INCLUDING MY SON

Why as society and human beings have we preferred and accepted separate but equal for individuals with developmental disabilities?  I have painfully been privy to the practice of self contained classrooms, separate schools for children like my son and ignorance in the community.

This has created much anxiety in me that goes beyond any fix that may come from a pill.  As a student of life I have been forced to face the reality of “being different” is not acceptable.  In fact, we must conform to what our immediate environment dictates us to become in order to “get along” in society.  As a little girl I inherently was aware that mistreating a person because of their skin color or accent was wrong.  Even though everyone around me said words that I will not repeat here when a certain person of an ethnic background walked by and the R word often said for the kids down the hall in school in that classroom that nobody wanted to walk by.

I volunteered much of my free time in that classroom.  I engaged in conversations with these students.  I often wondered why the teacher was allowed to talk to them in that tone of hers.  I would observe twitches and head swaying whenever that teacher spoke to or about the students: as if they were less then:  LESS than any of us, less than deserving respect and kind words spoken over them.

These students were often called Retards or Botards in my school within my circle of friends.  I would correct them and tell my friends their names and what they liked.  I tried to humanize the “special ed” students to my inner circle.

Many years later I am doing the same for my son, Scotty.  How can I humanize my son to a society who looks at him as “less than” or not worthy of inclusion.

INCLUSION is a hot topic in education.  WHY? 

I have given this much thought and cried many tears over this.  If we as parents, students, teachers, administrators, society, human beings don’t believe that inclusion in an educational setting from onset is not a given right for any person born with  any form of difference, we will certainly not allow inclusion of these same people into our world.

Parents of ‘normal’ children do not want the distraction of having any special education students in the classroom with their child.  Regular Ed teachers do not want them in their classrooms.  Let’s face it all this back and forth re. Pros and cons of inclusion is a bunch of Bullshit used to disguise the truth behind the mask of special education segregation.  Why is my son’s education any less important than your child’s?

Special education should not be exclusive or a separate entity from any school system.  All of our children need an education to help them become successful in life.  We all require some form of special education to meet our needs as individuals.  Teachers and administration hide behind labels and claim not enough money in the budget or not enough support systems in place to consider full inclusion for every or any student who learns, looks, acts differently than the expected norm.(note: I am currently studying for my doctorate in education-so I am not just casting stones)

It is easier to hide in your own ignorance and fear then to reach out and make a difference and change how we look at people like my son.  I am not asking for just tolerance.  We are requesting, NO demanding full acceptance in every area of his life. 

Whatever happened to the golden rule of treating others as you wish to be treated?  When my son says HELLO to you, have the respect for him to say hello back.  Being rude and unkind to people like my son is acceptable behavior in our society even within our own families.  This must stop!

It is easier for us to hide or ignore differences.  I am ashamed of so many people when we are out in our community.  However, I am never ashamed of Scotty because he is always himself, pure, innocent, true to who God created him to be.  We ‘typical’ people would benefit from Scotty and others like him.  Living a non authentic existence is exhausting.  Scotty is Scotty with NO apologies.

The moment we don’t question if my son deserves to be in a ‘regular’ classroom will be the moment we start to move forward with full inclusion into the world.

I plan to make a difference to help him be included in this world.

. 

NOTE: I included this picture for this piece because Scotty is fully included within the loving family of the Echelon and 30 Seconds To Mars...these men of Mars and "fans" show true acceptance and love for my son..now to get the rest of the world to follow suit!

Welcome To Holland: A poem I Hate

I had signed on and committed to writing in my blog for 31 days straight from July 1-July 31.  I seemed to have forgotten July 2nd & 3^rd.  Perhaps I am in a time warp and didn’t really experience those two days or I had nothing great to write about.

Awakened by my dog way too early this morning, I was on Facebook catching up on all my fellow Angel Parents posts.  I came across this link that if I wasn't sitting next to my sleeping angel, I would have leaped off my bed with joy and gratitude.

http://not-hothead-yet.livejournal.com/703116.html

This is a must read to get a better picture of what it is like to be a parent of a special needs child.  My friend and fellow Angel Mom; Debbie Rankin Aimers had posted it.

It was such a release of emotions for me when I saw this and other parents believe and feel as I do about the “welcome to Holland” poem.  Honestly, I hate that explanation of when you are told your child has special needs/disabilities.

Welcome to Holland"

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this: When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. - Emily Pearl Kingsley

The first time I was told some version of this poem was in April of 2003 at my son, Scotty’s one year old well visit.  We just had spent 10 months of tests, blood work, and many specialists later to put a reason, a name on what was causing my son to not meet his milestones.  The pediatrician told me this lame story about Holland and Italy and that my son has Cerebral Palsy (which we know was wrong. Fast Forward to 2009 he has Angelman Syndrome).  The doc tried to tell me that loving this child will not be easy. That Scotty will never do what his older brothers can do.  He will never be able to run and play with his brothers.  He may never walk.  Most likely Scotty will never eat on his own and we really have to think about a feeding tube.  Not one word was positive. 

I snapped back at the doctor mid-sentence and said: “what’s with that Holland place?  If you are worried that I don’t love my son, you are ridiculous.  I already love this boy.  Do I not love my other children when they don’t act “normal”?”  I just thought this man’s attempt to break the news easy to me was absurd, crude, and just distasteful. 

Normally, I don’t care what people think about me or my opinions.  However, for years I feared to let any other parent of a child with special needs know that I hate the Holland story.  It seemed whatever website, book, or Facebook page I went to; had this stupid Welcome to Holland analogy.

Let me try to describe what it is like to have a child with Angelman Syndrome.

I never let my shoulders down and relax.  I am always on the lookout for what is coming next.  I am in constant fight and crisis mode.   

Here is a Facebook conversation Debbie and I had just a few moments ago after I saw her post the above link:

Me:  oh my GOD...thank you for this. I honestly have been afraid to say I actually hate this Holland shit...I was offended when Scotty’s doctor told me this story at his 1 year well visit and then told me he had CP ....I can go on about how much I dislike this 'explanation'...I just might write in my blog about it lol..Now that I know others feel the same way...thank you again...

Debbie:  I agree Rita. It feels like surviving a plane crash.

Me:  yeah...a plane crash that seems to just keep happening...you feel safe one moment. Then BAM something else explodes....

Debbie:  Yes there is really no moment when you can safely exhale and say "It's all over and my child will be fine." Or "So happy my kid was born without that chromosome after all"

Me: so true...I don't think I have exhaled since he was born...constant state of “what's next?"

Debbie:  However, I know what true love is!

Me:  YES. Nobody loves me like Scotty loves me...I finally know what true unconditional love is

Debbie: It is so pure

And this Ladies and Gents explains what it is like to be Scotty’s Mom.

SOBERING THOUGHTS

How am I supposed to face each and every day knowing that I am alone with the complete care of my angel, Scotty?  Everyone is moving on with their lives...following their dreams away from us I have nobody who understands what the daily grind is for Scotty and me. (except other Angel parents)  We have each other and that is it.    

Those who I thought to love us are too busy hiding  behind their haughty masks of judgement.   I decided if we are to be ‘loved’ by anyone who forces us to be something we are not, they are not deserving of us in their lives.  Refusal for my children and I to do fall prey to the 'acceptance game' has saved my sanity.    My motto is to stand firm in who I am, never back down, and never lose faith.  I have raised my sons to live this as well  I have learned the hard way to not believe their smiles through their words. For the moment we are absent they are speaking of our inadequacies and failures.  

I am alone every night as my angel sleeps. Holding him as he seizes and tears fall down my face as thoughts of realization that someday he will be bigger than me and how in the hell am I to care for him on my own then?

I have no support physical, emotional, or spiritual.  Sobering as I face reality that no one in my life is capable of loving us as we so desire and deserve.

God for some strange reason believed that I was capable of caring for this angel on earth.

Some days I am so grateful for this honor and others I curse His choice in me.

There has been a line drawn in the sand and the only people standing on this side of the line is Scotty and me.

Somehow we will find the strength to do this alone.