by Mary Ann LaRoche
Being an older sibling of Paul Foti, a person with autism, greatly influenced my life as a child and still does to this day.
Imagine a childhood without structure, absolute chaos and constant frazzled frenzy.
When we went for a walk it wasn’t a normal stroll. I’d make Paul walk on the inner side of the sidewalk often on the grass of people’s yards, as far away as possible from the cars which whizzed by. I’d hold his hand tight, only to watch him twist away. My heart raced as I watched him dart out into the traffic. This was not unusual. It was a normal event.
As Paul grew older, it was no longer necessary for me to hold his hand all the time. That was progress.
When he was close to twelve years old, he would pick up a stick and throw it at a passing car. He couldn’t explain why he did such things. It was impulsive, mischievous, and dangerous.
Paul stood by my side giggling in his uncontrollable way. He’d squeeze his cheeks to stop laughing. He’d point to his own face and repeat my words “Paul, if you throw the stick at the car, what will happen? This is NOT appropriate behavior!”
Being Paul’s sister was a combination of devotion, nonsense, bewilderment, embarrassment and shame…shame for the times I was impatient or angry at him for being the way he was. Shame that he “embarrassed” me for his oddly peculiar behaviors which drew unwanted attention to us.
Paul had no label at all for several years. He was diagnosed in the late 1970’s at a time when not much was known about autism.
Once Paul was diagnosed as autistic the word “normal” lost its meaning for our family.
Even today with autism awareness, media attention, and the high number of children being diagnosed, siblings and families still receive stares and comments when the sounds of loud monotone moans or high pitched screaming emits from the vocalizations and flailings of a child with autism. Of course not all individuals with autism express themselves in this manner. Those who behave this way do so because they may not have language and this is the way they can communicate. This type of behavior will cause onlookers to stare and feel discomfort. It does cause stress for the child’s family.
Our family did our best to become immune to the stares, the comments, the allegations of abuse, and the snide comments such as “Can’t you control your child?” We’d continue on with our routines and our daily business. Isolating ourselves was not an option, especially if you are to be a family, put food on the table, or even more important, strive for inclusion and integration for your child with autism.
The real trick of being a sibling is learning how to pretend stress doesn’t exist. We must remain calm, speak with a flat and soft voice, even when our heart is racing from possible dangers, and the six foot circumference that surrounds us echoes shouting screeching screams. The calmness required is necessary if you want to try and prevent the behavior from escalating. At this same time, whatever methods of reason and control from the other person just do not exist. These moments eventually, well, they become your normal, and acceptance is paired with behavior modification strategies that may or may not work.
In my case, I invented a special shield of protection for my brother, and while I could not stand up for my own self, protecting Paul from the comments and looks of others became ingrained. This shield was not just from comments, it was because I never wanted harm to come his way, and his vulnerability and innocence puffed me up to be always by his side to not only protect him, but to also share the world in a way that would somehow make sense to him.
You see, when you watch someone you love struggle, there are two approaches to take: avoidance or the path we took – empowerment. My mom and I chose to work alongside Paul. We worked hard, spending many hours a day on coaching him, and said many prayers along the way hoping for those magical moments when Paul would connect …those moments when a glimpse of continuity and receptiveness drew Paul closer towards sharing his world with ours. I try not to present it as a different world, but there typically is a disjointedness in ways to connect, communicate, engage- this is not for all forms of autism, but is certainly ONE telltale sign of autism.
We worked diligently at introducing methods so Paul could learn to use his words, that was followed by improved language, and then we rejoiced when he showed signs of interaction. We also had many moments of sorrow, when he would hurt himself or seem to regress.
Having a mother who somehow found the strength to withdraw from the stares, fight for Paul’s growth, and pound this ideology into me, that it didn’t matter what others thought, we had to remember Paul didn’t ask for this, and that we would do whatever we could to help him achieve as much independence as he could- well, you just listen to your mother, and you share a common goal.
It made me feel a part of something important…to strive for his successes. It made me proud to know because of heart, determination and teamwork- Paul had someone challenging him, rooting for him, teaching him the tools he would need to express himself, and connect with his family. I’m not saying though, that it wasn’t tough at times to bear the wrath that kids my own age created, or to listen to the hurtful words they said about Paul. I spent a majority of my youth without friends. Don’t feel like I am saddened by this, it had its moments back then, but I am not by any means scarred from this.
Children diagnosed with autism, grow up to be adults with autism. Paul was no exception. Those odd quirky traits changed in context, but they never disappeared.
Please don’t think I’m focused only on the behaviors. We individually and as a world, need somehow to find a way to communicate with one another, if we are to be understood, thrive or fit in with others.
Paul grew up. He got around on his own in his community, lived with our mom, didn’t drive, rode his bike, had great art skills that he taught himself from reading books and watching videos, had aspirations of living on his own one day, worked part-time at various jobs, and led a relatively happy life (he was always smiling). What he lacked was the bond of friendship. Even though his language skills were fairly decent, nobody came over to hang out with him. He could communicate his thoughts and interests, but they had limits. He still did what most would consider strange things. Until the day he died people stared.
It is his lack of friends that haunts me to this day.
Living 3000 miles away for his last twenty years, doing something about this was difficult. Paul loved to share his passion for trains, cars, and the things he made. He loved to tell you about the topics that brought joy to him and kept his mind occupied. He would also tell you when he had enough stimulation or conversation, and just like that….talking was over.
Paul researched scenery – it could be how a playground looked, or a drive in theatre, with the swings, and concession stand, and he researched what kind of screen he could use to actually play the movies on from a dvd…..he looked up how to make a pond, or how to make a coal mining dump, or whatever interested him. He was fascinated by trains. He’d research what type of train to use for the engine….Santa Fe, Berlington Northern, etc….and how many trains it would take for the tracks, and what type of tracks to use.
He created booklets to draw out his layouts, and he put a theme on the cover. He made over forty such booklets that I know of.
Starting SEEDs For Autism had many purposes for me: I wanted to provide that continued protective big sister role and create a place Paul and others like him could grow as adults, find meaningful jobs that stimulate and peak interest, while improving social skills and building friendships with others who have similar interests.
I’m proud to say SEEDs achieves all this and more.
Did I influence Paul? I suppose in some ways I did, but not nearly as much as he impacted me, and over 100 families, 25 plus volunteers, 6 board members, and 8 staff members, and all the other people he will touch in the future.
Paul died December 10, 2010 . He was 42 years old. Mary Ann LaRoche founded SEEDs for Autism, a workshop for young adults on the spectrum in Phoenix, Arizona, hoping Paul could participate in the program she created … but he never did.
The Art of Autism profiled SEEDs for Autism last year.