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.

Special Mothers Have Special Powers

Special Mothers Have Special Powers

by Deborah Marcello

In her famous article "The Special Mother," celebrated author and humorist Erma Bombeck gives a spiritual explanation of why God selects some women to be mothers of special needs children. She writes: “God says that ‘I will permit her to see clearly the things I see...I will be at her side every minute...because she is doing My work as surely as if she is here by My side.’"    When the woman asks who the patron saint of special needs mothers is, God answers, “'A mirror will suffice.’"  

Being the mother of a special needs child is difficult- very difficult.  When my son was first diagnosed with autism at age three,  I kept a copy of this article nearby and read it often.   At first, these poignant words gave me strength and inspiration. Believing that I was chosen by God to raise a child with special needs made me feel powerful and competent.  But after reality set in, the initial surge of flattery and encouragement quickly faded.  I wanted to tell God, “Thanks, but no thanks.  I don’t want to be a special mother.”  

Raising a child with special needs is physically and mentally exhausting.  Special mothers have work ten times harder than typical mothers to help our children master skills that should come naturally.   Sometimes, no matter how hard we try, milestones simply cannot be reached.  When other moms are bringing their children to practices and social events, we are driving ours to therapy appointments.  We don’t have the opportunity to socialize with other moms because our children do not form friendships, play on the same teams, or participate in the same activities as their children.   We can never truly rest because we know that there is an infinite list of weaknesses to improve,  problems to solve, meetings to attend, and a system of support we must provide long past our child’s eighteenth birthday. 

Even though we carry these heavy burdens on a daily basis, special mothers, are not miserable or unhappy.   We do not see ourselves as victims and we do not want pity  We love our children so deeply that we would not trade them for the “non-disabled” models.  When I stop and think about the progress that my son has made and everything that I have done to help him succeed,  I am amazed.  I wonder how I did it.  How was I able to see into the future to notice my sons’s potential and have the knowledge and endurance to guide him there?   I have come to believe that when God gave us His special children to raise, He also gave us abilities and talent to help us succeed.  Similar to superheroes, special mothers have special powers.  

Special mothers have extraordinary powers of perception.     We are able to see through a crowd of people or a flurry of activity to notice even the smallest details about our children.  Because they develop on an unpredictable timetable, our children are always on the verge of achieving a milestone.  The skills our children are taught in a therapy room usually do not occur for the first time in that quiet, focused setting.  These achievements happen at random times in our daily lives, when we are busy doing other activities and not working with our child.  When my son did something for the first time, like make a sound, say a word, form a sentence, or call a family member by their first name, I was usually preoccupied.  I was in the middle of a conversation doing the dishes, watching television, or otherwise not paying conscious attention to him.   But I always heard and I always noticed.  This x-ray vision has enabled me to witness and celebrate each hard-earned step in my son’s development, and seeing him succeed gives me hope and strength to persevere.

Special mothers have a powerful sense of intuition and can see into the future.  By thinking about what might happen in an upcoming situation, we can prepare the necessary supports to keep our children safe and comfortable.   We have the ability to envision an environment, break the action we have to take into small steps, predict what part could present a problem, and create a strategy so our child can be successful.  This preparation takes time and requires a clear vision of what is most likely to happen.   Special mothers live though an event in our minds ahead of time so that we can help our child live through the event in real time.   Once we are in a situation, we rely on our vision to troubleshoot problems before they occur.   If a child is a runner, we quickly notice the location of the doors and prepare a plan to thwart an attempted escape.  If a child throws himself on the ground when upset, we ensure he is on a rug and not the tile floor when we see him getting frustrated.  Through the use of my powerful intuition, I was able to create picture stories to ensure that my son was successful in social activities like parties and field trips.  

Special moms have super-human strength.  I am not referring to having big muscles and being able to lift heavy objects, although subduing a child’s tantrum is physically exerting.  The remarkable strength that special moms possess is internal.  It is the kind of strength that we draw upon to hold our emotions in tact when a friend complains about her child’s A- english grade while our children are struggling to read.  This strength enables us to hold back our tears when another mother complains that she has to take her child to yet another birthday party when our children receive no invitations.  It is the kind of strength we draw upon to not lose hope when a specialist coldly informs us of our children's limitations. Because of this super-human strength, we can muster the energy and patience to teach or reinforce a skill when the correct moment presents itself, whether it in the privacy of our home or in a public place with people watching.  

Special mothers are in a club with an involuntary membership.  Before we had kids we realized that being a mother would be hard, but we certainly did think it would be this hard.   Although our experience is different and difficult,  special mothers are not faced with an impossible task.  We use our powers of extraordinary perception, intuition, and super-human strength to meet the challenges inherent in raising children with special needs.  We are the driving force behind our children’s achievements and we never take for granted the hard work it took them and us to get there.    When special mothers look into the mirror, we do not see ourselves as saints as Erma Bombeck once wrote.   When we look into the mirror we see ourselves as mothers who are uniquely powerful, confident, capable, and yes, truly special.