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.

Do Not Be a Sheeple

‘The only thing necessary for the triumph of evil is for good men to do nothing’

-        Edmond Burke

If you are the parent or caregiver of a child who has special needs, do not be a sheeple.

If you are a teacher or professional who works with a child who has special needs, do not be a sheeple.

As a matter of fact, it does not matter who you are.  Under no circumstances should any of us be a sheeple.

I have a friend who has an expression for someone who follows the flock blindly.  She uses the same expression for someone who is more concerned with trying not to make waves and going along with the group, even if that is really the wrong thing to do.  She uses the expression for someone who is not willing to stand up for what is right because of concern over the possibility of personal consequences to friendships or because the person just does not want the hassle of making a decision. It is easier to follow the flock.

That term is sheeple.  If you haven’t figured it out sheeple = sheep + people.

Do not be a sheeple.

In some ways I consider myself lucky.  My father is an ex-Marine who spent 30 years as an elementary school principal.  He is the son of an ex-Marine.  My mother is a former speech teacher who became an elementary school principal.  I was brought up to believe that honesty and directness are two of the most – if not the most - important qualities a person can possess.  My wife, Sidney, tells me often that I am too willing, when someone says or does something that find important to comment on, to go where angels fear to tread, and open my mouth.  I am not talking about being a shouter or being aggressive.  What I am talking about is a willingness to voice my approval or disagreement with an idea or concept that a person or a group may hold, and to explain why.  Am I always right?  No.  But if you can provide me with a cogent, persuasive argument as to your position, I will listen and consider.  Then I will decide if I should deviate my course because of a strong, valid argument.  Now, let’s be honest.  I am human and I am not always right (please do not tell my wife that!)  My perspective on this is that, at a minimum, I have a strong personal compass.  I will leave it at that.  

But what about you?  Do you walk away from situations feeling troubled, like maybe you should have stood up for your belief?  Or maybe have you walked away from a situation where you think that child you are responsible for – in whatever capacity – might really be worse off because you did not speak up?  If you have done that, it is human to want to avoid that conflict.  The truth is that it does happen.  Dissent is not comfortable for any of us.  But, please, think twice for the good of that child.  Is avoiding that feeling of discomfort that each of us may feel during what may be a frank discussion worth the tradeoff of what the actual impact of that particular decision may be on that child?  

Consider that if you can offer a solid, well-spoken line of reasoning, even if that reasoning is the countervailing view in the room, you just may be able to turn the flock. Maybe others are thinking the same thing you are and waiting for someone with the courage to speak up for the child.  You will never know unless you screw up your courage and try.  At a minimum, you will probably walk away with the respect of others, and probably someone saying to themselves that they wish they had the courage to do what you did.  Who knows, just maybe you will be the one who makes the flock turn in a new direction and help its less fortunate members to find greener pastures for grazing.

Do not be a sheeple.

No, it Does NOT Involve a Hippopotamus

When our son Ian was 4, he was using a Rifton walker.  You know, big metal frame, 4 small wheels – one on each corner, two metal rails that came up and bent towards the center, and a padded leather chest strap.  The thing weighed more than he did, but it gave Ian a way to do what he wanted to do. He wanted to move and be upright.  We did not know if he would ever walk without assistance, but at least it got him upright and the ability to move on his own.  About the time he turned 5, he had made progress.  In fact, he had made lot of progress.  The Therapist moved him out of his Rifton and into a much smaller and lighter posterior walker.  It folded up, it was very light, he could actually run in it, and he did.  Lord, did he run.  The denouement came when I turned around at the base of our driveway and looked up the 30 degree slope to see Ian pop up and sit on the back of the walker and promptly ride it straight down the driveway.  It reminded me of those old movies of barrel riders going over Niagara Falls.  That was the point that I truly understood that my mission was changing to one of just trying to catch up to him and keep him from going over the cliff.

Three years later, at age 7, he walked by himself for the first time.  Seven years after that he joined the track team at Florida School for the Deaf and the Blind.  He was never going to the Olympics, but he ran.  He did what he always wanted to do – he ran.  I can never say enough about the schools track coaches at the time.  Simply put, they ‘got it’.

So how did he get from the Rifton to running track? Most of it, honestly, was Ian and his desire to do something.  That has been the one constant in his life.  His desire is a steel that exists in him that you don’t know is there until you really get to know him.  But he had a lot of helping hands.  One of those things was something that we stumbled on by chance.  We were looking for something for a 4 year old deaf kid with cerebral palsy to do.  There weren’t a lot of options.  However, Ian always was (and is) drawn to animals, especially large animals.  One of Ian’s therapists said we should look at hippotherapy, since Ian likes large animals.  My first question was, “What exactly is Ian going to be doing with a Hippopotamus?”  

It was explained to me that hippotherapy had nothing to do with hippopotami, but instead was therapy using a horse as the modality.  My response was ‘OH!’  So we figured we would give it a try.  

Ian took to it like a duck takes to water.  His first lesson, we discovered that some horses do NOT like sign language.  I signed a little too close to a horse named Touch, who was touchy, and promptly reared and threw Ian.  All the adults freaked.  The horse was moved one direction, Ian hustled the other.  When Ian was asked if he was ok, he actually became as indignant as a 4 year old can become, and announced he was fine, he was not finished, and he wanted to get back on the horse, and why did they move it away, he could control the horse.  If nothing else, Ian had confidence in his abilities.  All of the adults also quickly understood we had an activity that he could do.  

So, every Saturday morning we would wake up early and drive about an hour and twenty minutes to the stables.  Early on, Ian and I went without Momma.  When Mom was finally able to join us, Ian and I had a routine.  We were busted big time when Ian looked at me and signed ‘gas station’ and ‘donuts’.  Our ritual included a signed version of ‘men, men, men, men’ and a stop at a gas station that also had a Dunkin’ Donuts shop.  We would buy donuts – Ian usually had 2, often Boston Crème or chocolate glazed, with a Mountain Dew.  I would have a couple of glazed and a Coke.  Not the best breakfast.  My wife was pretty good about it.  I got the hairy eyeball, but it was decided that on these days it was ok, but no more junk for the rest of that day.  Then she asked me for a donut with sprinkles and a large coffee.  

Within a month, Ian was helping to groom the horses and saddle his.  He did not use Touch any longer, but a horse named Skip.  Skip was, for all intents and purposes, a golden retriever in horse clothing.  He was the perfect therapy horse.   Ian learned a lot.  For instance, you do not take your walker and walk under the horse’s belly, even if it is easier to get the belly strap to the other side.  You have to watch where you walk.  He also learned, besides doing a great deal of therapy work, how to rein and how to use his legs to turn the horse, and how to sit up straight.  

Along with doing something he enjoyed, his muscle control and tone improved markedly.  His self-confidence also grew.  Over the course of about 2 years, his skills grew.  His therapist actually entered Ian in an inside the ring horse obstacle course competition.  Ian was going to ride by himself.  No spotters, no guide.  He had to go through and around obstacles, get a letter out of a mailbox, back the horse through an obstacle, and other things.  He did well.  By himself.  He was so proud of himself, as were we.  My parents went to see the event.  My mother was on the verge of needing to be tranquilized.  Ian was not supposed to be able to do those things.  The best part was when Ian finished, the therapist told Ian to take the horse to the other side of the field to the trailer.  I thought my mom would pass out.  

Over those 2 years, hippotherapy was a fantastic success and also turned into a family activity.  After that obstacle course contest, our therapist said that he had maxed out, and he needed to move to regular riding classes.  Ian continued to ride weekly until we moved to Florida.  Then, other things prevented it from being a regular event.  But the effects on Ian and his movement and skills were obvious.  I am not sure he would have walked when he did if not for that therapy.  It isn’t for every child, but it definitely was for Ian.   And all because we were willing to try therapy involving a ‘hippo’ until we found out that really meant ‘horse’.    So, be open to try new things.  Some will be successful.  Some will fail. But the truth is that you will not know if an opportunity is an opening your child needs until you try.  Be open to the possibilities.

I have a number of other stories about Ian and horses.  We won’t get into the time as a teenager that he came flying at a full gallop, on a horse named Tiny, around the barn at a stable where we went riding.  Tiny was a Clydesdale….  My thoughts were ‘dear God, where did they get an elephant?’ and then ‘We’re all going to die….”  But, in the end, we would go living life, and probably with a smile on our faces.

The Theory of Relativity

It is possible, at least in my world, for time to speed up and slow down.  Sometimes this seems to happen simultaneously.    Time is not a constant.  At least I can thank Albert Einstein for giving me the capability to believe that I am not crazy.

You see, this year is a bit of a momentous year in our family at multiple levels.  First, our son, Ian, will be turning 21.  That event will happen very soon, in fact.  I guess I should feel good about it, because he asked me to take him out for his first beer.  I will.  There are some folks that I will take along as well, so we can celebrate his birthday.   That celebration won’t be extravagant.  We don’t really do things that way, and honestly, Ian does not either.  I think for him it is one of those turning points in life.  I am pleased that he wants his father to go with him. 

I’m seeing more changes as well.  Maturity continues to show up...  Ian has moved himself into the computer science program at the Saint Johns River State College and is signed up for three classes, including Intro to Programming, Microcomputer Operating Systems, and Network Design.  He is also researching and talking about a plan for his future once community college is finished.  The long running joke about the University of Hawaii and beaches seems to have run its course.  Instead, he is investigating places like Lenoir-Rhyne University in North Carolina, which has a long history of educating students who are deaf.  This is important because it indicates a new level of maturity.  Ian is considering his future far more seriously and honestly than he did even two years ago.  His questions, actions, and decisions are far more mature.  He is mapping his course to his promised land.  He is also depending on us less and himself more.  All these things are things my wife and I have wanted to see for a long time.  We are happy. 

But it also makes feel old.  I sit here and wonder where the time went.  How did it go by so fast?  I have a hard time not seeing him at 3 using his hearing aids for a spoon to eat yogurt when he had dropped his real spoon.  Or him in his posterior walker as a 5 year old (Ian has cerebral palsy - he has not needed the walker since he was 7, when he started walking independently) on the day at the zoo when they had a tiger cub about the size of a golden retriever out on a leash and he decided it would be fun to pet it.  I remember looking at that tiger’s eyes and seeing them register, “CHEW TOY!!!”  I remember the first of many days waiting at the bus stop, first in Virginia, and then here in St. Augustine.   Now, I watch him get in his car and head off to classes or somewhere else.  It makes me feel old.  But it also makes us feel good. 

All those hours my wife and I spent debating if we were making the right decisions.  The recognition that sometimes we had made the wrong decision, the frustration of that recognition, and understanding the need to back up and make that second choice is still fresh in my mind.  The long discussion about quitting our jobs and moving from Virginia to Florida to get him into Florida School for the Deaf and the Blind that, once decided, took on the look of one of the crusades, with applications, reconnaissance to find jobs and living space, and the discussions with two sets of grandparents that we were no longer going to be living close by. 

As many of you know, it is hard when you have a child with special needs to make decisions because there is no immediate answer to whether that decision made was correct.  You get your answer through time and chance. And sometimes it is a very long time before you even get an inkling of that answer.  While all these decisions were being made and implemented, time seemed to crawl, as we waited to see if we guessed correctly.  But now, 21 years into it, we are getting a feeling that just maybe, with all those fits and starts, that things might really work out for our son.  Just maybe we have navigated the rocks and shoals, and are seeing the lighthouse in the distance that marks the entrance to his safe harbor.   I know that is really an illusion, and there will be more challenges ahead, but Ian seems to be acquiring the tools he needs to address them as an adult, and that is the key to being independent.  And as we look back on these last 21 years, time seems to have flown.

But I still feel old right now.  You see two other things will happen this calendar year.  Both my wife and I will turn 50.  We are all of 12 days apart in age.  It seems funny, but usually birthdays and age don’t really matter to me.  I cannot stop that immense progress of time.  As the Jimmy Buffett song says, “Just another trip around the sun”.  But this year just feels different.  Maybe it is a combination of watching Ian and seeing 3 birthdays approaching that all have a traditional level of significance in our world.   Some of it, too, may be a bit too much time to think.  I had some knee surgery this summer to clean up a long-standing problem.  It required a lot of sitting time afterwards.  It did not help to find out that my physical therapist is young enough to be my daughter….   Things like that are starting to happen more and more. 

I am sure these feelings will pass.  For me, they usually do.  Schools are coming back in to session, and my job gets really busy once the school districts have the kids back.  I still feel somewhat useful at my job, and my PT cleared me today to start doing some walking again for exercise.  I’m guessing that soon enough I will be back to 4 or 5 miles a day.  Time just continues to pass.  But we are beginning to see that there really may be an end to the road of our first, and most important great mission in our lives – that of getting Ian into adulthood, independence, and hopefully.  Just maybe our part of that quest will end in the next few years, and Ian will pick it up for himself.  Just what we want and have hoped for.  As an adult, it becomes his task.  It does not mean that we won’t be around when he wants advice; just that he has reached that point of choosing his paths for himself.

Also, do not get me wrong, I’m not sad about getting older, it is just a realization.  Like my wife tells me – I think too much.  Too many things process through my head, and this summer I have had way too much time to allow my head to go where it wants.  As I said, that will stop as my workload spins back up.  My wife and I are talking about and making plans for the future and I realize that we are still about 17 years from retirement age.  That isn’t really that close and I expect that getting there will take forever, but once I arrive it will have seemed like the blink of an eye.   Oh well, so it goes – no sense in worrying about it, is there?

Alternate Universes

This past summer has been different for me.  We spent some time in Virginia with my parents, particularly spending time with my father, whose medical issues are becoming more apparent as he gets older.  I also had the pleasure of having knee surgery to fix a problem that started 30 years ago while playing high school football and finally resulted on the knee giving out on me late this past spring.  A result of both of these events was that I had waaaaay too much time to sit and let my mind travel.  So where did it go? 

It went many places, but one place in particular that I think some of you may find interesting.  That place was a consideration of how my outlook on life has changed over the last 20 years and how different I am now from how I may have been had our son not been born with disabilities.  What I find really interesting is that while my life would have probably been a bit less stressful, it also would not be as rich or, frankly, as aware of the world around me.

  

How?  Starting out, several things stick out most to me.  I would probably not be living in Florida.  I would not be working at this job, and would probably not have much knowledge or involvement with deafness or with disabilities in general.  But those are not, at least to me, the most important differences.  The most important things are the ones that you cannot outwardly see.  

   

First, I learned that life is not about instant gratification.  Life does not occur in sprints, but in long marathons, where patience and perseverance is required.  Ian has his high school diploma and is doing well in college, but there were many times when I came close to despairing about the question of if we would ever get through public school.  Much of that came when Ian was younger, and was still working through how he would deal with his disabilities.  Now he is in college.  He will take a couple of extra years to complete that schooling, but right now he as a 2.85 and is marching forward.  The long view matters.  Ian was not supposed to walk, but did at age 7.  When he got to high school, he ran track.  He was not fast, but he ran.  He loved it.  He also completed his Eagle Scout rank in Boy Scouts.  Part of the rank advancement included hiking, including a 20 miler.  I thought it would kill him, but he did it.  Perseverance, seeing the end goal, and learning to accept what comes and the time needed to get to his goal.  The long view…  Ian has always seemed to have it.  I have learned it.

   

I also have learned a lot about the concepts of bravery and what I can deal with.  It is a much broader concept than many people see.  People always comment on how happy Ian is.  He doesn’t let his disabilities bother him.  Instead, he just does what he needs to do to accomplish whatever it is that he is doing.  Ian continues to work at things – especially those that require very fine motor skills – when others would have given up.  He doesn’t quit.  He tries, tries again, and tries again, all the while keeping not just a stiff upper lip, but a sense of humor.  When he sets his mind to something, he usually manages to succeed.  One of the deacons in our church, a former career military man, tells me often that he truly looks forward to seeing Ian on Sundays because he knows that no matter how lousy his week may have been, he will be lightened and encouraged by Ian’s joy in life. He also says he will be reminded that no matter what happens, if Ian can keep pushing forward with his happy outlook on life, with all the things Ian has had to deal with, then there is no reason for him to let the world get to him.  He tells me that even with all the things he has seen in his life, Ian may be the bravest individual he has ever met because Ian has had to deal with his obstacles every single day in his life, and just keeps coming back for more.   When I see people like Ian in schools or in the world in general, you realize that Ian is not unique in his outlook or desire to succeed.  How do you not learn personally from things like that?  It changes you, and changes you for the better I think.

    

I have also come to understand that there are things in our lives far more important than money or power.  I have made far more money earlier in my life than I make now.  I have also had far more decision-making authority when I worked in other places.  At one time I was making decisions for an annual project budget of around $10 million.  Sounds great, right?  Not really.  While I enjoyed that job, and the company I worked for was a fantastic place to work, the truth was that it was in computers and everything I did there would last about 10 years before being replaced.   It was initially very hard for me when I left that job – a big loss of income, and a loss, in my mind, of some of that alpha male status.  But thanks to Ian’s need for an education, I did not really have much of a choice.  The move to Florida led me someplace I never really saw myself.  Here in Outreach.  I don’t make anywhere near the money I did in the private sector, I have no one reporting to me, and I manage a part of my project that has a division of one.  For many, and at one time, for me, I would have considered it a step down.  I’m sure some do.  I do not.    You see, I found a job, and a group of kindred souls who have a similar outlook to me.  The job is something of a calling for all of us.  None of us will ever be financially rich, but there is a whole different kind of wealth that carries greater weight in the big scheme of things that all of us in this field own.

     

You see, we traffic in the currency of hope.  We give people hope.  Hope that those we work with can make things work in a classroom for a student with special needs, or hope that maybe, no matter how bad things may seem for a family, there may be a light at the end of the tunnel that will allow some level of success for their child.   I did a rough estimate of how many people I have worked with in some fashion over the first eight years on this job.  It came out to over 10,000 people….  And I am not unique.  It is a calling for me, and for many of us who work in this field.  We earn a currency that you cannot trade with or buy things with, but one that always lets me hold my head up.  I do not mind getting out of bed in the morning to go to work.  How many people in this day and age actually can say that?  And it would not have happened had it not been for my son having disabilities, a need to learn all I could about those disabilities, and an eventual need to move to Florida to get him to a school where a kid who is deaf could get a good education.

     

Thanks to my son, I have rediscovered a sense of empathy and a willingness to see other points of view.  I have talked about this before in other blogs, but one thing that people who know Ian tell me how strong a sense of empathy he has for those who are sick or hurting or infirm.  He seems to sense when someone is having troubles and will go out of his way to try and help make them feel better.  Seeing him sit with his grandfather, who is in a decline due to strokes, for hours and just hold his hand or be with him is not something you see in many 20 year olds (or us older adults either).  But it does set an example that makes you reconsider what is truly important in our lives.

    

Thanks to Ian, I have also found a sense of wonder in the world again that I think often gets lost in our daily adult routines and pushing to succeed.  My wife and I believe strongly that learning is enhanced by actually seeing and touching things you are learning about.  We both think that this is doubly important for children with disabilities.  So we have made a point of trying to travel whenever we can with Ian.  The kid who is deaf and has motor skill issues has done a lot of things – he has seen wolves and grizzlies up close, he swam with dolphins, he has walked on the ocean bottom using a diving helmet, he rides horses, he has seen a several volcanoes eruption in person, and stood in the caldera of one volcano.  He has walked the streets of a city destroyed by an eruption, been to places where kings and queens lived, walked the beaches and battlefields of Normandy, seen a how people live in other countries, saw the aftermath of a terrorist attack in London (the day after), and has been exposed to as much of the world as we possibly could do – intentionally or otherwise.   My son, the young man, wants to see more.  He wants to go places he has never been.  He understands the world is a big, wonderful, and sometimes dangerous place, but full of interesting and exciting things and people, and something he is a part of.  It is an understanding I do not think he will lose.  Over the years, thanks to Ian, I have re-learned this.  It is like having your eyes being reopened and seeing things again for the first time.  This probably would not have happened had it not been for Ian and his disabilities.

      

So, what is the point of my ramblings?  The point is that, while I would not wish for someone to have a disability, I also do not believe that having a disability should be looked at as an unmitigated disaster for that person or for that family.  Instead, it can and often does, open up doors for that person and their family that may not normally open.  Perspective is important.  When looking at the impact of a disability on a person and family, while disabilities often do take some things away, it also can create unique opportunities for a full and rich life for those willing to look at things with a fresh perspective.  Hopefully, if you have a disability, or are in the family of a person with a disability, you already understand what I’m talking about.  If you do not understand, but are one of these people, please give what I have written some thought.  Maybe it will help you see things through a different lens and be open to some new possibilities.