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.

Least Restrictive Environment

Least restrictive environment is one of those concepts under IDEA that can be incredibly confusing for a family.  The concept of least restrictive environment, or LRE, is one that basically says a child should be educated, as much as possible, with their peers who are not disabled.  Sounds simple, right?  Wrong. 

There are many factors that come into play in deciding LRE.  In a perfect world, and in a perfect situation, you would hope that every child could be educated in their home school, with their non-disabled peers, with supports flowing into the classroom that allows the child to access the curriculum to his or her maximum potential.  Unfortunately, the perfect world simply does not exist.  Now, there are situations in which a child with a disability can be educated in the home school, in the regular education classroom, with whatever necessary supports flowing into the class.  More often, there are other factors that impact the placement decision. 

In some situations, the child may simply not be able to function in the swirling world that can often be a regular education classroom.  Or, a child may be better served by being in a different school that has a center based program where the child can receive more intensive services.  There are, for instance, discussions that the center based, self-contained classroom can be a valid, LRE option for a student who is deaf or hard of hearing and uses sign language.  If that classroom presents full access to native language in a way that is not matched by the general regular education class, then this may actually be the LRE for that child.    Many districts use a hybrid approach, where a child is mainstreamed into a regular education classroom, but is then pulled out for specific, intensive, therapy or educational needs where needed services are provided.  Of course, the reverse situation may also be used – a child in a self-contained class leaves that class during specific times of the day to go to specific subject matter classes or therapies as needed. 

In other words, there are many options that can fit the description of least restrictive environments, based on the needs of the child and the resources available to a district.  One thing that needs to be clear is that LRE does not necessarily mean mainstreaming.  In all cases, however, LRE is determined by the IEP team at the IEP meeting.  Determination of LRE should be made on a child by child, and situation by situation environment.

One area that I will voice an opinion on is that we are hearing about more and more requests for one-on-one aids for a child.  Honestly, I am not in favor of them, and actually find this situation to be highly restrictive.  I have yet to see a one-on-one aid situation end positively for the child.  Too often the aid becomes the go-between for the child and his/her peers, or assumes the role of a school-based grandparent or parent, crossing that line of being a support for the child and becoming overly supportive of the child.  As the child becomes older, the aid often winds up being a human firewall, acting to limit normal social interactions because the child or the peers are not willing to have normal social discussions with an adult involved.

The bottom line is that I am not recommending any particular approach for a child’s least restrictive environment.  That is the decision of the IEP team.  I am simply trying to make it clear that each situation is different, and no one-size-fits-all approach can be taken. Everyone involved needs to be flexible and open to all considerations in making the determination of what is right for the child.

Choices

No man's error becomes his own Law; nor obliges him to persist in it.
                                                               - Thomas Hobbes

 

Life is full of choices.  Every day we make new ones.  We cannot avoid them.  To paraphrase the band Rush, even when you choose not to choose, you still have made a choice.  That is, simply, life.  Choices are, in many ways, what drove the music of the ancient spheres that controlled the world (as was once believed).  For those of us whose families reside in the sphere that houses the world of special needs, all too often those choices seem to be Hobbesian in nature. How many times have you been through that situation where no matter what choice is available, it seems to be fraught with danger and risk for you, for your family, and for your child?  It does happen way too often for many of us.

There have been many times in the life of my family – particularly when our son was little - that we have felt like a Minoan, about to be cast into the labyrinth underneath the palace, left in the dark to face the Minotaur with no way out.  So what do you do?  The bottom line is you just make the best choice you can, with the facts you have on hand, keep evaluating, and hoping the monster doesn’t show up and bite you in the backside. 

What about when you make a mistake?  And in time, you will make a mistake.  Well, if you have done your research, used the facts at hand, and made the best decision you can, well then you can move forward.  Will you kick yourself a bit?  Yes.  But, you can still live with yourself because you made the best decision you could with the information you had at the time you made the decision. 

Then, of course, you start that decision making process all over again, and hope you will get it right the next time.   One of the worst things you can do in all of this is to freeze up.  Don’t suddenly become so scared or timid that you don’t want to make decisions.  Indecision can often be your worst enemy, especially when you know something needs to happen, or change needs to occur.  Remember – by not making a choice you are, in reality, making a choice not to choose.

It does sound crazy, this process of making choices.  Truth be told, it is.  Often I feel like Sisyphus, condemned to pushing that boulder up the hill, only to watch it roll back down and have to start all over again through all eternity.  But, over time, you will begin to see the cumulative benefits of those choices.  The benefits to your family and your child accrue.  Over time, that will make a difference.    You too will learn and grow.  It is funny how your priorities will change with time and experience.  There was a time when my most important driver was making money.  That was a long time ago.  Now I see so many other things that are more important.  Don’t get me wrong, income is important, but does that trump the needs of the family or of the spouse or of the child?  Is it necessary to have all the money in the world, or to be able to do things with my family?  Once again, all are choices that one has to make when evaluating every situation.  How you prioritize is up to you.  Just remember to be willing to keep evaluating every situation and make the best choices you can.

Isolation

What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from.
 - T.S. Elliot

There is no greater hell than to be a prisoner of fear.
 - Ben Jonson

 
  

Whenever I do a particular workshop for families who have children with disabilities, there a specific section of that workshop where we talk about  social issues and how they impact those families.  I always ask these families how many of them find that since their child or children who have a disability was born, that their social world and number of friends have shrunk.  The answer that I get back from pretty much every group over these many workshops has been very consistent.  The answer is that the vast majority of these adults find that they lose friends and their social world often shrinks considerably.  Quite a number of those parents also mention the feeling of social isolation.

The first thing any parent of a child with a disability in this kind of situation needs to understand is that they are really not that unique.  Their situation is not at all uncommon.  So why does it happen? 

While I do not have any hard evidence that I can point to, I can point to a number of conclusions based on personal and anecdotal experience, and I believe that these conclusions will prove to be accurate if any serious, hard research is ever conducted on this topic.   

First, part of it is human nature.  People often distance themselves from stressful, emotional situations.  The truth is (and any parent who tells you differently is not being honest) that having a child with a disability is very stressful and emotional.  Friends and even family often are uncomfortable with those situations or they do not want to hurt their friends, and pull back.  Over time, the friendships and sometimes, familial relationships stretch, weaken, and dwindle. 

Second, parents, especially of school age children, often find that their friends are the parents of the friends of their children.  Usually this people are nearby families in the local school.  Often, for our children with disabilities, they are in a center based program that may not be local, or maybe a self-contained program with few children, or, if mainstreamed, simply may not have strong friendships with any of the children they see during the day.  So what happens?  Parents aren’t exposed to those other adults, reducing their social circles.   It also can often be hard to develop friendships with other parents when they do not have many of the same experiences that those of us with children with special needs do. 

There really isn’t a right or wrong here, this is a ‘just is’.  It is something that we need to be aware of, and if necessary, work hard to overcome, because isolation is not good for anyone.  Personally, I have never had great numbers of close ‘friends’, but a small coterie of people who I trust deeply and call friend.  I have lots of acquaintances, but few that I let into the most interesting parts of my life.  My wife has far more friends, but hers seem to come and go more over the years.  I think a lot of it has to do with definitions of what the word ‘friend’ means and maybe our individual makeups. 

So, the bottom line is that isolation is a concern.  People are social animals. At some basic, and I think, primal, level we crave interaction with others.  We need our tribe, so to speak.  Be aware of this.  Work against it, but realize as well that if you feel isolated, you are not unique or weird.  Do not let that feeling control who you are.  You do have the ability to work through it.   What I say about raising a child with a disability also applies to parents.  Get out and experience the world.

Retreating to the Man Cave

There are times that I need to go the man cave and hide for an hour or two.  I promise you I am not the only man out there who does this.  In truth, I would expect that there are far more of us dads who have their own personal version of the man cave than do not.  The man cave does not need to be an actual place.  It is, in reality, more a state of mind. 

The man cave is a place where many of us go that lets us clear the head, remove some of the stresses of life for a period of time and re-balance our priorities.  It is also a place that if we are allowed to visit every so often, allows us to be a better father and a better husband.  You see, many of us we are brought up to believe that it is our responsibility to take care of, provide for, and protect the family.  It is our job, and our job alone, to do those things.  As much as we may love our spouse and as much of a partnership our relationship is, there will always be that piece in each man that says that it is his job alone to lead the family successfully through the shoals and vicissitudes of life and into a safe harbor.  No matter how rational or understanding a guy is, this belief has been ingrained in us by our fathers and grandfathers, like it was by their fathers before them.  Unfortunately, this is very stressful.  Much of it is self-made stress, but it is still real and to some degree, debilitating.  It impacts reason and impacts decision-making.  It impacts relationships and how we deal with those around us. Often, it can be compounded by stresses that don’t go away, such as worrying about raising a child with a disability, and maybe not being able to figure a way to ‘fix’ all the problems and issues that come about.   And, if you are a woman, please understand that for a man, the impact of the stress and the resulting behaviors can be something uniquely male. 

Please understand, also, I know and accept (as all men do) that there can be just as much stress on the woman in the family.  Truth is, you just seem to deal with those stresses better when it comes to raising a family.  I know I am constantly amazed, even after 25 years of marriage and 20 years of raising a child with a disability, by my wife’s ability to push through frustrating issues and concerns and stresses while still maintaining an incredible level of calmness and control.

The retreat to the man cave is often our way of resetting the mechanism.  The cave allows us to take some time in our heads to think through or reorder what is happening.  We can prioritize and take that breath, and get our act together without interruption to break up that process.  Take my word for it, that little bit of time matters.  Maybe it is kind of like going to your ‘happy place’ for a while.  All I know is when I need that time, my wife has been great about letting me take it.  I find that I usually come out of my cave as a better person.  I am happier, calmer, less stressed, more able and willing to discuss things, and overall, feeling better about myself and more willing to take on the normal challenges of that occur in any family.  So, ladies, just a quick thought.  When you see your husband getting that urge to go to the man cave (either mentally or physically), let him.  You just might be surprised how much it can make dad more a part of things, and may help the rest of the family stop needing to feel like they are walking on eggshells, or living next to Mount St. Helens.

Summer is Coming

Summer is coming, and with it, time off from school and maybe time off from work.   What are you going to do with that time?  If you are a parent, and especially if you are the parent of a child with a disability, I hope you will take them out into the world and do things.   Getting out does not necessarily mean going across the world.  It can mean going to go the local park or the county fair or a local historical site or the zoo or a museum or even the beach.  The bottom line is that I hope you are making plans to take your child out to experience the world. 

This is a constant theme for me, and a pretty strongly held belief.  That is, if you want to truly educate your child and want them to make connections to the things they learn in school, then they need to get out and see and do things, to touch things and make contact with them.  Not only will you be helping them make those links between what they read or talk about in school, but you will be helping your child develop memories and links to you as a parent and to the family.  You will also be helping to shape some of your child’s interests and helping them to develop that sense of curiosity and wonder that is critical to learning.    Paraphrasing the author Antoine St. Exupery, who wrote both The Little Prince and Wind, Sand, and Stars, you don’t teach someone to build a boat by issuing directions on building the boat, but you teach them to build the boat by helping them to learn to love the sea so that they will want to learn how to build the boat to go out on the sea.  In other words, help someone to develop a deep interest in something, and they will do what they can to find a way explore that interest. 

In our family, with our son, we made a decision long ago to do whatever we could to expose him to as much of the world has we could.  To let him not just read about something or see it on TV, but to try and see it in person and to touch it when he could.  I know this helped him in school.  Too many times over the years, teachers would tell us how wonderful it was that Ian could discuss, often in detail, places they were talking about in class or things he had seen or done.  Those experiences helped to form his interests, and have helped to enhance his education.  They have helped him be successful in school.  Let’s be honest, there is a difference between reading about something and actually experiencing it for yourself. 

So, help your child learn, help your child want to learn, and help your child’s education.  Take them out into the world and let them experience things.  It will also allow you and your family to build links and memories as well.  It is worthwhile.