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.

Parents and Patience

Patience is probably that one tool in the special needs parenting toolbox that we all strive for, but probably have the hardest time fully grasping.   Why?  Many reasons, honestly. 

We all look at our children and want them to be able to do the same things the other children are doing.  We want them to be participating like the other kids and being able to enjoy things in the same way that the others are.  We become frustrated as parents for our children.  Notice I am not saying ‘with our children’ but ‘for our children’.  All of us, at one time or another, have become very frustrated, upset, or however you would want to describe it, at watching your child struggle to do something whether it be homework or play a game or event interact with others in ways that you see other kids doing.   It is HARD to watch sometimes without feeling like the world is collapsing around you out of fear/concern/worry for your child.

Let me give you an example.  The Boy Scout troop here at FSDB is a mixed troop – we have young men who are deaf or hard of hearing and we have young men who are blind or visually impaired.  They do everything any other troop does, just with some accommodation for their sensory loss.  A couple of years ago I had a very smart young man join the troop.  He is blind.  He only stayed with the troop about 3 months, then one day just stopped showing up.  He is a day student (does not live in the dorms on campus, but lives locally with his family and attends the school).  Dad had been bringing him and even volunteering with the troop.  When I contacted the family to find out what was going on, mom told me that the issue was dad.  Dad had become incredibly frustrated over watching his son try and do the knot tying work that all scouts do.  Now I will tell you that yes, learning to tie different knots is difficult for a person who cannot see them, but no more so for a person with motor skill issues or for some of us who just can’t tie knots if our lives depended on it.  Unfortunately, in this case, dad saw it as an issue with vision.  It bothered him so much that the dad just could not come back, and as a result, this particular scout wound up dropping out of scouts. 

You may ask what this dad was thinking, but if you are a parent of a child with special needs, you will probably understand.  For myself, I think back not too many years ago to when my son Ian decided he wanted to run track.  As many of you know, Ian is deaf and has motor skill issues.  Well, at his first track meet, I remember sitting as far to the back and as far to one side as I could get in the stands.  Not because I didn’t want to watch, but because I was terrified I was going to completely lose it in front of everyone.  I didn’t, but I sure came close.  I don’t know how to explain the mix of feelings, that were running – between pride of his accomplishment, to fear that he would fall, to overwhelming relief that he was able to run, especially since there was a not too distant time when we didn’t know if he would walk.  Today, 3 years later, Ian is still running.  His times have improved greatly from that first year, and now there is a student from the blind department here at FSDB who also has similar motor skill issues.  The coach always arranges for them to run in the same heats in the 100 and 200 meter sprints.  And do they compete with each other!  And they are good friends.  For both, it isn’t about winning (though they certainly like the bragging rights for that week), but about how much their times improve.

Our society is also very time-driven and to-do list driven.  I’m sure all of you will agree that part of parenting a child with special needs is realizing that the clock moves differently for our families.  Patience can be sorely tried as you watch the clock continue to move.  Often, the simple logistics of going anywhere can take what would be a short trip and turn it in to a ½ a day.  It is hard not to become frustrated as you watch the clock move.  When that starts happening it is hard to just step back and wait.  When Ian was little and we were going somewhere, we used to plan our day, then either take what we planned on doing and cut it in ½, or we doubled the amount of time we would need.  We just knew that was our life.  Still it is hard.  Stop watching what your friends are doing or what the Joneses down the street are doing.  Step back and think about what you are doing and how that is working for you and your family.  This is one of those cases where, for me, I try to remember what Lewis Carroll once wrote, that “One of the secrets of life is that all that is really worth the doing is what we do for others”.  Maybe you don’t get everything done that you want, but enjoy doing what you can and help the rest of the family enjoy it and appreciate it.  That will mean more than the extra stop you didn’t have time to make.

Then there are the meetings and paperwork, trying to get to doctor’s visits or to school for an IEP or other meeting, and often having the sensation of being a gerbil on a giant wheel, running and running, while never getting anywhere, and you ask yourself, ‘where is the progress?’ and ‘how do we ever get to the point where it feels like some of this is really making a difference?’  In many ways, this kind of patience is often the hardest because it is one that we as parents feel we have the least amount of impact in the process. 

So often in these situations we have to trust the opinions of others that we only know from school or from a meeting or meetings that happen a couple of times a year.  You work with the school, for instance, expecting to see progress and (in your mind) none results.  A very hard situation to be patient in….  I know, I’ve been there.  When Ian was in elementary school – first grade, as a matter of fact - I will never forget talking to his Occupational Therapist and expressing how frustrated and how my level of patience had worn down.  I was not seeing Ian progress with the academics, and wanted to see it happen NOW.  As we talked, she said something that stuck with me.  To paraphrase it, she told me that he had made a lot of progress.  And yes, it was very hard to see, and no, most of it was not academic.  But, she and the Physical Therapist both were at a point where they were happy, because they believed that Ian was finally, physically, at a point where his body was ready to learn.  Basically, all the years at that point, in preschool and early intervention, etc. had been used to get Ian to a point where he was controlling his body and not the other way around.  Now, finally, we were at a point where he could begin to really take in the education.  You know what, they were right.  They did know what they were doing, and were working in Ian’s best interest.  It wasn’t until after the fact, that looking back, I was able to see the progress he really was making and how much that meant as we have moved down the road of his life.

Finally, and especially for the parents of younger children, there is the desire for answers and the wish to know the future for our child.  We all want someone to say us that we can stop worrying because this is what WILL happen in the future, that the choices we are making are the right ones, and everything will be ok.  We want the issues solved and resolutions to questions now, when the answer may take 2 or more decades to fully answer.  Talk about grinding patience into dust under the heel of a boot! 

Every year I will talk to several parents who are just at their wits’ end with worry because they just want to know everything will be ok for their child when he/she becomes an adult.  Unfortunately, there is no way to know the future.  There is no answer available now for what the future truly holds.  That is hard to accept for many of us, simply because we hope and wish and want to ensure that our children will be able to have decent lives.  Yet, patience is required.  Try to work on what you can now, don’t fret over past mistakes because you can’t change them, and have a flexible plan for the future.  I will tell you that if you asked me when our son was 4 if we would be where we are at 17, I would tell you that my answer would not have been even remotely close to right.   What the future holds is something we cannot tell.  All we can do is have patience, continue to push ahead, and do our best as parents to help our children arrive at adulthood.  Remember what William Wordsworth said, “Life is divided into three terms - that which was, which is, and which will be. Let us learn from the past to profit by the present, and from the present to live better in the future.”  But to follow that advice, you must have patience.

So, on many levels and on a regular basis, our patience is tested again and again.  With such pressure on patience, it is hard not to expect our patience to be weakened or even to collapse all together at times.  Yet, as we talked about earlier, patience is one of the best tools a parent has, and one that when held on to and used appropriately, can have incredible benefits in raising a child with special needs.  Don’t let your patience be overwhelmed by despair or frustration.  You have time, your child has time.  Have the courage to have patience and to use it well. Remember:

“Our greatest foes, and whom we must chiefly combat, are within.”

-          Miguel de Cervantes