Stories From the Heart: A Lesson Learned

On March 19, 1985, a beautiful, bouncing baby boy named Matthew was born.  On January 26, 1987, he was diagnosed with Autism and our family’s life was changed forever.

Matthew looked like the three B’s of babies with autism … big, blonde and blue-eyed!  At least that’s what many looked like in 1987.  Back then autism showed up in 1 out of 10,000 births with 3 out of 4 being males.  We were a bit of an oddity back then, but things have certainly changed since.

It was a good three days before the diagnosis set in and the grief began.  It was deep and nauseating but eventually floated away like fog rolling out after a good rain.  After all, he was still my Matthew.  Could life really change that much?  We found out quick just how much.

After observing Matt for 15 minutes, our school system was determined to label him with mental retardation and provide him with an inadequate program.  Matthew had many strengths that were not even being considered.  It was then I knew it would be up to my husband and I to advocate for what’s best for Matt … nobody would be doing this for us.

We ended up in a pre-hearing conference with our school system and won the right to have him educated at the Groden Center, a day school program for children with Autism within an integrated pre-school.  Back then, very few programs provided integration with typically developing children, but the few studies out there and our gut told us this would be extremely important for Matt’s success.  Placing him there when he was three years old was the first and best decision we ever made, and sending him back to his home school three years later was the second.

When he finally said “Mom”, he was five years old and shortly after became toilet-trained, which were miracles in themselves.  He left the Groden program toilet trained, using some basic words and was able to read close to 200 sight words.  I still keep the flash cards in my bed stand to remind me of the road traveled.  He entered Kindergarten with a trained one-on-one teaching assistant at Washington Oak School in Coventry, Rhode Island.  Little did I know that the wonderful peers he came to know as friends on that first day would become the grown up young adults he would graduate from Coventry High School in June of 2004.

I would love to say that between the wonderful school supports, great peers and a supportive family he had over the years was enough to make everything perfect in his life.  But that would not be true.  His autism, combined with an additional diagnosis of bipolar disorder at age 9 made his life and ours quite challenging.  The irony was that we now had a child with mood swings who could not tell us how he felt.  The crying, the anger, the anxiety were all part of the everyday experiences throughout his school years.  The challenge to our school system as well as our family, especially his brother and sister were on-going.

Just when we thought we were in the right direction, things would change again.  There were days when his OCD was so bad that it would take him two hours just to get from his bedroom to the morning school bus.  Many of those days, we just pulled down the shades and stayed home.

But the reality is that Matthew’s autism has brought us joys greater than any sorrow.   For every day of sadness there has been a day of celebration!  The kindness shared from doctors, teachers, friends and neighbors who shared our laughter and well as our tears have created lifelong relationships. These individuals choose to be on this journey with us. They are simply the best of the best!  Our paths would likely never have crossed if we had not taken the road less traveled.

There have been “moments of greatness” I don’t believe we would’ve ever experienced.  The duet Matt and I sang in a school cabaret with a standing ovation of 400 people, the wilderness field trip where he had to climb over a ten foot wall with six friends under him helping him over the top, the many years where he sang the Star Spangled Banner for an auditorium full of people, or when he read “Green Eggs and Ham” to Kindergarten children when he was in 5th grade are just a handful of examples.

Most importantly, walking across the stage and receiving his high school diploma with 450 of his classmates was a moment that will be etched in our hearts forever.

At 20 years old, we are getting ready for his adult life to begin and it’s possible there will be more obstacles ahead.  But I’ve learned that life has challenges for each of us and these experiences define our purpose.  What I know for sure is that Matthew’s Autism has brought our lives a sense of compassion, sensitivity and empathy we may have never known. And moments we will never forget!  The world could use a few more compassionate people. Maybe that’s what Autism is really meant to teach us!

Deb Belanger
Mother of Joe, Matthew and Aimee

 

* 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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