Oh the Places You'll Go

 

 

Graduation season has once again come to a close.  I am overcome each year with fond memories of my graduation and excitement for those I love as they begin their journey.  I look back at that moment and remember just how grown-up I felt.  The minute I walked across that stage, I was an adult.  Granted, by law it would be almost 6 more months before I was the magical 18 years old that truly makes one a "grown-up," but I felt as though, going forward, I would be making decisions that adults make.  Where would I live?  What job would I have?  Where would I go to college, if at all?  Who would I date?  What would I eat and when?  You see, when you are 17, those are big thoughts.

But for some, graduation is not full of excitement.  For many, particularly those with significant disabilities, stress and depression sets in.  The routine and support of the school comes to an end.  The time with peers is no longer routine, but forced.  There is a lag between school services and those from other government agencies. 

It doesn't have to be this way.  Communities, employers, and colleges do want all people to be welcomed and valuable members of society.  ALL people.  Granted it may take more planning and thought and the participation may look different but it is possible.  You see, Dr. Seuss wrote his book for everyone.  Let's all build a dream together and make his words come true.

What do you think?

From the Movies

 

The right side of my blog includes books and movies that portray a character with disabilities in a way that I think gives us a window in which to increase understanding.  One of these actually contains several characters, men actually. 
 
The Boys Next Door tells the story of the men who live in a group home and their social worker.  These men each have their own personalities, passions, and fears.  They are portrayed with grace, dignity, and a little humor.  After all, isn't that what all people are, a funny, serious, happy, fearful being trying to make sense of the world?
At one point, one of the characters has to attend a court hearing.  He is doing his best to answer the questions as they are asked, and in many ways is doing a great job.  But here is when the magic of Hollywood takes over.  The lights fade out leaving a spot on the character.  Suddenly, he is able to say what he wishes he could to all of those who judge so harshly those who are disabled.  He tells you why they are afraid, and full of hate when faced with "someone different."
 
I would like to give you that clip, for the whole script, look for the script by Tom Griffin, it's worth it.  I will warn you, it was written when the R-word was used.  We are still battling it, but that is another post.
 

Act II:

 

(Silence.  Lucien buries his head in his hands.  He cannot continue.  Clarke only watches.  Slowly the lights change until Clarke and Jack are in darkness and Lucien is in full focus.  He looks up.  He stands.  He is no longer the retarded Lucien, but rather a confident and articulate man.  He takes the floor.  To the audience, the Senate.)

 

I stand before you, a middle-aged man in an uncomfortable suit, a man whose capacity for rational thought is somewhere between a five-year-old and an oyster.  (Pause) I am retarded.  I am damaged.  I am sick inside from so many years of confusion, utter and profound confusion.  I am mystified by faucets and radios and elevators and newspapers and popular songs.  I cannot always remember the names of my parents.  But I will not go away.  And I will not wither because the cage is too small.  I am here to remind the species of the species.   I am Lucien Percival Smith.  And without me, without my shattered crippled brain, you will never again be frightened by what you might have become.  Or indeed, by what the future might make you.

 
You see, it's not hate, it fear.

 

Never Say Never

So many parents and family members have had to hear the news, "I'm sorry, your child has________"  This is often followed by a litany of statements beginning with "never" and "can't."

Your son will never be able to...
Your daughter can't....
You can't expect...
She never will...
He won't ever....

But this is doesn't have be the way it really is for your child.  I have been blessed by so many families who heard all those nevers and can't and responded with, "you want to bet on that?"

This young man lives in one of those families.  His parents were told he would never talk, it says so in all the medical texts in relation to his syndrome.  His pallet is misshapen but he doesn't "have the capacity" anyway.  His mom and dad had the courage and strength to not listen to the medical textbook, but rather, to listen to their son and their heart.  You see, he was constantly attempting to talk.  They got him a Vantage and he could use it to talk more fluidly than the salesperson but still, he wanted to talk with his voice. 

So, his parents set out to find a doctor that would try to repair his pallet.  They were judged by so many to "be in denial" or "refusing to hear what we know from medical science."  But still, they moved forward.  They had to travel several states away and spend the summer in a hospital and then rehabilitation and therapy, but they did it for him.  6 short months later, the journey was rewarded beyond anyone's hope.  Or at least, beyond the hope of those on the outside looking in.  For his parents, they were not surprised, just grateful.

Do you want to hear what love, courage, and strength sounds like?

Making a Living

What do you do for a living?

This is an icebreaker, form of introduction, status determiner, sense of camaraderie, or a way to kill an awkward moment but is it a good question?

Here is one problem I see with this question; it only addresses a very small part of our lives.  Let me break it down in mathematical terms, there are 24 hours in a day and only 1/3, or 8 are spent at work for only 260/352 days for approximately 40 years of a life average of 80 years (I rounded up slightly to make it easier to compute).  Therefore, our working lives are:

1/3 of each day * 260 days * 40 years =

4699.2 days of a 28,480 day life time

or 16.5% of a lifetime

I was shocked by this math!  I thought the answer to that question was one to aspire towards.  IEPs are designed to answer this question at the age of 14 with the work prior and after focused on helping the student secure "a living"  All the hours the IEP teams I have been a part of should count for more of a person's life than 16.5%.  It is time that I ask a better question,

How do we design a life?

If Only...

This summer break I have spent reading and working on my house as so many teachers in America so I haven't posted as much as I would like but do I do have another quote that goes out to all my colleagues.  My own thoughts will be coming soon.  Happy Summer!

http://drpinna.com/wp-content/uploads/2012/12/CrowdedERWaitingRoom.jpg

"If a doctor, lawyer, or dentist had 30 people in his office at one time, all of whom had different needs, and some of whom didn't want to be there and were causing trouble, and the doctor, lawyer or dentist, without assistance, had to treat them all with professional excellence for nine months, then he (she) might have some conception of the classroom teachers job."

Donald D. Quinn

Goethe Said It Best

My philosophy of life in 2 sentences, thank you Johann Wolfgang von Goethe

Treat a man as he is and you make him worse than he is.  Treat a man as he has the potential to become and you make him better than he is.

Labels, Diagnoses, and Definitions

There are campaigns to remove the "R Word" from common language.  This word, for those who are not certain is, "retarded."  When I started in my career, it was a commonly used term.  It was medical or diagnostic when referring to a student's learning difficulties.  The grief parents endured once their child was diagnosed as "retarded" was the same as the grief that parents today go through when their child is diagnosed "severely delayed," "cognitively impaired," "developmentally delayed," "highly impacted by autism," or any of the numerous other diagnoses that say to a parent, your child is not "normal."  The word retarded was not a problem when used medically, the problem was, it became a derogatory word to indicate that someone was an idiot, useless, not worthy, beyond stupid, horrible, or any other negative thing.

Please understand, I am not asking that we keep the word in our vocabulary any more than I am advocating for any other derogatory word to refer to people or communities in a way that places one person higher than another.  We all have weaknesses things we see about ourself each time we look in the mirror and hope no one else sees it.  We all also have gifts, and if we let them, this is what people will see.  But that is another post, another time.

The real problem with the word "retarded" is that, even if we use other terms or phrases, people will still hear "retarded."  If I say to a parent that their student is Intellectually Disabled, they aren't hearing a different story.  Telling your friends that your child was diagnosed "severely delayed," doesn't mean they think it is okay or that the grief they feel for you is any less.

As I see it, one of the problems with the word "retarded" is that we simply don't understand it.  We really don't understand any of these phrases, terms, or diagnoses.  I had a professor during my undergraduate degree in Special Education who challenged us to define the, then prominently used diagnosis, Mental Retardation.  It was fascinating how it was used in books, articles, research, the medical community, the education system, the federal laws, and households and yet, no common definition existed.  It was one of the most memorable assignments and activities I have ever participated in, still.  States and local education units are still trying to do this for all the different labels we use to determine eligibility for services and supports.  You see, people can't be placed perfectly in boxes.  They don't fit labels perfectly.  It is not an exact science.  People are dynamic individuals, whether they are 6 months or 6 years or 60.

So why figure it out?  Because the definition a person has for the diagnosis, label, or category of service   drives the grief, celebration, inclusion, and education of that person.  If the teacher and the parents can talk honestly about what that child's "label" means to them now and in the future, they can then, and only then, work as a true team to support, encourage, and educate that child.  I am not perfect, but I try to have this conversation with each parent, teacher, and paraprofessional that works with a child.  I have more work to do in this area, but I am trying.

To that end, here is my attempt at a definition in regards to the identification and education of children with the diagnosis of what is now referred to as Intellectual Disability.

Intellectual Disability is an impairment in functioning in a social, academic, home, communal and vocational environment due to a neuro-deficit that may be caused by a variety of physical problems or traumas.  Intellectual Disability is a changing, or dynamic, condition and therefore, the settings the individual is in should not limit or restrict growth or exposure to ideas.  Any program or training for the individual should be written for their current needs with the belief that they can and will meet or exceed expectations.

Do As I Say AND As I Do

Today, I was haunted by my own words.

Let me set the stage…

I am a firm believer in learning everyday and growing as a person.  I believe this so much that I try to model it for others.  This year, I have challenged myself to a physical completion that is 50% physical, 50% mental.  The mental part, for me, is believing that yes, I can do it.  I have told people I am doing this competition so I will follow through and have been overwhelmed by the support.  I even have a student who wants to come watch me. 

Today as I was chatting with his mom, we talked about how my training is going and I said that I am glad I am challenging myself but that I hope I can do it.  That’s when it happened…

“Would you let my son say ‘I hope’?”

Caught busted!  No, my students need to know they can and so should I.

“You’re right, I will.”

Thank you so much to that family for reminding me that I need to model not only challenging yourself, but believing in yourself.

Ripple Effect

I was in this great coffee shop today in a small historic town.  My husband and I ordered our drinks and then sought a table.  We passed a gentleman who uses a wheelchair and had a Dynavox attached with a mount.  My husband and I were thrilled to see him out in the community for we are both aware of how many individuals with physical disabilities become home bodies after high school for a variety of reasons.

My husband and I enjoyed our drinks and talked for a bit.  Then the true magic occurred.

The gentleman I spoke of backed up to the service counter and started talking to one of the employees, (without his Dynavox), and the employee talked back to him as a peer.  I wish I could express in words the magnitude of this conversation.  Ask an individual  who has a significant physical impairment or loves someone whose physical impairment is such to require a wheelchair and talker and they will tell you, this is not something experienced every day.  For some, it is only experienced within their own family, and for some, not even their whole family.

So often, individuals who are physically impacted, as is this gentleman, are spoken to as though they are eternally 2 years old.  The tone, voice pitch, and word choice, while meant to include the individual, are often degrading and insulting.  These are your peers, not your children.

In this coffee shop, they know that and for that, I'm eternally grateful. Maybe they are the pebble that dropped and the rings of knowledge will spread.

Those Who Can

A small gift to all the teachers in the world.

Those who can - make failure bear fruit,
bring fruit to seed and plant seeds
for tomorrow.

Those who can - turn injury to endurance,
endurance to dreams and give dreams
substance. 

Those who can - shape hate to awareness,
awareness to grace and crown grace
with compassion.

Those who can - massage fear to faith,
bend faith to courage and sculpt
courage into wings.

Those who can - subdue chaos with meaning,
define meaning as light and translate
light to vision.

Those who can - give knowledge reason,
fashion reason into tools, use tools as keys
so that doors become opportunities.

Those who can - give charity character,
invest character with strength and
free strength to ministry.

Those who can - define love by their acts,
spin their acts to hope and with hope
give children a reason to celebrate.

Those who can - teach.

Written by Gavin Kayner and published in Teaching K-8 March 1993
as true today as then

Children

I am a teacher but not a parent.  I have had the luxury of learning from children and parents through our conversations, shared moments and by observing and have noticed a few things.

When you have a child with a disability, you can't just go to a neighborhood bar-b-que and leave with insight as to how to be a better parent, stop tantrum, or hide vegetables in their dinner.  In fact, the very act of going to the bar-b-que is a stress.  How will my child react?  Will they have any of the 5 foods my child is currently eating?  What if they play a song on the radio that causes a tantrum?  How will I change their diaper at someone else's house?  Will there be any people at the party that haven't met my child?

I don’t have the answers.  I don’t have a quick and handy phrase you can say to those who don’t understand.  But maybe, parenting has more similarities than we originally thought.

Children can try your patience, make you laugh, keep you up at night, occupy your heart and worries, make you dream, hope, and believe.  They can capture us with a smile, a breath, a tiny moment.  They can also push us to a point of tears and frustration and we try to give them comfort and love only to have them still crying and upset.  You hear of parents who are so stressed and frustrated that they hurt their own child in ways we can not fathom or ignore them to avoid hurting them.  We also hear of parents who make sacrifices of food, water, safety, and security; sacrifices that most of us will never be faced with, for the love of their child.

A child with a disability is no different in that regard.  They will challenge their parents in ways that aren't found in popular parenting books.  These parents will laugh and cry, celebrate and worry, just as all parents around them.