Early Steps

Ian was born in Virginia, and that was our home until he was 11.  Not long after his birth, we were contacted by the early intervention program for our home county.  In Virginia at the time, the early steps programs were run through the state health department, with county offices.  After an initial evaluation, Ian was assigned 3 service providers.  He had an Occupational Therapist, a Physical Therapist, and a Speech Therapist assigned to him.  Looking back now, knowing what I know now, it was an amazing devotion of resources and support by the state.  

I can honestly say that I do not believe Ian would be where he is now, and I do not believe that my wife and I would be where we are now in terms of having been able to provide the support Ian needed without those people from the Early Intervention program.  While they worked with Ian, they also had the patience of Job when it came to dealing with two very stressed out and, honestly, frightened parents.  They understood not only patience but had a level of empathy that allowed them to understand and guide us through those incredibly stressful early months and first years of Ian’s life.  For us, just the understanding that we had someone we could talk to and who understood what was going on in our world was so important to us.  For many families, ours included, there aren’t many people who really had an idea what it was like with a young child with multiple disabilities.  Our friends really did not understand what our world was now like, and try as they might, our families really did not get it, either.  

Early intervention is critical for a child with a disability.  Early intervention is also critical for the family of a child with a disability.  While they will not be able to resolve many issues, because disability related issues are not issue that can be solved in a week or a month or even a year, but last for a lifetime, the early interventionists are shock troops of support.  Something like the Marine Corps, in my mind.  Their job is to go in, take a beachhead, get boots on the ground and begin to get the situation under control.  They stabilize that family and point it in the right direction; they begin to knit the service and support network together and to begin getting those services to the child and the family.  Then, once those first few years are over, and things are more stable and, hopefully, the family has its respective head on straight and is moving in the right direction, the early intervention provider hands that child and family off to the school district, where the long job of getting that child an education starts.    Their job is now done, and they move on to the next new child and family needing help.

I know this to be true.  We have lived it as a family.  I know where we were when our family was when we first met our Occupational Therapist.  Her name was Carol.  She happily introduced herself to us, and we talked, and talked, and talked, and talked.  We explained everything we knew about Ian and his ‘history’ to date.  We talked about our hopes, and I’m sure she was able to read our fears and understood our nightmares about the future.  You see, we had a pretty good idea that Ian had cerebral palsy, as well as being deaf.  The deafness did not terrify us.  We had friends who had deaf family who were living successful lives.  The CP, on the other hand terrified us.

I then remember her sitting and listening, and seeing a little, soft smile on her face when we finished.  One that kind of gave you the feeling that she got it, and we could trust her and she would help us.  When she spoke, she said something that neither of us would ever forget, and it was something that began to push us away from the possibility of dropping into the pit of despair that we were looking into.

She told us that she understood, and while there would be a long road to travel, with ups and downs, it would all be ok.  Things would work out for us and for Ian.  She told us that CP was not the end of the world.  She told us that while Ian would have to work harder in his life to be successful, it was very possible, and that he could have a good and successful life.  While there were no promises, all things were still possible for our son.

Then she told us something personal, and something that renewed the hope and began to quench the fires of despair that we were dealing with.  She told us that she had a form of cerebral palsy.  And that her husband did as well.  And she told us that both of them were employed in jobs that they loved and allowed them to live good, solid lives.  Oh, and their son was finishing up his senior year in high school and was being considered for football scholarships.   

There was hope for us, for our son, and a reason to move forward….

First Contact

Ian started school at 23 months of age.  Where we lived in Virginia, preschool started early for children with special needs.  By the time we left Virginia for Florida we had a pretty good relationship with the school, the teachers, and the staff in the district.  

Unfortunately, the relationship between our family and the school district did not get off to a rousing start.  After our first meeting, it took time to heal what was something of a damaged relationship.  The damage to the relationship was started by one comment from one staff person.  We did not really know any better, and under what is a stressful situation for any family – that first eligibility meeting after all the evaluations have taken place – that one comment seriously impacted our relationship with and trust of the school district.  It took time to mentally get to a point where we could actually trust everyone again.  

It did not matter that the bus driver was the equivalent of a mother grizzly bear, who would have protected those children with her life, or the teacher and staff in the preschool class, who were some of the most loving, patient and caring people you could have ever asked for to watch and teach your child.  What did matter, and what had rocked my wife and I to our core was the response to one question of concern for our son that we had asked at that eligibility meeting.  That response was, “What will it matter?  He (Ian) won’t amount to anything anyway.”  It was said by one person as a matter of fact.  No doubt, no maybe, but pure certainty.   

Without a doubt, we melted down.  Our little ray of hope for our son was simply ground underfoot by that one response, and the school system had gone from a lifeboat to a shark circling and smelling blood.  We were now trying to figure out what we could do for our young son, and how would we give him an opportunity when even the school district had written him off.

What we should have known is that the school system had anything but given up.  Everyone worked hard to help our son.  From teachers to aides to therapists and others, uniformly they worked to do whatever they could to educate and help our son.  The reality was the problem was created by one tired, jaded, and nearing retirement staffer who was burned out.  She did not represent the district, or speak for them.  She was that exception.  She was the proverbial rotten apple that had ruined the barrel.  And the reality was that the other staff people present were as appalled as we were, and that woman would never again participate in a meeting about our son, and would never again be involved with him or us.  But as stressed out parents who were trying to make it from day to day and do whatever we could to help our child, we were unable to see that reality.  All we knew was that a representative of the one group that was supposed to help us for the next 15 years had just told us our son was, for all intents and purposes, a throwaway.  

We were just like most every young set of parents in the special needs world.  We were scared and panicky and looking.  And when this happened, our reservoir of trust was emptied.  The sad part of this was that my mother was a senior employee in the county’s central office.  That is how stressful things were – even with a family connection to the district, we still could not trust that district.

This is a cautionary tale, whichever side you are on.  If you are a parent, please realize that when these situations happen, and they will happen, you cannot paint all people in the school or other organization with such a huge brush that you condemn all of them because of the actions of one.  Try and take a deep breath and suppress the anger.  Try and see that bigger picture.  Talk to someone.  Realize that one person does not make up the entire organization, and try to give others a chance.  Over the long haul, you will find that you have many, many more allies than enemies.  If you can survive the insult to your system, you can actually work more effectively for your child with all those allies.

If you are in a school district or other organization working with the families of children with special needs, or working with those children directly, or both, there is a different message for you.  That message is that you must be careful about what you say and how you say things.  One callous remark by one person in the organization can destroy that organization’s relationship with that family.  No organization needs to have that happen.  It makes things that much harder to complete your mission to educate that child and to help that family.   Be aware of this issue.  Make sure you are honest with the families, but even when being honest, remember to be sensitive of the family’s feelings and do not talk in complete absolutes about the future, because as we know, the future is always hidden from us all.

Do Not Be a Sheeple

‘The only thing necessary for the triumph of evil is for good men to do nothing’

-        Edmond Burke

If you are the parent or caregiver of a child who has special needs, do not be a sheeple.

If you are a teacher or professional who works with a child who has special needs, do not be a sheeple.

As a matter of fact, it does not matter who you are.  Under no circumstances should any of us be a sheeple.

I have a friend who has an expression for someone who follows the flock blindly.  She uses the same expression for someone who is more concerned with trying not to make waves and going along with the group, even if that is really the wrong thing to do.  She uses the expression for someone who is not willing to stand up for what is right because of concern over the possibility of personal consequences to friendships or because the person just does not want the hassle of making a decision. It is easier to follow the flock.

That term is sheeple.  If you haven’t figured it out sheeple = sheep + people.

Do not be a sheeple.

In some ways I consider myself lucky.  My father is an ex-Marine who spent 30 years as an elementary school principal.  He is the son of an ex-Marine.  My mother is a former speech teacher who became an elementary school principal.  I was brought up to believe that honesty and directness are two of the most – if not the most - important qualities a person can possess.  My wife, Sidney, tells me often that I am too willing, when someone says or does something that find important to comment on, to go where angels fear to tread, and open my mouth.  I am not talking about being a shouter or being aggressive.  What I am talking about is a willingness to voice my approval or disagreement with an idea or concept that a person or a group may hold, and to explain why.  Am I always right?  No.  But if you can provide me with a cogent, persuasive argument as to your position, I will listen and consider.  Then I will decide if I should deviate my course because of a strong, valid argument.  Now, let’s be honest.  I am human and I am not always right (please do not tell my wife that!)  My perspective on this is that, at a minimum, I have a strong personal compass.  I will leave it at that.  

But what about you?  Do you walk away from situations feeling troubled, like maybe you should have stood up for your belief?  Or maybe have you walked away from a situation where you think that child you are responsible for – in whatever capacity – might really be worse off because you did not speak up?  If you have done that, it is human to want to avoid that conflict.  The truth is that it does happen.  Dissent is not comfortable for any of us.  But, please, think twice for the good of that child.  Is avoiding that feeling of discomfort that each of us may feel during what may be a frank discussion worth the tradeoff of what the actual impact of that particular decision may be on that child?  

Consider that if you can offer a solid, well-spoken line of reasoning, even if that reasoning is the countervailing view in the room, you just may be able to turn the flock. Maybe others are thinking the same thing you are and waiting for someone with the courage to speak up for the child.  You will never know unless you screw up your courage and try.  At a minimum, you will probably walk away with the respect of others, and probably someone saying to themselves that they wish they had the courage to do what you did.  Who knows, just maybe you will be the one who makes the flock turn in a new direction and help its less fortunate members to find greener pastures for grazing.

Do not be a sheeple.

No, it Does NOT Involve a Hippopotamus

When our son Ian was 4, he was using a Rifton walker.  You know, big metal frame, 4 small wheels – one on each corner, two metal rails that came up and bent towards the center, and a padded leather chest strap.  The thing weighed more than he did, but it gave Ian a way to do what he wanted to do. He wanted to move and be upright.  We did not know if he would ever walk without assistance, but at least it got him upright and the ability to move on his own.  About the time he turned 5, he had made progress.  In fact, he had made lot of progress.  The Therapist moved him out of his Rifton and into a much smaller and lighter posterior walker.  It folded up, it was very light, he could actually run in it, and he did.  Lord, did he run.  The denouement came when I turned around at the base of our driveway and looked up the 30 degree slope to see Ian pop up and sit on the back of the walker and promptly ride it straight down the driveway.  It reminded me of those old movies of barrel riders going over Niagara Falls.  That was the point that I truly understood that my mission was changing to one of just trying to catch up to him and keep him from going over the cliff.

Three years later, at age 7, he walked by himself for the first time.  Seven years after that he joined the track team at Florida School for the Deaf and the Blind.  He was never going to the Olympics, but he ran.  He did what he always wanted to do – he ran.  I can never say enough about the schools track coaches at the time.  Simply put, they ‘got it’.

So how did he get from the Rifton to running track? Most of it, honestly, was Ian and his desire to do something.  That has been the one constant in his life.  His desire is a steel that exists in him that you don’t know is there until you really get to know him.  But he had a lot of helping hands.  One of those things was something that we stumbled on by chance.  We were looking for something for a 4 year old deaf kid with cerebral palsy to do.  There weren’t a lot of options.  However, Ian always was (and is) drawn to animals, especially large animals.  One of Ian’s therapists said we should look at hippotherapy, since Ian likes large animals.  My first question was, “What exactly is Ian going to be doing with a Hippopotamus?”  

It was explained to me that hippotherapy had nothing to do with hippopotami, but instead was therapy using a horse as the modality.  My response was ‘OH!’  So we figured we would give it a try.  

Ian took to it like a duck takes to water.  His first lesson, we discovered that some horses do NOT like sign language.  I signed a little too close to a horse named Touch, who was touchy, and promptly reared and threw Ian.  All the adults freaked.  The horse was moved one direction, Ian hustled the other.  When Ian was asked if he was ok, he actually became as indignant as a 4 year old can become, and announced he was fine, he was not finished, and he wanted to get back on the horse, and why did they move it away, he could control the horse.  If nothing else, Ian had confidence in his abilities.  All of the adults also quickly understood we had an activity that he could do.  

So, every Saturday morning we would wake up early and drive about an hour and twenty minutes to the stables.  Early on, Ian and I went without Momma.  When Mom was finally able to join us, Ian and I had a routine.  We were busted big time when Ian looked at me and signed ‘gas station’ and ‘donuts’.  Our ritual included a signed version of ‘men, men, men, men’ and a stop at a gas station that also had a Dunkin’ Donuts shop.  We would buy donuts – Ian usually had 2, often Boston Crème or chocolate glazed, with a Mountain Dew.  I would have a couple of glazed and a Coke.  Not the best breakfast.  My wife was pretty good about it.  I got the hairy eyeball, but it was decided that on these days it was ok, but no more junk for the rest of that day.  Then she asked me for a donut with sprinkles and a large coffee.  

Within a month, Ian was helping to groom the horses and saddle his.  He did not use Touch any longer, but a horse named Skip.  Skip was, for all intents and purposes, a golden retriever in horse clothing.  He was the perfect therapy horse.   Ian learned a lot.  For instance, you do not take your walker and walk under the horse’s belly, even if it is easier to get the belly strap to the other side.  You have to watch where you walk.  He also learned, besides doing a great deal of therapy work, how to rein and how to use his legs to turn the horse, and how to sit up straight.  

Along with doing something he enjoyed, his muscle control and tone improved markedly.  His self-confidence also grew.  Over the course of about 2 years, his skills grew.  His therapist actually entered Ian in an inside the ring horse obstacle course competition.  Ian was going to ride by himself.  No spotters, no guide.  He had to go through and around obstacles, get a letter out of a mailbox, back the horse through an obstacle, and other things.  He did well.  By himself.  He was so proud of himself, as were we.  My parents went to see the event.  My mother was on the verge of needing to be tranquilized.  Ian was not supposed to be able to do those things.  The best part was when Ian finished, the therapist told Ian to take the horse to the other side of the field to the trailer.  I thought my mom would pass out.  

Over those 2 years, hippotherapy was a fantastic success and also turned into a family activity.  After that obstacle course contest, our therapist said that he had maxed out, and he needed to move to regular riding classes.  Ian continued to ride weekly until we moved to Florida.  Then, other things prevented it from being a regular event.  But the effects on Ian and his movement and skills were obvious.  I am not sure he would have walked when he did if not for that therapy.  It isn’t for every child, but it definitely was for Ian.   And all because we were willing to try therapy involving a ‘hippo’ until we found out that really meant ‘horse’.    So, be open to try new things.  Some will be successful.  Some will fail. But the truth is that you will not know if an opportunity is an opening your child needs until you try.  Be open to the possibilities.

I have a number of other stories about Ian and horses.  We won’t get into the time as a teenager that he came flying at a full gallop, on a horse named Tiny, around the barn at a stable where we went riding.  Tiny was a Clydesdale….  My thoughts were ‘dear God, where did they get an elephant?’ and then ‘We’re all going to die….”  But, in the end, we would go living life, and probably with a smile on our faces.