Stories From the Heart: Reflections on an Autistic Childhood

When my mother went into labour, she was watching an episode of the old television series Mission Impossible, a portent perhaps of the impossible mission she was about to embark upon raising an autistic child back in the 70’s and 80’s when understanding of the condition was even more in its infancy than it is today.

In fact, I was never technically an autistic child; the closest I ever came to being considered autistic was with a diagnosis of autism residual state at age eleven, which basically declared that I had mostly recovered from the disorder.

But, of course, as we know today, the condition is life-long, and when I was eighteen, I was given a definitive, unequivocal diagnosis of infantile autism.  But before that happened, I was labelled with conditions as divergent as mental retardation, hyperactivity, and social phobia.  Meanwhile, regardless of what was wrong with me, I still needed to be socialized and educated.

A psychiatrist once suggested that I was lucky to have grown up without the autism label–his reasoning being that there were no limits placed on what I could or could not achieve.  While I value the clarity of having a concrete diagnosis, and I would prefer to have skipped all the misdiagnoses; I think there is some truth in what that psychiatrist said.

For the most part, I was raised as a normal child and expected to behave normally.  Where I did have problems, my mother had to rely on her own resourcefulness and interventions that would aid in the development of any child.

To counter my tendency to walk like a duck, my mother placed a book on my head and had me practice walking across the living room.  To encourage me to read, an activity that I found laborious and my special education teachers felt I would never master, my mother always made sure I was enrolled in our local library’s summer reading program; she also provided me with books on my favorite subjects

To keep me socially and physically active, despite having few to no friends, my mother supported my involvement in a number of extra-curricular activities.  Going camping with the Boy Scouts, for instance, ensured that I was rarely without something to do on the week-ends; and achieving the rank of Eagle Scout gave me a sense of self-worth as it also taught me important skills along the way.  I also learned a lot about the world from my mother’s discussions of current events, movies, and TV shows.

As an adult I can look back and see that my mother’s Mission: Impossible has been rendered into a Mission: Accomplished.  Contrary to early predictions that I would never make it beyond the sixth grade, I have a Master’s degree.  Equally important, my social skills are such that no one would ever detect autism; the most they might suspect is introversion.  Certainly, I am not a finished product.  I will continue to develop.

By Gyasi Burks-Abbott

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: The Voice Within

I am the voice within
The child who recoils
From your horrific world
Filled with confusion and pain
I whisper “Stay out”

Lest you disturb my holy contemplation
With your sharp intrusions of chaos and dissonance
Weapons of your world of illusion and strife

I seek only the security of this beating heart
The pulsing of warm blood through these supple veins
The interior light which glows with each breath

The memory of my unanimated past
Where suspended and nurtured, I knew love
I have neither the desire nor ambition to be wrenched forth

Into the cold winter of pain and indifference
I cleave to my idea of self
Safe and secure, in the here and now

Lest you cast me into your woeful existence, of hunger, pain and sorrow
Teaching me envy, jealousy and greed, the grim realities of survival
I yearn to remain in this warmth without want
Where the serenity of pastel colors and soft sounds gently caress the pillows of my mind

Yet the wolves circle, his vulnerability painfully apparent
If he remains unguarded
The evil of the world will devour his pure heart
Lest someone of goodness can nurture him

I can only bring him thus far
I need to know I can trust you
To take us both in your arms with love
To be our buffer and support

To listen to us when we speak
To comfort us when we hurt
To clothe us with the armor of love
For this I pray and offer thanks

That my precious cargo be safe and nurtured
Into your hands I commend my liege
For among the wicked are the good

Those who remember my voice
Those who know the way back
And the perilous journey ahead

For you alone have not forgotten
The pure state of innocence and have
Dedicated yourself to returning to the truth

By Patrick Colucci

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Let Your Voice Be Heard

Every day dawns with a new challenge for me. There is never a dull day in my life. I am a mother of a young man with Autism and I also work as para educator in a self contained class that serves students with disabilities, who have severe behavior issues. The challenging behaviors range from very mild to extremely difficult.

As I play the role of a parent at home and as an educator at school, I have to flip sides to fit into the role that I assume.  The advantage for me is, with my parent instinct, the effective behavior plan in place, and the support I get in my class, I am able to understand the students better, relate to them well, catch cues that may lead to a negative behavior and am able to deal with and redirect them to achieve desirable behavior.

Community trips from school can be pleasurable or challenging. While in the community, we have to grab all possible opportunities to teach the students to be successful and keep them and everything around them safe. When I go out in the community with my students, I have to make sure my students are learning to have good behavior that is accepted in the community and to learn community living skills to be successful when they grow older.

I hold my student’s hand while in the community to keep a close proximity to my student so I can react swiftly when a behavior occurs. The public may not understand why I hold hands with my students (12-14 year olds) in public. Sometimes what I and my team do to keep our students and those around safe can be viewed by the public differently. As a parent, I can understand what others may see and infer. I believe in freedom of speech but I would encourage anyone to ask us question(s) before inferring anything awful.

Since I am a parent of a boy with Autism, I always keep my eyes and ears open when I am in the community. I have stood up to help 2 young women with disability when they were left unattended in a mall few years ago.  If that can happen to those two girls, it can happen to anyone with disability. As parent and as a member of this community, I make sure individuals with disability are treated with respect and are kept safe.

This has proved to be helpful to me to be a better educator as I know what public will observe and assess me when we are in the community.  Every community trip is important for my students and is important to me as well because I am being evaluated by the community.

I am sure everyone is aware of this and is doing their best, when some of them fail to do their best, the community should let their voice be heard.

By Chitra Vijayakumar

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Addressing the Challenge of the Blood Brain Barrier – the 1st Piece of the Puzzle

The blood brain barrier is a network of tight junctions of endothelial cells in the central nervous system vessels.  The cells are polarized into luminal (blood-facing) and abluminal (brain-facing) plasma membrane domains.   These protective membranes serve to allow substances to cross into and out of the brain selectively.  In a newborn, it takes approximately six weeks for the blood brain barrier to become formed.

Within the blood brain barrier there are circumventricular organs which include: a.) the Pineal body which secretes melatonin, associated with the normal twenty-four hour sleep/wake cycle;  b.) the posterior Pituitary which releases neurohormones like oxytoxin (responsible for bonding) and vasopressin (which plays a key role in the regulation of water, glucose, and salts in the blood; c.)  the Subfornical organ which is important for regulation of body fluids and;  d.) the Vascular organ, a chemosensory area that detects peptides.  Each of these organs is sensitive to toxicity.  If any of these organs are toxic, the most common symptom manifested is hearing sensitivity.

Most infants are born with a substantial toxic load.  A study of cord blood performed by the Environmental Working Group identified almost 200 chemicals present in the cord blood of newborns; chemicals which include PCB’s (plastic), chemicals which cause cancer, heart disease and even heavy metals.  At birth, these chemicals already have entered the brain due to the poorly formed plasma membranes.

The mandatory Hepatitis B shot given in somewhat of a robotic fashion without regard to the vitality or size of the infant only adds to the toxic burden.  This vaccination permeates the poorly formed blood brain barrier which is already toxic.  A vaccination designed to create immunity.  Now in a place it should never have been allowed to access.
After approximately six weeks, and before there are any concerns, the blood brain barrier closes and locks toxicity inside of the brain.  Most chemicals including antibiotics are now too large to cross the blood brain barrier.  Accessing the toxicity must be done through another means.

Leaving the world of chemistry and entering the world of physics is now providing a unique approach to neutralizing toxins inside the blood brain barrier.  In much the same way that you would use a tuning fork to tune a piano, specific vibrations placed in an electrolyte solution are demonstrating substantial improvements in sleep, behavior, stimming, and bonding.

It appears that the brain does not differentiate between the vibration and the actual substance such as oxytocin or ACTH.

It is like the key that unlocked the door for 9 year old Bailey who now carries on an interactive conversation without her normal hand-flapping.  Playing with her imaginary friends at a tea party is a delight for all to see.

While there are many issues which must be addressed in working with individuals on the spectrum, this is proving to be one of the most effective and unique approaches to addressing the challenge of the blood brain barrier . . . a challenge which has haunted many practitioners and parents alike.

By Paula L Rochelle, N.D.

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

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