Superheroes Are Not Supposed to Cry

Mothers of special needs children are like superheroes.   Just as Superman is summoned to a scene of turmoil in Metropolis, we are the first ones called to the rescue when our children are struggling and need assistance.   Like the Man of Steel, we are strong, confident, and must act decisively without fear or hesitation.   We rely on our keen senses and our own kind of x-ray vision to see problems and resolve them quickly.  Family, friends, and bystanders look upon us in awe and admire our stamina.  We are needed to save the day, day after day, and our work will never be complete.  While we don’t overcome every challenge we face, when we do, our victories inspire our families to keep fighting and believing that there is hope for a better future.

 

But even a superhero is vulnerable.  It was being in the presence of kryptonite that brought the Man of Steel to his knees, sapping him of his strength and power, leaving him too weak to battle his arch enemy Lex Luthor.  For mothers of special needs children, the knowledge of our own mortality is our kryptonite. We understand that we will not live forever.  The thought that one day we will no longer be here to protect our children from our arch enemy, autism, is terrifying.  When the thought crosses my mind, it stops me in my tracks.  My body tenses, my heart pounds, and I am paralyzed with fear because it is going to happen and I cannot do anything to prevent it.   All I can do is control how well I prepare my son for his future, a future that at some point will not include me.  I need all the ability and strength a superhero can muster to control my emotions and think clearly so I can plan effectively.  Of all the challenges I have faced as a mother of a special needs child, this one is the most difficult and, by far, the most important. 

For as long as I could, I pushed these thoughts to the back of my mind.   My young son’s adulthood was light years away and thinking about it was just too upsetting.  I focused my time and energy on helping him in the present.  I attended many meetings and signed many IEP’s during his elementary and middle school years, but I never stopped to think about his future for very long.  But my son is now in the tenth grade and will be sixteen soon.  The time to start thinking, really thinking, about his future has arrived.    The process of transitioning him to adult services and planning the kind of supports he will receive when he graduates from high school has begun. 

  

 Tomorrow I will meet with some of his teachers and therapists to write a plan called a MAP.  The MAP is supposed to provide a framework for his future education based on the strength of his current skills, preferences, and needs.  As his parent I play an integral role in the process, so I was given a questionnaire to complete in advance of this first MAP meeting.  The questionnaire was essentially the same questions asked repeatedly in different ways across four pages.  “What are his goals and dreams for the future?” “What are his strengths and weaknesses?” “What kind of supports will he need?” “Where do I think he will be living and working in his post high school years?” “What are your concerns and fears?”  I read that one twice.  “What are your concerns and fears?”  The blank space under that question was just not big enough for me to list them all.  By the time I finished writing my answers I had a heavy feeling in my chest. 

I can close my eyes and remember how I felt at his first IEP meeting in 2002 when he was just shy of three years old and entering the public school system. The tables in the room were arranged in square pattern, and I was sitting on one side, looking across at the faces of the many caring teachers and therapists that were there to discuss my son’s educational and developmental needs.  I heard them talking but processed little from what they were saying.  I was confused because I did not yet understand the terminology, the acronyms, and the different types of services he would need.   I was stunned as I realized that my son’s young life would be more complicated and totally different from what I had expected. It was painful to think of the difficulties that lie ahead of a young boy struggling with autism.  I felt the pressure of being responsible for making the best decisions to shape his early education and development.  I kept my composure but I was crying on the inside. I remember how difficult it was to hold back the tears. 

Tomorrow I will be sitting across the table from a different group of caring teachers and therapists to begin planning for my son’s transition.  I am very knowledgeable of the terminology, acronyms, and procedures that will be discussed, but I am still nervous.  His school years are coming to a close and his adult life is just around the corner.  The pressure to make the right choices is intense. I have to make the right decisions now to put him on a path that will help him achieve the goal that all parents want for their children;  to live a happy, productive, fulfilling, and independent life.   I am a superhero but I am not immortal.  I know that his life someday will not include me and beginning the transition process has forced me to confront this stubborn reality.   At the meeting tomorrow I know the tears will come.  But like before, I will hold them back and keep them inside. Superheroes are not supposed to cry.