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.

Getting Ready for Your IEP Meeting

Your child’s IEP meeting is coming up soon.  What do you do?  How do you get ready?  Waiting to the last minute, running around and gathering papers, and going in with little to no prep is simply not the best way to go into a meeting that determines the educational services your child needs.  Neither is going in stressed out without a plan.

So here are some simple suggestions on how to get ready to walk into your child’s IEP meeting:

First, sit down and review what you believe is working and not working for your child and create a game plan for yourself for the meeting.  Write it out! Don’t just keep it in your head.  Having that plan will help you stay on track and ensure you don’t forget any issues you want to discuss.  It will also let you think through those issues and questions that may come up. Don’t wait until the night before – do this a month or a couple of weeks before the meeting.  You can revise your plan right up until the meeting, but start early.

Once you have that plan, gather any paperwork you think you will need.  Smart parents keep notebooks.  I prefer the big, 3 inch, 3-ring binders with page dividers to sort info.  You should be sorting and filing information and papers as you get them.  I know – it means taking time and being organized, but it will pay off when you need things.  A week or so before the meeting go through that information and pull out what you need and put it in a binder to take to the IEP meeting.

Organize your personal schedule.  Clear the decks, so to speak.  Make sure that child care issues are taken care of.  Make sure that your work schedule is cleared and you won’t be disturbed during the meeting.  Basically make sure you can focus on the meeting without other distractions.

If you need someone at the meeting with you, set it up.  Make sure they can be there and have planned as well.

Finally, try and relax.  Try and eliminate or reduce your fears and stresses concerning the meeting.  You need to be ready and at your best for the meeting.  Remember, your child deserves your best.

Children Driving Miss Daisy

Hi Everyone, 

What follows is actually an article I wrote a while back when our son, Ian, learned to drive.  The issue of independence came up again in a discussion with a parent, and in talking through their fears, I thought about this article.  With that in mind, I thought it was reasonable to go ahead and print it here now.  I believe it expresses my beliefs about fostering independence pretty well.  And by the way, as you read, think about this.  Ian drives himself to the local community college every week and to events around town.  He seems to be a pretty good driver, based on reports I get from folks who see him driving and know the car.  The independence is invaluable to him….  Anyway, now let us now get on to the blog.   – Mark

No, I’m not talking about the movie.  I am talking about the current status of our family.  And I seem to have fallen into the role of Miss Daisy….

The last year has been an adventure in driving.   I have also lost control of my car.  You see, over the past year, our son has been learning to drive.  While that may not seem to be anything worth noting, what is worth noting is that Ian is deaf and has cerebral palsy.    Oh, and two weeks ago, he passed his behind the wheel test and is now a licensed driver.

So why is this important?  Simple.  The reality of our world is that we are all tied to our cars.  Much of our independence is linked to our ability to travel from our homes to our jobs to the store and to any other place we need to go.  Just think, how would you survive your day if you were not able to drive?  It wouldn’t be easy, would it? 

As parents, as our children grow up, isn’t one of our jobs to help them to be as independent as they possibly can?  Aren’t we responsible to help our children develop the skills they need to live as adults?  We ask the schools to educate the children and give them the tools to be successful in life.  Don’t we as parents share that responsibility to do what we can to prepare our kids?

While it may be scary, truth be told, learning to drive is a major step towards independence for a teenager or young adult.  This is especially true if the child has a disability.  Now obviously, not every person can drive.  Sometimes the disabilities involved create enough of an impact on the skills needed to drive to make it impracticable.  But if your child is able to learn to drive and physically can safely drive, disability or not, then earning a license should be a goal for your child.

As a parent, I know it is scary enough to put a 16-, 17-, or 18-year old behind the wheel.  It is sometimes even scarier to sit next to them.  But don’t let your fears impede their independence.  I am amazed at how many parents I meet don’t want their teenage/young adult children having anything to do with driving because there is a disability of some kind involved, yet their teenager/young adult is perfectly capable of driving.  I’ve heard it from parents of children who are deaf, from parents of children that are autistic, from parents of children with CP, from parents of children who are AD/HD, etc., etc., etc…. 

Was learning to drive an easy process?  NO!  It took work on Ian’s part and on our part.  First, he had to learn the rules of the road and pass the Learner’s Permit test.  It wasn’t easy.  I find the driver’s manual difficult to read myself.  It was hard for Ian.  Then trying to take a written test was more difficult.  Several tries in, he had not passed it.  However, we requested an interpreter to sign the test to Ian, and lo and behold, he passed it easily.  It was a communication issue, not one of knowledge.  It was also amazing at how easy it was to get him to study that particular subject.

Next came about a year of practice.  And we did practice.  We started small, in an area where a developer had put roads and signs in, but due to the economy, had not built any houses.  That way, there wasn’t anything to hit.  The first time he accelerated from a stop, I thought I was involved in a shuttle launch from the g-forces pushing on me.  Ian then informed me that it wasn’t as easy as driving a go-cart at the local place in town. 

After about 10 or 12 practice sessions in that protected area, we were ready to move to the neighborhood street.  I did not tell Ian that I had made that decision.  We practiced for a bit, and then I had him stop at the stop sign on the road leading out.  He asked me what to do, and I said go out.  His response was ‘Out there?!?!?”  Ian actually has done quite well.  We took it slow, starting with little 25 mph streets and progressively moving up.  We did US 1 for the first time at about 7:00 AM on a Saturday.  I-95 was done at 6:15 AM on a Sunday morning.  All times when there was little traffic.   Getting up on the weekends wasn’t fun, but it was something that we had to do.  As his skills improved, so did my confidence in our survival and my car’s survival.  Over the summer, we enrolled Ian in the county’s teenage defensive driving class – a fantastic experience.  They even put them on a wet track to teach them about hydroplaning.  Every child working on their license should go through such a course.  This school year, when I’m on campus, Ian will usually drive me home during rush hour on US 1.  I’m comfortable enough with his skills.  Further, I wanted him to experience this with me, so there is some guidance available if necessary.  That first trip I had to remind myself to breath.  Now, no issues at all.

Two weeks ago Ian took his road test at the DMV.  He passed, and they did not cut him any slack.  He had to pass the same test as everyone else - just as it should be.  Now, he can drive independently to his grandparents’ house about a mile from us.  (It is amazing how many reasons he finds to go down there.)  Probably next week I’ll start sending him to CVS to pick up some small things – it is close, but on US 1.  After that a little further.  And a little further after that until he is going where he wants and needs to go, and I’m not a nervous wreck.  The goal is that by next fall he will be able to drive to the community college or the technical college either here in St. Augustine, or if necessary, up in Jacksonville. 

But in the end, he will be independent enough to get where he needs to go for his future.

Transition Prep

As we move into spring, I start getting a lot more queries about transition, and that move out of school into the ‘real’ world.  So now would be a good time to talk about transition issues.

First, you cannot wait until second semester of a student’s senior year to think about transition.  If that is your case, you need to get moving now!  Many adult services require evaluations and often, going on a service list, and waiting for your turn. You want this process underway or completed (depending on the agency) before your child finishes school. 

Remember, you are moving out of the world of the school being responsible for services and into the world of the now adult child being responsible for requesting services.  There are many kinds of services, everything from Vocational Rehabilitation to Social Security to Agency for Persons with Disabilities, to various group homes to all kinds of other supports.  But you cannot expect a child to walk out of school one day and right into services the next day as an adult without some pre-planning. Also, many of these services interlock and are designed to work together with one another to create a safety net for the now adult with disabilities.  Let’s look at an example. 

Vocational Rehabilitation, for instance, can be extremely beneficial with providing services for a transitioning student with disabilities.  You should be in touch with them sometime during the second semester of the student’s junior year.  There is an evaluation process, and a waiting list for services based on the degree of disability.  You want to get on that list as soon as possible.  VR can be very helpful in setting up college services or helping with jobs placement and/or training.  Also, there is means testing to determine financial levels of support from the agency.  It would be wise to set up that appointment and discuss options with a VR counselor far enough in advance to allow your child to prepare accordingly.

While this is just one example, the same applies to many other agencies  You don’t really want to leave school, only to find that necessary services are not available because you and your now young adult did not take the time to pre-plan and set them up.  Get started now on the planning.  It will make for a much smoother transition for everyone.

Getting Ready for the IEP Process: Some Thoughts and a List

One statement about the IEP process is that everyone seems to accept at face value is that the process is hard on parents.  No ands, ifs, or buts, the IEP process is stressful and often quite emotional for a family trying to make sure that they are doing what they should and that the district is providing appropriate services to the child.  In evaluating issues that have come up with different parents and districts over the years, and from personal experience, here is a short list of some things that parents can do to prepare for the IEP and to help make the process work more smoothly.  While there will still be bumps in the road, I find that doing these things does help.  They do take an investment of time and effort, but your child is well worth the effort.

Remember, these are things you should do to prepare for the process.  I will talk about the IEP itself and what parents need to understand about the meeting in the future.

First, we need to start with 3 basic premises: 

First, you as the parent understand that you have a responsibility in the IEP process to educate yourself about your child’s disability, what it means, what services are out there, and understand that to make the IEP process work successfully for your child, you have to invest some time and effort.

Second, understand that the school and school staff are not your enemy.  The vast, vast majority of ESE staff and teachers want nothing more than to see every child to succeed and often will bend over backwards to try and help them.  Obviously, there are exceptions, but remember, teachers did not go into teaching to get rich.  (If they did, they certainly chose the wrong profession.) They went into teaching because they love working with kids.

Third, you will do all you can to keep the lines of communication open, even if you get frustrated.  Remember the old adage that you can get more flies with honey than with vinegar?  It is true.  If you treat people like a partner, they will usually treat you the same way.  If you treat them like an enemy, don’t be surprised if the individual barricades get thrown up.  (School staff – remember, the same applies to you, too!)

Now, the list: 

·        Honestly examine your child’s strengths and weaknesses

·        Determine a vision for your child (the vision can change over time, but it gives you a reference point)

·        Identify the educational needs to reach that vision

·        Write a needs statement and an alternative list or action plan on how to get there

·        Develop a partnership with your school.  The truth is, in the vast majority of the situations I see, the district wants your child to be as successful as possible, even though you might not always agree on how to get there.

·        Develop an understanding of what programs are offered in your local school district. 

o   If you don’t know or understand something, then ASK QUESTIONS!

o   Remember,  if you are going to be an equal partner in the IEP team, you need  to learn

·        Provide the IEP team / eligibility team with copies of information the school may not have.

o   Medical records

o   Past school records, tests, and any outside evaluations

o   Remember, the school needs to see documentation to consider them.

o   Try to provide them far enough in advance so that the team can have a chance to consider their meaning in the big picture of the child before you walk into the IEP meeting.  (As a parent, I don’t want to be blindsided by new info, and neither do the school folks.)

·        Find out how you and the school can collaborate to support the agreed upon program at home

o   Reinforcement is often critical for kids with disabilities. If everyone isn’t on the same page, often it will create confusion for the child, and slow down gains.

·        Keep notes and records – remember, if it isn’t written down, it did not happen.

·        Organize yourself.  Have a record keeping system.  Treat paperwork like you do your financial or medical records.  That way, when you need to access something, you will be able to.  Don’t wait to do this – it is far easier to organize from the start than from 6 months or a year into the process.

Anyway, this isn’t a complete list, but it should give you something to think about.  As the time moves on, I’ll talk more about different aspects of the IEP process.  But first, get yourself prepared.  Good luck, and get started!

Today Was One of THOSE Days

Today has been one of those days.  We got to spend Sunday morning at the local urgent care facility.  Obviously this was not a planned stop, but not one that was unexpected, either.  First, let me be clear – there was no risk to life or limb.  Everyone is basically fine.  The trip resulted from the Vesuvius-like eruption of a cyst that had developed on our son’s smallish posterior.  Ian is thin.  Skinny is a better description. This is partly due to genetics (not my side) and to his cerebral palsy.  He carries about 2% body fat, though he eats like a bear just out of hibernation.  Sometimes I count our china to make sure that he didn’t accidently wolf one of them down in his feeding frenzies. 

So, how does all this link up?  Bottom line, he has very little fat on his backside, which sometimes results on a little too much pressure when he sits.  The result sometimes is the development of a cyst.  Sometimes they go away by themselves.  Twice now, they have not.  This was the second one.  In those cases, the doc numbs the area, pulls out the scalpel, and incises them.  It isn’t pretty.  Then for the next several weeks, I wind up packing it with special strips to allow it to first drain and then heal from the inside out.

Now for the really important question – Why, Mark, are you grossing all of us out with this story?

The reason is that it got me thinking.  I spent a good deal of time thinking back on past medical procedures and other related things.  In doing so, several things kept popping into my head.  First, over 19 years, we’ve seen the doctor way too many times.  I’m sure there are others of you out there that are nodding your head in agreement on that.

The second thing that popped into my head was just how these kind of medical distractions impact Ian and other kids I see with disabilities.  In many cases, the impact is somewhat more pronounced than it is for a person without disabilities.  Just the additional stressors on the body from insult or injury have to take a toll.  I will probably need to make arrangements to get Ian to and from his classes at community college this week.  Normally he drives without any problem.  But just the added distraction of sitting on the incision is enough to be a real problem for him.  Something like this event would bother me, but it really does impact Ian and his ability to function.  I think sometimes that these things act as that additional monkey wrench in the machinery, just bringing long practiced processes to a halt.   I’m guessing other parents reading this understand exactly what I’m talking about when I talk about these kinds of additional impacts on the child with a disability.

That then led me to the third thing that popped into my mind.  That was how even when there are these medical issues that show up and impact the lives of these kids, how these kids just keep getting right back up and moving on.  I have seen so many kids with disabilities, when something goes wrong, just keep plugging away and moving forward.  Whether it is something like this cyst, or a broken arm, or some kind of surgery, it really doesn’t matter.  The attitude I often see is one of ‘ok, can’t do anything about it, so how do I get around it and get where I want to go?’  They may be down for a while, but usually they just want to get through it and get moving again.

I always think back to when Ian was about 6, and was learning to walk independently.  He was still using a posterior walker to get around.  Anyway, he fell off a bench and needed stitches in his forehead.  He was not happy about it.  When finished in the E.R., he took off in his walker, headed for the door at full gallop.  At the first turn, he promptly rolled the walker.  I took one look.  Mom went and scooped him up, and I looked at the doctor and nurse and said, “please don’t go anywhere with the stitch kit.”  They looked at me and said, “WHY?”  And I told them, “Ian just rolled his walker, and my guess is that he just busted every stitch you just put in.” 

I was right.  This time, Ian got two additional internal stitches to make sure everything held together, as well as replacement ones for those that were busted.  Ian was MAD.  Not about getting stitches, but about the fact that he had places to go and things to do, and all this stuff was just interfering with getting on with his business.    It was, in the great big picture, a little thing.  But I see this kind of attitude with so many kids.  They have the drive and the desire to go and do.  They don’t want to let anything hold them back.  Right now, I’m being told that things in the backside area feel better.  The incision hurts a bit, but no pressure from the cyst.  Ian’s concern is if he can drive this week and what about going to exercise.  This is just something else that he needs to deal with so he can keep moving on.

IEP Pre-Planning

Here at OSBD, I regularly get calls from both district staff and from parents with concerns about IEPs and how to deal with issues that come up related to them.  Involvement, communication, and collaboration are always big topics of these conversations.  So here is something to think about:

If you want to reduce stress both for yourself and for everyone else involved in the IEP process begin conversations early.   Taking time in advance of the IEP meeting to begin talking with the rest of the IEP team about the IEP can help to reduce conflict and stress.   Early communication will also help to develop a sense of involvement and cooperation on the part of all the members of the team.

District staff, that means including the parents in those conversations. 

Parents, that means staying calm and being open to ideas from staff.

REMEMBER – this isn’t manning the trenches in World War I.  You are all supposed to work together.  Be open, and be flexible.  I’ve seen some real good examples recently where districts and parents took some situations that looked like they might turn into the start of a world war, and instead turned them into some very collaborative and successful IEP meetings.  Simply because they all were willing to talk, to listen, and to give a little to make things work.

We all would like for everyone to be on the same page when they walk into the IEP meeting.  Having informal, open, and collegial conversations between staff and between staff and parents about a child’s needs well in advance of the IEP meeting can often have a strong, positive impact on the meeting and its outcome. 

Those conversations help to encourage more involvement and allow for discussions and an exchange of ideas outside of very formal IEP meeting itself.  They allow all parties to get comfortable with what is going to be presented in the upcoming meeting and to begin to deal with any possible changes in advance of the meeting.

Lets be honest, the IEP meeting is not the place anyone wants to have surprises sprung on them.   Use the months leading up to the IEP as a time to discuss how successful existing services have been, progress, what to keep, what to change, and any ideas or concerns the staff or the parents have.  Doing this allows the school the opportunity to involve other support staff in discussions and to discover and hopefully work through any issues well in advance of the meeting.  It also allows parents the opportunity to think through possible changes that may be suggested in a more relaxed setting, as opposed to inside that stressful environment that IEP meetings often are.  Further, these more informal conversations show a desire on everyone’s part to help foster a level of trust and often, flexibility while giving all parties involved time to research any new ideas and requests that may be in the offing.  In the long run, this bit of extra time invested in advance can significantly reduce opportunities for stress and conflict in the future and increase the opportunities for collaboration and teamwork.