Stories From the Heart: Sasha

Sasha was born a healthy beautiful child with all the potential in the world. As a first time mother I was so anxious and happy at the opportunity to love and raise this perfect human being. He laughed, played, and met milestones as any other neuro-typical child. He would consistently say “Mama or Dada”.

Sadly, soon after he turned 9 months old he started to drift away from us. His eyes were so empty and blank as if there was nothing there. As the months went by we thought that he had become deaf or had some form of mental retardation that was hidden under his beautiful skin. I remember waking up each morning asking “God, where is my child today? What is happening with my son? Please guide me in the direction to help him, as I am just as lost as he is.”

Every day was a new day into regression. He would hit his head on the floor as if he had no feeling or concept of hurt. I was at a loss for answers. Family members did not understand why I was feeling as if something were wrong as he was the most beautiful child in the world to them and children with a disability have visual side effects. Not my son; his hair is as straight and shiny as hair could possibly be. His eyes were dark brown with eyelashes so long he would tickle your face if you were able to hold him. His skin so soft and tan, he is a perfectly build child with no visual flaws. We often talked about him being a child model one day.

As time went by he got to where he would have no physical contact with anyone. For a mother to have her baby refuse to be held, hugged, cuddled, loved, kissed goodnight is was unbearable. My heart and soul was in agony and confused. Why is this happening? What is wrong with my child? What is the answer? I then made up my mind that we were going to find out how my son was stolen from me and I was determined to get him back.

At age 2, after many doctors appointments, specialist, and tests, Sasha was diagnosed with Autism. I was very relieved to finally have an answer but scared because our only suggestion was to continue with the therapies that were not helping him.

Over the next few months I learned about an alternative treatment using diet, supplements, and heavy metal chelation that has been known to help children with Autism. My family thought that I needed to be in a loonie house but I was determined to try this as a last resort. I promised Sasha that I would bring him back to me somehow no matter what it took.

As I tried to find a doctor to help me with the biomedical approach I was laughed at and had doors shut in my face. Why would no one help me with this? I discovered a local pharmacy that has helped parents and doctors treat their children biomedically for many years and headed straight there.

For the next 6 months my son made progress and started smiling again. No more stimming, banging his head, lining up items, OCD actions; they were all gone. I found a doctor in a close state that was willing to help me in the final stages of the biomedical treatment. This was the answer to my prayers that I had been waiting for so long. 6 months more into the treatment and Sasha is well on his way to recovering from Autism Spectrum Disorder.

We learned that he was severely heavy metal toxic and began chelation using a transdermal form. On day 3 of chelation he started potty training himself. Before then he had never shown signs that he knew he was capable. He language still consists of babbling, no actual words but he puts noises together to make his own words. He uses sign language properly and also uses picture properly to communicate.

Sasha came and sat in my lap the other night. He looked into my eyes, smiled and kissed me as if he had been waiting to do that for years. He hugged me so tight and didn’t let go. As I wept he looked into my eyes again and smiled as if he knew I had kept my promise. My son was coming back to me. He now has a chance at a normal life and we can move on from this day forward. Before I laid him down to sleep he signed “Mommy, I love you!”. I signed back “I love you too Son.”

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: Baptism into Disability

Immersion – maybe you’ve witnessed people being baptized in a river? They go to the water’s edge anticipating the dunking but also feeling some trepidation about the process.  I think, most of all, they are looking forward to the time beyond the ceremony when the new life conferred by the baptismal experience is part of their everyday life. Now, picture this in your mind:  You’re walking into the water, taking a deep breath, going under, sinking down, feeling the cold water all around, awareness of needing to come up for air, the pressure increasing, coming to the surface, sputtering…sputtering.…a new life.

My husband and I talked about events our family would share after the new baby joined her two-year-old sister, Alissa.  We often restated to each other that the only thing we really cared about was having a normal healthy baby.  But with Heather’s birth those dreams were shattered.

For most families, the doctor is the messenger that turns their dreams into a different reality.  The morning after her birth, our pediatrician came to see me and abruptly announced, “Your baby has Down syndrome.”  I’m sure he said more; I just don’t remember any words past that point.

The stilted movement of my legs walked me down to the intensive care nursery where this newborn lay in a small plastic bassinette.  She looked so frail and tiny, a scrawny old-lady visage with a wire taped to the top of her bare head. Certainly not the cuddly bundle I had been anticipating.  The nurses found a rocking chair for me, gave me a sterile gown, and put this Cabbage Patch-sized babe in my arms.  I started rocking.

Numbness — frozen without the sensation of being cold — is how I remember that moment.  I was hanging immobile underwater where sounds are muted and perceptions altered.  Bodies moved around me in slow motion while words spoken to me were garbled, unintelligible.  In that short moment that seemed unending, I could not breathe.  Where was the air?

A day later, with empty arms and a heart more than heavy enough to make up for the weight of the missing baby, I left the hospital.  Heather was too frail at 4 lbs., 6 oz. to leave the nursery.  At home, the numbness dissipated and as I surfaced momentarily for that breath of air, the force of my shocking baptism into the world of disability hit me:  I was faced with unknown circumstances as this was my baptism.

The receding numbness was quickly replaced by a tsunami of emotions; overwhelming, uncontrollable, soaking.  I sought refuge by standing in the shower and crying, but even there I fought the sensation of being enveloped in the gloomy darkness of continually being dunked under cold water.  I longed for relief from the gasping, never coming above the surface long enough to take a deep breath of life-giving air.

As her medical conditions became known; a missing valve in her heart, poor lung development, no suck reflex, worrisome signs of pulmonary hypertension: ugly thoughts came, “Maybe she won’t live, maybe we won’t have to deal with this.”

There were moments in those first weeks that provoked me into pulling that much needed oxygen into my lungs.  Heather’s sister and cousins came to visit her at the hospital.  I observed that they were just kids holding a new baby, a little overwhelmed with the monitors, but not at all concerned with the thing that was uppermost in my mind:  this baby has Down syndrome.

A neighbor ran into me while I was taking a morning walk.  “Congratulations,” she said, “I hear you have a new baby girl.”  Another neighbor delivered a teddy bear cake frosted in chocolate icing with pink lettering, “Welcome Heather.”  Somewhere, deep inside of me, a thought bubbled up, “This is a new life, certainly a cause for celebration.”  Sudden inhalation occurred as I saw these moments in contrast with the tears, sympathy-laden hugs and condolences our family had been receiving.  Would these life-giving moments ever become the predominant ones?

As Heather slowly gained weight, the time came for her to come home.  And although it was a relief to have this baby at home, it came with the price of the incredible stress of medical fragility. Different medications that needed to be administered at varying hours of the day and night, a heart monitor and oxygen tank, constant oversight of special formulas, and numerous doctor appointments.  She also came home with the scepter of impending surgery to create the missing heart valve.  That surgery, we were told, would have to wait until she gained some weight or until her lungs were no longer safely able to process the back slosh of blood caused by her missing valve, whichever came first.

I went back to numb, suspended-in-water actions to get through the day.  I garnered moments of concentrated energy which I used to focus on keeping this baby alive until she had to have surgery.  And I chose to put facing her disability on hold until that point.

On a visit to the cardiologist in mid-January, we were informed that her condition was worsening and the surgery needed to be performed within the next week.  She was only two months old and weighed just under six pounds.  We had anticipated this day but had not expected it to happen so quickly.  We all survived that day of surgery.  I wish the experience itself and the seven-week long hospital interlude were as effortless as that sentence.

After Heather’s successful surgery, I was struck with the concrete knowledge of her permanent existence in our lives.  I needed to move on and accept this tiny thing as more than a recovering patient.  It was time for me to head out of that river and onto the dry land with the baptism experience itself behind me, to take charge of my feelings and emotions and to acknowledge the existence of her disability and its long-term significance.

Heather’s healing from her surgery was excruciatingly slow.  Our family began showing the strain of weeks of multiple daily trips to the hospital sometimes punctuated by daylong sojourns there with Alissa in tow.  Her release from the hospital was predicated by her ability to suck down a prescribed amount of formula in a 24-hour period.  For over a week, I worked single-mindedly at getting her to consume the allotted amount.  At the end of that week, her chart disappointingly showed only half the amount doctors had deemed necessary.  I began to doubt the nursing staff’s commitment in energy, patience and time in getting Heather to suckle her bottle while I was not present.  I envisioned the weeks stretching to months and suddenly I knew that this was not acceptable.  In a moment of insight, I sensed what she needed in order to achieve healing, over and above sustenance, was the nurturing environment of home!

The doctors, however, weren’t going to deviate from their consumption benchmark.  I crafted a strategy that I’m not proud of but it got the desired result.  Over the course of several days, when no medical personnel were in sight, I surreptitiously poured increasing amounts of her formula down the sink.  The charts reflected the desired increase in her intake.

I then called a meeting with her doctors and, with heart pounding, gave an impassioned all-in-one-breath speech asserting that there would be much more time for me to spend coaxing her to eat if I weren’t spending so much time traveling back and forth to the hospital, that the atmosphere at home would be more conducive to eating, and the family would certainly be less stressed.  “And,” I added, “have you noticed that she is already eating more every day?”  It worked!  The next morning we triumphantly headed home!

That incident marked the beginning of my ardent and ongoing advocacy for Heather.  My feet were firmly planted on the shore as I came to terms with the reality of life after baptism.  No one could give me back that child of my dreams.  With the acknowledgement of this, I moved beyond the initial phase of almost paralyzing grief.  As I continued to help my child (and consequently myself) there came the ability to begin to enjoy a new life.  I can breathe.  I have been baptized.

By Dianne McNamara

Dianne McNamara is the proud mother of two young adults: Alissa and Heather.  She is a passionate advocate for people with disabilities and has spent countless hours advocating for inclusion for her daughter and others.  She is the project coordinator for Parent to Parent of Colorado, a statewide parent matching and support organization for parents of children with disabilities.

* 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: Success Is Not Always Reaching Your Goal

The new thing, potty training, was not going well for my son, Sawyer.  He had just begun working with in-home therapists and they wanted us to put him on the toilet every half hour.  My wife didn’t think he was ready.  I wanted to work on at least getting him desensitized to being in the bathroom and sitting down.

I work with children with disabilities at a mental health hospital, but Sawyer is my own son, and I worry that what we do will set him back or not progress as fast as he could.  So Sawyer and I spend time in the bathroom even though it makes him cry.

I thought that maybe he needed a role model (yes, I had role modeled it for him the way only a dad can, but I am 6’4” and did not want to role model using the potty chair), I saw Sawyer’s doll Buddy.  This stuffed guy with his baby face and red coveralls was ignored by Sawyer and slated for Goodwill, but I thought maybe I could put him to use.

“Sawyer, come use your potty chair.”  I called to Sawyer as I propped Sawyer’s Buddy doll on the potty chair.  “See, Buddy’s a big boy.” Sawyer laughed to see his doll on the potty.  I wanted to show Sawyer that the potty chair was perfectly harmless and fun.  He liked Buddy being on there, but wouldn’t sit on the chair himself without crying.

Exhausted from teaching all day, I went back to work with him on the flashcards that Early Childhood had sent as homework.  I  used my teaching techniques to push Sawyer towards progress.  I gave M&M as rewards and pair it with verbal praise, but I was, frankly, frustrated.

Then Sawyer got up and carried Buddy into the bathroom.  And sure enough, Buddy had to pee-pee.  Sawyer resisted even sitting on the potty, but Buddy started going on a fairly regular basis.  With Sawyer’s prompting, Buddy tinkled as I poured water between his fiber-stuffed legs.

Night after night, Buddy began to do everything that Sawyer was supposed to do.  Buddy went in the high chair to eat and signed for all done.  Sawyer deferred the flashcards to Buddy.  Sawyer, Buddy and I sat on the floor and went through the flashcards together.  I asked Sawyer to pick the right card of the three choices laid out.  Through gestures, Sawyer showed that he wanted Buddy to pick the right card.  I had Buddy pick the right card and rewarded him with a M&M.  Sawyer loved that and wanted Buddy to keep going.  Sawyer even occasionally took a turn, but I began to wonder if Sawyer had as much chance of talking as Buddy did.

Then as Sawyer climbed down off my lap one night, he placed Buddy on my lap as a stand-in for him.  This spark of imaginative play is what every parent of a child with Autism wants to see. His act of kindness filled me with hope because I see children with Autism and Asperger’s get labeled as “terminally obnoxious” because they cannot interpret other’s feelings.

Sawyer gave me Buddy so that I would have companionship -or maybe he was allowing Buddy to have some affection, either way it was an act of kindness.  As I believe that giving is the key to happiness, this act of kindness was the first sign that allowed me to believe that everything would turn out all right for my son.

There would be other lessons that my son would need to teach me before I could stop worrying about his future or even his childhood.  But I could finally believe that things were going to be okay after this incident in the bathroom. Sawyer had a tantrum about sitting on the potty.   I looked at him.  “Are you a naughty boy?” I asked, teasing him about his minor tantrum.

“No. I happy boy.”

When you have a nonverbal child that begins to talk, you have a lot of questions to ask him.  He didn’t really answer my teasing question, but rather the question that was most often on my mind.

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: I Wonder Why My Baby Brother Has Autism

My baby brother, Michael, has Autism and is three years old.  He is just now learning to say some words.  Autism is something when it is hard for a baby to learn to talk. Sometimes it is hard to understand him.  He calls me ‘Jonin’ and he calls my brother ‘Woo-woo’.

Well, he probably has it because God wants me to be a good therapist.  I am really good with him. I play with him and help my mom with him. We have a little place for him where there is a pool full of beans, blocks, a work shed, lots of puzzles, a parachute and a tunnel.   My mom lets me and my brother, Andrew, go down there with him.  We usually play Clown Town!

Sometimes I help my mom put him to bed.  I say, “Let’s go to your room” and then I get into his bed then get out so he realizes that he needs to get in to his bed.  Then, when he gets into his bed, I put on his covers, turn on his music, turn off his lamp and then say,” Goodnight Michael”, and shut the door and go downstairs quietly.

God gave Michael a gift so I can learn to be around him and know how to be around Autistic kids.  That is why Michael has Autism.

By Jonathan H. Berry, 8 years old – 3rd grade
Submitted by Sheila S. Hudson (Grandmother)

*Won 1st place at Cooper Elementary School in Loganville GA
in essay contest called “Reflections”

* 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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