Autism Awareness Month

Today, I want to talk about a disability condition that is affecting many individuals and their families…. autism.  April is Autism Awareness Month, so I wanted to share just a bit of insight into this disorder from a mother of a handsome young man who is also autistic.

Joseph is Joe and I’s youngest child, and we knew something wasn’t quite typical from a very early age when his speech and language were delayed.  At age 2, he started receiving speech therapy, and later started to a special education preschool program for communicative handicapped before being mainstreamed to a neighborhood school.

His early school years were interesting.  I remember the time he was left alone on the kindergarten playground, then broke his wrist when he fell off the slide.  Or teacher reports of his spending time watching the water splash over his hands or being in his own world. It was clear he needed the extra assistance of an aide at school- which we advocated for and received.

Middle and early high school years were very difficult for both Joseph and the family. Because he couldn’t quite communicate, he began to act out in frustration.  The low point for us was his school program.  He didn’t fit in a special day class because he was very bright; but a typical classroom, even with an aide, also didn’t work.  The school district talked us into this one program, which turned out to have untrained staff who would literally lock him in a small room and restrain him for little cause. When we discovered this, we removed him and filed a complaint, but the psychological trauma to Joseph took years to heal.

Eventually, the lack of local services lead to our hiring an educational consultant and finding a gold standard program in another state for Joseph’s high school years.  This program taught Joseph to communicate his feelings and taught him lots of social skill and academics.  Plus, for the first time, he had friends and got to play sports such as lacrosse and soccer.

This school program was a godsend for our family, but there were little glitches, like the time he got lost in Chicago O’Hare airport for several days on a routine flight home from school.  Several police agencies were involved in the search, as well as the airline which lost him.  On Day 3, he was located sleeping in the terminal, a very hungry young man.  The airline put him on the very next flight, first class, and also fed him.  After this adventure, we always made sure Joseph carried with him our contact info, calling card, and money instead of placing it in his checked luggage.

Joseph & Grandma at Graduation

Graduation was a special event for our family.  Joe and I burst with pride as we watched him stand and present the senior class gift in front of the packed event.  He was so handsome wearing his cap and gown, and the idea he would be speaking in public confidently was a dream realized.

Transition to adulthood was the next challenge.  In a rural county with no services, we tried to fill the gap the best we could.  When his skills started regressing, I knew we needed to do something more proactive.    I did my research and located a wonderful program in Northern CA Bay Area only 2 hours away, where he has lived for the last year.

Joseph now resides in his own apartment, with staff to check on him as needed.  All of his needs are met next door at the large building- skill classes, recreation, medical, medication, etc.  Best of all, he has friends once again, and even met a special young woman- who he has been dating for almost a year now.  I had always hoped he would find someone to love and return the feeling.  Another dream realized.

Obviously, this is the short version of our journey raising an autistic young man to adulthood.  There were many trials and tears along the way; including grieving the loss of the dream all parents have when they bring the newborn home from the hospital.  While our journey was different, it was rich nonetheless.  Joseph is a delightful, sensitive young man, and I am richer for having the pleasure to raise him.

No one knows why autism happens, though current scientific studies are leaning towards a genetic base with possibly an environmental trigger.  It cannot be “cured,” as one Hollywood mother likes to say in the media.  If caught early enough and provided intensive services, the child can show an improvement in symptoms, but that is all.  We learned that improvement can happen, even at an older age, with the right methodology approach.  But the autism is still there.

Having parented an autistic child for about 2 and 1/2 decades, I have seen many  so-called “treatments” come and go.  I have also noticed a strong need for parents to “fix” the child, particularly in the first few years after diagnosis.  Eventually, Joe and I finally reached a place of acceptance for what was…. the diagnosis, the reality he would need life long care and assistance, the realization that we love our son, no matter what.

If you happen to have a loved one with autism, or know of a family with a child with autism, please reach out to them with non-judgmental love and acceptance.  Do a small random act of kindness for the mother, who typically is the caretaker.  The best thing I needed during the early years was just a few hours of rest or fun diversion.  Laughter is the best restorative medicine I know.

My friend, Lori, was always there to listen to me when I needed her.  I have been so thankful for her friendship and non-judgmental acceptance and understanding over the last 20+ years.  If you know a parent of a child with autism, consider being such a friend to them and lend an ear to listen.

I know this post is pretty long, but I wanted to share some of my thoughts about autism.  Please consider leaving a comment if my post touches your heart or you can relate to this topic.  Regards, Carla