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.

Learning

I understand that the economy is tight, and I understand that stress levels for all of us are high, and I know that those things, in combination with all the other stresses in life can be somewhat paralyzing, but if you are the parent of a child with special needs, it is time to move, not freeze up.  I also understand that for many parents, the end of the school year is seen as a time to take a breath again, to try and relax a little from all the school-year needs and concerns.  As the school year ends, so many of us parents love the thought of pulling back into the family shell, and hiding out for a bit of time and taking a breath.

But, no matter how much we want to crawl into our caves and hide, we need to keep learning and educating ourselves as parents.  For those of you who follow this blog, you know I harp on this theme.  The truth is that knowledge is power.  Knowledge allows you as a parent to operate on a level playing field with the professionals and allows you to understand the rules by which the special education game is played.  How do you expect to be successful if you don’t have the information you need to play the game?  One part of this educational process that every parent should figure out a way to take part in is attending conferences for parents.  There are quite a few of them, from smaller, ½ day, local events to webinars to day-long regional conferences to multi-day statewide conferences.  They are all places where a parent can learn, and can make connections with other parents and professionals.  They are places where parents can gain knowledge and power.

One conference is coming up here in Florida that if you are a parent, you should seriously be looking at attending.  That is the Family Café.  This conference is held every year in June in Orlando, and has attendance of between eight thousand and ten thousand people.  Two and ½ days of workshops, dozens of activities, and networking opportunities for families abound.  I have been going for years.  Honestly, the first time, as a parent, it was a little overwhelming, but I quickly discovered how welcoming the conference was and how much information was available.  Now, I go every year and present a number of workshops.  I get to meet families and professionals – some new, some that I see only sporadically and some I work with all the time.  Also, from the parent side, I get the chance to look around and remember that my family is not alone and not really different.  We are much like so many of the other families that are out there.  That is good to know, and something that is good to be reminded of every so often.

Take a look at Family Café (just Google it – you will find the conference) and the dozens of other conferences and training opportunities available to families.  They can help you with making your way through the special education world.  They can also help you gain knowledge.  Remember, knowledge is important because knowledge is power.

The Return of Farley Mowat, or Mom is NOT Happy

I’m counting the days.  They are coming quickly now.    It started as a flash of an idea about 4 months ago and has now grown into an actual event.  The reservations are now in place, the additional gear bought, and a rough schedule made.  You see, I learned a long time ago that when it is time for an adventure, schedules and agendas are made to change.  Sometimes you just go with it, and the most interesting things can happen.  My coworkers are probably reading this now and trying to figure out if I’ve slipped a gear, based on how scheduled I am at work.  But, when I’m travelling, the schedule (other than things like being on an airplane at a particular time) is just a rough guide.  The time is coming soon.   There was, however, one very early change that has me very surprised, very happy, and has one Mom a little upset.

I am going to take a week off this spring and go back to a place where I actually find a true sense of peace.  I don’t find that feeling in many places in the world.  I can think of two.  I’m going back to Yellowstone.  This year, to my surprise and happiness, I have a companion coming with me.  Ian’s classes will be out in April, and he pointed out that we had not had a father and son trip since Boy Scouts.  So, Ian is coming with me.   Yes, Mom is not happy. 

Mom was interested in going, but Ian asked her to please let just us go.  She understands, but I think feels a touch left out.  I get that.  Even so, she wants us to go have a good time.  Without her blessing, the trip wouldn’t be happening.  Her big concern, I think, and one she has voiced to me, is that now she has to worry about 2 of us doing something ‘stupid’ and finishing our days as grizzly bear poo.  As she likes to point out, it isn’t a theme park and the critters are not animatronic.  Both Ian and I remind her that we both have a reasonable amount of the male version of common sense, though somehow I think she equates that to tying pork chops to our belts and running through the underbrush to try and get the bears closer for a picture.

Ian and I have talked about what we want to do.  We both want to see if we can arrange a horseback trip up into the Blacktail Plateau.  Ian wants to get back to Old Faithful and see the southern end of the park, which we did not get to when he was there before, but I was able to see last year when I was there.  And of course, we want to see the wildlife.  For me, I want to find the wolves and the grizzlies.  In particular, I want to try and find the Canyon Pack.  They were the first wolves we ever saw.  I don’t know if I will ever lose the memory of the beautiful white-furred alpha female of that pack as she moved past us at a distance of about 6 feet.  Maybe we will get lucky again.  However, to see wolves usually means getting up really early to get out to the Lamar or Hayden Valleys.  Like 4:30 AM early.  But the big thing is that Ian is ok with that.  Mind you, his idea of early rising is usually getting up in time for lunch when he has free time.

The other thing I’m excited about is something that I realized as the two of us have planned this trip.  It may be a father-son trip, but it is also something else.  It is a trip being taken by two adults.  Ian is contributing to the trip and he is also been an equal partner in the decision making, from deciding airline flights to picking the motel.  For those interested, Super 8 won out (not a lot of choices in Gardiner, MT) – I had a different, mom and pop motel targeted, but Ian made a cogent argument for inside hallways, indoor pool, and the fact the Super 8 is right across the street from the town grocery store, should we be trapped at the hotel by a freak, late season blizzard.

So, let’s see how this trip goes.  I’m guessing Ian and I will see our relationship continue to evolve.  That evolution is necessary and it is a good thing.  It is natural.  Ian isn’t a little boy anymore, no matter how hard it still is for me to let go of some of that.  I’m guessing this trip will help me continue to grow with that idea as well. For him, the process is slow, and not fast enough.  For me it is sometimes too fast, and leaves me feeling like I’m clutching at air, trying to find something to hold on to so it all doesn’t fall away.  But the change is something I need to continue to do, and these kinds of touch points in life are the things that seem to help me do that.  I often get the feeling that Ian is just humoring me, and that he understands a bit of the conflict that I always go through in letting my no longer little child really be the adult he has become and is still becoming.

Oh, and if any of you have actually read far enough, and are still wondering who Farley Mowat is, then here is your answer:  He is one of Canada’s most read authors, writing a number of books about the natural world and, in 1963 wrote a book that I read as a middle school student.  It was a book that kind of stuck in the back of my mind for a long time, but in the last couple of years, has come to mind again due to the discovery of some interests I have.  The book I’m referring to is titled, Never Cry Wolf.  

Here Be Dragons

On old, and I mean very old, maps, you will see some version of Europe and those sections of Asia and Africa that are contiguous to it, but certainly not those parts of those continents that are farthest from Europe.  No Americas are present.  At the edges, the maps would drift off into an emptiness of the unknown.  Further, the Mediterranean would be considered the center of the world – often centering on Italy, or specifically, Rome.   

I was lucky enough a few years ago to get to see a room in the Vatican that was filled wall to wall with globes and old maps.  You could not enter the room, as it was too crowded with old globes and map cases, but from the doorway, you could get a pretty good look at a number of the maps and globes.  The room sat right off a very large, dramatic hallway that was completely covered in a map painted on the walls and ceiling as if you were standing in Rome looking outward in every direction on the rest of the known world as it existed about 1600 A.D. 

On one of these old maps, in that hazy, empty area on the fringe, was written in a version of old English, “Here be dragons.”   While not overly common, such phrases were used.  Such phrases meant, for all intents and purposes, here is the unknown, and with it, dangers and adventures that lie within the unknown.

If you are the parent of a child with special needs, you have probably figured this out already.  If you are new to the world of special needs parenting, then pay attention because if you are on that map, you are standing in the hazy section, labeled ‘here be dragons’. 

One thing all of us know as a parent of a child with special needs is that there really isn’t a road map or a GPS system to allow us to find our way to the ultimate destination.  You are in a brave new world, with exciting possibilities and many dangers, all of which you have to navigate.  You can go out and read the books, and you can talk to other parents and learn from them, but the truth is, everywhere you go in your journey with your child will be virgin territory, unseen by other men.  No child is alike, and the impact of a specific disability, while somewhat similar in many children, will always be unique to your child and your family.  You have entered, in the words of a far more contemporary author, a ‘Brave New World’. 

So, the question you have to ask yourself, parents, is how do you respond to this undiscovered country?  How do you respond to all the challenges and threats and wonderful things that you will find in your unmapped journey through this strange land?  Will you freeze, or allow yourself to lose hope and collapse?  Or, will you stand up to the challenge and bring yourself and your child through the wilderness?  I hope the latter of these choices will be yours.   

Maybe, you will find yourself, much like me, reading books and watching movies that follow the themes of the great quest.  Everything from the Arthurian legends to the Lord of the Rings trilogy, to the ‘Eaters of the Dead’ (a retelling of Beowulf – you might know the movie as the ‘13^th Warrior’) to the Indiana Jones sagas to many other similar stories.  What do they have in common?  Well, they all are stories about overcoming odds, and persevering through great adversity to reach your goal.  They are important to me in that they help me continue to keep fighting forward.  They are a sort of literary kick in the pants that I sometimes need. 

So, anyway, should you make this second choice, the choice of hope and perseverance, you will be making a choice that gives your family and your child the opportunity to succeed.  Hopefully you will find the route for your family. Keep persevering; no matter how bad things may look, do not allow yourself or your family to quit.  Remember, if you do not give up and keep moving forward, you can weather the storms and challenges along the way.  You see, those who freeze and collapse have no chance of success.  On the other hand, while the road can be hard, those who keep moving and stand up to the challenges will always have a path into the future.  And with that path comes the possibility of success for you and your child.