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.

Stories From the Heart: Alien

Last week I felt like the mother in the commercial, where her son shows her a good report card, and she starts to cry.  My son is growing up.  He pulled up his grades.  I wish he could do the same for his pants, but one thing at a time.

We visited a college campus this past weekend.  He was happy to find out the school was seventy percent female and he liked the food.  I was happy thinking I’ll have less laundry, and that he was finally happy about going to school, any school.

School was never easy for him.  Not that the curriculum was a problem, the staying out of trouble was the hard part.  He was always too bright for his own good.  He got bored easily and boredom for little boys leads to lots of big boy trouble.

I think every Principal he ever had kept my phone number on speed dial.  I heard far too many times, on the other end of the line, “Is this Devaun’s mother?” “Um, no.  She went out to lunch.  Can I tell her you called?” Okay, I didn’t really say that but I wanted to.  It’s hard being a mother to a child whose I.Q. surpassed your own at age five and yet I’m supposed to know what to do with him.

I knew we had a problem on his first day of Kindergarten. The teacher gave us a tour of the class and I could see his bright little face starting to frown.  Those handsome dark eyebrows, that I loved, were knitting together and I knew he wasn’t happy about what he saw.

“We are going to learn to read in this class,” said Miss Way-Too-Happy teacher. Great.  Does she realize I walked into my son’s room last night, hoping to read him Happy Birthday Moon and found him reading my John Steinbeck novel, Of Mice and Men?

“Then we will learn how to tell time,” says the teacher as she pulled out a pretend clock, made from a paper plate, with black movable hands.  I could see his disappointment growing.  He had been telling time for over a year now.  His older sister still relied on her digital watch for time telling and his mother, the microwave.

I left my beautiful little boy with Miss Way-Too-Happy teacher and a scared look on his face.  That day was the first of many “He did what?” type of conversations on the phone.

I remember him asking me once “Mommy, how many miles to get to San Jose?”  “Ninety miles,” I replied. “Oh,” he said, “so we should be there approximately one and a half hours from now.  That is if we continue to go sixty miles per hour.”   I wondered “Who is this kid really? And what planet did his pod drop in from?”

Once I took him out of school, for a mother and son road trip.  He was ten. I was….none of your business.  We drove to Oklahoma, all the way from California. As we were leaving California I remember pointing at a mountain and saying “Look!  There’s Mt. McKinley.”

He didn’t even look up from his book and said “I highly doubt that, Mom.  Mt. McKinley is in Alaska.”
I said “Really.  Then what is it doing over there?” “That’s Mt. Whitney,” and he kept on reading his book. Hey, how am I supposed to keep the names of mountains and dead presidents straight?

Recently, I was standing at the front door of my house.  The kids were arguing and my arms were full.  I was jiggling the door knob with one hand and holding my keys in the other.  I kept pressing my cars automatic lock and unlock feature on my key chain, while getting frustrated that the front door wouldn’t open.  I honestly stood there shaking the door knob, to my house, and said “What is wrong with this thing?  I just bought the damn car.”

He quietly reached over, took the keys from my hand and opened the front door…with the house key.  Then he looked up to the sky, as if praying, or was he searching for the UFO that had accidentally left him, to come back and take him home, to his true mother.

Over the past twelve years I grew to know all of the schools educators and administrators, much more than I would have liked.  I have paced the floors, yelled, cried, and replaced property damage.

I have spent countless hours circling neighborhoods and calling friends houses, to look for him, and then cried and gave thanks when I found him.  I didn’t know what to do with him, but I never want to live life without him.  Maybe I’ll be lucky and this six foot three extraterrestrial will remember to “phone home”.

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: A Soft Wind Flowing

I work day in and day out with children who have an array of disabilities. Truth be known, no two children are ever the same, despite the same labeled disabilities. What fascinates yet mystifies me at the same time, is our inability to see things the way that they do.

Many children I work with have selective oral expression. But I feel we learn more from them, than I do from co-workers, friends and family.  Sometimes we educational assistants, teachers, special education teachers, respite workers and so on, get so caught up in societal rules of normalcy that we often don’t take the time to see the things that we can learn from our students. This leads me into my story.

As I was walking along a hiking trail with a little Autistic boy, I was watching him look all over the place and smelling things. I was trying to get him to touch certain items like tree moss or water by the river, but touch was a very difficult sensation for him. He was highly touch sensitive. So I kept trying to say things like “Look at that flower, let’s go smell and touch it”. Every time his response would be “No thank you.”

We finished the hike and went back to the classroom to write down a few things in categories. We separated what we saw, what we heard, and what we felt. Having no problem with the first two categories, we moved on to the “What We Felt” section.

To be quite honest, I didn’t know what he was going to write, since he didn’t want to touch any of the items. So I told him to leave it blank. But, by that time I said that, it was already filled in. I figured that he probably wrote down what he saw me touching, such as the tree moss, branches and water.

But when I read his answer the two things he wrote down that he felt; were the hot sun on my face, and a soft wind flowing past my ears when we stopped walking to take a rest.

How profound was that!  I was so proud of his answers! Perhaps we should all take the time to feel the wind.

By Jennifer De Franceschi

* 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: My Hope

Perhaps through some miracle, my son David may turn out to be like Alfred Nobel, Pablo Picasso, or Hikari, but it is extremely unlikely. Those people touched the lives of multitudes through their works. David touches the lives of only a few, but the lives that he does touch are greatly enriched by his presence.

His smile is his greatest work of art. He has uttered only a very few words, but not one of those words has ever been cruel or dishonest. Each word has been precious to us. David knows how to love others and accepts the love of others with grace and dignity. His family, his friends at school, his teachers, and everyone else who know him have learned something from him, and see the world a little differently because he has touched their lives. He finds joy in the world, and he brings joy to it. His presence transforms us in wonderful ways.

He is not likely to turn out to be a great scientist, musician, or artist whose name will be remembered throughout the ages, but neither will I.  Neither will the vast majority of the people on this planet, and yet their lives have meaning.  My hope is not about who he might become; I simply hope I will never lose the ability to see the wonder of the person he already is. He has the courage to live in the present, and, through him, I am learning to live there, too.

He teaches me to accept him for who he is, to accept and embrace his disabilities along with every other part of him. Having learned that lesson, perhaps I can learn to accept myself the way I am and everyone else just the way they are as well.

The hope that I hold for my child is that he can live his life among people who respect and cherish him as he is, and that he can touch the lives of those people. I think that is more than enough for any of us. David teaches me something about being human, and as I begin to learn it, I am becoming more human.

My relationship with David is not unique. Parents and thousands of others whose lives are touched by people with severe disabilities tell us about their own transformations. Sometimes they talk about little things; sometimes the effects that they describe are huge, but they all see the world differently and, in some way, they draw on a new strength. Somehow they come to a new place in their lives, an unexpected place, and discover that they like where they find themselves.

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: What They Forget To Mention

I remember the day of my son’s diagnosis of Autism as if it were yesterday.  The tone of the doctor’s voice, the silence in the room, the words “lifelong disability, no cure, I’m sorry” still sting when I allow myself to reflect on that day.  But I have thought, on occasions too numerous to count, that someone should’ve mentioned that THIS would be part of the package when my child was diagnosed with Autism.

Someone forgot to mention that I would listen to my child’s simple utterances, or attempted approximations, as if he was a world leader giving the speech of a lifetime.  I could never have imagined the worth of a single word despite the fact that I may never hear it again.

Someone forgot to mention that when my son was finally potty trained at age 9 there would be few people that would understand the significance of such an accomplishment, and even fewer that I could actually share it with.  Accomplishments of any size, their true worth known only to me, would bring quiet celebrations between my son and I.

Someone should have mentioned that Autism is messy!  That wallpaper’s meant to be shredded, bathrooms are designed to be flooded, walls are bare in order to smear stuff on them, washable paint really isn’t, and that most food will actually be crushed or dropped on the floor.

Any parent can readily recall what it felt like the first time they held their child for the first time after birth.  In my opinion there is no better feeling in the world.  Someone should have mentioned that each time your child with Autism initiates or engages in a reciprocal hug, that feeling that you had when you held them for the first time comes back, time and time again.

I wish someone would’ve mentioned that Autism is extremely expensive!  Doctors, therapists, medications, supplements, conferences, and sensory equipment are only the tip of the iceberg.  I could not have guessed that it would be my child’s disability which allowed people to cross our path in life that otherwise would not have, and that those people would respond to a child in need with such love and generosity.

Finally, what they forgot to mention the day my son was diagnosed with Autism, is that the triumphs over his disability would far outweigh the tears, that laughter would eventually ease the sense of loss, and that sheer faith would allow me, and millions of other parents, to fall into bed exhausted each night only to get up the next day eager to discover what else they forgot to mention.

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: My Son Joshua

My son Joshua was welcomed into this world in November, 2000.  It had been a difficult pregnancy with premature labor at 7 months, followed by 2 months of bed rest.  He was born healthy and his dad, sister, and I were grateful.

The first year was challenging.  Josh had trouble sleeping, eating and was often sick.  At age 2 he was not speaking more than 3 words.  Our first speech therapist assured us he was fine and recommended once a week speech therapy.  Over the next few months, as we were on a waiting list for speech services, we watched our little boy slip away from us.  He lost the 3 words he had, stopped looking at us, continued to have trouble eating, and continued to have frequent illnesses.

He was on multiple breathing medications, constantly drooled, and lost interest in the world around him.  In the middle of his second year, we were told our son had Autism and Apraxia of Speech.  Being an Occupational Therapist myself, I was not terribly surprised but none the less devastated.

Other than being told to pursue therapies, we were left directionless.  I began on a mission to find out how to help our son.  I started a journal and wrote down everything that happened in Josh’s life.  I read everything I could get my hands on.  Josh went through 2 more speech therapists before finding one that he didn’t run away from.  Through all the rough times those first 2 years my husband and I would occasionally see signs from Josh that he really did want to be in our world and needed our help getting there.

It wasn’t until after Josh’s 3rd birthday that he began making sounds again.  However, during his second year of life, we began noticing special skills in our son.  He had an usual love for numbers and letters.  He was counting with number magnets and knew all 26 letters of the alphabet.  Yet he could not talk.

In my journal, a particular entry on July 25th, 2003, stands out in my memory.  I had arrived at the daycare where my son had attended since birth.  Josh was 2 and 1/2 years old.  He was outside in an enclosed play area for the toddlers.  He saw me from across the play area and looked at me; for probably 20-30 seconds.  It was as if he was seeing me for the first time.  It took my breath away.  He didn’t look at me after that for a long time, but I knew I would reach him eventually.

We continued with therapies and also began the dietary interventions of gluten free and dairy/casein free eating.  It was very difficult and expensive, but how could I not try it?   What if it helped?  Soon our son began talking. He stopped being sick and was taken off all breathing medications.  Speech progress was very slow and tiring, but hearing his voice was music to our ears.

Josh worked very hard and was delighted with his accomplishments.  Once talking, we found out he could read as well as count into the hundreds and spell 100’s of words.  He began interacting with us and occasionally with others too.  He was getting closer to our world. Our hard work continued over the next 2 years.  Keeping him focused on his homework, and making sure his food was safe, but as close to normal as possible.

Reading in my journal again leads me to the most memorable entry.  It was May 2005.  It had been a long day with the kids.  I was putting Joshua to bed.   After tucking him in and saying goodnight, Josh said goodnight to me!  I was so happy to hear him return my nightly gesture. I said “Thanks Josh”.  He looked at me and said “I love you”.

That was the first time he had ever said those words to me.  It was Mother’s Day.

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: Just be Mommy

It’s so amazing to me how much you can love your children. It is even more amazing to me how much children learn from their parents, and how much we, as their parents, learn from them.

Having a child on the Autism-Spectrum Disorder is challenging, but also provides meaningful opportunities. Our son Bo was diagnosed with Autism at the age of 2 1/2. We started therapies within 4-6 weeks of his diagnosis and have been going strong ever since. Yes our family has had many ups and downs, but somewhere among the three of us there has always been a core strength that gets us through the difficult times. That core strength being a combination of our faith, honesty, and love towards God, and each other.

We always tried to be honest and direct with Bo about his Autism, and his autistic tendencies to script or perseverate on a certain topic, hand flapping or stimulatory behavior. When he hand-flapped, we said “no-flapping.” When he would script or “stim”, we would show him what he looked like or also we told him that “Mommy and Daddy want to talk to you, but you’re not listening,” or “You’re not with us. So please stop or go to your room if you need alone time.”

If he scripted a movie or show, we would tell him that “We aren’t talking about that right now.” He always wanted to be in character, and we would always tell him to “Be Bo, because we love you for who you are”. “Just be yourself”, we would say. We always felt being honest was the right thing, but sometimes, as parents often do, we would second guess ourselves whether he really understood what we were trying to tell him.

One morning Bo and I were on the computer doing a learning disk that one of our psychologists had recommended for Bo’s processing skills. This was not his favorite activity and there was a rhyming game  that he just could not seem to comprehend, and wasn’t able to follow through on the instructions.

Wanting to help him I kept motivating him in different ways and assisting him. The more I tried to help, the more he got frustrated at me and at the computer. And then I started to get frustrated that he was unable to get the task done and for him being frustrated at me. Needless to say it was an ugly start to the day and we did not get to finish the game.

Later that night, on that ugly computer day, I was helping Bo brush his teeth. We always did silly sounds or vowels and letter sounds so he would open his mouth wide and I could finish up his brushing job. Reflecting on the day, and feeling like I failed him earlier that morning. I was determined that I was going to help him understand the rhyming game. So I started acting like the computer game. And waited for a response.Bo took out his toothbrush and looked right at me and said “Mommy just be yourself, I like you just the way you are.” “Just be Mommy”.

WOW!, as tears rolled down my cheek, I thought of how far we have all come in 2 1/2 years, when Bo could barely understand a question or word. He’s now 5 years old and telling me to be honest and to just be myself. What a smart little boy he is. How proud I am of him, and relieved that being “just Mommy” is enough.

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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1 in
45

Diagnosed with Autism

Over
100

Autism Diagnosis a Day

Costs
238

Billion per Year

Boys are
4

Times More at Risk