What does the future hold for him? What kind of person will he be? What will his life and our lives be like? What kind of relationship will he share with his brother? What will he be when grows up? Will he get married, have children . . . . .? These were the questions dancing in my mind as I stroked the porcelain face of my newborn son. I felt tremendous joy because he was finally here, significant relief because the difficult delivery was finally over, and profound gratitude because I had a beautiful, healthy baby boy.
Eleven years later that memory is still so vivid, and the questions remain in the forefront of my mind. But anxiety has replaced the wonderment, and the reasons for my questions are so very different now.
Twenty-two months after Brian was born, I found myself posing those same questions to the social worker handling ‘our case’ at an Early Intervention Center. Brian had not developed any language. He would stare off into space for long periods of time, and he didn’t respond to his name. His favorite ‘toy’ was a stick that he tapped incessantly on anything and everything he could find. The social worker’s answers to my questions were always quite vague – in fact they weren’t answers at all. Instead I go a lot of reassurance – -it was still very early, Brian was still very young, there was a lot to hope for and, of course, we “were not alone.”
I remember attending a parent support meeting and asking for more concrete information. I expressed my need to know what we were dealing with and what might be in store for the future. “Why do you want to know?” asked one parent. “I don’t think I could handle knowing,” said another mother. “I don’t want to know,” proclaimed another, “that way I can always hope for the best.” “But that’s exactly why I need to know” I replied, “so I can learn about Brian’s needs and do everything I can to ensure that they are being met.” That is what would give me peace of mind, that is what would allow me to be hopeful.
A little more than a year later, as I completed the forms to admit Daniel, Brian’s younger brother, to the same early intervention program, it was difficult to have hope, and impossible – I believed – to ever again have peace of mind. By now all four of my children had been born. Michael, the oldest, was just 5 years old. Brian, now almost 3 and a half, had made little, if any, progress. Daniel was barely two years old, and had spent the past year tantruming all day and walking the halls each and every night. And Patrick, the baby, was just 8 months old.
The days were long and the nights were endless. The behaviors got worse, the problems got bigger, the needs became more substantial, and the demands on my time were endless. Life became too painful to witness, too exhausting to endure and, seemingly, too difficult to survive. More than anything, I wanted to escape and run away from all of it. It was so hard to watch the children struggle, and so difficult to find any effective way to help them. I couldn’t wait for each day to end, but hated to see nighttime come because it meant that another day would soon begin. As a mother, stripped of her ability to help her children and robbed of their love and affection, I felt so helpless, and life seemed so hopeless.
I hoped that the passage of time would bring improvement. I was wrong. A simple trip to the grocery store with the children took all the courage I could muster. Typical family outings to the park, the library or a friend’s house were virtually impossible. Visits to the pediatrician’s office became a nightmare, and our house was in a state of unending chaos. There was very little to enjoy, and so much to be concerned about. We were imprisoned in our own home – able to do less and less – as our world became smaller and smaller. I watched other families from afar enjoying family life, and I wondered if we ever would. We had a house full of children, yet there was very little childhood there.
The concrete information I was longing for arrived three years later. Brian and Daniel had autism. Finally we had a diagnosis and, hopefully, we would get some direction. Not so. Diagnosis: autism. Cause: unknown. Life expectancy: normal. Prognosis: grave. With that news came a strong recommendation for me to join a support group, a cheerful reminder to take time for myself, a list of schools willing to ‘take’ kids like Brian and Daniel, and a word of caution not to forget that I had two ‘other’ children, and to always remember that they had needs too.
As a child, I had been gleefully unaware of my own mortality. When I became a mother, I grew much more cognizant of it. As the mother of two children with profound deficits and needs, I became haunted by it. What will happen to Brian and Daniel when I’m no longer here? Where will they live? Who will take care of them? Who will love them, understand them, meet their needs, have patience with them, and ensure their welfare? And what about Michael and Patrick? How will autism affect them and their lives? The questions are still quite painful, but the answers have become a little clearer.
I knew that the only way I could have peace of mind was to do everything I could to make sure that the needs of all four of the children were met. I wanted each of them to be able to maximize their full, God-given potential – whatever that might be – and I wanted each of them to live a decent life, filled with love, security, dignity and inner peace. My motivation to provide this was twofold: the desire to give them the opportunity to grow to be the best they could be, and the desire to ease the burden on each of them when Tom and I were no longer there to take care of them.
Although I’d like to say that I was equally motivated by both motivations, the latter consumed me. Michael, at the tender age of 7, had already witnessed and lived with more stress and uncertainty than most people three times his age. It was also obvious to us, from watching his patient and loving way with his brothers, and the wisdom, compassion and maturity he displayed far beyond his years, that Michael would be drawn to become their care-taker when the time came.
Although Michael’s devotion made me extremely proud, it brought more anxiety than comfort. I wanted to make sure that this would be a free ‘choice’ for Michael to make, not a mandate proclaimed by an assumption on our part. I also felt compelled to do everything we could to leave him Michael and his brothers with as little difficulty to deal with and live with as possible. I knew how hard it was to be a caretaker, how exhausted I was, how overwhelmed I often felt, how frustrating it could get, and how draining it could be. I also saw how hard it was for Brian and Daniel to do even the simplest of things, how frustrated they would get, how overwhelmed with the world they often seemed and how much help they needed. There was so much to be done, and not a moment to waste.
I concluded that the only way I would ever be able to die in peace was to ensure that everyone’s needs were being met, and by working as hard as I could to ease everyone’s burden.
I set out to find out everything I could about autism and its treatment. I began to pray that things would change, that the autism would disappear, that it would all be just a bad dream and that we would find a cure. As a child, I was taught that God hears and answers every prayer, although sometimes His answers differ from what you request.
Years of prayers and investigation did not lead us to a cure. It did, however, lead us to a science.
We didn’t recognize it at first, but Applied Behavior Analysis became the answer to our prayers. It took some time for us to embrace it. At first glance it seemed rigid and cold rather than warm and nurturing, but we were drawn to the data that supported it, particularly since we had spent the last three years in ineffective intervention programs. The more we learned, the more we liked. Once Brian and Daniel started receiving effective intervention and Tom and I began receiving effective training, our lives began to slowly improve.
We learned how to be proactive rather than reactive, to anticipate situations and to analyze behaviors. We learned to seize teaching opportunities, and to catch good behavior and deliver lots of praise. We learned how important it was is to be consistent; inconsistency on our part was actually teaching persistence on their part. Above all, we learned that Brian and Daniel could learn and that through hard work, consistency and determination, our lives could and would improve. We were no longer alone or helpless and, finally, there was reason for hope.
Six years have passed. Many things have changed, but some remain the same. Although we still have, and always will have, a significant amount of work ahead of us, our family enjoys many of the things we were once denied. Saturday nights usually find us enjoying dinner at a local restaurant; something that brings shared delight to all of us. We enjoy family vacations, long car rides, trips to the mall, outings to the park, the movies, and yes, even the grocery store. I have no hesitation taking the four children anywhere by myself, something I could never do years ago.
A friend once said that “parents of special children learn to perceive the ordinary as miraculous,” and I have found this to be profoundly true. I have come to deeply appreciate the ‘ordinary miracles’ in our daily lives. Children eager to tell or ask me something often interrupt my telephone conversations. Although I pretend to be upset when they argue, I will be forever grateful for the sibling rivalry that has developed. My stern voice insisting “get to sleep, up there” doesn’t reflect the joy I feel listening to their simple, late-night conversations. And after years of complete disinterest, the children’s nagging for a new toy every time we enter a store is most welcome. You come to appreciate such things that much more, when you have been deprived of them for so long.
These changes in the children and in our lives did not come quickly or easily; perhaps that is why they are so cherished and meaningful.
What remains the same? Michael does. And so does my desire to die in peace. I still pray every day for a cure, but I also ask for serenity. I pray for “the ability to accept the things I cannot change, to change the things I can, and the wisdom to know the difference.”
In a recent essay Michael, now almost 14, wrote that the person he admires most in history is Helen Keller, because she not only overcame her own struggles, she went on to help others facing similar struggles. He said that he would consider it a huge accomplishment if he could go on to help people less fortunate than him in his lifetime.
We were right about Michael and his aspirations, and we were right about behavior analysis and the ‘serenity’ that it brings us. Because of both of them, I know that my prayers have been answered. Because of both, I know now that someday, I will die in peace.
Note: This article originally appeared in an issue of Science in Autism Treatment, the newsletter of the Association for Science in Autism Treatment (ASAT). It may not be republished or reprinted without advance permission from ASAT. Email us for reprint permission.