Do Over, Please.

I want a do-over.  I imagine that most parents would like to play the do-over game.  On my Monopoly board of do-overs, I'd call more speech therapy with Alice my Boardwalk.  Greg needed to get his point across when he was younger.  How much easier would our lives have been?  School restricted him to two or three sessions of speech with every six-day cycle.  At our IEP meetings, we had so many fights to fight that we did not demand daily speech classes.  Speech therapy, the most necessary of all goals for parents of autistic children with limited communication skills, was the most difficult service to procure.  Now as an adult, Greg communicates significantly better than he did while in school.  

Today in the car, I asked him what he had for breakfast.  I thought he mumbled "cereal".  

"Wow, Greg, I'm so excited!  You ate cereal?"  Life at the group home includes Greg's acceptance of foods he never would have eaten at home.  Apparently Greg's need to correct me outweighed the difficulty he has in producing speech because he enunciated quite clearly.  "WAFFLES!"  

"That's so neat, Greg.  Did you pour syrup all over them like you used to?" 

"Yes," he shook his head affirmatively.   

After going around the board again, I'd land on Park Place where I would find the gift of calendar-making.  By showing Greg a daily schedule, we learned to help him to transition from activity to activity with less stress.  Jail?  That is where I would take myself when I forgot to make a schedule of activities when leaving the house with Greg.  Had we only had that idea before middle school!

Reflecting back, the "if-onlys" jump at me whenever I spend time with Greg.  Today, while sitting in Applebee's, Greg looked at me and said, "Monday."  That is his way of asking me for a calendar.  I wrote, "lunch, bake at old house, watch videos, do puzzle" and Greg calmed down.  What a small act with huge implications.  If only....

My extended metaphor of Monopoly/do-overs continues....For certain, I would train Greg how to act in a restaurant at a much younger age than twelve.  I simply cannot decide which Monopoly space I'd assign to that one.  Greg controlled us in a restaurant until we discovered the I Pod Shuffle for auditory calming, putty for tactile use, puzzle books for his limited attention span and meats with Bar B Q sauce for his palate.  Greg's dietary needs eclipsed all else, so his acceptance of meat enabled us to go to typical restaurants instead of to Pizza Hut.

Our communication with friends and family was nearly nonexistent.  My do-over Monopoly board would have a communication space, and whenever I landed on it, the signal for a phone call to someone who did not get what our lives were like would light up.  If only I'd consulted family members with our concerns more frequently, they might have understood our day to day challenges.   In truth, working full time, grading papers, cooking dinner and taking care of Greg took every free minute.  In my do-over world, I'd have to phone someone because, after all, you commit to playing the game the right way.  I realize now that people who do not have an autistic child in their lives really do not know how to participate in our lives.  

My final do-over?  I'd have Greg-free dinner conversations back in the day.  I never realized how all-encompassing autism was for my family, how the successes and failures of each day had to be shared at dinner time because that was the only time we sat together for twenty minutes.  Now that Greg lives in a group home, Jay and I often invent things to discuss.  I never thought we'd be one of those couples I've seen in a restaurant who ate without conversing.  Twenty-five years had been spent talking about Greg, or Adam, but mostly Greg, because he frustrated us much more.  Now the topics of retirement, travel, and politics seem so mundane, boring even.

Life doesn't give do-overs.  In my free time I need to focus on the good decisions we made, on the therapies that fell into our back yards at opportune moments and the family members and friends who jumped aboard for the trip of a lifetime.  Still, "if onlys" do enter our thoughts.  Nobody does it perfectly.  That's life.





 Applebee's and ribs for lunch

Applebee's and ribs for lunch

Greg uses putty to keep his hands occupied.  The waitress recognized it immediately and whispered to me that she has an autistic family member who uses putty, also.   I smiled and indicated that Greg was autistic, but she already knew it.