Inspired By Special Needs Children And Those Who Love Them

Every parent believes his or her child is special.  Bringing home a newly wrapped bundle from the hospital or from the adoption agency is one of the most frightening and wonderful events possible in life.  It can become even more frightening when things don’t go as they are supposed to.

Some parents find out before birth, others while their child is still a toddler and others after their child is grown.  The number of possibilities are terrifyingly prolific.  Ask any pregnant woman who has had to look over long lists of conditions and disorders.  Not to mention accidents and all the other pitfalls waiting in the outside world.

As soon as a parent discovers their child has special needs, the entire game changes.  Some describe it as the death of their hopes and dreams.  Others spoke of a terrible shock, as if they literally cannot comprehend what they are being told.  Even when a parent suspects, having their fears confirmed is a difficult experience.

I based my character, Martha, on real parents who struggle daily with their child’s outbursts and limitations.  They are exhausted.  They are bruised, emotionally and physically.  They face daily scenarios which defy all expectations, such as cleaning up toileting messes from teenagers or having to spend an hour coaxing their child out the door because a different car is parked outside.  But I was struck again and again by how much they loved their children.  When no one would question it if they were ready to give up, the sight of their child still brought a loving smile to their face.  These parents are ready to sacrifice anything: their time, their savings, their homes.  Anything which might give their child a chance.  Many had to quit jobs to devote themselves to hours of therapy and multiple weekly appointments.

The truly remarkable part is that they don’t see themselves as remarkable.  In their minds, they’re just doing what they need to do.  What anyone would do in their situation.  If their assessment is true and we all could step up to do what they do, then the world and the people in it are better than our daily news report would like us to believe.

Bernie is not based on any particular child but I was inspired by the special needs children I met.  Although their differences often make the initial contact uncertain and hard to navigate, once you get past that, you see an amazing array of unique little personalities.  Children with autism who had no social understanding and are thus brutally honest and rapturously thrilled with equal intensity.  Children who defied brain injuries to learn to speak and walk and their contagious delight in their accomplishments.  Some couldn’t speak but still managed to communicate their enthusiasms and dislikes.  Others needed constant supervision because of their ingenious talents for thinking outside the box.  In all of their cases, their spirits shone through.  Their parents cherished those moments, perhaps more than we might expect, because of the contrast with the challenges.

My hero, Michael, is also based on real therapists who devote huge amounts of their time and energy to helping these families.  Male therapists are exceedingly rare, but I indulged in a little literary licence.  It’s difficult to find men who are interested in such an intense caregiving role and even more difficult for those men to find jobs.  Sadly, our fears of abuse make any man who wants to work with young children into a suspect personage.

The therapists I spoke to love their work.  Trust me, the money they make is nowhere near enough for anyone to do the job who doesn’t love it.  They love the moments when they manage to teach a child something he or she has been struggling with for weeks, months or even years.  They enjoy interacting with the children and discovering their quirky personalities.  They find little toys or stickers and pick them up for their clients.  They spend hours playing boring, repetitive games and still have smiles on their faces.

I asked parents what message they would like to send out and the response was almost invariably to be thankful for what you have and to be understanding of others.  Parents whose children cannot speak see children relentlessly nagging their parents for a toy or treat and think “I would give anything to have that problem.”  They ask for patience and understanding when they are dealing with a meltdown in the grocery store, instead of angry comments and disapproving glares.  Many of these children have no outward sign of their disabilities, making it hard for others to understand the challenges.

After seeing what they experience, it certainly made me want to give my own children a hug.  And it inspired me to try and show both sides of their experience: the wearing grind and the inexhaustible love.