You look around one day and you realize that you're isolated and alone except for those that you hold most dear.
My husband and I got married right out of college. Then it was on to grad school and soon after I was teaching. We were still quite young in our marriage when we knew we were pregnant. The months before and just after I had Isaac were full of social interaction. I was out for church, school and career. Everyone wanted to be around a sweet young couple and everyone everyone wanted to be around this beautiful baby boy.
But then the behaviors started and over time the differences became more apparent. The same people who had congratulated me on a job well done before Isaac's struggles were noticeable were now asking me what methods precisely I was using to bond with my baby. They wondered to themselves and then out loud what was wrong with my child and by extension what was wrong with me. They wondered audibly what instinctual mothering error I had made to have a child as different as Isaac.
Diagnosis came. Old friends were scattered as collateral damage to a schedule now full with Early Intervention, Speech Language Therapy, Occupational Therapy, Physical Therapy, developmental appraisals, genetic screening, Applied Behavior Analysis Training , ABA Therapy, Picture Exchange Communication seminars, Autism conferences, school meetings, etc., etc., etc.... Even those friends from our old life who tried to hold on to us were eventually swept away by this deluge of therapies and official sounding acronyms that pulled us away from the typical and into the special.
They were replaced by therapists. Our house was now always full of people but they were people who were being paid to be with us. Think about that. In the same way that it would be difficult to call a psychologist a true friend knowing that at the end of the hour they will abandon you to your troubles, it was difficult to establish true friendships with the well intentioned folks who came to our house to work with our child. Besides, those therapists who visited were not there to see us...they had come to see Isaac. They would knock, be greeted, gather notebooks and various toys which were the tools of their trade and head to the nursery closing the door behind them. I kept Eva and/or Jonathan in the other rooms as quietly as I could so as not to disturb the work going on beyond the door.
Over time, the school assumed the therapeutic role. At three, Isaac enrolled in the Preschool Children with Developmental Delays program and most therapies occurred there. Not even the therapists visited. And yet, we couldn't go out. The school schedule was atrocious to contend with and had me and Isaac's younger siblings back and forth across town several times a day. As Isaac got older, his behaviors were more pronounced and the differences were more apparent. We gathered more stares wherever we went and Isaac felt the looks too. Isaac showed his mutual disapproval to those who were judgmental by increasing his tantruming and meltdown behavior. Slowly, slowly...it became easier to stay home.
We unconsciously gave way and adjusted our lives to our son. We retreated further and further away from the society who sought only the beautiful and the happy and the well-mannered. We did not fit in and there could not even be the pretense that we did. Our public escapades would at best be spent on alert so we could recognize any antecedent of potential meltdown. At worst, they would result in tearful reminders that the world could be cruel to those who were out of sync and different.
There were outings we had to make. We met with the school to discuss Isaac's educational plans. It seemed as if the school was always on a different page as far as expectations for Isaac and their willingness to include him in the greater school community. For better or worse, these outings to negotiate services with the school were hardly ever amicable. We prepared for them as one would prepare for a hostile takeover. We researched and rehearsed and then met to advocate and advance services for our son. We were often challenged. Our intellect, our expectations, our understanding and even our care for and parenting of our son were alternately challenged. We made our arguments and then retreated to the safety and peace and isolation of our home.
Our children were becoming increasing isolated too. Isaac is a sweet guy but his behaviors are loudly evident. He made odd noises and utterances and did so at great volume and all through the day and night. Children we passed in Wal Mart were afraid of our son. There was no reason to think that our own children's classmates would be any different. In order for our children to have anyone come over for a playdate, I would first have to call and vet the parent. I would introduce myself and tell them how happy I was that their child and mine were getting along so well....and then I would have to let them know about Isaac, his autism and the behaviors associated with it. I would answer all the parent's questions about autism and try to feel out if they were still interested in having their child associate with mine. If they were, then I moved into my educational mode whereupon I provided children's books that talked about autism and asked the youngster's parent to prepare their child to meet my boy. To my great surprise, a few mamas actually agreed and we did have a few successful playdates. But, it is psychologically difficult to go through all of that in order to have a friend over. It was difficult to trust others with intimate knowledge of our family not knowing if that knowledge would be received with compassion or with cruelty. It was easier on our hearts and minds to keep to ourselves.
It was a momentous affair to be able to go to church on Sunday morning. We managed that with the help of some sweet volunteers but even that was challenged when Isaac's behaviors erupted further during his middle school years. He began to pinch and bite the volunteers and for a scary moment I was afraid we would never be able to go outside the safety of our walls again. Thankfully, his behaviors quieted somewhat though I would never be surprised if they resurfaced.
It was easier to let just one parent go to the grocery store and out to do any errand. We passed on almost every outside opportunity for scouts and youth groups. It was just too hard to manage how we would get one child to the event, appease Isaac for an hour or two and then come back to retrieve our other child.
Years pass...and I find that we are alone except for ourselves. There are some advantages. It is easier. Much, much easier. Isaac knows his way around here. His needs and wants can be met without monumental effort and planning. Our home is designed for him. The children at least still get out to school and so have friends there. They do get a chance to interact socially. Thankfully, our children get along well with one another and genuinely like each other. They play together when they are home. We are a team. My husband is my best friend. I wait until he is home and then I talk his ear off.
Technology and my own penchant for writing have been welcome outlets as have weekend outings to the parks. Our park adventures can still be difficult as we cope with Isaac's needs outside of our home, but at least there are few people there and the woods and its occupants do not care if Isaac loudly echoes all the lines from his favorite cartoons.
It is lonely and yet it is safe. There is a yearning to get out and then a realization that I think I have forgotten how. There is a point that even phone calls become foreign.
I don't write for pity. Please understand that. I write to give you a peek into our lives because unless I write it, you won't know. Autism is a disorder of isolation. It affects Isaac surely...but it affects us all.