Greg, Chase, Jim, and Sean on Halloween |
One year my sons dressed up as their favorite video game
characters, Mario and Luigi, for Halloween. Chase, my oldest son is autistic
and had become obsessed with the game developed in 1985. Two heroes, Mario and
his younger brother Luigi, try to defeat creatures popping out of the sewers
below New York City. What’s not to love?
My husband, Dave, known for his infinite patience, had spent
hours teaching Chase to play the game, and Chase, like his younger brother Jim,
conquered one level after another to win points. But this post is about the boys and their good friends in
the picture. Chase, age nine, and Jim, five, wore white painter’s caps with the
letters, M for Mario and L for Luigi, marked on the front. Knight, Greg Felten, and Dinosaur, Sean Felten, set out that night to hunt for treats.
Dave and I had joined a support group for children with
disabilities, and once a week we met in the evening at a nearby school. There
were 5 families that attended the sessions on a regular basis. Steve and Mary
Ellen Felten became our close friends. Their son, Sean, had Down’s syndrome. While
parents met in one room, the children played in a classroom nearby with
supervision. A volunteer facilitator led our group and it didn’t take long for
us all to open up about our stressful lives.
In one instance I told the group that I felt burdened,
having to explain Chase’s odd behaviors. I didn’t know what to tell people.
Should I explain how my son was affected by autism? Should I apologize when his
disruptive behavior was out of control? One solution that stuck with me and, if
needed, I still use today, Just say
simply, Chase has problems. That’s what we do. You don’t need to apologize for
your child or explain anything. It was a simple solution, one I needed to
hear from a parent who had been there. Over the course of about a year we
attended meetings and learned a lot from each other.
So I’m thinking this Halloween I will give Mary Ellen a
call. Although her family moved down to Paso Robles, we remain friends. I
feel like our families bonded like pieces in a puzzle. All of us had much in
common. Steve, a winemaker, enjoyed working with Dave on his homemade wine.
Mary Ellen, who went back to college to finish her degree late in life,
inspired me to do the same. We shared many Halloweens and family birthday
parties, football Sundays and summer barbecues. We often talk on the phone and
still share the challenges and successes in our childrens’ lives. Raising a child with
a disability was not something I could do alone.
3 comments:
This post is inspiring with its honesty and compassion, and promise of hope. Finding friendships while trying to cope with the stress of raising children with or without disabilities is like finding a life raft floating up you when you are drowning. Thank you, Barbara, for this peek into your past.
Thank you, Patsy. I'm glad you found this post inspiring. I was lucky enough to have a few life rafts available, not only from friends like the Feltens' but family too.
Little notes from readers. Thanks everyone!
nice....Nan
Love your sharing such special moments...Eileen
Thanks Barbara for sharing ! Love you much!....Aunt Annie
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