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?