Travelling with Disabilities - the National Parks

There are 394 national parks in the United States, and they are as varied as you can imagine.  There are large parks, small parks, rural parks, and urban parks.  They are also available to families of children with disabilities.   Parks include the National Mall in Washington, DC, with its monuments and surrounding museums, Yellowstone, Fort Sumter, Gettysburg, Mount Rushmore, and Abraham Lincoln’s birthplace.  There are parks of every possible size, shape, theme, and location.  With planning, all of them are accessible to people with disabilities.  They are also fun and educational, and they are perfect for families.

What many people do not know is that there is a special pass, the Golden Access Passport, that is available to people with disabilities.  It is a lifetime pass that free to citizens or permanent residents of the United States who are blind or permanently disabled.  This passport provides access to national parks, monuments, historic sites, recreation areas, and national wildlife refuges that charge an entrance fee.  The passholder and all accompanying passengers in a private car when admission is charged by vehicle; or spouse, children, or direct family members when individual admission is charged, are admitted free.  It also provides significant discounts for camping and other services. A person with a disability simply needs to go to any park, present some documentation of the disability, and request the pass.  It looks much like a credit card. 

I mention this because our son, Ian, has had one since we found out about it.  He was about 3 when we got it and it has been used extensively.  He keeps the card in his wallet, and when we roll up to a park entrance, he presents it to the ranger at the gate and in we go.  For a family with a child who has a disability, this can be a nice money saver. 

Now, are you wondering what you can do in the parks with a child with a disability?  Honestly, plenty.  For instance, I can’t remember a visitor center that does not have a captioned or accessible movies, or interactive exhibits of some sort.    The Park Service has done a very nice job of making many of their parks very accessible to visitors.  Even at places like Yellowstone, there are walkways and even accessible camp sites in some areas of the park.  Places like Old Faithful and the geyser areas have walkways around them.  Bathrooms, even when far afield, are wheelchair accessible.  Now, can you get to every spot in the park?  No, but you can access enough of the areas of the park to have a full and enriching visit.  That being said, these parks are still wild places, places where animals roam free.  Can you see them?  Yes, often from the car or from pull offs along the road.  You may not be going backcountry hiking, but neither do 99% of the other visitors.  There are no guarantees, but for the average visitor, having a disability does not prevent you from having as good a visit as any non-disabled visitor.  And who knows, your family may actually learn something and have fun. 

Like anything else, do some pre-planning.  If you camp, don’t arrive and expect to get a campsite, much less a campsite that is accessible.  Contact the park in advance, make a reservation.  Research the park you are interested in visiting.  Find out if there are areas that may not be accessible or things you need to be aware of.  However, that is just basic planning and common sense. 

Bottom line, there are tons of National Parks and they all have different focuses.  I am sure you can find one or more that suit your and your family’s tastes.  They are enjoyable and educational places, and often quite accessible to those with disabilities.  Give it a try.  We have, and we continue to be surprised by what we find.

Travelling with Disabilities to Disney - or Winnie the Pooh’s Near Death Experience

The first time we went to Walt Disney World with our son Ian, we approached the trip with trepidation.  We didn’t know how Ian was going to manage in a park as big as Disney.  We didn’t know how he was going to do with rides.  We didn’t know how accepting Disney was going to be about a child who is not only deaf but has cerebral palsy. We should not have worried. 

That first trip (and many others following) have led my wife and I to conclude that Disney is, with proper planning, one of the friendliest places to go for a family with a child with a disability.  Cheap it isn’t, but based on personal experience and many conversations with other families who have a child with a disability as a member, I really have not heard any ‘horror stories’.    Disney and its staff seem to go out of their way to watch for, assist if needed, and do everything in their power to give children with disabilities and their families as good an experience as they possibly can. 

Now, if you are going to Disney, you do need to do a little pre-planning.  For instance, when you enter the Magic Kingdom or any of the other parks, go to the guest services office. They can assist you with information about navigating the park and making sure other park employees can identify that there is a special need involved.  This can allow access through handicapped entrances to rides and shows and cut down on wait times for the child and the child’s family.  Sometimes this alone can help make an experience so much better for a child with a disability.  Disney also interprets some shows at different times of the week.  Guest services can help identify those kinds of things as well.  Do NOT expect wheelchairs to be available without a reservation!  They do go fast. 

If you are staying at one of the park hotels, make sure that the disability is noted on the reservation.  The person can often advise on which hotels are the best fits for certain disabilities.  For instance, the Animal Kingdom Lodge’s pool entry is a sloping, zero barrier pool, as opposed to the standard pool ledge.  Take the time to talk to a Disney reservation agent about your concerns when booking.  They will do what they can to assist you and flag any issues on the reservation so the hotel will know in advance.

I want to reiterate, if you are going to Disney, do some advance planning.  The parks are huge.  Don’t try and do it all in one day.  Take breaks, especially in the summer, as Orlando can be stifling hot. It will keep the exhaustion and stress levels down, and make for a much more pleasant experience.   Get a guide book before you go.  Read it!

As a family, I can say that we have many, many very fond memories of our visits.  The one that always sticks with me, however, is the first time we went, and then 4 year old Ian, still using a posterior walker at the time, broadsided Winnie the Pooh at a dead run.  I thought he had taken Winnie out, as Winnie swayed on the verge of going down.  All Ian was trying to do way hug Winnie, who was Ian’s favorite character at the time.  Winnie’s response, and that of the handler, set the tone and let us know that it was all going to work out.  The handler, having finished stabilizing Winnie, was laughing.  Ian was still hugging on to Winnie.  Winnie turned to Ian, threw his arms out, bent, and hugged him back. 

And Ian’s two parents, who had spent months worried about how this was all going to work, just about lost it right there with the realization that all was going to be right with the world for a little while.

Family Vacation Planning - What to Think About

Many of you who know me, or who have read our OSBD newsletter know that I’m a big believer that all children benefit from going places and doing things.  Bottom line, all children should get outside the classroom and outside the home to go do things, experience things, see things and touch things.  It gives kids the ability to put a better reference on their world while opening them up to new interests and opportunities.  I truly believe that getting kids out in the world helps them learn and make those connections that will help them as they grow.  I especially believe that this applies to children with disabilities.

We have always traveled whenever we have had he opportunity.  When Ian was born, as I’m sure you remember, had a few medical issues.  When they had either resolved or stabilized during his first year, we made the decision that he was going to have the opportunity to travel and see as many things as we could arrange.  Both my wife and I had grown up in families where we went on family vacations, and wanted to continue that as well with our son. 

Ian’s first vacation was when he was 13 months old, and he will be 20 in a few months.  Needless to say, travelling has become a part of his life.  Part of our life over the years has been how to plan a vacation that will be fun, stress-free (or at least as low stress as possible), and allow us to see, do, and learn.   With that in mind, what follows are some things we’ve learned that make our trips easier that hopefully you can use in planning your trips.

First, you can go pretty much anywhere you want with enough preplanning.  If you don’t wait until the last minute, and you do your research, you can pretty much figure out how to make most activities work.  Also, by starting your planning early, you can contact airlines, hotels, theme parks, tour operators, and just about any group that you might be interested in using.  Did you know for instance that many cruise lines, including Disney, offer American Sign Language Interpreters on some cruises?  Or that Disney has a schedule for interpreted shows at the theme parks?  They do, but you have to do your research to find out when. 

Flying also presents some special considerations.  Ian just flew by himself to visit grandparents in Virginia.  When he made his reservations, he made sure to let the airline know that he is deaf and has cerebral palsy.  That is helpful to both Ian and to the airline.  The airline is able to make sure that their gate staff and aircrew know that they have a passenger that (in Ian’s case) cannot hear announcements, and may need a little bit of help getting his backpack into the overhead bin.  For Ian, he knows someone will be sure tell him when it is time to board and has piece of mind that there won’t be any untoward surprises during the process.

Second, in planning your activities, don’t over schedule.  This seems to be a somewhat American phenomenon.  The vacation as an endurance event….  Don’t do it!!!  One of the worst things you can do on vacation, especially when travelling with a child who has special needs, is to build so tight a schedule that everyone winds up tired and fussy, and on everyone’s nerves.  When Ian was younger, we used to build an initial schedule, then take out about 1/3 of the things that we had on it, and build in a ‘rest’ day every 3^rd or 4^th day.  Sure, we didn’t get to everything, but all those things we did get to were a whole lot more enjoyable for everyone. 

Third, keep your plans while on the trip flexible.  We make a point to keep our trip schedules so they can adjust to how everyone is feeling, weather, and other considerations.   Very few things were cut in stone and unchangeable.  Remember, the idea of a vacation is fun and relaxation for everyone.  Watching some folks on vacation, the old joke about the captain who tells his crew that the whippings will continue until morale improves comes to mind.  Don’t be that captain!

Fourth, whenever possible, involve the whole family in planning.   What do they want to do?  What do you want to do? What does your spouse want to do?  Try and make sure everyone gets a little bit of something.  That way it becomes everyone’s trip.  Also, it teaches everyone a bit of giving to the group and understanding things aren’t only about them.   

Finally, remember to try and have an idea on how to diffuse issues that may arise.  The younger the child, the more possibility things will pop up.  I remember the first time we went to London.  I was not going to miss two things; Westminster Abbey and the tombs of so many of the English kings and queens, and the Tower of London.  Not places a 9 year old would have a huge interest in seeing.  My wife had seen Westminster when she was in college.  So we planned a ‘rest’ morning and I went there by myself while Ian slept until about 11:00 that morning.  Then he was ready to go to the British Museum and see the mummies that afternoon. 

When it came to the Tower of London a few days later, Ian was a bit tired and grumpy when we got there.  Things were not horrible, but not particularly great.  Until we got to Tower Green and the small church where I took the time to explain this was where they beheaded folks who the king was not happy with, and that under the floor of the church were some of those dead people.  Ian’s response; “We are walking on dead people?”  Suddenly the tower became a whole lot more interesting for him.  It wasn’t kings and queens and a large part of the core of English history, but dead people underfoot.  Whatever it took, it worked. 

So, you can make travel work.  Think it through, plan, be flexible, and make it fun for everyone.  You will learn much, and so will your child.

Dads, or Into the Man Cave – Part III

This is the 3^rd part of a 3 part series of articles on dads.  If you are just joining us, I would suggest reading the 1^st and 2^nd articles as well.  In part 1, we talked about dads and their perceptions of their role in the world.  In part 2, we talked about dads and emotion.  Now it is time to take on the final part, and talk about how you can help dad be more involved.

In the first 2 parts of this series, we talked about dads’ perception of their place in the world and how they deal with emotion.  Now we need to move into what you moms need to do to help dads over their hurdles and become more involved in their families, especially those that have children with special needs.

So, where do we start?  First, when approaching a dad who is dealing with the confluence of some of the issues we talked about in those first 2 parts in this series, you moms need to understand that dads must be approached gently.  Yelling, lecturing, or telling us that we need to get our act together or wanting to know what planet we just landed from will have the exact opposite reaction from what you want.  That kind of approach will simply send your man running for his man cave to hide out, and he will start walling off the entrance. 

Let the dad you are dealing with know that he matters, and his opinion is important to you and you value what he thinks (no matter how far out in left field it may be!).  We guys need to know we actually matter when it comes to raising our families!  Try and work with whatever he is willing to give to you.  Believe it or not, dad needs to understand that his input is important in other than a role of protector and provider.  Remember, we will typically defer to you on child rearing and what we perceive as nurturing or touchy-feely roles.  These are things we are not usually comfortable with.

Also express how important he is as a role model for the children, and that you are with him because you value him for all of those things – you two are a team and the situation needs both of you to work together.  The truth is that often, guys aren’t really sure of their place in the family raising role.  They need that reassurance that they aren’t going to look foolish in your eyes or the children’s eyes. 

Get him (gently) to talk about involvement with the child – particularly a child with a disability.  Suggest alternative activities that he can do with the child other than the typical things like sports or other standard activities that may not be available or practicable in every situation.  Get him thinking outside the box and understanding the child looks up to him and wants his involvement and approval.  Again, moms, you have to walk a fine line and not allowing frustration to show through.  

The last thing to do – and this is the nuclear option – is to ask one specific question.  Ask it.  This question has no right or wrong answer, and you may not get an answer at all, but asking it will plant an important seed that will germinate in his mind.  It may take hours, days, weeks, or even months, but believe me, it will be there in his mind and will work on him and drive him to the right response. 

The question is, “Do you want your child to think about you like you think about your dad?”  If he had a great dad, the answer will be yes, and over time he will want to be that person.  If he had a lousy dad, the answer will be no, and he will want to do everything possible to not be that person.   Again, he may never answer you, but he will think.  Just lay that question (in a nice way, in a calm way, in a non-aggressive way) out there, and let it sit.  He will think on it.

Finally, realize that this is not necessarily a fast process.  You might get lucky, but the truth is, it may take time, sometimes a lot of time to get dad moving.  Give him the time, keep encouraging, and don’t give up.  Dads want to do the right thing.  Sometimes it is just hard for us.  Have patience and perseverance.  Keep at it!

Dads, or Into the Man Cave - Part II

This is the 2^nd part of a 3 part series of articles on dads.  If you are just joining us, I would suggest reading the 1^st article as well.  In part 1, we talked about dads and their perceptions of their role in the world.  Now it is time to take on the next part, namely that of dads and how we deal with emotion. 

There is a reason that there is a whole class of movies that are known as ‘Chick Flicks’.  That reason is central to the 2^nd part of the Man Cave.  Simply put, the vast majority of men are not particularly comfortable with dealing with emotion and emotional issues.  We just don’t like sappy movies, and things that might make us want to cry are pretty much verboten.  Remember, nothing that shows weakness is particularly good to most men.  We’re taught to ‘man up’, and be strong.  Remember this discussion in part I? 

Nothing says soft to most men like getting weepy over something.  Being soft is the last thing a man wants to appear as, especially if his male social group is nearby.  Think about it, how many of you ladies maybe dated a man who was all cuddly or hand-holding in private, but was completely different when in public or around his buddies?  I know a few guys who were that way with their girlfriends, and I bet you do, too.  This is that dynamic. 

Emotion is really troubling for a lot of guys as well because it is something that we cannot control and we cannot fix.  For most guys, emotion says something to us that may require us to respond accordingly.  That starts a whole raft of considerations based on dealing with a dynamic most of us have tried to avoid whenever possible and trying to fit it into context of the existing situation.  Not easy for most guys when they are on the spot….  In other words, it puts us in a situation that makes us uncomfortable. 

We also cannot fix someone’s tears.  This leaves us guys feeling somewhat helpless.  We can’t get the duct tape out or the nail gun or the superglue and put things back together.  Remember, we’re supposed to be proactive and fix problems and protect the tribe (see article #1 if you don’t understand this context).  But with tears, we can’t do that.  We have just stand there and try and be comforting.  It makes us feel weak.

Then on top of all this, imagine how it makes him feel if the cause of all this is a child, particularly his child, who happens has a disability.  From the man’s immediate perspective, he can’t fix anything, he can’t take away the grief or upsetting emotion, he can’t make things better, he can’t protect his spouse or his offspring, and he sees all the concerns and fears about the future. 

So what does he do?  He falls back on his upbringing and tries to ‘man up’ and be strong.  He tries to be the pillar of support for his family.  Sometimes this simply overwhelms him.  Sometimes he pulls away into what is perceived as an emotionless shell – that pillar of stone.  Sometimes he tries to drop into those cultural roles we talked about in the first article and provide by working even more.  It is what he knows how to do.  And sometimes, if you are really lucky, he gets it, and is able to work through those issues and be there for the family the way you hoped.  And sometimes he maybe gets part way there. 

Realize, however, that he isn’t in a position where he doesn’t care.  Often, he is in a position where he doesn’t know how to properly express it.

It is funny, when I was dating my wife my senior year in college, my roommate, who was and is a good friend and one of the nicest people you will ever meet came back to our dorm room from a party where he had imbibed just a wee bit too much.  He wanted to do something and I passed on it.  My girlfriend (now wife) was there, and he looked at her and said, “IT IS YOUR FAULT!  YOU HAVE DOMESTICATED HIM!!!”  And then he left.  We laughed until our sides hurt that evening.  The next day my roommate was aghast he had done that and apologized profusely.  We just laughed some more.  Eventually he got the humor. 

I tell that story for a reason, because in the next article, we are going to talk about how you can help dad deal with these issues and become more able to cope with these situations and become more involved in these emotional situations.  But understand, moms, it will be a slow process, and takes smarts and patience on your part.  But we will talk about that in part III.

Dads, or, Into the Man Cave

One topic that comes up in workshops and in conversation on an all too regular basis is that of trying to figure out dads in the special education process.  The problem with this topic is that it is not a small one.  Certainly this is not a topic that can be answered in one quick article in a blog.  So what I’ll try and do is talk about this over several postings. 

I will start by spending some time giving you an idea how us dads tend to think, where we come from with this, and then, finally, how to deal with these issues and help get dad more involved in the special education process.

So let me begin to shine some light for you into the man cave….

In understanding dads’ roles and involvement in families with special needs and in the special education process, you must first try to understand the mindset most men have as they enter this environment.  Think about how we are brought up.  What kinds of lessons are we taught?  I’m not talking about school, but about the education we receive from our dads, grandfathers, uncles, role models, etc. about how we are supposed to act as adult men.  

Men are raised with a core understanding about their roles in a family.  Men are taught that their primary job is to protect and provide for the family.  True or not, in our modern society, culturally we are brought up to do whatever we need to keep our families safe and to do whatever we need to provide for the family.   This education begins very early in our lives and is pervasive.  These lessons are passed down from our fathers and grandfathers.  We also see it in movies – think John Wayne, Lord of the Rings movies, Indiana Jones, on television, etc….   No matter what, we are supposed to protect and provide.

The next thing to understand about us men is that part of protecting and providing for our families is that we are raised not to show weakness.  Call this by whatever name you want, machismo, bullheadedness, stupid, whatever.  Ladies, how many of you have dated (or married) a man who when hurt or sick, doesn’t want to go to the doctor?  How many of you know guys who still talk about how they played hurt or ignored injuries playing sports in high school or college?    The truth is that such behaviors are pretty common and are not new.  Think back on your history; say to the early days of society.  If you are hunting a mammoth or protecting the tribe from a cave bear, showing weakness and hurt may easily wind up making you a target and getting you killed, as well as that which you are trying to protect. 

Now trace forward into some literature.  Read Henry V’s St. Crispin’s Day speech as written by one of my favorites, William Shakespeare in the play “Henry V”.  Henry’s speech to his troops before the battle of Agincourt touches on these themes.  He talks about the honor of shedding one’s blood for England and how other men in England would hold their ‘manhoods cheap” because they were not with Henry and his band.  Henry also talks about how those men with him at Agincourt will be remembered when they show their scars and how no matter what social class his soldiers are from, they will be his brothers.  This is the speech where the phrase ‘Band of Brothers’ comes from.    All of this sounds familiar today when you put guys together and listen to them.  Now, let’s skip forward to our time. 

Anyone ever see the Keanu Reaves movie called “The Replacements”?  It is a football movie.  Near the end, his team needs a touchdown.  His players are beat up and hurting.  The Keanu Reaves character comes into the huddle and says, “Pain heals, chicks dig scars, and glory lasts forever.”  Sound familiar? Pretty much like what Shakespeare had to say, isn't it?

So, what have we learned at this point?  Men’s cultural roles include protecting and providing for their families, and that showing weakness is not a good thing.

Right now, I will leave it at this.  Next, however, I will get into the subject of dads and emotion, and see how this links to what is written above and how that all impacts dads and their relationships and involvement in special education.  See you next time…..

Two new blogs of interest

Hi Everyone,

I wanted to point out two new blogs that our team has started that may be of interest to you.  The first one is named Eye Observer, at http://www.eyeobserver.blogspot.com/.  It's goal is, "to provide an "eye" on Florida as it relates to blindness/visual impairments, technology and educations in small, rural and medium sized school districts."

The second new blog is The Road to Deaf Curriculum, at http://www.theroadtodeafcurriculum.blogspot.com/.  This blog is, "To create a forum where I can disseminate stories about my travels on the road, along with ideas that are shared with me. The vast majority of my time in the classroom as a teacher of the Deaf was spent finding ways to take curriculum written on the current grade level of the student and construct a more accessible approach." and the blog will also, "serve to keep people informed with the latest strategies and technology surrounding Deaf education in the state of Florida. I hope that readers will comment on my postings, sharing their thoughts on topics as well.". 

Anyway, if you interests intersect with either of these areas, they will be worth following.

- Mark

Where the Wild Things (Really) Are

Hi Everyone,  Here is the second article I talked about.  It is tied to the "End of the Marathon" article, so I here it is.  - Mark

Some of you may remember from my article in the last newsletter that we were taking a trip for Ian’s graduation, but I wasn’t going to talk about it at that time, other than to joke that it would be a cross between the Lewis & Clark expedition, Dances With Wolves, and Chevy Chase’s Vacation movie.  Little did I realize the accuracy of that statement.  Let me first say that no one died and wound up tied to the roof of the car and we did not tie the dog to the car bumper and forget about it.

Our son, Ian picked our destination this summer.  He said there were two things he wanted to see.  One was Alaska, and the other was wildlife.  Well, we found an inexpensive cruise out of Seattle through the Inside Passage to several Alaskan ports.  We also decided that instead of flying, we would drive from St. Augustine to Seattle.   After a little more than 8,000 miles in the car, 20 states, and 12 National Parks and Forests, we completed the trip.  And we thoroughly enjoyed it.  This was one of those trips where it wasn’t the destination that was important but rather the journey. Our route took us north through Chattanooga, St. Louis, Kansas City, Sioux City, and then west through the Dakotas, Montana, Wyoming, and eventually to Seattle, Washington.  Coming home led us through Oregon, Idaho, Utah, Arizona, New Mexico, Texas, and the Gulf states.  My biggest fear was the driving time, but that actually turned out to be very enjoyable.  Once you got west of St. Louis, there really was little to no traffic on any of the roads, including the interstate.  And going through the Great Plains and high desert put new meaning into the concept of what a wide, open space is.

Now, why is any of this important?  (You knew this was going to be more than a travelogue, right?)  Well, as some of you know, Ian has now started college and wants to be a cartographer.  This trip wasn’t just for fun.  When we take a vacation, we try to make it educational as well!  First, if you want to work with maps for a career, you better understand geography.  Not just the names of the states, but what rivers can do to a landscape, or how mountains were formed, or understand why there is snow on many mountains in June and July, or what it means to have sunlight for 20 hours a day in Alaska in the summer.  Sure, you can read about it or listen to your teacher lecture or look at pictures, but there is still nothing that teaches better than putting your hands on something and experiencing it for yourself.  So what areas did we hit?  Geography, geology, paleontology, biology, archeology, history, climatology, English, etc., you name it, we were exposed to it.  And you know what?  Half the time you don’t realize until it’s too late that you actually learned something.

So what kinds of things?  Well, in a short, and far from complete survey, the westbound trek pretty much followed the route taken by Lewis & Clark from St. Louis to the Pacific.  That led to much discussion on what it would have been like to walk that trip instead of drive it.  It was an impressive feat, even to me.  Seeing the wagon wheel ruts on the Oregon Trail outside of Baker City, Oregon – these are places where the rocks were worn down into tracks by the tens of thousands of wagons following each other through the years in the migration west by the settlers.  History!  (By the way, if you are ever there, the Oregon Trail Interpretive Center outside Baker City is fantastic.)  One of Ian’s favorite critters is the tortoise.  We have two at home.  On a Ranger hike in Badlands National Park the Ranger pointed out a fossil tortoise shell that was eroding out of a hill in the park – it was ‘only’ 10-12 million years old.  Or the visits to the Museum of the Rockies and to Mesa Land Community College, which both have excellent dinosaur exhibits. (Paleontology!)  Or spending a couple of days on the North Rim of the Grand Canyon, where there is not just that big hole in the ground, but also some ruins of ancient Indian houses. (Geology! Archeology! Geography!)  Or taking a train ride up to the top of the White Pass between Skagway, Alaska and the gold fields – imagine walking that enough times to move 2 tons of equipment if you had been part of the gold rush era.  (History! Geography!)  Or seeing the Mendenhall Glacier, or being in the middle of a herd of 300 bison, or discovering that a grizzly is typically a lot bigger than a black bear (especially when there are no bars between you and them), etc., etc., etc….  The truth is, even as an experienced adult, many of these things are not easy to imagine.  Seeing makes the difference.  Now, what about English?  That was part of everything.  You have to read to understand.  And the desire to understand pushed him to read - all the time.  Interesting how that works….

The other thing that was important other than seeing was doing.  First, let me be clear, as a parent, don’t ever let me hear someone say that a child ‘cannot do’ something because of a disability.  Truth is that yes, there are some times when and some things where this may be the case, but the reality is that there are many, many things that a child with any kind of disability can do with a little research and pre-planning.  On this trip Ian went white water rafting on the Yellowstone River, went horseback riding in the Gallatin National Forest, did a Ranger-led hike in the Badlands, and a host of other things that you don’t normally associate with activities done by someone who has a physical disability.  Remember, Ian has cerebral palsy as well as being deaf. 

The perception of CAN’T is completely wrong!  As we planned the trip, I called places in advance to talk through any issues.  EVERY ONE of the groups we did these kinds of activities with were very open and accepting, willing to accommodate his needs and give advice on how best to participate.  Horseback riding has never been a problem for Ian, but the issue is making sure he has an easy-going horse who will respond and who won’t spook when it sees someone signing.  No Problem!  This wasn’t the first time the organization had someone with a disability ride with them and it went fine.  When we went rafting, the company had an extra hand available to help Ian navigate down the riverbank to the raft put-in (about 40 feet high at about a 50 degree angle) to get to the raft.  Ian sat in front of me (so I could grab him if he started over the side) and paddled like his life depended on it through class III rapids.  He now knows what it is like to get a face full of 45 degree water!  And he loved it.    My point here is that don’t just think you or your child can’t do something because of the disability.  Most likely, they can.  And not only will they have fun, they will learn something.

Finally, Ian (as well as us) had some memories made that will never go away. Did he see Alaska?  Yes, and he loved it.  Did he get to see wildlife?  Yes, tons – Bears, both black and grizzly, long horn sheep, mountain goats, elk, antelope, deer, beaver, bison, prairie dogs, reindeer, humpback whales and orcas, sea otters and seals, bald eagles, owls, and salmon, as well as a whole bunch of other critters.  Ian said his favorites were the bears.  However the one encounter that we always will remember was the one with the wolves in Yellowstone. 

They were the one animal we did not expect to see.  Less than 1 in a 1000 visitors to the park see a wolf.  Most that do see them are seeing them through spotter scopes at very long ranges.  Several rangers told us that they had never seen a wolf in their years working in the park.  Our sighting didn’t require a sighting scope.  In fact the three of us were the only people on a road in the park early one morning when something crested a hill coming towards us down the road.  Then more somethings coming our way. Then it became clear what those somethings were.  The picture of the alpha female is the picture at the start of this article.

It was one of the Yellowstone wolf packs, and they were hunting along the road.  I just stopped the car in the middle of the road and shut it down.  The wolves spent about 5 minutes moving back and forth around the car and into the brush on either side.  They weren’t paying us attention, but were definitely searching the surrounding area.  Our distance at times from them was about 6 feet. (Needless to say, I wasn’t opening the car door.)  They were beautiful and wild and certainly not someone’s pet.  They were definitely looking for something.  They then seemed to find the scent of what they were looking for, moved about 20 yards down the road, and then up into the brush and away.  

This was one of those moments that means something, and to us, one that will stick with us forever.  I’m not usually at a loss for words, but the resulting feeling was and is not one I can easily explain.  I could see it in my wife’s face, and especially in Ian’s, and I’m sure they could see it in mine.  It was a look of excitement and surprise and wonder.  It was a look that you get when something moves from the intellectual realm to the visceral.  We weren’t reading it in a book or looking at a picture or seeing it on TV.  We were seeing it for real.  You see, I could tell that Ian knew, without a shadow of a doubt, and would hold on to the same thing that my wife and I knew.  And for the three of us, it is something really, really cool.

You see, Ian knows where the wild things really are.

End of the Marathon

Hi Everyone,
Just a quick note - This post is actually an article I wrote for our team newsletter last June. It had been a difficult year, as I was dealing with all the changes that would result from the our son's upcoming graduation from high school.  It is the first of two that I'll post related to this particular topic.  - Mark

It is hard to fail, but it is worse never to have tried to succeed

-          Theodore Roosevelt

Because your own strength is unequal to the task, do not assume that it is beyond the powers of man; but if anything is within the powers and province of man, believe that it is within your own compass also.

                                                                        -     Marcus Aurelius, The Meditations

This has been a hard year for me.  The issue has had absolutely nothing to do with work or anything like that.  It has everything with the end of the marathon. 

My biggest problem is that I think way too much.  I’ve never been good at just enjoying the moment.  Instead, I spend time reflecting on what was, what is, and then thinking about what will be.  My wife will ask me, “I see the hairs on your head moving – what is going on?”  You see, the number of hairs up on my head are few, so she can track one or two – kind of like monitoring an earthquake – she says there a couple up there that she uses like a seismometer.  (Remember, she is an Earth-Space Science teacher.)  The more movement, the more concern she has over what is fomenting inside my head and what is going to come out.  Over the last 26 years, she has developed a pretty good feel for my moods. 

You see, I’m the type that enjoys thinking about what ifs and arcane things.  For fun I once spent a couple of days thinking through how we would have been impacted had the Saxon King Harold defeated William the Conqueror at the battle of Hastings in 1066 A.D.  My conclusion was that we would probably be speaking French in most of North America, but Florida and the west coast, desert south-west, and all points south would speak Spanish.  Yes, I’m a history geek, and what is even scarier is I have friends who think like this, too.

So what does any of that have to do with a marathon?  Well, you see, our son, Ian, graduates in a few days from high school.  He will be receiving a standard diploma, and is already signed up to begin classes at our local community college in the fall.  **Author’s note - Ian wanted to go to the University of Hawaii, but his logic revolved as much around nubile young women in bikinis on the beach as it did on educational issues, so he was overruled by parental authority that does not plan on paying for a 4 month vacation in the guise of educational services.**

So, we are still left with the question, if you haven’t figured it out the answer already - What is the Marathon?  If you are a parent of a child with a disability, you will understand.  The Marathon is that slow, steady, never-ending push from the time your child starts school and doesn’t end until they leave school.  This includes that never-ending drip of stress, fear, concern, and worries that move through a parent of a child with a disability.  The never fully answered question of will my child manage to struggle through the always changing mix of classes, requirements, assignments, standardized testing, IEPs, impacts of the disability, and come out in a good place (whatever that may be for the child) on the other side?   There is always the personal second guessing of plans and decisions.  Are we doing the right thing?  Did we make the best decision possible based on the information at hand?  And of course, will it matter?

When the process started, the future looked like it would be an eternity to get to this point.  Looking back, the years rocketed past.  Now, I’m sitting trying to figure out what to do with that part of my universe that literally had become ingrained in its center.  16 plus years of public education stress is beginning to bleed off.  Decompression!  Who knows, maybe some of that hair on my head will now grow back.  There is that sense of what do I do next?   My wife is probably right – I’ll just find something else to worry about.  Tea prices in China have been rising – maybe I’ll look at that to fill the gap. 

For us, educational stress started when Ian was 23 months old, and will be completed when he graduates at 18 and ½ years old.  I can honestly say that not a single day has gone by where we have not at least thought about school and education.   From meetings and discussions, good feelings and bad, highs and lows, all of it has been rolling around inside our minds since the process started.  And now Ian is finally at the end of this race. He has gotten to the goal, and we are beginning to feel something we haven’t felt in years – the feeling of something truly important being accomplished.  A sense of satisfaction and completion of a major task in our lives has started to wash over us, and I think, too, a sense of relief.   My guess is the sense of relief will survive until college starts, and then a different set of concerns will be there.

But there is also, for me, a sense of loss.  This is a time when a sea-change is taking place on so many levels.  Preeminent of these is the transition of my son into manhood.  He is simply not a little boy anymore.  I am missing some of that already.  Ian will not be riding home from school with me anymore.  He will be in college, not here at FSDB.  No more track practices, no more meets, no more mornings waiting for the school bus, as well as a dozen other things that will end or change.  All of these things are things that have become part of our life since before Ian was 2 years old.  For me, that is hard.  There is a sense of loss, of something passing, of the end of an era in our lives.  For me, this is that looking back, and it leaves me a bit melancholy.  And it also leaves me extremely proud, thinking of all the roadblocks and struggles Ian has dealt with to get to this point, and how he has worked through them (mostly) without complaint, just getting it done and moving on.  When I look at Ian, and at other kids like him, I see a bravery and determination that goes far beyond what those of us without any issues can understand. Yet it is an element of these kids that they do not perceive.  It is just who they are and what they have to do to get where they want to go.

For me, there is also a huge sense of anticipation.  There is a feeling of standing up and looking at the horizon and seeing somewhere you that you have never been before, but need to go.  Ian is in this picture with me, and I already see him moving.  He has an idea where he wants to go.  His parents are there for him if he needs us, but on this upcoming exploration, it is far more of an independent trek, one where he is now reading the map and making the decisions.  I read somewhere that the best navigators don’t really know where they are going until they get there.  This may be true.  But now Ian will hold the compass, and set the course on the chart.   While I am excited and happy for him, and proud of his growing independence, I’m also a bit sad about it.  I’ve only seen my father cry twice in my life.  Once when his father died, and the day I got married.  I understand some of that now.  I guess I’m still changing as well.

I’m truly interested to see where Ian’s course takes him.  College is next, then, who knows.  Living in Hawaii is still playing in his mind for the future – Ian says it is the most beautiful place he has ever seen.  He talks of being a cartographer in the future.  But we will see.  Plans change for all of us.  This is now his journey.

One more trip awaits before college, however.  This is Ian’s graduation present.  He has picked our summer vacation destination and he and I have planned it over the last year.  I won’t tell you where we are going because that may turn into another article in a future newsletter and I would not want to ruin potentially good material.  Suffice it to say that in my mind I’m seeing this trip as a cross between the Lewis and Clark expedition, Dances With Wolves, Chevy Chase’s first Vacation movie, and Robin William’s movie RV.    Chew on that combination for a while.  My wife just shakes her head as we talk through the details.  She is going too, to keep us out of trouble….

If you want to build a ship, don't drum up people to collect wood and don't assign them tasks and work, but rather teach them to long for the endless immensity of the sea.

                       -      Antoine de Saint-Exupery

In the IEP Meeting

I get many comments every year from parents who talk about how they hate going into an IEP meeting.  They talk about the sense that they are walking into the lion’s den unarmed and scared.  They talk about the feeling that they know what they want for their child, but are not sure how to effectively express those needs in a way that makes sense.  And they often talk about how they seem to ‘get lost’ during the meeting and walk away thinking about how they forgot to talk about a topic or topic they believe to be important.  So, as a parent, what can you do to help alleviate some of this?

First, make sure you arrive on time.  Arriving a little early is good, too.  This allows you to take a breath and acclimate to the surroundings.

Second, make sure that you have your notes and are organized when the meeting starts.  This will help you in many ways – it will help you find information quickly during the meeting, it will help you be an active and effective participant in the meeting, and it will help you make sure that you do not miss any topics or info that you want presented.

Third, STAY CALM.   Check your emotion at the door.  This is often the hardest thing to do.  I understand the meeting is stressful and is dealing with a very emotional topic, but if you can remain calm you can most effectively represent the needs of your child, your beliefs, the reasons for the beliefs, and discuss everything effectively.  Remember, IEPs are built not on emotion, but on facts and rational thought.  A person blowing up at others or in inconsolable tears is not someone that can work effectively with the group.

Fourth, if you have trouble saying calm, bring a family member, friend, or advocate that can help you and understands the needs of your child and the IEP process.

Fifth, do not go adversarial.  The IEP meeting (and the whole process) works best when you and the other members of the team can work together.  Will there be disagreements? Probably.  And if there are disagreements, say your peace.  But if you can keep those disagreements from becoming personal, then you have a better chance of working through them.  More times than not, you will be able to find a middle ground that will provide your child with appropriate services.  Not being adversarial also helps prevent the digging of trenches and hardening of the lines.  Yelling, screaming, and making accusations at the others in the room helps no one.   You want to keep the group flexible and willing to move.

Remember, the IEP meeting is part of an ongoing process to ensure your child gets an education.  Your IEP team is going to do its best to ensure your child gets appropriate services at school.  There is no real playbook – every child is different and presents a different set of issues that require a unique set of solutions.   Be an effective part of the team working to plan and setup those solutions.