Stories From the Heart: Keepin’ Your Eye on The Ball

Ahhh high school graduation! It’s the day where children and parents everywhere rejoice in the end of a 13 to 14 year struggle. Finally completed! Or is it?

I voluntarily gave our family a reprieve for a couple years after graduation…not asking, wanting or fighting an uphill battle for anything. I regrouped and re-established friendships and started new ones. I felt the healing process had begun.  I thought to myself “This is the person I used to be” before all the frustration with the endless IEP’s and   meetings with district officials that began over a decade ago.

Here is some sage advice:

“Vacation is good, but never take your eye off the ball”.

Remember how we fought so Johnny wouldn’t regress if he didn’t have summer school? Well the same is true for services after high school. There needs to be a continuum for our young adults. You need to be ahead of the game and keep things progressively moving along.

Programs end at ages of 18 and 22 and often there are times when it seems there is no one to help with the next steps of the journey. But you have to find those people to help you. While your child is in high school, that is the time to prepare for adult hood.

Be in touch with programs through SSI, like “Ticket to Work” in the state of California that helps your adult child get prepared to work. They will provide services to get them there, such as life skills, social skills training, using a bank and learning how to use public transportation.

In California we have Regional Centers that provide more services at this stage of the game. Every state has a different agency and you should know the ones in your area. Get to know them and be on the board if you can.

Network with other parents and find out what your local Autism groups can help with. Don’t wait till the last minute where everything will be taken and there may be waiting lists. If you do wait you might be waiting for a very long time.

In these economic times, it is unfortunate that there are fewer programs to choose from at a time when our children need more.  If your children are going to college many are impacted and it will take more planning to get your child to succeed.

Collaborate, Network, think ahead and most importantly do it with a cool head.

By Christinna Guzman

* 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 Glass is Half Full, Today

Every year when school begins I am filled with hope that my son with an Autism Spectrum Disorder (ASD) will enjoy his school year, making new friends, connecting with his teachers, and grasping the subject matter.  I no longer compare him to his older sister or younger brother, but try to find the areas that he is improving, if only slightly.  He is going to school willingly every day since school started, and has made it through without any anxiety.  He is also initiating doing his homework, and completes most of it on his own so far.  He likes his teachers and has made some new friends this year, too.

But, each year I am also filled with anxiety, wondering if he will be able to make friends, how he will deal with the bullying, if he will like his new teachers, if he will make it through the school day without a panic attack, and if he will be able to understand anything his teachers need him to learn.

I have tried to let go of any expectations that I have for my son on a yearly, monthly, weekly or daily basis, but I am only human.  How far behind in math, reading comprehension, and writing will he be at the end of this year?  Will he be able to handle the increased work load without increasing his anxiety?  Will he continue to have friends that want to play with him and will stick up for him if someone is bullying him?

No one knows what the future holds for their children.  I wonder what the future holds for all three of my kids.  I hope that each of them reaches their full potential.  However, the question remains.  What will my son’s full potential be?  I try not to ponder this, because it can literally drive me crazy.

The good news is, for now, I am hopeful that today will be a good day, and this week will be a good week.  Although I can’t be sure what will happen tomorrow, I can sleep tonight knowing that I can choose to believe my glass is half full!

By Darcy Kahrhoff

* 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: 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.

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.

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