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.

Stories From the Heart: He’ll Get the Message

Like many kids with Autism, Byron has a hard time believing things that are seemingly illogical or abstract.  Religion in general is a difficult concept for him to understand and study because it asks him to have faith in things he can’t use his senses to confirm.

“Mom”, he whispered to me on Easter morning, “you do realize that people don’t come back from the dead?”

“Yes, you’re right, but Jesus was special.  He was God’s Son.  You just have to believe He rose from the dead and know in your heart it’s true,” was my answer.  His quick response back was “Mom, you know, your heart is just a muscle….?”

Hhmmmm, OK……..

One Sunday morning after his church school class his teacher came to me with the news that Byron had been acting out during the lesson and said some totally inappropriate things.  This wasn’t the first time he had behaved in such a way, but my husband and I decided that instead of the usual punishment of no computer or television or video games we would try a new tactic.  We told him he needed to talk to God a little more, so it would be his job to say our family’s grace at the dinner table for the next week.

You would have thought we were torturing him with instruments from the Inquisition!  He spent the rest of the day informing me and everyone else that there was no way he would talk to God. “You can’t make me say grace” became the mantra of the afternoon.  “I won’t do it” he would mutter under his breath every few minutes.  “Mom, that’s not fair” was shouted out at regular intervals.

As luck would have it my in-laws were visiting from out-of-state and we had planned a dinner that just happened to be one of Byron’s favorites!  The smell of ham, au gratin potatoes and crescent rolls in the oven had all of us anticipating the food, but not necessarily the moments that would precede our meal.  Soon I announced that everything was almost ready so it was time to wash up and sit down.

Byron stomped into the dining room and sat slouched in his seat while the rest of us found our chairs.  I had spoken with my husband ahead of time about how I would remove Byron from the table and take him to his bedroom if he refused to follow our request.  It was with a sinking feeling that I asked Byron to bless our table.  Nothing happened for a moment.  Then another moment passed and the hush stretched even longer.  Just as I opened my mouth to speak we heard a loud noise.

“Bbbrrrrriiing!” Puzzled silence filled the room.

Again….“BBBbbbrrrriing!”

This telephone-like noise was coming from Byron, whose eyes were closed tight and whose face was scrunched up!

“BBBBBBbbbrrrrrriiiing!”

I peeped questioningly at my husband and at my confused in-laws.  Suddenly, Byron began speaking in a deep, formal, monotone voice.

“Hello.  You have reached God’s answering machine.  He is not available to listen to your prayers right now, but leave a message and He will get back to you later.”  This was followed by a long pause.

“BEEEP”

“BEEEEP”

“BEEEEEEEEEP”

Another moment of silence filled the room as I saw my mother-in law’s shoulders begin shaking with silent laughter and my husband’s eyes rolling toward the ceiling.

“Dear God”, said Byron, “bless all this food and bless my family too.  Amen and goodbye.”  He quickly opened his eyes and looked up at me.  “Mom” he said, “I didn’t talk to God”.

We looked at each other for a moment and I saw the confusion and anger leave his face. “I’m sure he’ll get the message” I said, “and you can catch him tomorrow.” “OK” he said, secure in the knowledge that God would be there for him whenever he was ready to talk and no matter what he done.

The rest of the week Byron’s graces were wonderfully reflective and inspiring, as well as thankful and unconventional!  Byron might not have been ready to talk to God on that Sunday evening, but he knew God would get the message and appreciate that some kids need a little extra time and understanding when it comes to prayer and all the mysteries of faith.  Byron is truly our blessing and we thank God every day for him and his quirky observations and interpretations of life!

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: Cheerleader

In the fall 0f 1999 I took my daughter Micaela to the Tri-State fair parade. She was 3 years old and had just been diagnosed with Autism. Although I had known she had a speech delay and Autistic tendencies officially getting the diagnosis was devastating. I asked the doctors, “Will she be able to talk, read, write or drive a car when she’s older”? “We don’t know”, is the only answer they could give me.

As I wheeled her stroller down the sidewalk I wondered how she would react to the sounds and excitement of the parade. She had never been to a parade before and I knew the noise and crowds might be too much sensory overload for her. I was hoping she would be fascinated with the horses or even laugh at a clown or wave back as a fire truck went by.  Mostly I just wanted to have a fun time like all the families there.  I remembered the excitement of a parade when I was a girl and I wanted Micaela to have the same joyful memories.

I found a spot near the curb to park the stroller and sat down beside her.  “It’s a parade.” I told her.  She ignored me. As the fire trucks and motorcycle cops passed she showed no interest. She was only interested in playing with the seatbelt on her stroller.

She briefly glanced at a clown when I pointed him out. I stood and held her up as the horses passed so she could see how big and beautiful they were. She screamed and cried to be put back in the safety of her stroller. She held her ears as the band went by as the music was toxic to her senses. Instead of thinking of high school pep rallies and enjoying the rhythm of the drums I found myself wishing they would pass a little faster, and be a little quieter.

Micaela is crying now and the parade is torture to her. She doesn’t understand any of it and doesn’t care. Then I see the next float, a flat bed trailer loaded with elementary age girls dressed in their cheerleading outfits. They are smiling, waving their pom-poms and yelling their cheers in perfect unison. All of the sudden it hits me and I realize – my daughter will never be a cheerleader.

The tears start flowing uncontrollably as I stand watching them pass. I start to think of all the things my daughter will not be. She will never be a homecoming queen, drive a car, or get married. There won’t be any basket ball games or slumber parties. No friends or summer camps. All the grief and all the potential of a life lost overwhelm me. We leave the parade both in tears, and I hope I do not run into someone I know and have to explain why I’m crying.

I had never given much thought to cheerleaders before. I wasn’t one myself and so it didn’t hold any particular importance to me. I never wanted my daughter to fall into a social clique –cheerleader-pretty and popular but also sometimes snotty, shallow and stuck up. I was more interested in a daughter that was smart and had a kind heart, but when faced with all the grief of what she would never be a cheerleader didn’t sound too bad.

As the years pass I still grieve at times. When her cousins pass milestones that she doesn’t it’s a reminder, but somehow it makes the small things sweeter and more precious. Now I’m pleased with small accomplishments and progress of any kind. When my daughter helps me vacuum instead of crying at the sight of a vacuum cleaner it makes me happy. When I see her sit on a horse with perfect posture, tall and confident without any fear I’m so proud of her. I’ve watched her handle many obstacles with grace.

When she was diagnosed with Diabetes at the age of 8 she faced the challenge with a good attitude. She never shed tears over the shots or cried over the finger sticks. She never felt sorry for herself, never whined or complained. She was brave and smart and quickly learned how to give the shots herself, and then I realized… she has all the attitude, charisma and enthusiasm of a cheerleader.

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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