Taboo

Warning, this post contains adult content.

No matter how beautiful, amazing, or smart a child is, they will grow up.  In what seems like the blink of an eye, a small child grows and ages until they become teenagers (screaming in your head “oh, no, not teenagers”).

Suddenly, your wish that your child had experiences like a child without a disability will come true.  They will become a hormonal, moody, grumpy, irritable mess.  Also, you child will respond physically in more adult, hormone driven ways.  They will experience all the discomfort of growing older.  It is now that they need your assistance the most.

Most of us, when our body started to change, wanted to hide as our body responded to the opposite sex outside our control.  I remember panicking that everyone knew I was having my period and young boys that I knew struggled to hide any physical reaction becoming masters of the well placed book, backpack, or hat.  Not all children want to hide.  For some children, they want help and will seek to understand what is happening to their body.  We need to teach them to ask us questions in private.  We need to teach them not to share or show anyone else while at the same time, helping them understand the new hair, smells, and physical reactions are normal.  Despite your discomfort, your child will need factual information and guidance. They need to know, what to do, when to do it, and where.  Teach your child specifically about new routines such as: how to adapt daily hygiene, including the addition of deodorant, pimple cream or skin treatment, or the use of feminine products.  Let them know that they can explore the new shape and curves of their body, which is normal, but that it is a bathroom or bedroom activity when you are home, not at school, the mall, or with friends.  Teach them that they can like boys or girls, but how to greet or talk to those you find attractive appropriately.

Yikes!  Finding someone attractive means they may want to date!!!

Yes, they may want to date and that is a fantastic, scary, and typical reaction to finding someone attractive.  Dating is normal, explaining and preparing for the date is the difference for an individual with a cognitive delay.  I realize that some people would rather an individual with a cognitive delay or developmental delay never date, but I do not believe that is a fair thing to wish.  As scary and difficult as dating was, it is also empowering, exciting, and the path to finding your best friend, mate, and partner.  I want each child I know to grow up, date, fall in love, and find someone they love and care for who loves and cares for them. 

Yes, that includes kissing, and hopefully, when in love and older, sex.  Prepare your child to love themselves so they can love another.  Teach your child that kissing is okay with someone you know and who respects you.  Teach your child about sex, and support and love them while they look for that special love that can lead to a healthy, typical, sexual relationship.

Puberty, hormones, kissing, love and sex are a natural and normal part of life.  We should celebrate when the ”typical” life we have hoped for becomes a reality for those we love, whether or not they have a disability.  While the conversation may be taboo, growing up isn’t.

Think College

www.thinkcollege.net 

Have you heard?  College IS for everyone.

I have spent the great majority of my teaching career at the elementary school level, teaching students ages 5 years to 13 years old.  Kindergarteners are so young, small, and far from adulthood that it is easy to plan for today, not for their adult life.  And yet, if schools are really doing right by students, we are planning for their transition to adulthood from the minute they arrive until their graduation day.

What happens after graduation?  Researchers have been carefully taking demographic, longitudinal, and census information for years to determine the effectiveness of the public school years for individuals with disabilities.  After all, it isn't about a grade, a project, a course, a final exam.  What schools really are charged with doing is preparing future adults to excel at a job of their choice, be connected to each other through friendships and relationships, and be meaningful participants in society.

Sadly, the data indicates that for individuals with disabilities, we have a long way to go to effectiveness.  You see, for individuals with an IEP, less than 1 in 3 will have a job, part-time or full-time, attend post-secondary schools, or vocational training.  Their life becomes a life of seclusion, days on the couch with little to no contact outside their home. This is not a life I would wish for anyone.

Think College is a bright star of possibility.  Grants and funding options help to make this affordable, and at many schools, free, including housing and food.  Students experience the social, academic, and independent living experiences available to all individuals attending college. I recently went to an event for a Think College program near me and was able to hear from both a student in the program and her ambassador.  It was clear to all, they were not an individual with a disability and a non-disabled peer.  They were friends.  Inside jokes, secret giggles, and looks of genuine compassion flowed easily between them.  As I watched, I made my wish that all who want to,

True Colors

It's National Down Syndrome Awareness month!

One young man created the best tribute possible, one from the heart to his sister. 

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?

Gold Medal Winner

I am training for my first half marathon.  There are hundreds of half marathons every year but my friends and I carefully selected the one we are doing, for one very important reason.  After looking at calendars, work schedules, and travel options, we selected our run for the medal they give to everyone who crosses the finish line.

I wish everyone could choose their medal.  What would you do to get a gold medal?  Singing? A sport? Reading?  Gardening? Running? 

I have watched over the years as students tried for a medal presented at elementary continuation to all students who meet the requirements outlined in a 20 page packet on developing a 15 minute presentation about who they are as a learner, and leader.  I have also had the privilege of mentoring students through this process.  About half of my students really wanted to earn the medal and each one put in over 40 hours of work to create a presentation to present to a panel of tem teachers and administrators about themselves.  I have never been more proud than watching them each, take the stage and tell the audience who they are, not their disability, no once, but their strengths as a students and victories within the years they attended elementary school. 

Each time I watched a student be presented with their medal and watched the medal be placed over their head I thought, this is what it is to earn a gold medal.  This is everything.  Everyone should feel this.

Now I am by no means suggesting that everyone get a medal just for showing up.  I believe in earning your reward through hard work and determination.  But I am suggesting that there is something out there for each one of us, young and old, male and female, with or without a disability. 

Maybe it is as simple as seeing a medal that is fun, like the one I will earn at the conclusion of a 13.1 mile run.  Find your medal, go for it, and if you need a cheerleader, I am here.

 

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?

Strength, Courage and Wisdom = Hope: The Sequel

I'm Back!  And better than ever...

I can't believe it has been more than two years since I published Strength, Courage and Wisdom = Hope.  I stated my goals to do more, impact more families, and become the leader that I knew I could be.

Today, I can say, that has happened.  I didn't know where the journey would lead me.  I didn't know then that I would work with an entire team of leaders who are driven by passion, commitment, and dedication.  I didn't even know at that time that you could find a team 100% on board and dedicated.  I'm here to say, those teams are there, they exist, and all of us should be fortunate enough to work with people for whom the time together energizes and excites you.  I wish that for everyone.

Of course, the journey wasn't simple or clear.  It did, after all, take 2 years.  But each day was worth it because I can appreciate the chance I have been given.  So, I'm settling in to my new role and ready to take up the pen (well, okay, its actually a keyboard). 

Thanks for waiting for me, and all the support so many of you have given to me each and every day.  I will be posting more often.  In fact, my next post will capture your heart as it contains an incredible video (yes, this is a teaser as that story deserves its own headline.)

Mrs. G Wiz

The Perfect Play

This video says it all:

You Tube video, at: http://www.youtube.com/watch?v=0Ejh_hb15Fc

Which Wolf Are You Feeding?

There is a Native American tale about two wolves that I think every person should know.  It will help guide you as a teacher, a student, a friend, a daughter/son, a mother/father/, a leader, a follower, and it moments by yourself.

A Native American Cherokee Story – Two Wolves

One evening an old Cherokee told his grandson about a battle that goes on inside people.
He said, “My son, the battle is between two wolves inside us all.

“One is Evil – It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.

“The other is Good – It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith.”

The grandson thought about it for a minute and then asked his grandfather: “Which wolf wins?”

The old Cherokee simply replied, “The one you feed.”

copied from: http://unbelievableyou.com/a-native-american-cherokee-story-two-wolves/

Pilgrims

pilgrim |ˈpilgrəm|

noun

a person who journeys to a sacred place for religious reasons.

• (usu. Pilgrim )a member of a group of English Puritans fleeing religious persecution who sailed in the Mayflower and founded the colony of Plymouth, Massachusetts, in 1620.

• a person who travels on long journeys.

verb ( pilgrims, pilgriming, pilgrimed ) [ no obj. ] archaic

travel or wander like a pilgrim.

DERIVATIVES

pilgrimize |-ˌmīz|verb( archaic)

ORIGIN Middle English: from Provençal pelegrin, from Latin peregrinus ‘foreign’ (see peregrine) .

Aren't we all pilgrims?  We are all on a journey of some sort.  A journey towards love.  A journey toward acceptance.  A journey toward knowledge. Each of us can define our life by our journeys.  Some are full of goodness, success, and joy.  For others, they are pilgrim journeys of strife, struggle, and hardtimes.  For most of us, it is a blend of good and bad, easy and difficult.  But for each of us, the journey is the most important part, not the destination.  

Enya wrote a song, Pilgrim, that you may find a map, source of hope, or evidence of camaraderie in our journey.  Embrace the pilgrim in you!

Pilgrim, how you journey
On the road you chose
To find out why the winds die
And where the stories go.

All days come from one day
That much you must know,
You cannot change what's over
But only where you go.

One way leads to diamonds,
One way leads to gold,
Another leads you only
To everything you're told.

In your heart you wonder
Which of these is true;
The road that leads to nowhere,
The road that leads to you.

Will you find the answer
In all you say and do?
Will you find the answer
In you?

Each heart is a pilgrim,
Each one wants to know
The reason why the winds die
And where the stories go.

Pilgrim, in your journey
You may travel far,
For pilgrim it's a long way
To find out who you are...

Pilgrim, it's a long way
To find out who you are...

Pilgrim, it's a long way
To find out who you are...

The Reason I Jump, by Naoki Higashida

I recently was given a copy of the new release and bestseller: Reasons I Jump.

It is a quick but enlightening and thought provoking book that I highly recommend.  A young man with autism is the author and he answers questions about how his life has been as an individual with autism.  I realize that these are his opinions but they are a great starting pint for some discussions.

One fact I found fascinating is that the Japanese use three characters to write autism: "self", "shut", and "illness."

Please note, i in no way receive any benefit nor do the authors know I am writing about the book but I think everyone who has a student or child with autism should at least read this book.  It will only take you and afternoon but one afternoon of your time could build a bridge between you and someone you care about.

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?

Brotherly Love

A child with a disability is a blessing, a challenge, a student, a child, a comedian, a source of stress, and often, a sibling.  This sibling shows us what true brotherly love looks like in his outward gift to his brother.

http://www.today.com/news/10-year-old-gives-gift-running-disabled-brother-8C11296803

10-year-old Gives Gift of Running to Brother

Testing, Assessment, Accountability, Oh My!

Testing, assessment, accountability, oh my!

Testing, assessment, accountability, oh my! (Hey it's a big year for the "Wizard of Oz", I had to go there.)

I don't know how things are in your local schools but in mine, we are now required to assess students in reading, writing, math, science, and social studies at the beginning, middle and end-of-the year, as well as unit tests, performance assessments, and formative assessment.  In short, we are testing students almost every single week of the year on at least one skill set or content area.

This sounds like accountability and data collection at its best.  The only problem, the testing takes up the very valuable and limited instructional time.  Schools have definitive times and calendars.  Unlike a corporate position where they ask for you to do more and the lucky (read this facetiously) employees get to work additional hours, schools have a dismissal bell that rings at the same time daily.  The buses collect students and they are gone.  Even if I, as a teacher, decided to stay and work late, there is no one there to teach.  I missed my chance.

Does this mean we should stop testing or assessments?  Of course not!  What I am suggesting is balance.

Let's put it in a way all can understand.  You get a scale and weigh a 10 pound bag of seed.  It weighs, 10 pounds.  The next day, you weigh the bag again.  What does it weigh?  10 pounds.  If you weigh it each day, it will weigh 10 pounds and then, over time, it may weigh less as the seeds begin to fall apart and become dust from drying out in the process of sitting on a scale daily.




However, if you weigh the 10 pound bag of seed the first day and then, maybe you plant some in dirt, water them, feed them, nurture them, and then after this love, attention, and focused devotion to helping them become their best, you reap their fruit and seeds and weigh them again, how much will it weigh?  10 pounds?  No way!  It will weigh 10 times 10, or maybe even more.

You see, it is through planting seeds of knowledge, nurturing inquiry, and giving love attention and focus to the students that the results change, not by placing them on a scale.

So I say to all legislators and policy-makers, please, consider the process of learning as well as the measurement.

What, I have to teach 5 components?

Yes, there are 5 components to a balanced literacy program and yes, all children should receive instruction in all of them.

At one time I was a doctoral candidate (no, I didn't complete my program but that is a different post all together) and I was required to write a meta-analysis on a topic of teaching for any population I chose. Teaching students with significant disabilities is my passion and drive each day so, I decided to study the research on teaching reading skills to students within this population.  I gave a wide berth to the research allowing 20 years and any school-age, 3-21.   I did a computer search and even went and read the table of contents for years of journals at the library to include as many articles as I possibly could.

You see, I didn't just want to do the assignment but wanted, desperately, to learn how to teach more; More effectively, more efficiently, more students, more content, more success, just more.  I read each article with a critical eye and made notes to any instructional strategies and content so I could compare them to my current practice and be, well, more.

At that time (about 8 years ago), the research was clear, students with significant disabilities are taught reading by being given a series of flash cards which they review and review until they reach the desired level of mastery and then additional cards are provided.  This is a common system for students and for homework.  I have flashcards the students take home as we learn a word through a variety of curriculums. However........

The found research was also clear, this is the only practice that was used in the research except for one article.  You see, flash cards can only get them so far.  In one study that I read, students were given sight words off warning labels.  This sounds like a really good idea.  However, the words ingest, vomit, and induce were taught directly but the word "not" wasn't.  There is a very serious implication to a student reading a label as "Induce vomiting" and skipping the word they don't know to the sentence "Do not induce vomiting."  This is not just poor teaching, this is serious!

I am not saying "no more flash cards," but rather, "what else do we have happening in our rooms?"  I know that I have colleagues for whom their reading instruction is far more rigorous and inclusive of all 5 components of reading.  We need to be louder about what we do so that researchers can find and report on the many good things teachers do every day.

Flash cards teach sight words for fluency and vocabulary but what else so we do to teach phonemic awareness, phonics, and comprehension development?  I know that I use a range of curriculum, both formal and informal.  Students participate in a combination of Reading Mastery, Edmark, Reading Milestones, Wilson, FrogStreet, leveled reading, teacher created activities, and computer assisted programs to work on their current skill needs in each of the 5 areas of reading daily.

What do you do in your rooms?  What practices have you found to assist your students in becoming readers?  Do you have a particular structure to make sure all components are taught daily?

I want your ideas!  I still want to be more.

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.

Thank You

Thank you.  Thank you to each parent who suspended judgment and gave me a chance.  Thanks to the teachers who welcomed the students.  Thank you to administration for giving me a chance to do what I love.  Thank you to the paraprofessionals who let me try things and then, try new ones.  I always knew they were there to support me if my idea failed, and to run with an idea that worked.  Thank you to my team for the blood, sweat, and tears we shared.  Thank you to IDEIA for letting me teach these amazing students.

But most of all, thank you to each child who tried.  That is all any teacher can ask of you and you each did, not once, but day after day, after day.  I love you all.