Normality

It is sad, really.  Currently, our family’s life is pretty normal.  No big issues or concerns outside the normal ones that most families have.  No abnormal crises.  No looming disasters on the horizon other than the normal storms that every family has to navigate around.  Yet, here I sit, waiting for the ‘other shoe’ to drop.  You see, in a family with a child with special needs, periods of normalcy are almost scary.  These times just do not happen. 

    

If things seem normal, then it cannot be good.  We must have missed something.  Somewhere, somehow, there must be something that was overlooked.   Families like ours just are not allowed to have normalcy.  As much as we want that comfortable feeling of issues that are ‘normal’ in a family, we know that when you have a child with special needs, such comfort only means a nasty surprise.  Instead we dread such periods, looking for that nasty other shoe.  You see, the Fates to not permit us the luxury or the comfort of being able to relax.  The more that we begin to feel like we can let our guard down, the more the hair on the back of our necks begin to stand up and tingle.

   

You see, those of us that live in the special needs world feel most at home and most comfortable when the crisis is happening.  We spend so many years bouncing from near disaster to near disaster that we don’t know what to do with ourselves when we haven’t just ridden out of one and aren’t looking down the maw of another.  For 20+ years, the ride has felt like a continuing sequel to the “Indiana Jones” movies.  As a parent, you get so used to surviving one scrape to the next.  Surviving and pushing forward, winning some, losing some, but moving forward.  You don’t really believe there is a true finish line.  Maybe there is.  Who knows….

  

All I know right now is that while I want to believe, like the two antelope with night vision goggles in that new insurance commercial, I certainly do not plan on letting my guard down.  Maybe if I’m lucky, and this trend continues, in about ten years I might be able to relax…..

Twelfth Night

‘Hell is empty, and all the devils are here’

-William Shakespeare, The Tempest, Act I, Scene III

‘Be not afraid of greatness:  some are born great, some achieve greatness, and others have greatness thrust upon them’

                              -William Shakespeare, Twelfth Night, Act II, Scene V.

Two of William Shakespeare’s most popular comedies are Twelfth Night and The Tempest.  They have seen a resurgence in the last decade.  Whether you realize it or not, there a number of movies and shows that are based, some closer and some more loosely, on these plays.  If any of you have seen a movie titled She’s the Man, it is actually a retelling of Twelfth Night.  While the dialog and setting has been updated, the characters are the same, and some of the more famous quotes have been retained.  Anyway, that kind of thing fascinates me and also shows how the Bard’s works and themes about people and humanity transcend time.  Both of these plays also remind me of what often happens to fathers when they find out that they have a child that has special needs.

Both of these plays, even though they are comedies, start out with disasters.  In both plays, a shipwreck creates havoc and casts away a person on an unknown shore, where they have to try and figure out how to adapt and survive.  In many ways, this is what happens to dads. Dads must weather the storm and try and survive the shipwreck.  At times, in our initial despair, we do believe that, ‘Hell is empty, and all the devils are here’ with us.  We are tormented by what was expected, what has happened, what is going on now, and fears of what may be.  We are not sure if we can find our way from the ship to shore without drowning, or if we will find any other survivors from our family on that shore. 

Once we have reached the shore, even though we have survived the disaster, we now feel as if our survival depends on our ability to disguise ourselves.  We hide who we are and how we feel until we can get from the safe yet uncertain shore to a place where we truly begin to understand the new world, and understand if we are truly safe.  Only when we believe we are truly safe are we able to begin to reveal our true selves to those around us.

Sounds familiar if you are one of these dads, doesn’t it?  I cannot think of a single father, myself included, who has not done this to some degree. 

In both of these plays, the characters are a spider web of people, people in disguise and people interlinked with other people.  I once saw a character diagram of both of these plays, and, even knowing them, I had a hard time following all the crosslinks between characters.   Our lives are like this as well.  When that child with special needs drops into our lives, suddenly the character lists in our worlds explode.  In my case, we didn’t just add a child and a pediatrician, but a 4 person early intervention team, a neurosurgeon, an orthopedist, an audiologist, (and all their staffs), two different hospitals (because of where the doctors practiced), and a whole host of other folks.  We almost needed a program to figure out who was who and a large calendar to figure out who had to be where when.  Sounds much like the chaos that rules throughout these two plays and creates the comedic effect.

But, of course, the difference is that for us dads, this is real world, and not theater.  In the plays, everything comes out with happy endings.  The right people unite, the bad folks get punished (but usually not too badly) and everyone lives happily ever after.  We fathers aren’t really sure what the ending will look like in our real world.  Also, we don’t get the solutions in two to three hours.  Our answers come in years.  Sometimes many years, and sometimes the answers never arrive.  We also are not sure if our situations are a comedy or a tragedy.  I do think that the story can be whatever we make of it.  How we choose to see all the events that happen and what perspective we place on it.  In the end, it becomes our choice and we have to use our intellect to determine whether things are tragedy or comedy.

Truth be told, Shakespeare gets it. 

Early Steps

Ian was born in Virginia, and that was our home until he was 11.  Not long after his birth, we were contacted by the early intervention program for our home county.  In Virginia at the time, the early steps programs were run through the state health department, with county offices.  After an initial evaluation, Ian was assigned 3 service providers.  He had an Occupational Therapist, a Physical Therapist, and a Speech Therapist assigned to him.  Looking back now, knowing what I know now, it was an amazing devotion of resources and support by the state.  

I can honestly say that I do not believe Ian would be where he is now, and I do not believe that my wife and I would be where we are now in terms of having been able to provide the support Ian needed without those people from the Early Intervention program.  While they worked with Ian, they also had the patience of Job when it came to dealing with two very stressed out and, honestly, frightened parents.  They understood not only patience but had a level of empathy that allowed them to understand and guide us through those incredibly stressful early months and first years of Ian’s life.  For us, just the understanding that we had someone we could talk to and who understood what was going on in our world was so important to us.  For many families, ours included, there aren’t many people who really had an idea what it was like with a young child with multiple disabilities.  Our friends really did not understand what our world was now like, and try as they might, our families really did not get it, either.  

Early intervention is critical for a child with a disability.  Early intervention is also critical for the family of a child with a disability.  While they will not be able to resolve many issues, because disability related issues are not issue that can be solved in a week or a month or even a year, but last for a lifetime, the early interventionists are shock troops of support.  Something like the Marine Corps, in my mind.  Their job is to go in, take a beachhead, get boots on the ground and begin to get the situation under control.  They stabilize that family and point it in the right direction; they begin to knit the service and support network together and to begin getting those services to the child and the family.  Then, once those first few years are over, and things are more stable and, hopefully, the family has its respective head on straight and is moving in the right direction, the early intervention provider hands that child and family off to the school district, where the long job of getting that child an education starts.    Their job is now done, and they move on to the next new child and family needing help.

I know this to be true.  We have lived it as a family.  I know where we were when our family was when we first met our Occupational Therapist.  Her name was Carol.  She happily introduced herself to us, and we talked, and talked, and talked, and talked.  We explained everything we knew about Ian and his ‘history’ to date.  We talked about our hopes, and I’m sure she was able to read our fears and understood our nightmares about the future.  You see, we had a pretty good idea that Ian had cerebral palsy, as well as being deaf.  The deafness did not terrify us.  We had friends who had deaf family who were living successful lives.  The CP, on the other hand terrified us.

I then remember her sitting and listening, and seeing a little, soft smile on her face when we finished.  One that kind of gave you the feeling that she got it, and we could trust her and she would help us.  When she spoke, she said something that neither of us would ever forget, and it was something that began to push us away from the possibility of dropping into the pit of despair that we were looking into.

She told us that she understood, and while there would be a long road to travel, with ups and downs, it would all be ok.  Things would work out for us and for Ian.  She told us that CP was not the end of the world.  She told us that while Ian would have to work harder in his life to be successful, it was very possible, and that he could have a good and successful life.  While there were no promises, all things were still possible for our son.

Then she told us something personal, and something that renewed the hope and began to quench the fires of despair that we were dealing with.  She told us that she had a form of cerebral palsy.  And that her husband did as well.  And she told us that both of them were employed in jobs that they loved and allowed them to live good, solid lives.  Oh, and their son was finishing up his senior year in high school and was being considered for football scholarships.   

There was hope for us, for our son, and a reason to move forward….

First Contact

Ian started school at 23 months of age.  Where we lived in Virginia, preschool started early for children with special needs.  By the time we left Virginia for Florida we had a pretty good relationship with the school, the teachers, and the staff in the district.  

Unfortunately, the relationship between our family and the school district did not get off to a rousing start.  After our first meeting, it took time to heal what was something of a damaged relationship.  The damage to the relationship was started by one comment from one staff person.  We did not really know any better, and under what is a stressful situation for any family – that first eligibility meeting after all the evaluations have taken place – that one comment seriously impacted our relationship with and trust of the school district.  It took time to mentally get to a point where we could actually trust everyone again.  

It did not matter that the bus driver was the equivalent of a mother grizzly bear, who would have protected those children with her life, or the teacher and staff in the preschool class, who were some of the most loving, patient and caring people you could have ever asked for to watch and teach your child.  What did matter, and what had rocked my wife and I to our core was the response to one question of concern for our son that we had asked at that eligibility meeting.  That response was, “What will it matter?  He (Ian) won’t amount to anything anyway.”  It was said by one person as a matter of fact.  No doubt, no maybe, but pure certainty.   

Without a doubt, we melted down.  Our little ray of hope for our son was simply ground underfoot by that one response, and the school system had gone from a lifeboat to a shark circling and smelling blood.  We were now trying to figure out what we could do for our young son, and how would we give him an opportunity when even the school district had written him off.

What we should have known is that the school system had anything but given up.  Everyone worked hard to help our son.  From teachers to aides to therapists and others, uniformly they worked to do whatever they could to educate and help our son.  The reality was the problem was created by one tired, jaded, and nearing retirement staffer who was burned out.  She did not represent the district, or speak for them.  She was that exception.  She was the proverbial rotten apple that had ruined the barrel.  And the reality was that the other staff people present were as appalled as we were, and that woman would never again participate in a meeting about our son, and would never again be involved with him or us.  But as stressed out parents who were trying to make it from day to day and do whatever we could to help our child, we were unable to see that reality.  All we knew was that a representative of the one group that was supposed to help us for the next 15 years had just told us our son was, for all intents and purposes, a throwaway.  

We were just like most every young set of parents in the special needs world.  We were scared and panicky and looking.  And when this happened, our reservoir of trust was emptied.  The sad part of this was that my mother was a senior employee in the county’s central office.  That is how stressful things were – even with a family connection to the district, we still could not trust that district.

This is a cautionary tale, whichever side you are on.  If you are a parent, please realize that when these situations happen, and they will happen, you cannot paint all people in the school or other organization with such a huge brush that you condemn all of them because of the actions of one.  Try and take a deep breath and suppress the anger.  Try and see that bigger picture.  Talk to someone.  Realize that one person does not make up the entire organization, and try to give others a chance.  Over the long haul, you will find that you have many, many more allies than enemies.  If you can survive the insult to your system, you can actually work more effectively for your child with all those allies.

If you are in a school district or other organization working with the families of children with special needs, or working with those children directly, or both, there is a different message for you.  That message is that you must be careful about what you say and how you say things.  One callous remark by one person in the organization can destroy that organization’s relationship with that family.  No organization needs to have that happen.  It makes things that much harder to complete your mission to educate that child and to help that family.   Be aware of this issue.  Make sure you are honest with the families, but even when being honest, remember to be sensitive of the family’s feelings and do not talk in complete absolutes about the future, because as we know, the future is always hidden from us all.