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.

Come Home With Your Shield

Go tell the Spartans, you who passeth by, That here, obedient to their laws, we lie. 

                                                            -Simonides of Ceos;

epitaph for the Spartan Dead at Thermopylae

It is said that in ancient Sparta, when the men went to war, their wives sent them off by telling them, “to come home with your shield, or on it.”  In other words, come home victorious or come home dead.  When Greek allies asked for assistance from Sparta in war, it was not unusual for Sparta to send one battle commander.  When one ally supposedly questioned the value of sending only one Spartan warrior, the Spartan supposedly replied that Sparta had sent more soldiers than the ally had.  The meaning was that Sparta trained their men as soldiers as a career.  The other city states of Greece, the men were soldiers when needed, but not by vocation.  The Spartans were renowned for their bravery and their willingness to fight against all odds, and to resist surrender.  Whenever they felt they were threatened, they were ready to go to war.

Not too long ago I met a family that reminded me of the Spartans.  As a matter of fact, I meet a fair number of families who would have been right at home with some of these concepts from ancient Sparta (we won’t talk about the other things the Spartans did – particularly how the dealt with children who were disabled).  My point is that when it comes to defending a child, especially one with a disability, and especially if they believe that child is somehow being wronged, these parents will fight against all odds and all evidence they may disagree with, for what they believe their child needs.

I truly and fully understand where these parents are coming from, being the parent of a child with special needs myself.  Too often, they do not have the right information, or do not have all the information, or have developed strong beliefs and will not listen to that which goes against their beliefs.  I respect this obstinacy.  They are doing what they believe is in the best interest of their child.  What else should a parent do?

So what should a teacher or other staff person do in these situations, especially if it is one where the parents may not, in the opinion of the staff and the face of all information and evidence available, be making a wise set of educational choices for their child?  First, you have to be honest with the parents with your beliefs and why.  That is your professional duty to the family and to the child.  But there is more that you need to do. 

Try and reconnect with the family.  Try and help them understand that you are not their enemy.  Try and help them understand you also want to help their child succeed.  Try and help them understand that while you may disagree, you still respect their support for their child, and you would hope they would respect you for giving your honest, professional assessment and recommendations on how to help their child, even if they disagree with you.  Too often the emotion of the situation for a family (and sometimes for a professional) can turn what is an honest disagreement about educational needs into a personal animosity.  If you can keep the situation as an honest disagreement – and this is very, very hard to do with all the emotion involved in special education – you have the opportunity, at a minimum, to keep lines of communication open.  As long as those lines of communication stay open, the possibility of eventual positive resolution, no matter how faint they may be now, still exist.  Try and do what you can. 

I also understand, from the professional’s viewpoint, how frustrating these situations can be.  Remember, no matter how much you may care about that child, it will not touch the feelings that the parents deal with 24 hours a day, seven days a week, 365 days a year.  Those feelings are hard to put aside or control, especially when advice goes against the parent’s deepest desires.  Keep alive the flame of opportunity.  Keep alive the hope that against all the adversity, the lines of communication can be kept open between district and family, and will one day be able to bear fruit for that child.  That often becomes your task, as a teacher and as a professional.

The Ties that Bind: IDEA, IEPs, and Paperwork

Three rings for the Elven-kings under the sky,
Seven for the Dwarf-lords in their halls of stone,
Nine for Mortal Men doomed to die,
One for the Dark Lord on his dark throne
In the Land of Mordor where the Shadows lie.
One Ring to rule them all, One Ring to find them,
One Ring to bring them all and in the darkness bind them
In the Land of Mordor where the Shadows lie.

                                                - J. R. R. Tolkien, The Fellowship of the Ring, 1954

One of the most boring, yet necessary things that a parent or professional must deal with in special education is paperwork.  Who enjoys going through page after page of forms, check boxes, notes, and documentation?  No one I know.  Yet the whole of the IEP process, and all of the guidance that comes out of IDEA is wrapped and infused with paperwork.  The truth is there is nothing you can do about it.  It is endemic, and it is necessary.

Throughout the whole of special education, IDEA, and the IEP, one overarching requirement flows through all their processes.  That is paperwork.  Why?  The answer is simple.  There is an unwritten rule that appears nowhere in the law, but sits over all these processes and binds them all together.  That rule is; if it isn’t written down, it did not happen.  This paperwork, you see, is the ring that binds the whole process together.

Fortunately, unlike the One Ring in the Lord of the Rings trilogy by Tolkien, there is no mountain of fire to cast it all into, even though we might like to do so.  This paperwork, while time consuming, boring, and sometimes frustrating, is not evil, but an important necessity.  This paperwork does bind everything together, and binds things together in ways that will benefit the child to which it is tied.  You see, that paperwork holds immense power to those who know how to wield it, to help make those special education services effective and successful for that child. 

Remember, if it isn’t written down, it did not happen.  What is documented in the IEP, what is written down, is very powerful.  What all participants in the process must understand is that the IEP is the guiding document for all the educational and functional services a child will receive from the school district. The IEP is, for all intents, a functional legal document.  In a dispute, what is written here will have a major impact on that dispute’s resolution.  If the IEP is well-written and clear, all members of the IEP team, from parents to district personnel will know and understand how the special education puzzle should be fit together for this particular child.  However, if poorly written, or if the IEP does not accurately document information about the child or the services to be provided, or is vague, then it can open doors to confusion, misunderstanding and conflict. 

Just taking that little bit of extra time to ensure you have a clear understanding and written description of the child’s disability or disabilities, the current level of performance, educational needs and the supports that go into providing those needs, measurable goals, how progress will be measured, and a host of other elements will go a long way to making the IEP process and IDEA a success for that child, the parents, and for the district. 

Outside of the IEP, good documentation is critical as well.  Are there pieces of information from doctors or others outside the existing school district?  If so, remember that the district cannot consider what can often be highly technical information on just an assurance that it occurred.  Instead, documentation is needed from those outside entities.  Something that can go into the files and be assessed equally by all participants and retained for long-term evaluation over the years a child will be in the Exceptional Student Education and will be covered by IDEA is essential to keep the processes moving forward smoothly.

The truth is that this topic is one that can be discussed for hours, and it is a topic that any person knowledgeable about IDEA and IEPs understands is essential to make the process work effectively.  Paperwork is the fuel that feeds the process and also what binds it together.

Remember, if it isn’t written down, it did not happen.  Also, take that extra time to make sure that information is written clearly, so all parties understand what the written words mean and how they are being applied to the IEP process.  Keep your records, organize them. You would be surprised how often a misunderstanding 6 months down the road after an IEP can be cleared up simply by referring to well organized and documented paperwork.    The bottom line is that it is important and a little extra time now may save a lot of time and headache later.

You see, if you make sure things are written down, you will have your ring of power.  Except there will be 3 of them, and they will be sandwiched inside a binder….

Continuity

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Do Not Go Gentle Into That Good Night

-          Dylan Thomas

The Welsh poet Dylan Thomas wrote the villanelle ‘Do Not Go Gentle Into That Good Night’ about the impending death of his father, encouraging his father to fight against death to the end.  The poem seems to have been more about Thomas’ own sense of impending loss and his discomfort with death than anything else.  It is a wonderful poem, an expression of sadness and grief, and one of those events that all of us will someday pass through. 

I am not sure I agree with all of what Thomas is saying, but I do understand his feelings, as the topic is close to my mind these days.

You see, we had to make an early, fast trip to Virginia to see my father, as he has had a stroke.  This wasn’t the first or the second, or even the third, and they are starting to have an impact on him.  Much like a thief in the night, they are starting to steal pieces of the man that I have known for 49 years as my father.   I think we all see that this is the beginning of a decline.  How steep the slope is, none of us really know.  As a doctor said, it could be 10 days or 10 years.  There is no way to know this path, but we all understand the destination.  What is important is that he is happy, and he knows how his family feels about him. 

Change happens.  So how do you deal with that change?  It is interesting to watch.  I can say that even in these kinds of circumstances I continue to find reasons to be proud of our son, Ian.  While he will always be my child, I continue to see his growth as a person.  Ian knows what is going on with his grandfather.  You could see that he could see on his face when we got to the hospital room that he understands the seriousness of the situation.  Ian knows.  While we were there, I tried to split time helping my mother with issues around their house and spending time with my father.  Ian, however, spent most of the time – hours and hours in fact - sitting with his grandfather, holding his hand, and just being with him.  That was important to my father, to my mother, to Ian, to my wife, and to me.  That simple act of time and patience mattered.  It gave my father something he wants – that of contact with his family.

This game will play itself out in its own time.  We will accept what comes.  But, in all the many ways I am proud of my son, whether it be how hard he works, or his grades or whatever, I am proudest that I am able to see a man who truly cares for others, and wants to help them.  At his core, he is a good person.  That is one of those things that I was brought up with.  The importance of being a good person above all else was emphasized to me as I grew up.  I am proud of him, and I know that my father sees this, and is proud of his grandson as well.  That means so much.  So very, very much….

Are You Henry II?

On July 6, 1189, Henry II of England, possibly the greatest of all the English kings, died in Chinon, France.  At the age of 56, after 35 years as the ruler of the Angevin Empire, an empire that stretched from Scotland and Ireland south to the Mediterranean Sea, he died exhausted, ill, and alone, deserted by his family and friends and finally defeated by his son Richard Coeur De Leon (we know him as the Lionheart) and the Phillip II of France.  His final words were, “Shame, shame on a conquered king”.

Henry, you see, had a particular trait that helped him create and control his empire, but also planted the seeds of revolt with his sons and his wife, Eleanor of Aquitaine.  Henry was, without putting too fine a point on it, a control freak.  All historical indication are that he cared for his sons, awarding them lands and titles, but was never able to truly let them begin rule those fiefdoms.  Over time, his inability to adapt to the growth of his children, to recognize the abilities of his children as adults, and to begin to let them have responsibilities equal to their stations in life at that time in their own rights helped lead to their rebellion. 

So, in many ways, Henry may have won the daily double as the ultimate Helicopter Parent of his age and professionally, as one of those folks who had a hard time adapting with change.  His responses with his family were often the same as they were with his vassal lords, exert his authority and strength.  As his situation changed vis-à-vis his children, he was unable to adapt to those changes.

So many of us who are parents have a hard time letting go and stop being helicopters for our children.  Too often we are struggling to protect them and don’t see the extent of their abilities.  We don’t give them the opportunities to become independent.  Even though it is so critical to our children’s long-term well being, and we know it, it is still so hard to hazard the risks that are entailed with that independence.  In many ways, there is a bit of Henry in all of us who parent children with special needs.  Like he did, we all see the risks of allowing our children to be independent.  Granted, the risks for Henry and the risks for us are far different in scale, but they are just as important to us as parents. 

I’m fully willing to admit that I continually fight my urges to helicopter.  It may be one of, if not the hardest thing I’ve done.  I’m sure I am not the only one out there who deals with this issue.  But, as parents, deal with these issues we must.  Don’t be Henry and wind up with a palace revolt on your hands….

Professionally, change happens.  Henry had a hard time with this and did not adapt well.  Eventually, his business plan for holding his empire failed him.  This is a bit of a lesson to the wise.  For those of us in education, the world is constantly changing.  The paradigms that educators live under are undergoing change at all levels.  Everything from funding to work rules to what makes a child or school or a teacher successful is in transition.  Stress levels are high.  Work on bringing those stress levels down.  Do the things you can to create positive change when you can (and there are many ways, at many levels, from your influence on your students up to being involved politically advocating for your beliefs in educational policy), remember why you got into education in the first place, accept the things that you cannot change in the short-term (this does not mean you cannot work for change in the long-term), and try not to lose sleep over change.  Change does happen. We all must adapt because the truth is that the only constant in life is change.  Sometimes it is good, other times bad, but change will continue to happen.  Don’t fall into the trap Henry did.  Adapt, and find ways to prevent the stressors from driving you nuts.

So, parents and professionals, be flexible and adaptable.  What else can we do but keep trying to make the best decisions possible and to move forward?  Truthfully, not much….  But as we stay open to change and to possibility, we all allow ourselves to make the best decisions possible at that time.  Will they all be right?  Probably we will screw up some of those decisions, because we are human and will make mistakes.  Remember, though, even when you do screw up, either as a parent or a professional, you have the ability to start again from that point and step forward, no matter what happened in your past.  Just remember to stay flexible and adapt. 

Two Steps Forward, One Step Back

Courage is resistance to fear, mastery of fear, not absence of fear - Mark Twain

Two steps forward, one step back; two steps forward, one step back; two steps forward, one step back.  That seems to be our world since the day our son, Ian was born.  You struggle ahead two steps, then have something happen that drags you backward.  Medical issues, school issues, social issues, whatever; it does not matter because the pattern is in place.  Two steps forward, one step back. 

The big thing about this never-ending process is that it seems to run two steps forward to only one step back.  I guess that is progress.  For those of you who don’t know Ian, he is now 20 (From my perspective that is scary enough – what happened to the time?).  He is deaf, and has coreoathetoid cerebral palsy.  He was a preemie, and had to overcome a lot of issues.  From his first day, two steps forward, one step back.  That perseverance has taught him (and us) many things.  He does not quit.  He keeps plugging away.  He is an Eagle Scout.  He graduated high school with a standard diploma and is now in his 2^nd year at the local community college in their computer science program.  He wasn’t supposed to walk, but ran track in high school.  Two steps forward, one step back….

Oh, and he has had his driver’s license for about 3 years now and, according to reports from friends and spies I have across town, is actually a pretty good driver.  Here is where we come to my current two steps forward and one step back. 

I am a reforming helicopter parent.  I work hard at NOT hovering.  I work hard at giving space and independence and freedom.  Staying away from chocolate is easier for me that fighting the urge to hover. Right now my wife is ready to send me into a helicopter parent 12-step program.  You see, while Ian is rolling ahead, I just had a ‘one step back’ week.

Ian was in a ‘minor’ car accident last week.  Nothing major.  No ambulances, no big disasters, but one of those fender-benders that you see all the time on the roads.  He is fine.  His 1991 Pontiac is having some bumper work done and a headlight replaced. 

Dad, on the other hand, is on the verge of a full, irrational, structural collapse.  You see, I have regressed about 6 to 8 months mentally in my comfort levels concerning his independence.  This is my step back.

You see, tomorrow he will hit the road again – by himself – to college for his classes.  And I am on the verge of an existential meltdown of global proportions with worry.  I am fighting the dark side of overprotectedness.  I keep waiting to see some guy in a black helmet and cape with James Earl Jones’ voice in my dreams go “Mark, I am your father” and urging me to join him on the dark side.

My rational side keeps telling me that I know he is a good driver.  It keeps telling me (truthfully) that the accident was one of those ‘normal’ things. It also keeps telling me that with all freedom and all independence, and all of life there is risk.  This is part of it.

My irrational side has come up with two solutions.  One is to lock Ian in his room (he has a shower and bath attached to his bedroom) and never let him out.  Cut a hole in the door and slide his food through it to him.  That way he will be safe forever.    The other is to move the family to a small town I know of that has about 500 people living in it in Montana, where 2 cars at the town stoplight is a traffic jam, and live there away from many of the current threats to safety that exist in my sphere of the world.  I can deal with wildlife out there – they don’t drive cars.

Neither of these solutions is particularly rational, and neither of them does Ian any good or, in the long run, do any of us any good.  My wife, being the calm, practical one, just looks at me and shakes her head when I bring these ideas up. 

So what will I do?  I guess tomorrow I will swallow my butterflies, watch the clock intently, wait for the text that tells me Ian has arrived at school safely, swallow back any sense of rising panic, and lose a little bit more of the few hairs I have left.   I will do the rational thing, and the hard thing, and allow him his freedom and his independence.  All I know is that it was so much easier when I was going through these kinds of things with my dad.  I guess so much of it is what side of the prism you are looking through. Oh, how I wish that the easy thing and the right thing were one and the same.  Isn’t it odd how so often in life the right decision winds up being the hard decision?

So tomorrow, as Ian moves on with his life and his independence, I’ll try and take back one of those steps, and start getting ready to take that second step back into the future.  Two steps forward, one step back.  Two steps forward, one step back.  Two steps forward, one step back….

In the Land of Teachers

Education is the ability to listen to almost anything without losing your temper or your self-confidence.    - Robert Frost

The hardest issues I have to work with are those that involve school-parent conflicts.  Too often, these turn out to be driven by misunderstanding, strong emotions, poor communications, and the interaction between different cultures – that of the educational world, and that of the world of special needs families. 

There are times when the disagreements are based on valid programmatic or other concerns.  Those conflicts, if well managed by both sides, can often be beneficial in that they provide a healthy discourse of ideas and concerns, and both sides are open to considering and evaluating the ideas of all parties.  In these cases, a positive result can and often does come out of the disagreement and the parties involved can continue to work together. 

Unfortunately, too often, the optimal process does not happen.  Something short circuits this process, and things become personal, feelings get hurt, and sometimes grudges get started, and the problem-solving process falls apart.  Obviously, this is not good.  When I have run into these situations, usually no party is completely blameless.  One side may be more blameless than the other, but usually, there are enough issues and missed opportunities to spread around, some innocuous and some not. 

Maybe if we take a quick look at both sides, some of you who are in these situations may understand your opposite a little better, and in doing so, may help to improve or prevent some of these conflicts…. So, let’s start by taking a look at the land of teachers and what parents need to understand about their world.

First and foremost, teachers do not get into teaching because they want to get rich.  Almost every teacher I know of has gone into education because they truly enjoy working with children.  And those that go into special education seem to have an additional calling to try and help those who often have the greatest needs.  That should be something that all parents take to heart and should remember.  The kids are NOT widgets on an assembly line, but important individuals that a teacher is trying to figure out how to best educate.

Second, teachers, no matter how good and no matter how caring, are constrained by the nature of education in what they can do.  Remember, teachers are there to educate your child.  Much of what they can and cannot do is dictated by federal law, state statute, state policy, and local policies and procedures.  These constraints are there for many reasons – to ensure consistency, to protect your child, to protect the teacher, to make sure your child is getting an appropriate education, etc.  But, schools cannot be everything.  They are not health care facilities or babysitting services or substitute parents.  They exist to do what they can to educate your child.  Teachers have to live in this world, and no matter how good a teacher is, must live by the rules of that world.

Third, teachers get frustrated, too.  Why?  They get frustrated for many reasons.  For many, the workload has grown exponentially, taking time away from the reason they went into teaching – that of working with children.  While funding for education continues to be reduced, paradoxically, regulations, mandates, and reporting requirements have been heaped upon teachers.  Much of this is not coming from your local district professionals, but from state and federal legislation – from many people who really have little to no knowledge of what it actually means to be a teacher.  Often, these mandates, which are meant to help, actually have a negative impact by taking even more time away from direct education, helping to drive frustration

Also, as already noted, children are not widgets.  Each child is unique (note – that is why the ‘I’ in IEP stands for Individualized), and as a result, there is no one size fits all.  Often for children with special needs, if there is more than one disability, problem solving for education is often like peeling an onion.  Every layer you reveal has a surprise, and there is always another layer beneath it.  The result is trying to resolve how to filter through all the different impacting factors of a disability and come up with an appropriate solution to a child’s needs.  I talk to teachers (and am married to one) who brings their work home every night and on weekends, trying to solve how to best reach and help a child with complex issues.  These teachers truly feel for each of these kids and for their families.  Take a look at the burnout rate for staff sometimes.  It takes a toll.  But it is because these people truly care about their students.

Fourth, teachers want children to succeed.  Nothing pleases teachers more than seeing their students succeed.  For those in the special education programs, this is especially true.  They understand how hard these children have to work, and how hard the families have to work.  They want good things for these kids and for these families.  They know how important it is for the long term success of their students. 

So, parents, please think about some of this next time a disagreement starts to arise.  Think about the world that these teachers and educators live in professionally.  It is so easy to let frustration and emotion rule ourselves as parents when something involves our children and education.  Take an extra breath.  Think twice.  It is ok to disagree and to have differing ideas.  Have that discussion.  Talk it through, work together, collaborate, and be open to ideas (on both sides).  But be careful you don’t let that emotion turn something into a personal, antagonistic dispute.  It is hard, but take care, take a breath, and think about how you want to respond.  Will it help the situation or make it worse?

It is the mark of an educated mind to be able to entertain a thought without accepting it.
- Aristotle

True Believers and Holy Warriors

I am very troubled by those who believe that they and only they know what is right for everyone else.  I’m even more troubled when those folks try and force their beliefs on others.  Whether it is a TV preacher with bad hair and dimples who wants you to send him all your money, or the Tea Party, or one of the dozens of other groups that think they and only they have all the answers and are unwilling to listen to alternatives, I just don’t trust them.   The world and people in the world are just too complex for a single answer. That only one person or one group has been awarded some special providence to know that answer just isn't reality in the complex world we live in.  Now I do NOT believe these folks to evil, or filled with harmful intent, but I do find them to be misguided.  It is easy, however, to fall into the trap of believing that you have the answers. 

In the world of deafness, I keep running into some of what I described above.  It is not pervasive by any means, but there is this undercurrent that keeps raising its head and really needs to stop.  Again, it isn’t in the mainstream, but exists on the fringes, but it has the nasty habit of overflowing the fringe and dropping right on the heads of families that are trying to do the right thing for their child who is deaf or hard of hearing. 

Let me be clear – the vast majority of the people involved in this community are good people who will and do go the extra mile to help families who are trying to make hard decisions.  They will give opinions and thoughts and experiences, without judgment.

So what exactly am I babbling on about?  Well, it is the wonderful communication modality debate.  I’m still amazed that there are still people in this community believe that there is only one way that someone should be allowed to communicate, and if a family makes a different choice, the parents are ‘the devil’.   This is a topic that has a history that you could write books about, and this history heavily impacts some of these beliefs.  On one side, you have the Deaf world, and the centrality of American Sign Language to that very rich culture.  Inside that world exists a segment of people in that world who believe that everyone with hearing loss should use ASL to the exclusion of all else.  On the other side you have people who believe that the only way for people who are deaf to truly integrate and be successful in the world is to be oral.  And in the vast middle are all those who just want to see children to communicate successfully and do what they can to help the child be successful.

In my travels, I still do run across those on the Deaf World side that demand ASL only for everything.  However, these people are few and far between.  I did have one small group at a silent dinner a number of years ago tell me, in all seriousness, that if I wanted to do what was best for my son who is deaf, it would be to give him up to a deaf couple and let them raise him.  Again, they were the exception, not the rule in the deaf community.

On the other side of the coin, however, I’m running into far more of the ‘true believers’ these days.  People who are preaching that cochlear implants and oralism are only real way for children to be successful and those who sign are the ‘failures’ in the world.  Once again, nothing can be further from the truth. 

Let me be clear – cochlear implants are wonderful tools.  When a child is implanted early, the implant takes, and the child receives the appropriate long term therapy and follow up to learn how to use the device and maintain it, they can and do produce wonderful results.  I see many children and adults where the device has been a godsend.  However there are also those children where the implant does not work right, or is rejected, or the child cannot or does not receive the appropriate supports.  There are also many people with hearing loss who simply would not qualify for an implant.  What I am saying here is that cochlear implants are a wonderful tool, but again, not the right choice for every person or child who is deaf or hard of hearing. 

The same is true for the oral approach.  There are successes, and there are also children who will never learn to function in the world using only their speech.  I do not condemn that method, I just think that parents need to be fully aware that there are issues and potential pitfalls, and the possibility that this approach will not be successful for a child and parents need to understand this as well.

The bottom line is that whether you choose to sign, or choose to be oral, or get or do not get a cochlear implant, there is no one truly right decision, and whatever decision a family chooses, there will be pitfalls and problems, successes and failures.  Whatever methodology a family chooses, it will be hard work.

Finally, when making decisions, don’t let the true believers and the holy warriors push you or bully you into making a decision that may not be right for your child.  I’ve seen people tell families that their child will never be accepted anywhere but the Deaf World, so they need to only sign,  I see cochlear implant centers telling families that they are forbidden to ever sign, and I see people on the oral-verbal side tell families that if their children don’t talk, they are condemning them to a second class life.    Parents, you have to decide.  Eventually your child will decide for him- or herself.  There is no truly right answer, no matter what anyone tells you.  The only answer that is right is what actually works for that child.  I see adults and children all the time that are happy, successful people who use a mix – to varying degrees - of fluent sign language, spoken word, and cochlear implants. 

Parents, be open to all options.  Make choices based on your child and his or her needs.  Don’t be guilted or pushed into a choice.  Do what you think is right for your child.  And the truth is, there is no reason you cannot mix and match the options available to get the best out of your child in all areas of communication.  So be true to what you see as your child’s needs and go with it. 

As both a parent and a professional, I know I will support YOUR decision, and others should as well.

Songlines

The aboriginal peoples of Australia believe that there are tracks across Australia that were created by the creators during a time known as the Dreaming. During the Dreaming, these creators sung the world and all the things in it into existence.  If you know the words of the songs and their sequence, today you can still follow these tracks.  Songlines are, for all intents and purposes, a musical map that can help you navigate accurately for great distances. 

We all have our own songlines.  Where we are going, how we are getting there, and how we navigate our lives are the tracks of those songlines.  Sometimes they operate independently, sometimes they run parallel with someone else’s, sometimes they intersect, and sometimes you forget the words to your songline and have to try and remember them again.  In many ways, they can be maps of our lives.

This past month, my songline and those of my family have started on a new verse.  This is one that I have suspected was coming for a long time, and one that none of us was really looking forward to.  You see, my father had his 6^th stroke.  Amazingly, he was able to recover pretty well from the first 5.  This one, however, had a much more involved impact on him, both physically and intellectually.  He is now home, but is not fully independent.  He probably won’t ever drive a car again, and will need supervision at home.  That said, in many ways, he is still the same man that he was.  Just some parts of who he was just aren’t there anymore.  He is now using a walker or a wheelchair, and some of those higher-order thinking skills aren’t there.  But in many ways, he still is who he was.  The rest of us, however, are in transition.

My parents have been together since my father was 17 and my mother was 15.  They are in their mid-70s now.  While they have been equals in their relationship, dad was often the final arbiter.  That has now changed.  Mom is now in charge, and is, in many ways, his chief caretaker. 

My younger sister lives close to my parents.  She now has seen her life change as well.  She has had to step up and commit time to overseeing what is going on with our parents.  This is a new role for her, and one she is not particularly comfortable with. 

I find myself more and more in the parent role in the family.  Providing guidance and being a sounding board for my mother as she moves through this.  Also I find myself providing a place for my sister to vent her fears and frustration, as she really has not had much experience with the world of disability and leaned heavily on my father throughout her life.   

Looking at this situation, for my mother and sister, in many ways it is like when you first find out your child has a disability, except now it is not your child, but a parent or spouse.  For me, I’m discovering that while I can be empathetic to what they are thinking and feeling, I am also discovering how the years of dealing with all the issues that arise from raising a child with a disability have made me incredibly pragmatic.  How quickly both my wife and I moved into the mode that got us through various crises early in our son’s life.  What is going on?  What are the details?  What can we fix?  What can we ameliorate?  What cannot be changed?  What do we need to do in the future?  What will that near future look like?  How can we plan and prep for issues and concerns? 

We’ve been there many times in the past, and now we’re trying to help my mother and sister develop some of this perspective.  Not letting the highs be too high or the lows too low.    Funny, here we go again, with the recalling of my favorite poem, the one by Rudyard Kipling, titled, “If”.  Read it sometime if you have a chance because in many ways it describes how to survive in the special needs world as a parent.  And as I’m now discovering, it also gives a game plan for surviving in a world when one of your parents start falling victim to the ravages of age, health, and time.

So where is my songline leading now?  I’m not sure.  I’m not sure if I really know the words to this song for myself, or if I can help my sister, my mother, and my father find their words in this new world and this new map they are trying to learn how to follow.   We’ll only know by trying and seeing where the song takes us on this map.  One thing I do know is that our son seems to understand what words his songline is singing.  He offered to go up to Virginia and help.  He said he didn’t know what he could do, or how he could help, but if he was needed, he would go.  That is heartening to me.  Maybe at least our songlines went to the right places when trying to teach him.  That gives me hope that maybe I can find the correct words for my map for the future.