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.

Stories From the Heart: The Aftermath of a Mother’s Decision

On July 22, 2010, a news story broke in Dallas, Texas of a 30-year-old mother of two young children who had strangled her children because they were Autistic. Zain Akhter, 5, and his sister, Faraal, 2, refused the bathroom cleaning chemicals mom attempted to make them drink . Their mother Saiqa Akhter then took a wire and strangled both children killing Zain immediately. Faraal was in a coma and died the next day. Saiqa faces two counts of capital murder. In Texas if a murder of a child under the age of six occurs it is directly a capital murder.

The news reports lack detail about how Saiqa determined her children were autistic. Saiqa claims that Zain showed signs of Autism. However, Saiqa does not establish proper identification of Autism by a medical professional. It was a possibility Faraal would also have Autism. Again, here was nothing stating in the news reports of diagnosis of Autism.

Saiqa and her husband Rashid Akhter emigrated from Pakistan in the 1990’s. The recording of the 911 call released demonstrates patent issues with Saiqa’s English skills. However, she did seem to have a firm grasp on the English language.

With that said, questions remain as to why Saiqa believed her children had Autism but did not seek medical and mental health services for her children. The number of supports available to families with children diagnosed with Autism is available. There are agencies available to provide respite care at the very minimum.

Most children with Autism are able to obtain developmental therapies and assistance with their primary care needs taken care of by a support staff. Physical, occupational and speech therapies can be present with detection by a medical professional. There are groups online and in person that help parents of children with diagnosis of Autism which offer advice, techniques, tips and friendship often needed by the main care-taker parent.

The aftermath of this news story is more than just the sadness of two young and innocent children losing their lives. The answer is how this affects the perception the public has on children with diagnosis of Autism. Children with diagnosis of Autism do not deserve to be killed because they are ‘not normal’ as Saiqa wanted her children to be. Children with diagnosis of Autism are as valuable to society as children with juvenile diabetes, vision or hearing problems, physical abnormalities and learning disabilities. Their contributions may not be immediately obvious to the world until they take the time to get to know the child.

For anyone, a mother included to take a life of a child diagnosed with Autism is unacceptable.

Autism awareness includes being aware of what the signs and symptoms of Autism are.  It also includes recognition of how valuable they are to society.

By Dannett Frey

* 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: You Are Not Alone

You are not alone– These words may have several meanings depending on where you happen to be in the process of accepting your child’s diagnosis.

If you have recently learned the facts regarding your child’s condition, I’m sure you feel like the only parent in the world that has a child with a disability. You’re doing everything and anything to just get you and your family through these days; you’re in what I call “survival mode”.

Your days are spent with multiple doctor appointments that you don’t completely understand, you’re trying your best to focus on all of terminology that professionals are using to describe your child, and at the same time, you are doing your best to stay strong for your entire family. When you are in public, doing the things that you did before the disability, everything and everyone around you seem a little surreal, and you’re wondering how the world can possibly be going on when your world has stopped.  You think to yourself, don’t all these people see this great big sign on my forehead that says “parent of a child with a disability”?

You are not alone.

Or maybe you have been at this for a little while and you have started to accept the fact that the child you dreamt of before he or she came into your world is not the child you are caring for, and that’s OK—you’re doing everything in your power to get the services your child needs, at any cost–you are willing and ready to pay.  You’re sacrificing everything you knew before this precious human being came along, and you don’t mind one bit.

You are not alone.

And maybe you are a special parent that has had a few years experience, and you know that you know that the person your child is today is the person he or she was meant to be. Your child, because of his uniqueness, has touched the lives of so very many people that he has had contact with over the years, but the life he has changed more than anyone, is yours.  This beautiful person that you have been caring for has reshaped the make-up of your heart.  You are continually growing as a person because of all the challenging life experiences you have had the privilege to learn. You were chosen to be a special parent and you are so very proud of the parent that you have become thanks to your very special child.

You are not alone.

Wherever you are currently in raising your child, I feel it is so very important for you to know that there have been so many special parents that came before you that you can learn from, but more importantly, that there are many new special parents that you can encourage, reassure and support like no one else in their life can.  I feel we have a responsibility to seek each other out through support groups and organizations-local and on-line, and through our neighbourhoods and schools.

Regardless of the name of the delay or disability, the feelings are all the same, and it is vital that we all help one another, so whenever we need to hear the words you are not alone, someone will be there to say them.

By Maria Spencer

* 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: Paris, With New Eyes

I am a 49 year old man diagnosed with Asperger’s Syndrome, living in the UK, and I have just returned from my first trip abroad in 8 years. It was a three day stay in Paris with my girlfriend. Not much to remark about there, one would think. But my last trip abroad had also been a trip to Paris in 2002 , and since then my world has been totally transformed.

Back in 2002, I was married, in full-time employment and most significantly, a heavy drinker. I had never heard of Asperger’s Syndrome. The following year my marriage broke up and I lost my job, due mostly to my drinking. I used alcohol to deal with the overwhelming sense of anxiety which I had had since childhood. I had also abused tranquilizers to help cope with the levels of fear and stress I experienced in day-to-day life.

After two emergency hospital admissions for liver failure and alcohol poisoning, I had two pieces of fortune. I got a place in rehab and also heard of AS for the first time. It seemed to be a perfect description of both my problems and my abilities. The CBT I received at the rehab, helped me to stay sober to this day, along with my understanding of myself. I received a formal diagnosis and moved to a coastal town to study and start over as a sober man, aware of being on the spectrum.

I now help deliver Asperger awareness training, write and have had a book published about my experience: ‘Asperger Syndrome & Alcohol: Drinking to Cope?’  I discuss how I used the alcohol as a tool to deal with the intense anxiety I felt in dealing with day-to-day life. I have met many people who have relatives or friends with AS and who also have substance misuse problems, and I explain to them that when you understand the nature of your condition, it is simpler to find coping strategies.

I have downsized my life considerably. I used to work part-time and am now self-employed. As a sober person I am not using any substance to deal with my anxiety, therefore, with the help of friends and family, I make sure that I can avoid anxiety-inducing situations wherever possible.

On my recent trip to Paris, my partner acted as my buffer and interpreter to the strange world I was in. Previously, when I drank, a trip to Paris passed in a blur. Now, although still very anxious, I could appreciate the beauty and magic of the city. I find that both the therapy I received, as well as the knowledge of my condition, enabled me to live a new and fulfilling life. I know others can, too.

By Matthew Tinsley

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

Stories From the Heart: Perfect As They Come

When I was pregnant with my firstborn, we had done everything to ensure that it all went perfect. The prenatal checkup, all the doctors’ appointments, and genetic testing for disorders we were concerned about. Everything was perfect.

After 13 hours of labor, my daughter arrived. Since she’d gotten wedged around the pubic bone and took two hours to get out, there was a whole team of doctors there to make sure she was OK. And she was OK, but she had two severely clubbed feet.

The doctor described it as a “packaging defect”. It wasn’t genetic. It wasn’t environmental. It was merely a symptom of how she was positioned in utero. That didn’t make it any easier. My precious perfect firstborn she had golf-club shaped feet at 90 degree angles to her legs. We sat through the lectures and advice. We took her to her first orthopedist at 5 days old. She was in corrective casts up to her hips before she was a week old.

Being a January baby, we managed the first weeks fine. She wore long dresses and onesies that concealed the feet. With spring, however, she couldn’t wear so many layers. Trying to avoid stares, questions, and people’s ignorance.

The worst moment was when I took her for a walk at the mall, and a nice matronly woman started cooing at my daughter. My daughter beamed up at her. The woman then said, “Oh, and let me tickle those cute little toes.” Her face changed when she pulled the blanket back and saw the two casts. “Oh, my God, how on Earth did you break these baby’s legs?” And everyone in earshot stared at me. I stammered that she had a specialist, it was doctors’ orders, but she had already marched off from what she deemed an abusive mother.

After that I later took to carrying my pediatrician and orthopedists’ cards with me to whip out if confronted again. If they had questions, they could ask the doctor. Fortunately, no CPS or police ever came by. After six months of corrective casts and another year of corrective shoes, my daughter’s feet were pronounced “fixed”.

She learned to walk late, but was running and climbing everything within weeks. She is now an active acrobatic two year old that has climbed everything in the house but the fridge. Unlike other birth defects, ours was “fixable”. Downs’ Syndrome can’t be undone. Heart defects require terrifying surgery and constant worry. In that regard, we are utterly blessed.

It wasn’t until my son was born that I realized how different it was to have a “normal” baby. It wasn’t until I had him screaming that I realized the depression I’d had with my daughter. And how much easier it was to take him into public, without the fear and worry that taking her into public had wrought.

He was a perfect baby with ten fingers, ten toes, and all the body parts in the right place. It’s such an amorphous ideal. Yet we don’t realize how much can possibly go wrong until it does. And how precious that health and vitality is until you realize how tenuous it is.

Author Unknown

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

Stories From the Heart: Lessons from the Classroom

As I sat in the corner of a classroom alone and ignored on my first day of what was supposed to be a “wonderful experience”, I began to think that maybe I had been wrong to sign-up for Psychology Practicum. I had looked forward to taking part in Practicum- a “hands-on experience” that would bring the concepts I’d been learning about in my Psychology class to life- ever since my older sister had participated in the program and told me what a wonderful experience it would be for me.

By spending an hour of my day in a classroom for mentally and physically disabled students, I imagined that I would single handedly change the lives of several children. I would teach them to count, recognize colors, and I would give them immeasurable amounts of love and attention. Visions of the lessons I would teach and the good works I was about to perform had danced in my head as I wrote my name on the Practicum sign-up list.

I could not have been more wrong about what, or who, would be taught. The first day didn’t live up to what I had envisioned the experience to be. I was placed in an elementary school class of seven boys, but they were not as affectionate as I had hoped. They didn’t shower me with hugs and kisses. In fact, they barely even acknowledged me. I could not imagine how I was going to teach them to count if they would not even tell me their names.

As I headed for my car I wondered what I had gotten myself into. Not one single boy had so much as looked at me, and I was starting to wonder why I hadn’t just stayed in Home Economics, where I could have learned to bake cookies and gotten an easy A without the burden of writing daily journal entries about a bunch of children who did not know or care about my existence. I was wrong again.

The next day their little faces looked at me when I walked in the door, but they soon resumed their games of basketball and toy cars. On Wednesday they began to warm up to me and curiously wander towards my corner. By the last day of the week a little boy named Chandler ran up when I arrived and said, “My Anna is here!” Needless to say, by the end of my first week working with those seven boys, I was in love.

The ice had been broken, and every week after that, I grew closer and closer to “my” kids as they opened up to me more and more. By the end of the semester when I got there each day the kids would not stay in their seats because they were so eager to greet me at the door.

When I would leave at least one child would always run after me and beg to come back to school with me. They may have had physical or mental handicaps, but I still marvel and the unbelievable grasp they had on what was really important in life.

Though none of the children were physically blind, they were all blind to outside appearances. Though none of them will ever be able to obtain a degree in psychology, they were all amazingly sensitive to the emotional needs of others. Though many people may pity them, they were some of the happiest, most joyful people I have ever known.

Children with special needs are amazing, but that is not to say that working with disabled kids is always an easy job. It requires lots and patience and understanding, as I learned during my time in a special- needs classroom. However, for the special people who teach, parent, and befriend such children, the rewards far outnumber to trials.

Though some days I was ready to scream when I left the classroom, my heart was completely stolen. No matter what frame of mind I was in when I entered the classroom, by the end of the hour my spirits were completely lifted. One horrible day I was on my way back to school when I recognized the vehicle of my classmate and friend Andy in a ditch surrounded by police cars.

A few days later, the boy who I had gone to school, summer camp, and church with since I was just a toddler, died. When Andy passed away everyone in our entire school was devastated. His mother was our assistant principle, and every teacher, janitor, and student knew Andy’s mischievous ways and warm grin.

Afterwards I was so sad each day when I went to class. I never mentioned anything about Andy to the boys, and even if I had told them in words they would not have been capable of comprehending what I was telling them. Somehow the boys just seemed to know that I was sad, and they knew just what to do.

During the weeks after Andy’s death the boys were on there best behavior for me; I never had a single behavior problem. I also got more hugs from them than I had gotten in the rest of the semester combined.

I do not know if Xzavier will always remember his colors, but I know that I will remember the feeling I got each time he would hugged me, or asked me to play “baket bull” with him, even though he rarely got the ball in the hoop. He taught me that no matter what your disability is you can still smile and radiate with personality.

Xzavier cannot speak because he has a tracheotomy in his throat to help him breath. However, he has taught me not to judge people by what is on the outside. The first time I saw him I saw a little boy with a chipped front tooth and an incision in his throat that sometimes leaked mucus. I no longer see the tracheotomy, but instead I see a beautiful boy who laughs uncontrollably at the mention of “calling his mom” to report that he “pooted” at snack time.

Looking past outside appearance is just one of the many lessons those boys taught me. To explain everything I learned from them would be impossible, but I do know a few things for sure. I know that they have made an impact on my life that will last forever.

I also know that no text book could have even begun to teach me the lessons I learned from them. I feel very blessed to have had the opportunity to learn from seven understanding and beautiful boys. They taught me lessons no one else could have, truths that have strengthened my character for a lifetime.

Author Unknown

 

* 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: Odd Twist of Fate

“She’ll probably never walk.” Imagine the bleak picture this announcement evokes to a set of panicked parents. Concerned when their twenty-four-month-old daughter hadn’t begun to walk, a set of anxious parents took their child in for an examination, unaware such a proclamation would be made. Those were the exact words the doctors said to my parents.

After numerous tests, doctors proclaimed that I had Cerebral Palsy. It was predicted that I would probably never walk or speak or be a productive member of society. Once the diagnosis was made, years of difficult circumstances followed. I was placed in special education classes, as well as in occupational and speech therapy.

Although my disability was later labeled as “mild,” it was very pronounced in my younger years. I struggled to form an identity, which was a difficult undertaking when I was teased for being clumsy and weak.

From an early age, my peers taught me I was unacceptable. To survive, I often turned inward for salvation and peace. And that’s when I learned I had strength after all. The feelings came easily enough; the anger at being alienated, the sadness at being different, and the fear of not being able to find my place in the world.

I began to write down the pain. Only the written word allowed me to fully express myself. And after the hurt was written and therefore explored, it began to fade. Not entirely, of course. No one can live a lifetime without it. But the wounds began to heal as I wrote of promise, of hope, and of possibilities.

In school, I was able to excel in my English classes. I won several writing contests in elementary school. My D.A.R.E. (Drug Abuse Resistance Education) essay was voted to be the best by my sixth grade classmates. I had the honor of reading that essay in front of the entire school. In junior high school I excelled at advanced English. In high school, I wrote several compositions that earned me college scholarships.

Nine months after college graduation, I got a break that made me realize I may have found my purpose. My last college course’s final assignment was to do a research paper on a topic of importance to us. Since I was about to enter the work world, I chose the issue of disability disclosure during the job hunting process.

My professor loved my paper and mentioned I should get it published. I submitted my work to Careers & the Disabled. In the fall of 1999, my English paper became my first published article.

Over the last six years, I’ve had articles published in a variety of publications. I was editor-in-chief of Banshee Reeks Nature Preserve’s newsletter, The Preserve Press. I was an editorial assistant of a non-profit magazine. I had a short paragraph published in ‘Chicken Soup for the Recovering Soul’. And the proudest moment of my life occurred in September 2005 when I self published my first novel, ‘The Butterfly’s Dance’.

I have, thankfully, discounted the doomed prophecy of those doctors of yesteryear. Today I am a fully functional member of society. I have a college degree, live on my own, and earn my own income. I am a freelance writer and a published novelist. And I feel this is only the beginning.

An interesting thought occurred to me during this whole process. Without my disability, without the pain and the struggle to find my identity as a disabled person, this glorious gift of exploration wouldn’t have been possible.

It’s an odd twist of fate, I know. My love of writing would be unacknowledged if not for my disability. I now see that without my disability, I wouldn’t have discovered my true ability.

By Christyna Hunter

* 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: I Never Thought

Like everyone else I never thought that they would have a child with special needs. But I did. I knew that Kyler was special when he was born. He was born 3 weeks early by caesarean section, and weighed only 5 lbs. He was a clingy baby, always needing his mommy, never wanted to be left alone. When he got older, he was saying all kinds of words; book, bird, water, etc.

Then all of a sudden the words stopped. I didn’t hear the word mommy until he was almost 4. I would take him out with other moms and their kids, but I would always leave in tears. Kyler wouldn’t listen to me. I heard everything: “You need to learn to parent”,  “Why think about more kids when you can’t even be a mom to the one you have?”, “You are definitely not cut out to be a parent.” Their words hurt, but I pushed on.

When Kyler turned 3, we were told that Kyler was Oppositional Defiant Disorder.  Then he turned 4 we were told that he was Attention Deficit Hyperactivity Disorder, and when he was 6 we learned that he was Pervasive Developmental Disorder – Not Otherwise Specified, basically putting him on the Autism Spectrum.

But you know what? I’m not a bad mom, God graced me a beautiful little boy, who is smart, witty, funny and incredibly sweet. Kyler has taught me tolerance, and patience. He gifts me with laughter, and intelligence. A child with special needs can teach a person so much, without the child ever knowing it. It brings people closer together, and makes a person become more aware of the world around them.

No, I never thought that I would have a child with special needs, but I can’t imagine the world without him.

Author Unknown

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

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1 in
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Diagnosed with Autism

Over
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Autism Diagnosis a Day

Costs
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Billion per Year

Boys are
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Times More at Risk