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.

Antelope With Night Vision Goggles

The other day Ian and I were watching TV, and that commercial for a particular cruise line came on.  You might know the one – it starts with a woman standing on the deck of a ship, looking out to sea and saying, “Never again”.  Then it flashes back to a scene of her and her husband sitting in a car screaming as it is being shaken by a grizzly bear on one side and a mountain lion on the other.  Ian just looks over at me, laughs, and signs, “the two of us”.  My wife, Sidney, happened to have been in the room at the time, saw that sign, and just rolled her eyes.   I just laughed at her.  

  

The commercial is relevant to us because our perception of that flashback is far different than that on the commercial.  We would be thrilled to be in that car.   Who knows, it still may happen.  You see Ian and I have been saving our pennies and we are going back to Yellowstone this spring.  It has become known as the ‘man trip’.  We are hoping to run into bears and wolves and bison and elk.  If we are very, very lucky, maybe we will see a mountain lion.  We also will continue what has become something of a quest.  We are going to continue to try and find a moose.  We’re going to start this year in Grand Teton National Park and move north into Yellowstone, finishing up in the Lamar Valley.  We already have our plans set for a whitewater run and another horseback trip.  This year we are going to try and do a float trip on the Snake River in Grand Teton (good chance to find that moose).

   

So why is any of this important?  In and of itself, it is not really important.  What IS important is that concept of perception.  Is the glass half full or half empty?  What the woman on the commercial implies is a dangerous risk, we really see as an adventure.  How do you see the world?  Are you willing to have an adventure or lock yourself down inside your house?  Or maybe you are somewhere in the middle.  Our family seems to have the view that whether Ian has a disability or not, we (and he) cannot lock ourselves away and hide from the world.  Honestly, Ian won’t let us, even if we wanted to.  He does understand that there are both good and bad things in the world, as do we.  But Ian chooses to face all of it.  

So when it comes to situations like bears and wolves and moose, we learn what we can, listen to people like the park rangers and guides, and follow their advice.  Does that mean everything will go perfectly?  No, but it certainly moderates the level of risk.  We make a point of being aware.  I am always amazed, for instance, of people who treat wild animals like they are in a petting zoo, or don’t follow signs to stay on the walkways in area where there are thermal features.  Typically, those folks are at the real risk for getting hurt.  But bad things sometimes can and do happen.  Then again, something bad can happen walking down the street in front of your house.  But in front of your house you usually don’t worry about it because you are comfortable there, and know the ‘rules’ of that world.  When you think about it, it really is all about perception, isn’t it?

     

Now this year, Ian and I will have some company.  Sidney is coming on the first part of the trip with us.  She was able to get the time off to come with us.  She did ask if it was OK for her to join in on our man trip.  Ian told her fine, as long as she followed the ‘man rules’.  She asked what they were.  Ian told her that he and I made the plans for what we were doing.  Further, there was no complaining if he and I chose not to shave.  Also, all dietary restrictions on healthy eating requirements were lifted.  If we chose to eat cinnamon buns for breakfast with a soda, that was ok.  (Not like we would really do that, right?)  Sidney told him she could live with that.  She said that as long as the rules did not involve running around the park carrying 3 pounds of pork chops as bait, life is good.  So the adventure is on….

      

Oh, and the other day the insurance ad was on TV.  You know, the one with the two antelope wearing night vision goggles and razzing the lion named Carl who now cannot sneak up on them?  Well Ian had an idea.  He looked over at me and told me that if we could get a couple of pair, we could go critter watching in the middle of the night, when no one else would be running around in Yellowstone. I told him it was an idea worth considering.  Sidney, with her eagle eyes, happened to see this conversation.  Needless to say, she was not happy.  I guess she was seeing what she considers the male perception of reality, which she thinks is slightly skewed. We were told in no uncertain terms that we were not going to waste good money on expensive toys!   She would brook no discussion.  I saw a certain logic in Ian’s idea, but I guess Sidney does not.  I guess the man rules don’t apply to this trip until we arrive at the airport…..

To the Dentist, and Backward in Time

Ian had a dentist appointment last week.  I went with him.  He is more than capable of going out and about in the world by himself, but I volunteered to act as interpreter for him, and he was comfortable with that.  I did not think much of it.  Ian drives himself to college and around town.  He goes to the gym, he makes decisions on his education, and on many of the things in his life without our assistance.  He is, like any 21 year old, pretty darn independent and very set on ensuring his independence.  The only difference is that he also has to deal with his deafness and cerebral palsy.   Our community and our society for the most part has been pretty aware and pretty accepting of those who do have some disability.  We haven’t seen much ignorance or small minded thinking about disabilities in quite a while.

Then came the dentist visit.  

We arrived, Ian signed in and waited.  The dental tech came to the door, looked at Ian, then looked at me and asked, “Do I need to hold his hand to take him back?”  I think my jaw hit the floor.  And judging by the expression on Ian’s face, he had certainly read her lips.  The normally happy person that is my son was quiet and closed for the rest of the visit.  I did look at the tech and tell her that no, Ian did not need any help.  I explained that he was in college and quite capable of getting around and making decisions.  I explained that he was quite capable of doing what he needed to do without my help or her help or any help at all unless Ian asked for it.  She obviously wasn’t so sure.  I do not think she meant any harm.  I also don’t think she knew any better.

Ian isn’t confrontational.  I have a tendency to be more so.  However in this case, I did not think it would have been worthwhile.  I left the discussion at that, and bit my tongue.  Some people just aren’t capable of getting it.  The only way it can happen is them seeing the example.  She frankly didn’t seem like the brightest light bulb in the batch, and I’m not sure directly challenging her thoughts would have been something she could have processed at that time.  So we decided to avoid the confrontation.

After we finished and got home, Ian looked at me and told that he was deeply offended and wants to find a different dentist office.  I told him that I fully understood and that I was more than a little irritated myself.  I think we will check with our insurance and see what else we can go.

What is the next step for me?  Well, I’m supposed to educate folks about things like this.  I actually have a dental appointment for myself this week.  So, now that I’ve calmed down and had a chance to think it through, I’m going to talk to the office manager.  Surely, Ian is not the only person they service who has a disability.  I’m going to express how insulting it was and that Ian is ready to move to a different dentist and that we are looking to do so.  I also am going to ask if they have ever done any kind of disability awareness training for their staff or discussed what appropriate protocols are in the office.  I am going to suggest that they need to do that.  I will even offer to do such training.  I am also going to explain that there is, even if it is small, an economic impact to a business that doesn’t show basic respect to people who have a disability.

We will see what happens. On the positive note, this kind of thing seems to have become pretty rare – at least in Ian’s world.  The negative thing is that it still does happen.  In many ways I look at Ian as something as an ambassador or an explorer.  He is going places and opening doors by interacting with the world for those who follow, just as he is following those who have come before him.  With each new traveler on the path, the perceptions change, the understanding in the general population expands, as does its acceptance.  Ian’s world was made easier by those with disabilities who demanded to be treated as equals.  Hopefully, the world of those who come after Ian will be made easier by his passage down the roads he travels.  It just takes time, education, and experience for things to change.

Christmas Keeps Changing

It does not seem like it was that long ago that I remember walking into our son’s bedroom on Christmas Eve to see something that I had never seen before.  Ian was sound asleep, and signing. Santa and reindeer on were on the roof – he could feel the house shake!  Gifts, gifts, gifts.  The reindeer had found the reindeer food we put in the yard (dog food)!  We stood and watched for about 3 or 4 minutes as Ian dreamed, and signed as he slept.  Santa did come that year, and he was thrilled.  I do not remember exactly what he got, but the gifts were the gifts that most 4 or 5 year olds want.

Seventeen years further on, that is still one of my favorite Christmas memories.   Now that he is twenty one, we have to send the golden retriever upstairs to wake him instead of shooing him back to bed because the sun is not up, and 4:00 AM does not mean it is morning….  The simple reality is that there are now 3 adults in the house instead of 2 adults and a kid.  The Christmas memories are now different.  We opened gifts and then had to wake him up again to go on down to my wife’s parent’s house for breakfast and, of course, more gifts.  

There are still memories made, however.  We did spend time in Virginia with my parents.  It isn’t a particularly exciting trip, but it is important.  My father is not able to travel, so it is one of the few times a year we can see him or my mother.  Ian is so good with the sitting.  My father is just so happy we are there and wants Ian to sit with him.  Ian does, without complaining.  For me, it is bittersweet, remembering what my father was like when he was younger.  But, there is nothing you can do to fight that inexorable passage of time. 

Christmas Eve, Ian and I had two jobs – we first directed the parking of cars at church (small parking lot and a lot of cars) and then we went inside and were ushers for the service.

Bracketing Christmas, the wife and I had two other milestones.  Both of us turned 50.  We are twelve days apart in age.  It wasn’t a huge crisis for either one of us.  The only bad part was the doctor’s appointment where I suddenly realized that the nurse taking my pulse was young enough to date my son.   That was the only time I felt old….  Anyway, like the song says, it is just another trip around the sun.

New Year’s eve – there were three glasses of champagne instead of two and a sparkling cider.  Then the two older ones went straight to bed.  Ian had done some socializing with friends, but was kind enough to spend New Year’s with his parents.   

Ian also gave us a couple of gifts.  The most important one for us, however, was an early one.  He got his grades for the semester at St. Johns River State College.  Two A’s and a B.  3.66.   All three of them in his computer science major.   One programming class, a network design class, and one on computer operating systems.  Neither one of us could have asked for a better gift.  And the best part of all of it for us was that we stayed out of his hair and did NOT helicopter.  It was up to him whether he succeeded or not and if he studied or not.  His choices and he seemed to have made the right ones.   Merry Christmas to us!  Ian was also happy, because the helicopter had actually landed instead of the constant hover.  I guess that way Santa did not need an air traffic controller to land at our house.

Normality

It is sad, really.  Currently, our family’s life is pretty normal.  No big issues or concerns outside the normal ones that most families have.  No abnormal crises.  No looming disasters on the horizon other than the normal storms that every family has to navigate around.  Yet, here I sit, waiting for the ‘other shoe’ to drop.  You see, in a family with a child with special needs, periods of normalcy are almost scary.  These times just do not happen. 

    

If things seem normal, then it cannot be good.  We must have missed something.  Somewhere, somehow, there must be something that was overlooked.   Families like ours just are not allowed to have normalcy.  As much as we want that comfortable feeling of issues that are ‘normal’ in a family, we know that when you have a child with special needs, such comfort only means a nasty surprise.  Instead we dread such periods, looking for that nasty other shoe.  You see, the Fates to not permit us the luxury or the comfort of being able to relax.  The more that we begin to feel like we can let our guard down, the more the hair on the back of our necks begin to stand up and tingle.

   

You see, those of us that live in the special needs world feel most at home and most comfortable when the crisis is happening.  We spend so many years bouncing from near disaster to near disaster that we don’t know what to do with ourselves when we haven’t just ridden out of one and aren’t looking down the maw of another.  For 20+ years, the ride has felt like a continuing sequel to the “Indiana Jones” movies.  As a parent, you get so used to surviving one scrape to the next.  Surviving and pushing forward, winning some, losing some, but moving forward.  You don’t really believe there is a true finish line.  Maybe there is.  Who knows….

  

All I know right now is that while I want to believe, like the two antelope with night vision goggles in that new insurance commercial, I certainly do not plan on letting my guard down.  Maybe if I’m lucky, and this trend continues, in about ten years I might be able to relax…..