptoms and a wide range of severity. Many autistic children are very functional and many adults with Autism have very successful occupations and are living happily (although not without difficulty) among us. Because my son is not as severely afflicted as many depicted in the media, he is often misunderstood. He has many sensory integration difficulties (when the brain does not properly interpret the sensations taken in) that cause him to appear aloof and make it difficult to relate to the world in a socially appropriate manner. I belong to two support groups on the inter net and one such group gathered these phrases to help describe what it's like to be Autistic. If you will allow a few moments, won't you please...

JUST IMAGINE...

-always feeling like you're about to fall backward off a tilted chair.
-walking into doorways that seem to be wider than they really are.
-stairsteps are not where they seem to be.

-feeling hungry but not having the words to express it.
-not associating the feeling of hunger with the need to eat.
-a spoon in your mouth is painful.
-only being able to eat the blandest, softest foods.
-food causing aggressive behavior.
-The smell of food is overwhelming.

-feeling actual pain when someone screams or plays high-pitched music.
-sneezing, sirens, blenders, drills, fire alarms, grinders, vacuum cleaners...
scare the begeebers out of you.
-having unusual fears or phobias.

-having night terrors.
-having sleep patterns that neither fit with family nor achieve restedness.

-not being able to tolerate a hug, tickle or congratulatory pat on the back.
-holding hands hurts.

-being a teenager with no friends.
-being different.
-being teased, bullied and manipulated by peers.

-having uncontrollable rages, facial expressions.
-act impulsively without regard to danger or other people.
-not being able to look someone in the eye, or recognize people.
-being blind to all forms of non-verbal communication.
-employment opportunities are limited or denied.
-independence is elusive or modified.
And just imagine having a child with many or all of these issues.

Please know that the children you see acting out in grocery store check out lines are often NOT naughty, rude nor poorly parented. Many have a neurological disorder that prevents them from dealing with situations you and I handle easily. Life is not easy for children and adults with autism nor for their parents. We all ask for your understanding and tolerance.

Thirteen

by Jon Irwin
Dedicated to Abby Irwin

Tears line the lashes of long dry eyes

for she had held out for so long

almost every time she would go to those oh so knowledgeable

oh so learned doctors to see how she was doing

they would send her home with an unhappy smile

and tidings of the news that she would have but 5 months to live

hoping to god that her offspring would take it and see it as she saw it

another reason to fight

and make sure that even though tomorrow may be our last

that we live it as if it were.

But 5 months would pass and she was still there

to those doctors I had but 3 words to say "not even close."


She would repeat this routine for 13 years

6 months

still there

not even close

8 months

still there

not even close

3 years

still there

not even close.


Until this 13th year

her health would waver

but her strength would not

on this 13th year they gave her 6 months

and sent her home tired and worn from battle

she died about 4 weeks later

Valkyries welcomed her to Valhalla, a warrior in heaven, with open arms

I still had something to say to those doctors

But this time in 4 words

hey, you were close

Life Changes

by Mae Francois

I started silent

No words from my mouth

No noise, nothing

Just silent, alone

I was strange, different

Not deformed, just different

I grew, I gained a voice

Three mothers helped

One father helped

Many friends helped

Two siblings helped

Whole family helped

I grew, became a scholar

Already could read

Higher learning self-taught

Opened eyes, still innocent

Locked away, system's bane

Doctor came, made more for me

Gave me the key to the real world

I grew, became smarter

Life grew harder

System's bane, get rid of me

No more public eye

Solitude

First one too rigid

Cold clones walk the grounds

Richness in snobbery

Left, went somewhere warm

Small place

Became the mother hen

Became the poet

I grew, found a life

I found true friends again

I found higher learning

I found my calling, writer

I found love, a Russian bear

I found a life

I found a degree

I found work

Strange company

Rough outside, but not

Friendly warm

Rappers dog, human delight

Welcome to a brand new life

I am Mae Francois; I am 21 years old as of this writing. I have a degree in creative writing from Dowling College and I have been through a lot in my two decades of life. Currently, I am engaged to a young man named Sergei from Russia and working as a secretarial assistant at a repo company, which is my first job. I started out not even talking, and many thought I would never lead a normal life, but I eventually proved them wrong, with the help of my family and my three "mothers".

Ode to an Aspie Girl

by Laura Wysolmierski

I walk though a fog, The glass jar is there.
The world's full of robots,
Who don't seem to care.
I don't understand how humans can huddle,
While I trip and fall and land in a puddle.
Why is it so I can't socialize?
Yet so many things I do memorize.
A life of abuse and neglect from my peers.
With the eyes of a fearful yet curious deer.
It may not seem right to be so alone.
But one thing is certain,
I'm never a clone.

Also by Laura Wysolmierski:

Eye Contact

Shake everyone's hand
so they say
don't look away
make eye contact
Pupil penetration can cause brain freeze
I see into your soul but I can not speak
I look to the ground and I can speak again
No need to repeat yourself
I can hear you just fine
Louder is not better, only more distorted
Don't offer me wine to loosen me up
I already feel drunk
Don't slap me on the back to give me reassurance
Soft kind words will always suffice
Don't always assume I know what you are thinking
Honesty's less painful than confusion
Though the windows of your soul
are a thing of beauty
The windows of your mind are much complex

If you would like your personal reflection to be considered for inclusion, please email your story to us.

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