Squeezed

This was a very interesting summer for me.  Ian continues to grow more and more into a mature, responsible adult.  I’m still Dad, and still am involved, but his level of independence continues to grow.  Ian’s college grades are good; he has a 3.25 overall GPA, and about 3.9 in his major field.  He has about another year in this program and he will be done with his A.S. degree.  We have also been looking at four year colleges where Ian can go to complete a B.S. degree.  We visited Lenoir-Rhyne University, and have plans to go see others.  I know that 10 years ago, I did not know that we would get here.  The hope was there, but so was the dread that such dreams would not come true.  And Ian REALLY wants to find a college that does not involve commuting from home, but has a dorm involved.  I am so happy about that – it is normal and it means he wants his independence.

  

Unfortunately, my father has had another stroke.  At this point, he won’t be going home.  Instead, my mother has finally accepted the need to move into an assisted living facility where they can be together.  She, with some help, has found a place where they can still have an apartment, but Dad will have access to the services and supports he will need.  This, however, has not been an easy process.  It has involved me, my sister, one of my uncles and an aunt.  Talking and talking and talking to my mother about the need to accept change, and the need to understand that there are certain realities in her and my father’s life that need to be accepted.  It has been something of an ongoing intervention.  

    

We seem to have hit that point where, while having a child with disabilities who is moving out of and away from the need for guidance and support, we now have a set of parents where they need more support and guidance from me and from my sister.  The parent – child roles here are well on their way to being reversed.  My guess is that this will be a permanent new dynamic in my family’s life.  

   

I’ve seen this dynamic happen to other families.  Sometimes it is in families that have children with special needs, and sometimes it isn’t, but it certainly adds to the stress levels in the family.  I guess I’m now part of that ‘tweener group of adults who still have kids to worry about but also need to be worrying about their parents as well.  

    

Where do we go from here?  Really, we just keep moving forward.  My wife and I watch with pride and relief as our son continues on his path toward an independent adulthood.  We also hold our breath watching how things progress with my parents.  We all know the end game for my father – really for all of us at some point in time – but we aren’t really sure what path he will follow in this particular journey.  Will it be quick, or a slow series of steps of decline?   The larger question in many ways to us is how will my mother deal with all this, and how will we be helping her through this process?  Again, multiple paths are available.  Will she become strong and step up, finding that strength in herself, or will she be weighed down by the stress and changes?  We don’t know yet.  We do know that we will be there somehow to help her through.

The Fox That Owns the Place

Ian and I have been back from Grand Teton and Yellowstone National Parks for less than a week now.  We spent 3 days in Grand Teton and a week in Yellowstone.  In a change from our normal routine and with her principal’s permission, my wife, Sidney, went with us for the first five days.  Then we got her on her flight out of Bozeman, MT and Ian and I continued on to Yellowstone’s northern range.   Yellowstone is a place I have fallen in love with.  Ian enjoys it immensely as does Sidney.  But the second half of this trip was our ‘man’ trip, with just Ian and me. 

Yellowstone is one of those places of constant change, where one visit will be completely different from the next.  We’ve seen 80 degree days and we’ve seen snow.  We’ve seen bright sunshine that leaves you in your shirt sleeves, or cold rain with strong winds that even with gloves and coats leaves you trying to find just a little more warmth.  That is a large part of what I think we love about the place.  No two days are ever the same.

We did some of our usual things – we took a whitewater trip on the Yellowstone River one day, and we spent a bit of time on horseback with a guide.  We were again far enough out that it was just the 3 of us and the horses.  No other people.  But there were plenty of animals.   This year was a big year for moose and for grizzlies, as well as black bear.  The wolves were not as present – we only saw one this visit.  And of course the elk, bison, bighorn, and mule deer were very visible throughout the trip.

But there was one animal that we saw that made the biggest impression on us.  In some ways this critter reminded me of my son.  It was a little fox, and he was missing about a third of his tail.  At some point, he had some bad fortune – a run in with a larger predator maybe – and had a significant segment of what should have been a big bushy tail missing. 

This fox was not in the field or on a hill.  Instead, he was walking right down the middle of the oncoming lane of traffic on the road between Mammoth and Tower Junction in Yellowstone.  He also had a small traffic jam behind him.  The first car in line was a massive white pickup truck – you know – the kind with the dual wheels in the back.  The whole mass of this parade was moving at about 3 miles an hour.  Luckily, there was no one behind us, so we stopped and watched.  As the fox passed us, he actually looked over at us.  I would swear that he had an expression on his face that was half humorous and half self-assurance.  We watched as this parade continued, fox in the lead, for about the next quarter mile, where everyone disappeared over a hill, still moving at about 3 miles an hour.  That night at dinner, we were in hysterics laughing at the sight of this fox.  Ian then went on to describe it to the waitress, who was about his age, and had her laughing, too.

Later that night, as I was lying awake in bed and thinking about the day, it really hit me how much that fox reminded me of Ian.  Despite whatever that fox had been through to cost him his tail, he seemed to be enjoying himself.  Hmm, who do I know that has that kind of mindset?  It certainly isn’t me.  I’m too dour.  But Ian seems to find humor in almost everything, and doesn’t seem to let the things he has to deal with get to him.  But that fox definitely seemed to know what it was doing and where it was trying to go, and it wasn’t going to let something like a big pickup truck deter him from his goal.  Hmm, again, sounds like Ian.  After having one of my, ‘son, are you studying enough?’ lectures all planned, because I was waiting for bad grades to arrive from the college after keeping my mouth shut all semester and just watching what I thought might have been an academic train wreck approaching, I never got to use that lecture.  Ian, I think, knew what had been coming.  When he presented semester grades of all ‘A’s to me, I did my impression of a fish out of water, and I got the same look from him that about two weeks later I got from that fox.

That expression told me that he knew exactly what he was doing.  Disabilities or not, he has a plan and is following it.  Just as that fox was not going to move for that line of traffic, Ian is chugging down his own road, keeping in his lane and doing what he needs to do to get where he wants to go.   That look was also took another one of those steps to make me reevaluate Ian.  He is an adult (I’ve known this for a while – it just is hard to accept in my role as dad).  While he still asks for guidance at times, he is able to make those adult decisions.   He needs me less than he ever has.  This is a hard realization. Not bad a bad realization, but just hard one.  I now keep that picture of the fox on my computer, so that when I start feeling the need to go into helicopter mode and hover, I can pull it up and look at that fox’s expression and think about that day.  It reminds me that the time for hovering is long past.  It also helps me remember that Ian has a plan about where he is going, and he is in control of that plan, not me. 

Homework for All

Several things have happened over the past month or so that kind of tickled the need for this particular post.  I was working in a district with some professionals who really have not had much experience with children with disabilities, but who very much want to learn.  Specifically, we were talking about deafness, and the conversation turned to understanding more about the impacts on families and about some of the social issues and concerns that come into play for the kids as they get older.  The conversation progressed, and eventually arrived at a time when I had to leave and move on to my next stop on that trip.  I told them that I was going to give them ‘homework’.  Basically 2 movies that I think, while not being perfect, give a good picture of a number of these topics.

About 2 weeks ago, my son asked me if we could request a movie on Netflix that he wanted to see.  It was a movie I had never heard of before, but told him that it was not a problem, to go ahead and add it and move it to the top of the queue, which he did.

The more I’ve been thinking about it, the more I think most folks who work with kids with disabilities or their families (not just deafness or blindness, but kids with any disability) should take the time to watch the 3 movies that I’m going to mention.

The first movie is “Children of a Lesser God”.  It is a good look at some of the conflicts between ideologies that can and often exist between the deaf and hearing worlds’ perspectives.  

The second movie is one that I have a really hard time watching.  I’ve seen all of it, but never in one sitting.  I have to walk away from the movie, and then come back later to see a little more, and repeat the process until it is done.  It is “Mr. Holland’s Opus”.  Most of the articles you read about it deal with Richard Dreyfuss and his life as a music teacher.  For me (and for many parents) it is about his role as a father of a child who is deaf, trying to come to grips with everything that means, and find a way to deal with it.  So many fathers and families go through these same issues.  If you have spent any time in the disability world and not picked up on this, then we really need to have a conversation.  Again, this movie is very hard for me to watch.  It is one that gets into a place inside me that I keep locked and barricaded and this movie tries to force it open.  Truth be told, I think that all of us who are dads of kids with special needs have this place inside of us, and often our ability to function depends on keeping this vault closed.  What we put into it, and how large it is, varies from father to father, but it is there.  For me, this movie tries to dynamite that vault open. 

The third movie is the one I had never heard of until Ian asked if we could get it.  That movie stars Daniel Day-Lewis.  It is called “My Left Foot”.  It is actually a true story, and is based on the autobiography of a man named Christy Brown, who was born in 1932 in Dublin, Ireland.  Brown was born with cerebral palsy and initially his family was told that he had limited mental capacities at best and probably should be committed.  Instead the family raised him at home.  The title comes from the fact that the only limb he had real control over was his left leg.  Without going into all the details that make the movie worth watching, suffice it to say he became a successful artist, writer, and poet.  He published a number of books and three collections of poetry during his life.   It is a movie worth watching simply because everyone, professionals and parents alike, need to be reminded of the potential of the individual, and the need to look beyond a diagnosis and see the individual.

Knowing What You Don't Know

One of the most important things for a parent or a professional to know is what he or she does not know.  This can also be one of the hardest things for a person to understand.  For all of us, be you a parent, teacher, administrator, or other professional, it can sometimes be hard to admit that you don’t know something.  Yet to do so can often be the best thing you can do to help a child with a disability.  

  

To admit that you do not have all the answers can be incredibly difficult sometimes.  Sometimes it is a matter of ego, other times it may be a matter of your perception and insecurities about yourself, it may be concern over what others may think about you, and in some rare cases, it may truly be a degree of hubris that tells you that you truly do know everything that you could possibly need to know.  We always want to be perceived as competent in our particular roles with that child.  We never want others to walk away from us thinking we aren’t able to meet the needs of that child on whatever level we are involved.

   

For the parents, the willingness to admit and understand that they do not have all the answers can actually help to propel them to be better parents for the child and to be more successful advocates for that child’s educational needs.   Hopefully, that parental love will be the driver for parents to admit to themselves what they do not know.  A parent who can do this now has the opportunity to access information and to learn from those who do.  Just the willingness of a parent to say that he or she needs to learn more or that he or she does not understand something will often be a doorway to the information that the parent is seeking.  I have yet to see a professional turn away a parent who is seeking information that can help a child.  

  

Frankly, as a professional, and as a parent myself who has travelled these waters, I find that the parents who do the best job of advocating and helping to educate their child with a disability are those parents who, in evaluating their child’s needs, can say to the professionals in their child’s life that they need help and want to learn.  Those parents truly understand the need and will move heaven and earth to access and learn the things that they don’t know.  As I can attest, that process of understanding what you do not know and need to learn about never really ends.  It simply evolves into new areas as your child matures.

   

For a professional, knowing what you don’t know and owning up to that allows you to continually grow as a professional and to help the children you serve.  As we all know, it simply doesn’t do yourself or your students any good to operate without solid knowledge about the disabilities you may be seeing, what those disabilities may mean in the educational setting, and how you, as a professional can look to accommodate and serve that child so the child gets the best education you can possibly give.  I was once told by a teacher that she always looked at her students and asked herself what she would want for them if they were all hers.  Then she tried, as a professional, to give them just that.  This particular teacher said that yes, sometimes there were extra hours outside of work or on weekends doing research and learning, or sending emails to others who she knew had knowledge that she needed, or in some cases, sending emails to people she knew would know where to get information.  She told me that at the end of the day she could hold her head up and look anyone in the eye and say she was doing the best she could possibly do for her students.  She also said she was well past the point of worrying what someone thought about her if she said she did not know something or have information.  She figured that the fact she was admitting a lack of knowledge and then going and getting information to resolve the issue was more important, and would be viewed more positively, than just sitting there and saying and doing nothing.  As she put it, if that child was hers, she would expect more from herself and from those around her to make sure that child got an education.

   

So, how do you know what you don’t know?  A large part of the answer to that question is introspection and a willingness to constantly self-evaluate.  It isn’t a task for someone that has a huge ego or has low self-esteem.  Those two factors often make it hard to take that step into the deep end of the pool and look for your own shortcomings.  You have to be open to the possibility that you may not be perfect and that there may be information out there that you have not seen, and then have the courage to deal with that realization.  But that isn’t the only thing you have to do to know what you don’t know.  

   

Once you have identified areas where you do not have knowledge, are you willing to then go acquire it?  If you don’t acquire that new knowledge, just knowing that you don’t know something really isn’t going to help you or your students, is it?  Only then, when you have identified that there is something you know that you don’t know, and when you have collected and learned that information that you previously did not know, can you operationalize it for your students and provide a better learning environment for them.  

    

So, as a parent or a professional, if we really want to help the children learn, we have to begin by looking at ourselves and figuring out what it is that we know that we don’t know and then going out and learning ourselves.  How can we help that child with a disability if we do not take the time to know what we don’t know?  Everything starts at this point.   Take the time to look at yourself and ask that question.  The answers may surprise you and allow you to grow as a teacher, as a parent, and as a person.