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.

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?

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.

That’s What It's All About

As a Special Education teacher I spend my days planning, teaching, and advocating for a future.  Not my future, the future of my students.  We all talk about, “one day when they are older” or “when they go to  high school” but do we really think about what we want.  I know, you are saying, yes, I think about the students job and living arrangement.  Their social group and how their family will support them.   But do we consider the little things, the moments that we all remember from our high school days but see as small moments.  I have to say, that I forgot the little things. 

Or at least I did until a young man, whom I have been fortunate enough to have in my life the past 12 years reminded me what really mattered.  He is an amazing young man who happens to use an augmentative communication device and wheelchair.  But please, remember, he is a young man.  He has crushes on girls, passions, and hopes just like everyone.  One of his hopes was fulfilled by a cousin who saw what I didn’t;  the little things matter.

reproduced with permission from their mom's and the young woman

Yes, I am talking about prom.  He went to prom, complete with two beautiful dates who danced with him and enjoyed it along side him.  His younger brother fit his chair with a camera and he shared the expeience later with his family in film as using the talker is more tedious.  At one point, as the juniors and seniors all circled around while individuals danced in and out of the circle, the young man’s classmates made room and had him join the center for his few seconds of dance solo.  Yes, one night of prom matters, and to a young junior, it is a highlight.  Prom wasn’t a single night.  No, it was a lifetime of memory.  I will always be grateful that he was my teacher as to how to plan what matters most in a person’s life.  I will carry this lesson with me the next time I start a sentence with “One day….”

Thanks, all three of you!!!

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.

Home of the Brave

Imagine a day when you spilled coffee on the front of your shirt, jammed the copy machine, lost internet access, made several mistakes at work, accidentally insultedd a variety of people, burnt dinner, and washed a red shirt with your white.  Would you consider the day a disaster?  Maybe even a failure?  I would.  Maybe, like me, head to bed confident that tomorrow would be better.  But what if tomorrow wasn't better?  Nor the next day...nor the next...or the next...

Would you keep trying?  How long would it take before you gave up, or became so angry and frustrated that you no longer believed tomorrow would be better.  I don't think I would even make it a full year.

Now, imagine struggling with everything from getting dressed to eating breakfast to telling someone you love them to reading a simple sentence in a favorite book.  These are the struggles of the students with significant cognitive and physical disabilities.  The students that I have the privileged of teaching.

My students arrive each morning with smiles, excitement, and anticipation of the instruction and opportunities for success.  they struggle to read, write, communicate, make friends, count, add, and carry the cafeteria tray without spilling.  They never stop trying.  They could easily consider each day a series of failed attempts.  They could easily quit trying.  Their families and teachers would understand.  Afterall, the have tried for years to do something that their peers could do after only a couple of tries.  They could be angry and frustrated.  We would sympathize.  But they don't.

Sure, they get frustrated and stop trying for a short while.  But they always come back to the task.  They try again, believing, this could be it.  This could be the time they succeed.  Today could be the day they write their name by themselves, answer a question in class correctly, read a sentence, make a friend, or even walk all the way to class by themselves.  They are the bravest people I have ever met or could hope to meet.