Becoming a Community

 

 

We are inundated with articles about autism today.  "What not to say to a parent," "What to do if you get the diagnosis," "Ten things that make me angry," "Is it autism or autistic?"  These are just a few of the titles I've seen.  Then there is this therapy to bring speech to the non-talker, that therapy to correct behaviors, and yet another to protect your autistic child or to prevent a meltdown.  I'm looking at Twitter right now, and it's really scary the number of followers who share information about autism.  

Back in the 80s when I had my son, Greg, there was Lovaas behavior modification, the inclusive educational practice, music therapy, speech therapy and auditory training.  Sensory integration therapy was growing in popularity, also.  I didn't have a computer nor did I have the resources to tap into anything else.  So my husband and I looked at our son and picked which therapy we thought would help.  And we waited.  We were not joiners; we were independents.

After raising Greg for 28 years, we know this to be true.  1)  We needed help.  2)  If we chose a therapy, we dived right in.  We second-guessed ourselves, fighting about our son daily, which didn't make our household a happy place since both Jay and I are always sure we're right.  3)  We rarely showed the rest of the world what our lives were really like.   Simply stated, we were loners.

After attending last night's bowling banquet for special needs bowlers in Harrisburg, Pennsylvania, I know this to be true, also.  We are a community.  Jay, Greg and I joined the league with no regrets.  The people who attend every Saturday morning support us with their time, their compassion and their advice.  That is what community does for a family.  It doesn't judge nor does it show an unforgiving spirit.  It doesn't demand nor does it turn its back on you because you are different.

The organizer of the Red Striker league stands up each year to talk about the league.  Rich Tezak's eyes fill up with tears as he describes the early years of the league, beginning with just five bowlers.  He proceeds to share with us that, on Saturday mornings, Red Crown has just turned the entire bowling alley over to our league thanks to our continual growth.  He ends by looking around proudly at his commitment and its results.  After a prayer and banquet, the awarding of trophies and T-shirts begins, and we watch proudly as our children, our brother and sisters, our clients, our group home buddies and our friends receive their bowling award for the completion of another year in the league.  It's not about scores.  It's not about the number of times you show up.  It's about joining in.

It's time to share what it is like to raise a special child.  Society cannot change unless parents open up about the challenges, the sacrifices, the growth and the failures.  There is no cure, for sure.  However, there are people who can help.  Embrace them.  Get active.  Read and learn.   Join.

Find a community.  Accept it into your life.  Greg's life is better for our involvement.  Do not isolate yourself.  Change can only happen through our advocacy and our participation.  

 

 Greg's Joy

Greg's Joy

2015 banquet & awards ceremony for the Red Strikers Special Needs League