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.

Response to Intervention (RtI) – What Parents Need to Know

Over the last year or so, as a parent, you have probably heart the acronym RtI, or Response to Intervention (sometimes called Response to Instruction).  RtI is a practice in education that has the potential to have a powerful impact on student achievement in the educational setting.  The long and short of RtI is that it is a practice that attempts to look at the individual educational needs of a child and develop a plan to use the techniques and methodologies that are believed to be the most appropriate to help that child learn effectively. 

RtI also uses a multi-level approach to this practice.  If necessary, RtI will escalate to a more intensive level of intervention to help the child educationally.  Throughout this process, the school is gathering information and evidence to determine if the current interventions are working, and to evaluate if changes should be made to the methods of instruction that are being used.

Finally, RtI is not limited to just students with special needs.  It is a practice that is school-wide, and impacts every child.  The bottom line is that RtI is really asking the question, “How can we best teach this child?” and trying to provide the answer.  This is a very good thing, and something that, as a parent, you should embrace with all your heart because it will help your child in the educational setting.

Now, when it comes to children with special needs, there is also something you need to understand.  RtI does NOT supersede IDEA.  If you or someone involved with your child believes your child has a disability, and that concern is brought to the attention of the school district, then all the same timelines and requirements for evaluations to determine if special education services are required for the child must be met.  RtI is not a substitute for an IDEA evaluation. 

RtI and IDEA can and should work hand-in-hand, with RtI being a part of the IDEA evaluation process.  But it is important to note that evaluation for services under IDEA should NOT wait until an RtI evaluation is completed.  RtI does not replace IDEA or its requirements. 

Here in Florida, you should not run into that problem.  FLDOE and the district ESE departments understand these issues and are aware of them.  DOE and the districts have done their work to clarify this and make sure both processes are working they way they should.  But it is important that you as a parent also understand how these 2 very important legs in the educational process link and work together for your child.

Understanding Atticus Finch

      They're certainly entitled to think that, and they're entitled to full respect for their opinions...  

      but before I can live with other folks I've got to live with myself.  The one thing that doesn't

      abide by majority rule is a person's conscience. 

      ~Harper Lee, To Kill a Mockingbird, Chapter 11, spoken by the character Atticus

 

I read To Kill a Mockingbird for the first time in the 7^th grade.  At the time, I really did not see the point.  Over the years, I’ve read that book several more times, and I can honestly say that I understand Atticus Finch.  The message of doing what is right, no matter the consequences, is one that I have tried to absorb and live by.  I’ve tried to make the right choices, even when those choices are not easy or popular.  Often it is a hard road, and one that is not always beneficial to myself.  But, in the morning, when I get out of bed, I can look at myself in the mirror. 

So many times it seems that the right decision is the hard decision and the wrong decision winds up being the easy decision.  How wonderful it would be if the right decision would always be the easy decision!  Unfortunately, too many times in life, it doesn’t work out that way.  Luckily for me, my father, who was a Marine who became an elementary school principal, was big on me learning several things.  One of those things was that a person is only is as good as their word.  If your word is no good, then you aren’t trustworthy.  Another thing was that no matter what happened, you needed to be honest.  Once again, what you say matters.  A third element was that no matter what you do, you do it to the best of your ability.  A fourth element was that you were responsible for your actions, and you wanted your actions to be honorable.  Finally, it didn’t matter what others were doing, you had to make decisions based what you believed to be right.  I know, it sounds somewhat old-school, but you know what?   Those lessons have served me well through the years. 

You see, Atticus lives by similar beliefs.  He does what is right because it is right, and not for any other reason.  He is the epitome of the good and honorable man.  He may not be filthy rich, and may never be famous, but more importantly, he is a good an honorable man.  And, he imparts these same virtues to his children.  He passes those lessons on to his offspring so that they, too, can live honest, honorable lives.  Maybe there is a reason I keep coming back to that book. 

As a parent, I’ve tried to pass these values on to our son.  I think he gets them.  He is honest, he thinks about how is actions impacts others, he tries to keep his word.  I’m happy with what I’m seeing.  He is still young.  And yes, 19 is still young.  But I think I see the makings of someone that you would call a ‘good man’.  At the bottom line, that is all I can ask of him.  In the long run, that will help him make his way in the world and help him be able to look at himself in the mirror.

What about you?  Are you teaching your children these kinds of lessons?  Are you doing what you can to teach your child to be a ‘good man’ or ‘good woman’ in the future?  Think about it.  If you are not, maybe you need to think about what it can mean for your child’s future.  Go on, give it a thought.  In the long run, it might really be worth it.

Indoors, when Miss Maudie wanted to say something lengthy she spread her fingers on her knees and settled her bridgework. This she did, and we waited.

“I simply want to tell you that there are some men in this world who were born to do our unpleasant jobs for us. Your father’s one of them.”

“Oh,” said Jem. “Well.”

“Don’t you oh well me, sir,” Miss Maudie replied, recognizing Jem’s fatalistic noises, “you are not old enough to appreciate what I said.”

          ~Harper Lee, To Kill a Mockingbird

The IEP: Follow-up in the New School Year

We are now a few weeks into the new school year, and hopefully your child has settled into the new school year, the new routine, and has gotten acclimated.  Hopefully, too, if your child has an IEP, the school has begun to get the bugs worked out and things in that process are starting to fall into place.  But are you sure?

By now you should have begun evaluating how your child’s IEP is operating at school.  You should be asking yourself:  Is everything working? How well?  If something isn’t working or not working well, then why?  Is that issue serious?  Can it be fixed with just a small tweak, or is it something bigger?  Am I sure the teacher, school, and I all have the same interpretation of that IEP accommodation, modification, or other support?  Have I started communicating with the teacher to make sure we are all on the same page?  Are we all on the same page?

It is a large number of questions.  But they are ones every parent should ask all the time and every parent should be asking them from day one of the school year.  By now, things have settled down a bit and hopefully, you are able to begin getting solid answers to those questions. 

Remember the old adage about the early bird getting the worm.  Well, this is the same principle.  The earlier you solidify those lines of communications with the school and begin problem solving any issues you identify, the better an opportunity your child will have to be as successful as possible academically.  As usual, it is work, and you have to be willing to devote your time to doing this and keep doing it again and again and again.  While your school staff will be asking those questions (or something similar) all the time, you, too, need to be asking them.  Remember, this is your child we are talking about.

‘Normal’ Life Can Still Continue in the Special Needs World

A question that comes up often from parents when I’m doing a workshop is ‘how do I do what I need to do for my child with special needs and still a fairly normal home and family life?  Is it even possible?  The answer is yes, it is possible, and while there are changes in your and your family’s life when you have a child with special needs, it is still possible to have a pretty normal family life.

First, some caveats need to be given.  Every family situation is different and every person is different. This means that there really is no truly ‘normal’ family, but really what works for you and your family.  Try not to compare to the Joneses next door. Understand that when you have a child with a disability, sometimes you have to do more planning and adjust your schedules a bit more and realize that you may have some different limits on what can be done on a given day.  The truth is that no family – not even that ‘perfect’ family down the street really can do everything without give and take in their schedules.

While it takes some planning and thinking on your part, you can still have an ‘adult’ life.  If you went out with your spouse or with friends, you still can.  You just have to plan to make sure that you have appropriate coverage at home.  Family or close friends can be helpful here.  They can often be responsible babysitters who care about you and are willing to go that extra mile to help with a child with a disability.  With family, who knows, they may even keep a child overnight to give you a break.  It is ok to use them for this.  Some parents feel guilty for going out.  You should not.  You need that break.  It will help you relax and possibly be a better parent.  Plan, ask for help.  You have permission – it is ok to do so.  Many of your family or friends would probably jump at the opportunity to help.

With some pre-planning, you can also participate in family activities like vacations. We’ve talked about that previously in other blog articles.  We travel extensively.  It is important to our family, and we know other families with children with disabilities who travel often as well.  Again, it takes planning and sometimes a thick skin, and a willingness to be flexible as you schedule, but there is few reasons or issues that you cannot work around with some planning and thinking through the ‘how’.  Often travel can be eye-opening for everyone in a very good way.

The same is true with other family activities locally. With planning, children and families can go out to eat, participate in activities and events, participate in school activities, you name it.  It is possible.  Don’t write it off or get so wrapped up in all the negatives that you lose sight of the possibilities.  Think through the problems and look for answers and solutions.  Remember not to try and compare your family to others.  Instead, ask yourself if you are doing things that you and your family enjoy doing.  Do those things make you and your family happy?  Are you finding ways to have some time for yourself or for you and your partner?  If you are, then guess what?  You are having a ‘normal’ family life…. 

Parents, Educate Thyself

If you are the parent of a child with special needs who is either in school or will soon be going into school, you have a responsibility to do something that can be tedious and sometimes frustrating.  But if you follow through with this responsibility, you will put yourself into a position where you can truly represent your child and help them be as successful as they can possibly be.    That responsibility is that you must educate yourself.    What I’m talking about is not learning about your child’s disability (which you should have been doing since the minute you found out about it).  What I’m talking about is learning about IDEA and the IEP process. 

Most parents understand the basics about the IEP – that there is a meeting, and that meeting determines services for your child at school and what class they will be in.  Most parents also understand they have some rights and some things are their responsibility, but often, that is about it.  In working with parents, maybe 2 or 3 times every year I will have someone approach me and say that they have never had an IEP meeting.  They know they go to a meeting about their child every year, but they don’t have an IEP meeting, even though their child has a disability.  In questioning them, it turns out that they have been going to IEP meetings, but they honestly did not know that they were in one.  Hearing that can be frustrating from my perspective, because at that point you know the parent is detached from the educational process.  IEP education for parents has, simply become a large part of my job – answering questions, helping parents understand what the process actually is and what can be and cannot be done in IDEA.

One point I want to make clear – you are not educating yourself to play ‘gotcha!’ with the district.  You are educating yourself because it is important to understand as a parent, going into the educational process, what IDEA is, what it requires, what it allows, and what it does not.  IDEA is not a carte blanche to force districts to pay for everything a child needs in his or her life related to the disability.  It is, however, a process that ensures that a child with a disability is getting appropriate services to provide supports that are needed in the educational setting to give the child the opportunity to be successful in school.  How an individual service fits in that process is for the IEP team to decide.  Many may make perfect sense, but sometimes there are those that really do not.  Learn what the criteria are.

Take the time to learn.  Knowing what you need to know before going into an IEP meeting will help you work more effectively with the district through the IEP process.  Knowledge will help you better evaluate the success or failure of the child’s services and to be a more effective participant in the process, and will allow you to better represent your child’s interests.  There are lots of resources available to assist you in educating yourself, including your school district.

I know that time spent with understanding the law can be tedious and boring.  Don’t let that stop you.  Tap into parent organizations or the school district’s resources, or search the internet to help with your understanding of IDEA and the IEP process.  Keep looking for those resources and organizations that can help you.  Study them, learn from them, and ask questions - it is important because the more you know about IDEA and the IEP process and how they work, the more effective you will be for your child in the IEP process.  This, in turn, will help you help your child and can help to build an effective collaboration with the school district.  It is important.

So go out there and study and learn!

Change Happens

I had a boss a few years ago (one of the smartest persons I think I have ever had the privilege to know) who used to tell all of us that in a large part of our lives and careers, we would have to deal with change.  A small percentage of that change we could control, but there would be much of it we could not.  Part of making our jobs and our lives easier was learning how positively influence those things we could change, while learning to accept and adapt to those things we could not. 

How very hard that was for me then to accept and adapt to changes that I could not control….  I would waste time fussing about things that I could do nothing about.  Time that I could have used working to improve the things I could change.  I think most of us do that.  I still do at times, to be honest.  But I can also say that I learned a great deal from that person, and one of them was how to let go of many of the things I cannot control and not waste precious time and energy that I could be devoting to something useful.  I find myself looking at things now and asking myself if I can do anything about a particular change that may arise (positive or negative) and deciding if it is something that I can impact or not.  If not, I try and let it go.  While I do have a tendency to be wound up a little, I am nowhere near as bad as I used to be.

So what does this have to do with anything?  Simple, as parents you are all in the countdown to the RETURN TO SCHOOL!  Every school year brings on a raft of changes.  From new teachers to new students to different bus schedules to new schools, there are many, many things that will change inside the basic school routine.  This can be stressful for any family with school age children.  Even more so for families with children with special needs.

So, I ask you – will you waste your precious time and energy raging against the wind, trying to force a change on an issue that is out of your control, and often out of the control of those in the schools that you work with?  Or will you try to see the change for what it is and see where you can make a difference and use your precious resources there?

I want to ask all of you, as the school year gets ready to start, to take a deep breath and look at those changes that are coming for you and your child and sort through them before responding.  Figure out what is good, what is problematic, what is changeable, and what isn’t.  If you are not sure, ask.  But once you know, take the time to evaluate the new world and determine how to move forward.  Think first, and then act.  Help foster change where it is possible instead of dashing yourself to shreds on a seawall. 

Give this a try.  You may find that you are more able to take a breath, help your child, and build a relationship that is positive with your school.  And maybe keep your hair from falling out as well. 

New Video Resource

OSBD & RMTC has set up a new web resource for parents, teachers, professionals and others interested in parent issues, deafness issues, and/or blindness issues.  This site has informational videos related to all three areas.  As we can produce them, we will add more.  There are several that I know are currently under development for addition to the site.  I think this can be a valuable resource for anyone interested in one or more of these topics.  Take a look!

You can access this site at http://vimeo.com/rmtcosbd/channels or see the link labeled "OSBD & RMTC Videos".

Working Hard or Hardly Working?

We live in a world that is highly results oriented.  The grade, the job review, how much money we earn, are you a starter on the team or a reserve, did you make the team, all are evaluations we seem to make in our society to determine both levels of success and of effort.  We see articles about ‘tiger moms’ who will force their children to succeed at all costs, or people who make value judgments on the worth of a person by results based on competition and not on who that person truly is.  All those measures tell us much about a person at one level, but not at all levels. 

Another method of evaluation is the old, “keeping up with the Joneses” measuring stick.  How do I compare or how do my children compare with those of my neighbor?  One thing I have learned over the years, one thing that was taught to me by raising a child with special needs, is that most of these measures truly do not matter.  They say little about who a person is or what that person’s true worth is.  Defining success as being faster or stronger or more attractive or more academically successful is really using definitions that are really fleeting measures.  Speed and strength disappear with age and injury.  It is the truly rare individual that is intellectually more gifted in every area than everyone else.  A DaVinci or a Galileo or an Einstein possibly fit this role, but even so, they are the rare exception.  But even so, those evaluations change – did you know that early in Einstein’s life, there were concerns that he may have been ‘slow’ because he did not begin to speak until a couple of years later than other children when growing up?

So what I have learned is the need to try and evaluate everyone based on who they really are.  Is this person, no matter what is happening, truly a ‘good’ person?  Does that person want to do the best that they can? Does that person care, to the best of their ability, about others?  Does that person, to the best of their ability, have empathy for others?  Bottom line, what kind of person is that person at their core? 

So, what does this have to do with working hard or hardly working?  Let me tell you the story of 2 classes.  As many of you know, my son, Ian, is deaf and has cerebral palsy.  He also just completed his first year at the local community college.  For the most part, his grades have been pretty good.  However, he had 2 classes where he had, for lack of a better description, grade anomalies.  He failed an Algebra class and received a D in an English Composition class. 

In the algebra class, we saw it coming.  Ian was cocky about algebra.  Now mind you, he usually is a good math student.  However he believed he ‘knew this stuff’.  Wrong.  He decided there wasn’t any need to worry about studying for that class or doing the optional homework.  You see he knew that stuff.  He dug a hole that, by mid-semester, he was frantically trying to dig himself out of.  Guess what, it didn’t happen.  Now, his other classes that semester were all ‘A’ grades, but he put the effort into studying.  We were irritated with the ‘F’, to say the least.

In the English Composition II class, Ian received the D.  But he knew from the minute he started he was going to have to work, and did.  He worked hard, and you know what, we saw significant improvement in his writing skills during the course of the course.  And we were proud of that D.

So what is the difference?  The difference was the difference between working hard and hardly working.  You see, he had the capability to be successful in the algebra class and chose not to use his skills and abilities.  He did not use his abilities or put forth the effort.  He did not attempt to live up to who he is or who he can be.  These are core issues to who you are as a person.  This is the ‘hardly working’.

In the English Composition II class, Ian worked hard.  He pushed himself to be as good as he could be.  We saw the effort and how hard he worked trying to better himself.  He worked hard to become better at something and strengthen himself.  We saw that success, the improvement in skills as the semester went on.  He was trying to be the best he could be.  Whether the grade would have been an A or a D, it did not matter.  What mattered was the effort he was putting into it.  That is something to be proud of and is the ‘working hard’.

So what happens in the future?  Ian will take both classes again. Probably in the fall semester to get them cleaned up.  I don’t think, ‘hardly working’ will be an issue for algebra again.  He identified the issue and we’ve talked it through.  Ian learned from it.  Now he will work to correct the algebra.  In English Composition class, he will take it again as well, and keep working hard to improve an area of weakness for him.  I am not worried.  I won’t be judging him against someone else or someone else’s standard.  I will be judging him against himself. I know he will do his best, and no matter the result, that is what is important and that will serve him well throughout his life.

Validation

The posting that follows was not written by me.  It actually came to me from one of the professors at the community college that our son, Ian, attends.  It is simply a short writing assignment, on any topic the student wanted to write about.  It was NOT written by Ian, but actually by another student in the class.  I'm not posting the name for that student's privacy. 

The reasons I'm posting this are twofold, and really aren't about Ian or about us (at least the big point, anyway).  I'm posting it because I know that every parent of a child with a disability goes through what we do, that constant fear and self-questioning of every decision we make concerning our child from the time he was born until now - the asking ourselves if we are doing the right things and making the right choices.  Also, I want you to think as well about the point I make in many of my workshops - that our children need to be exposed to the world.  Our children not just learn from the world, but in many ways are ambassadors from the world of  those who have disabilities.  Our children help to teach those in the world around us who have no exposure to the disabled community that our children are people, too, and have something to offer to the world.  Please think about those points as you read this.  To me, this is validation, unbidden, but nevertheless appreciated.   I hope you see it as such in your lives, in the bigger picture, that maybe we are all doing the right things and fighting the good fight.  It matters.  The author did not write this for others to read, but to express something that has made him/her more aware of what it means to be human.  Thanks,   - Mark

Most people just walk around life being normal and not having any worries in the world.  Not all people, but most of the human race just closes their eyes and turns their back to someone in need.  I just do not get how we all can take walking around, looking at the world, hearing and tasting, and every day take that all for granted.  For instance we all can wake up and have a bad day.  Then mope around and complain about our lives when it could be so much more worse.  Let's just say I had a disability and out of nowhere it came about.  I would either be very depressed and not showing expression to live, or I would be thankful for what God has blessed me with and be thankful for what I still have.  That is where my buddy Ian comes into play.  He has the best outlook on life, very smart, and dedicated to his work and schooling.  Pretty much what we should all strive to be.  It just shows how much dedication that people can have.  He is also very inspiring.  For example he drives very well for having a disability, and he is so dang funny.  I cannot even read sign language and the guy makes me laugh so hard.  The other amazing thing is how he can write and use articles the correct way in a sentence.  If anything he has made me think about the way I live my life and how I treat others.  I really cannot say enough about my buddy Ian.  I know one thing is for sure, he shows me every week another example of honesty, hard work, will power, determination, and sheer relentlessness.  My buddy Ian.

Adventure

I’m a lucky man.  Actually, I’m a very lucky man.  You see it wasn’t that long ago, May 24^th to be exact, that I was driving up Highway 89 out of Gardiner, MT on my way to the airport at Bozeman.  It was about 5:30 AM, on a drizzly, cold morning, travelling next to the Yellowstone River and watching out for elk and mule deer that like to use the road but don’t share well with cars, and I was finishing up 3 and 1/2 spectacular days in Yellowstone National Park. 

So what makes me lucky?  Well, May 24^th was also our 25^th wedding anniversary.  And I’m nowhere near Florida with the blessing of my wife, Sidney.  You see, I had been in Great Falls, MT at a conference of Outreach programs, and she knew how much I had wanted to return to Yellowstone.  Her gift to me was permission to spend those extra days and stay, even though it meant I wouldn’t get back home until late on the 24th. My guess is that 99 out of 100 wives would have said, “NO WAY!”   But, you see, she understands how much those few days meant to me. 

Understand, I have a deep and abiding love of seeing new places.  While I’ve been to Yellowstone before, it has never been in the spring.  That is the time if you enjoy watching wildlife to go.  I spent my time happy as a clam, I saw more Grizzly Bears, Black Bears, Bison (many with newborn calves), and Elk than you could count.  I also saw Bighorn Sheep, Coyotes, a Badger, and of course, my favorite, the Wolves.  There is something about watching a Grizzly move a 300 pound Elk carcass around like you or I would move a hamburger around a plate that does put things in perspective.  There is a reason the place has been termed the Serengeti of North America. 

So, what does any of this have to do with Special Education or raising a child with disabilities?  In my mind, plenty.  You see our son Ian has the same bug I do.  He wants to go new places and see new things.  That desire will help take him far – not just geographically, but in life.  He wants to get out of the house and experience life.  He wants to explore and travel, to experience new things.  I’ve talked in the past about Ian’s perseverance, but perseverance without a reason for it doesn’t get you anywhere.  Ian has his list.  Australia, Denali, Hawaii, Belgium (particularly Bruges, because the town just may be the chocolate capitol of Europe, with 85 of some of the best chocolate shops in the world), and a horseback pack trip into the Hoodoo region around Yellowstone – supposedly the most remote area in the lower 48 states.   We’ll see how many he gets to in the future and how the list changes.  But the important thing is that there is a list.  If nothing else, we’ve given him the drive to get out of the house and go places and deal with the world as it comes.  That is a good thing to have given him, in my mind.

We took another step this past weekend as well in terms of new experiences.  It was a local one, however.  You see, Ian spent the weekend home by himself for the first time.  One of his friends from high school was in town, so they spent the weekend together  - a guys’ weekend so to speak.  Things went well.  Hard for me and Sidney, but great for Ian.  Our biggest concern was when Sidney briefed Ian on the 438 rules I had put together, Ian’s question back was, “so it is ok to have girls over, since you did not have a rule against it, right?”  Rule number 439 was rapidly added to the list.  But the big thing here was another one of those big steps into the wilderness of adulthood.  Another test passed, and another adventure had. 

See, the dirty little secret is that most of life is an adventure.  You don’t really know what is coming around the corner, whether it is on a trail in Yellowstone or 2 blocks from home.  The trick is figuring out what to do with whatever situation shows up at that bend.  Is it a Grizzly, or just another hiker?  You can’t control it, only use your smarts and respond appropriately.  But I’m a happy man, because for my son, as for me, we really want to see what is around that corner.  I used a quote from Antoine Saint-Exupery not too long ago in an article that basically said that you don’t build a boat by issuing orders.  You build a boat by helping those around you long for the immensity of the sea.  Think about it, and think about how it applies you your child.  I believe that it is an important part of being a child – and also an adult – all that wonder and discovery.   So teach your child.  Help them want to experience the world.  Get those first steps underway, because they will help take your child where he or she wants to go in the future.