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.

Things I Think....

Things I think…..

I have a hard time reading the newspaper these days.  It is hard, when you read the letters to the editor, or the news about the behavior of our Congressmen and Senators, or see the lack of critical thinking skills and ability to look at anything besides political considerations in decision making, that I have a hard time having faith in where our society is going.  We seem to have moved backwards into an era where we distrust everyone who looks different from us, or who speaks different from us, or has a different cultural background, or, God forbid, came from a different place.  We won’t even get into some of the opinions about those who have a disability.  It seems as if many of our fellow citizens have forgotten – or maybe never understood in the first place – what civilization means.  Too many seem to be more concerned about what can they get, and that someone different doesn’t get more than them.

I have long seen this with groups like the Tea Party in particular, and with many at the extremes of both ends of the political and social spectrum.  But more and more, I’m seeing this kind of thinking move towards the middle of our society, and it does concern me.  Yet what concerns me more is the lack of critical thinking, of deeper understanding.  Too many can read the words to the Constitution without really understanding how they came to be, and without that understanding, it is hard to really understand how they were intended to breath and flex over time.  That is what has traditionally made that document so successful. 

Further, too many of these people have forgotten how important compromise is in society.  They do not realize that our Constitution was created through a series of compromises by the framers, without which the document that we have would not exist.  Someday, check out the Virginia Plan (from the large states), or the New Jersey Plan (from the small states), or that little agreement that counted slaves as 3/5 a person for congressional representation in the House.  For so many people today, and particularly those in political leadership, the word compromise has become a dirty word, and governance has become a zero-sum game.    Whether or not you liked Ronald Reagan, he was very successful as a president.  Part of his success was that he was good friends with the powerful Democratic Speaker of the House, Tip O’Neill.  When things got sticky, the two of them would often meet and hammer out details of a compromise, trust the other to uphold their end of the deal, and get the agreement through the legal process.

John Locke’s writings on liberty and the concept of a social contract, or Jean-Jacques Rousseau’s writings concerning the importance of a the social contract to control the baser instincts created by civilization, or Thomas Hobbes, whose views on a social compact and the inalienable rights of man also had great influence on John Locke, are all writings that had major influences on our founders, and all emphasized the need for society to be more than just self-interest.  There are others, as well, like Francis Bacon and Voltaire that also had strong influences on the principals of our founders.  Unfortunately, it seems that too few people today have read Leviathan, or The Second Treatise on Government, or The New Atlantis, or On Toleration.  None of them are huge, some of them are complex, but all of them discuss ideas and concepts related to what is western society and the place of the individual in a society at a level of depth that we should all at least consider as we participate in our world.

So why is any of this important for a blog about raising a child with a disability?  Simple, we help influence the world in which we live and the rules by which our children will grow up and live under in the future.  If we are not willing to speak for them and their interests, and the interests of other children, then we really are not doing our jobs as parents.  Look at education – we live in a world where high-stakes testing means everything, followed closely that every child will be ready to go to college, whether college fits that child or not.  One size fits all.  They are wonderful sound bites for accountability and success as an educational process, and fit the politicization of education, but it really does not fit reality.  Offering alternatives to high stakes testing, or offering options for job training and other skills or other paths to success for those students who don’t fit the norm or fall inside a neat political reality do not fit well into 30 second commercials and require deeper thought and discussion.  Too often, we seem to want to treat our children like widgets, where if they are not coming off the assembly line correctly, just change the molds and start stamping them out again.  The more we understand about how our society operates and the more we think about our place both as an individual and as a people in that society, the better we can serve our children. 

One final point on this general topic - there seems to be a devaluation of the concept of a liberal arts education.  I would think the opposite is true.  I was raised by my parents (both school principals, by the way) with the understanding that you got an education to learn.  Jobs came later.  You did not go to college to get a job but to prepare yourself for that world, and you did so by learning.  Their belief was that you did not limit yourself, but made yourself as well read and knowledgeable as possible.  That would make you employable and flexible as the society and its employment needs changed.  For me, that seems to be pretty true.  I finished college with a degree in Political Science and a minor in English.  I’ve worked for state government with a rehabilitation agency and a mental health agency.  I’ve worked in the private sector designing computerized billing systems and computerized phone networks for banks and major retail businesses, and now I do something I enjoy greatly, helping families of children who are deaf or blind in an educational setting.  Interesting, that liberal arts education certainly has served me well.  And I do think I have had the opportunity to make changes in my life that have allowed me to best help my child who has a disability, as well as others that are in a similar boat.

Anyway, I hope those of you who read my blog will understand I do have a wide perspective of what raising a child with a disability entails.  This may be on the outer edges of that perspective, but it is something I would ask you to all think about.  It is worth a few minutes.  And depending on your perspectives, maybe more.

Risk

You can get run over crossing the street in front of your house.  You might not make it home in your car today.  The reality is that the world is full of risk.  One of the great fallacies in life is that you can eliminate risk.  The truth is that risk is part of life every day.  The illusion of control and removal of risk is created by our level of comfort in either dealing with, accounting for, or accepting the levels of risk that occur in our lives on a daily basis.  However, when something new is introduced into the equation of everyday life, it is possible that suddenly, the comfortable pot of soup is stirred, and often, risk is reintroduced, and with it, an element of concern and possibly fear.

What introduces that element of risk back into our comfortable, well managed lives?  Several things can.  In my world, as in, possibly, many of yours, it was the introduction of a child with several disabilities.  Suddenly things that were manageable risks, unthought-of, are raised to the level of serious concern.  The desire to protect the child, to ensure that the child’s needs are met and that it has the opportunities to be safe, protected and live a good life reigns.  Another factor that can add that element of risk is putting yourself or your family in new situations that you are not familiar with, or that have an inherent element of risk that you are not familiar with.    As you can guess, those two particular factors do not often mix well.

So what do you do in trying to raise a child with a disability and still manage risk?  Do you hide the child away, say, ‘you can’t….’ until the child begins to believe that he or she really ‘can’t’?  In my mind, that is a dangerous concept for any child, and positively deadly for the future of a child with a disability.  I want that child believing that he or she ‘can’ in all circumstances.  If you believe you can, you will try.  You will be less likely to quit or give up.  You will continue to strive to succeed.  Believing ‘you can’t’ means the child will be more apt to not even bother, or just assume there is no use to trying.  Or, if the child does try, he or she is more willing to quit at the first hiccup in the process. In other words, you are setting that child up to fail.

As a parent, you must remember that the risk in most activities is manageable.  This is not an issue of the child succeeding or failing on every attempt in an activity, but in providing that margin of safety that lowers the risk to a level that is acceptable, no matter if the child is successful.  The idea is to give them the same opportunities as everyone else, while reducing the additional risks that disabilities create.

The trick to this is to be creative and to plan.  I’ve mentioned this before, and will mention it again now.  Do not assume that there is no way for your child to participate.  Spend time and do your homework.  Problem solve, and talk to people who know about the activity.  Here are two quick for instances:  When Ian and I went to Yellowstone, there were two activities that we wanted to do.  One was a back country horseback ride.  The other was whitewater rafting.  Now, Ian is willing to try any activity.  But before we go, I researched groups and called and talked to them when we were ready to schedule.  I explained about Ian’s disabilities and about his abilities.  In both cases (and honestly, in almost every case where we have done some adventure in his life), the professionals involved had some experience and had ideas and a willingness to make the activity work.  Those people want folks to experience the enjoyment they get.  They are enthusiastic and will try.  For instance, the whitewater rafting group told me that they had done many trips taking children and adults with disabilities.  As long as they know in advance, they can plan.  In Ian’s case, there was a safety boat in the water with us.  They had an extra staff member who Ian could use for stability while climbing down the steep, crumbly bank to the put in point on the Yellowstone River.  Ian (and everyone else) had enough flotation equipment on to float an elephant and helmets.  And for an exceptionally rough section of rapids, Ian sat in the middle of the raft where he was able to hold on to a rope.  As we moved into less challenging rapids, he shifted out to the side where he could paddle, but was directly in front of me where I could grab him if necessary.  He had a ball.  He also almost fell out on the last rapid.  I caught him by his legs and pulled him back in.  The safety boat was moving in towards us as well, just in case.    The big thing through all of it was Ian, who always believes he ‘can’.

In the case of the horseback trip, I told them that we use sign language and that due to Ian’s cerebral palsy, he has a tendency to be a bit strong with his heels.  The outfitter’s response was that they have had deaf groups ride and also work with the special needs community in that area, so they could make it work.  The big issue was simply selecting a horse with the temperament that would be ok with a strong heel and would be fine with hands waving around.  That trip went perfectly.  Ian enjoys riding, is comfortable around horses, and is actually pretty good at it anyway, so it was an easy fix to allow him to do.

My point here is that there is risk everywhere in life.  It is in the things we take for granted and the things we are unsure of.  We have a tendency to disregard the risk in the things we take for granted and to overemphasize it in the things we are unsure of.  Unfortunately, so many of the things that surround raising a child with disabilities lead us to be unsure.  Try to figure out that balance between risk and trying.  Figure out as a parent how to manage that risk in ways that will let your child try and do.  Don’t let the fear of risk eat you alive.  The last thing I want to see in any child is that he or she believes that he or she ‘can’t’.

Paging Dr. Grant, and Channeling John Wayne

In the early and mid-1800’s, people like Jim Bridger were exploring an area in what is now southern Montana and northern Wyoming.  The stories that Bridger and other explorers and trappers were telling about what they saw in of that part of the west were considered so fantastic as to be unbelievable.  It wasn’t until the  early 1870's when a group of trusted men authorized by the army commander in the west, Phil Sheridan (of Civil War fame), and nominally led by a General Washburn with an army security detail completed a survey into that region did people begin to understand that the amazing stories and fables coming out of this region were actually true.  That region was eventually turned into our nation’s first national park by President Ulysses Grant in 1872.  It is Yellowstone.

Ian and I are back from our trip to Yellowstone.   We’ve had a busy week.  We’ve had some adventures.  Ian is already plotting how we can go back.  I’m a willing accomplice to his plotting.  We had a wonderful and exhausting father and son week.  You see, the world of Yellowstone moves in a different way and with different rhythms.  You are busy when you are there, but you cannot live on a schedule.  There really are no appointments or places on the map you have to be.  Flying around from point to point there is just silly.  It took me my first trip to Yellowstone to realize this.  Instead, you just keep your eyes open, and things will happen.  The human world simply does not control this place.  On our first day, for instance, we came around a bend to find a red fox sitting in the sagebrush about 20 yards or so from us.  We stopped and watched, only to realize it was hunting.  Over the next 20 minutes it patiently stalked something and made the kill.  Its dinner was a ground squirrel.  It carried it back right past us on its way to its den. While it may sound gross to some, it was fascinating, and something that most people never really ever see – a predator doing what it does to survive in the wild.  Ian rated this as his number 2 most interesting sight during the trip.  Yet there were a number of cars that passed by on the road, hurrying from one place to the next in the park, not realizing the little drama being enacted right there.

One day we explored the virtue of patience.  On our way to Old Faithful (about 50 miles from where we were staying) we were caught in the mother of all bison jams.  Did you know that a bison herd travels at about 2 miles an hour?  We calculated this during the 4 miles we moved during 2 hours behind a herd of about 70 bison.  We also saw a van that tried to drive through the herd get head butted and dented.  You see, when you irritate a bison, their first response is to head butt something.  We decided that patience truly was a virtue.  We did eventually make it to Old Faithful, but again, learned that in the real world, manmade schedules do not apply.

We also watched, from a safe distance, a momma grizzly and her 2 cubs taking a nap on a hillside.  This may not sound like much, but both of us came to the conclusion that she made our Florida black bears look like house pets.  There is a whole order of difference between black bears and grizzly bears, and one that put new meaning into the concept of respect.  A ranger nearby told us she was one of the larger grizzlies in the park, easily pushing 600 or 650 pounds. We did keep in mind the warning my wife had continued to give both of us each day by text to ‘not become grizzly poo’.

Ian’s favorite sighting was mine as well.  It was the wolves.  We had seen wolves each day, but often at great distance.  Our last day we came around a bend in the road to see what is called a nursery herd of bison – it was mommas and newborn bison.  Not unusual this time of year.  But what was unusual was about 30 yards off the road were two wolves, scoping out the herd.  One black wolf and one grey wolf.  They were beautiful.  We stopped and watched. The wolves paid us no mind, but after scoping out the bison for about 20 minutes, decided that they were just too much trouble.  They then crossed the road in front of us, climbed the hill, and lay at the top of it, keeping their eyes on the herd. 

I cannot express the incredible feeling I get from seeing wolves.  I think Ian feels it too.  It is what my wife calls one of those ‘nearer my God to thee’ moments.  It is a feeling that everyone should have at some point. You can liken it, in some ways, to that moment in the movie “Jurassic Park”, when Dr. Grant has just seen the living brontosaurus for the first time, has to sit down, and when he looks up, sees all the different kinds of dinosaur herds moving across the valley in front of him.  It is that feeling of intense wonder that you cannot explain to someone who has not felt it for him or herself.  I do think that Ian gets that feeling, too.  And I am happy for it.  Everyone should experience that in their lives.

Now, about the channeling of John Wayne – what am I talking about?  Well, one thing that Ian and I did do was to take an all-day horseback trip up along the northern border to Yellowstone.  We were in the high backcountry of the Gallatin National Forest.  Just Ian, myself, and a guide and the horses for about 10 hours up into the mountains.  I’m guessing we got about 15 miles or so up into the mountains where there really weren’t any roads, and we saw no other people.  One of our instructions from our guide was if anything happened to him, to turn the horses west, move downhill, and we would eventually hit a trailhead or a ranch.  Under no circumstances were we to go east or south, as it might be 300 miles before we hit any kind of human habitation.  So how does John Wayne play into this?  Well, for this son of mine with cerebral palsy, once he got on his horse, it was like he had been born on a horse.  All those extraneous movements disappeared, and it was like he was home again.  Ian always has been a good rider, but I did not realize how good until we were going up a pathway on the side of a ridge (we were following tracks from a mountain lion, hoping to get a look – never did see him, though), and I see Ian leaning over the side of the horse scanning for more paw prints while keeping the horse on the path and moving between rocks and pine trees on a 20 degree incline.  The Duke would have been proud.  I know I was. 

We had a number of more adventures.  We won’t discuss falling out of the raft while whitewater rafting in class 3 and 4 rapids, for instance.  What I will tell you is that we made memories of a father and son adventure that mean so much to me as a father, and I think, mean a great deal to Ian as well.  I guess we did something right, because he has already started plotting how to get there again soon.   That is important to me, because as I get older, more and more I come to see that life really isn’t about schedules or money or who is winning, but it is about having those adventures, and those memories together.  In the long run, they mean far more and are a more important currency in life than pretty much anything else.