The difficulty of letting go for parents of autistic children

By Debra Muzikar

When Kevin was three years old he was part of an early intervention program funded by Santa Barbara County Education Office. The preschool program was part of an inclusive school called Discoveries Preschool in Santa Barbara.

At 7:10 AM for three years a short yellow bus rounded our corner and parked in front of our home.  I walked Kevin out to that bus each morning for those years. There was one other child seated in the front row behind the bus driver. We were the early pick-ups. The first time I let Kevin go by himself on that little bus I felt worried for Kevin and profoundly sad at the separation of my youngest child.  Yet I knew at some level this was good for Kevin.

“Bonjour, Kevin,” the bus driver said as Kevin walked up the steps to his seat. The bus driver was a jovial immigrant from France with white hair and an open smile. He was doing this service-type job in his retirement.

“I love my job,” he said.

One of Kevin’s favorite activities was riding on buses and trains (it still is). He was happy looking out the window as the bus driver drove him on the trek to his school.  Kevin did well on the bus and at this preschool. He was invited to birthday parties and we found the school teachers to be conscientious and compassionate. Kevin’s teacher Sheila and her assistant at the time Amber became friends of ours.  Amber spent many hours at our home after preschool playing with Kevin and teaching him skills like knowing the names of colors and shapes to get  Kevin ready to be included in a typical Kindergarten class. Kevin had two older sisters and I was a busy mom. Amber later went on to become a credentialed teacher.

Recently I read an article about a bus driver in Whittier who was indicted for letting an autistic child die in his bus because he forgot he was there.  This  is a horrible incidence of neglect that caused great suffering for the young adult and his family.

“This is why I never let Jay ride the bus,” a friend told me. Her son is 17 years old and Autistic. “You can’t trust others to care for your child.”

I thought about this single mom’s statement for a long time. Kevin is 21 now. He’s lived in many different places, not always with his parents. He is learning to become independent. Kevin is verbal. It may be different for children who aren’t verbal. Parents of non-verbal children have to learn about so many other ways of communication (and the children have to learn how to  communicate with their parents – often this is a “private language” that only parents and their children understand). How do we trust others to communicate with our non-verbal children?

Many parents worry about their autistic children … rightfully so. “What will happen to them if I die?” we say. “They are so vulnerable.”

We all know from the media (who constantly shares horrific stories) there are  predators and many things to be feared in this world. Yet our children (no matter where they land on the ASD spectrum) have their own trajectory. Many times our children will take us parents out of our own comfort zones and on a wild ride.

Most parents of neuro-typical children go through the pain of letting go by their late teens or early twenties. Because autistic children have developmental  delays, the letting-go process is often delayed and sometimes happens in that child’s late twenties or thirties …  or beyond.  Yet most of our children will outlive us parents. So how do we prepare them for this?

“Our job as parents is to make our autistic children comfortable,” the same parent says (who told me her child doesn’t ride school buses) on social media.

I believe raising autistic children may be a little different than raising neuro-typical children, but in essence it is the same. Parenting is about making difficult choices. It certainly isn’t about making ourselves or our children too comfortable.

I remember a mom who was elated when her teen Autistic child attended an overnight camp for the first time.

“He was proud,” the mom shared with our support group.

This young man left his parent’s “comfortable home” to attend college and recently received a Master’s degree in History.

This was a huge step for that child and his parents. We as parents must challenge our children to challenge themselves. This may happen by that child taking a school bus independently. It may happen by them going away to camp… or even away to college. The ability to live with other people outside their own family may come much later.

Co-dependency between parents and their children is a huge problem in the autism community. We as parents carry baggage from our childhood. If we rely on our children for our own validation and sense of identity we are placing a huge burden on our children. They have their own trajectory. Sometimes circumstances (like in my son Kevin’s situation) take us parents out of our own comfort zones and force us to let go earlier than we would want to. Yet I see everyday in Kevin new possibilities, mainly because he is becoming his own person separate from me or his dad.

Separation is as painful  for the parent as the child, yet it is necessary for all to grow.  Growth is by definition about not staying the same or in a comfort zone. It’s about becoming your own person by challenging yourself. This is why we go to school, we leave our parents at a certain age, we have difficult experiences in our lives …and we become stronger because of it. We can’t develop our own muscles if we don’t use them.

The bond with our children is strong. Trust and letting go is necessary for them to grow. Trusting in others, trusting in God (if you believe in God), and trusting most importantly in our children.

Parenting our children is absolutely about love and patience… it’s also about helping to create a sense of separation from us parents – a sense of identity they know when we are no longer here.

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Debra Muzikar is co-founder of The Art of Autism.  Kevin Hosseini is an artist on the autism spectrum and so much more!