Mystery Lane

Mystery Lane

Thursday, October 25, 2012

The "R" Word

As many of you probably know, after the presidential debate earlier this week Ann Coulter tweeted out that she approved of "Romney's decision to be kind and gentle to the retard."  I can’t really explain to you in words how this tweet made me feel.  My heart sank a little, I had trouble comprehending her words because I can’t fathom someone being so ignorant and insensitive, and then I got so mad my hands started shaking.  All I could think about was that awful July afternoon when Kevin and I sat in the doctor’s office and listened as we were told that Jackson would more than likely have some form of mental retardation.  Unless you’ve heard those words describe your child, you cannot fully grasp the severity of devastation the “R” word brings to your life.  My hatred for that word is so deep I can literally feel it in my bones. 

When I look at my son I see a beautiful, funny, silly little boy.  Granted, after 4 years the kid is still a mystery to me.  I know he understands more than he lets on, but to what extent I don’t know.  He has different cries/yells for different things (pain, uncomfortable, bored, tired, etc.) that I am able to decipher.  But if it is his pain cry I am often at a loss as to what is hurting him.  He may not be able to walk but he knows how to get to where he wants to go.  He rolls, sits up, turns around and ultimately reaches his destination and sometimes ends up in a place he didn’t even know he wanted to go to.  Jackson just has a different way of doing things and that surely doesn’t make him less of a person.  By no means does any of this make him a retard.  To imply so would be saying that he isn’t worthy of respect, fair treatment, and decency.  Things he deserves just like any other child. 

Last month I started a 7 month long class on how to become a better advocate for disabled persons.  I am taking this class because I not only want to be the best advocate I can be for my son, but also because I want to work with parents of special needs children someday.  I want to help other parents navigate the journey I am on.  Our first weekend of class we talked about something called People First Language.  The premise is to ensure inclusion, freedom, and respect for all we must use language that doesn’t reinforce attitudinal barriers.  For example, instead of saying the handicapped or disabled we should be saying people with disabilities or instead of saying he/she is mentally retarded say he/she has a cognitive disability.  When we talked about this in class I kind of thought it was a no brainer, but then as we did more examples of words to use I realized that even I used words that weren’t people first friendly.  What I realized is that our language system has changed over the years.  Words that were once commonplace, are now socially unacceptable.  Quite frankly I believe that is a good thing.  My best friend is a beautiful black woman, I would never, ever, call her a nigger.  Kevin’s best friend is gay, I would never, ever call him a fag.  Just writing these words bother me profusely.  Jackson has taught me that we are all just human beings.  We are not black, white, blond, brown eyed, tall or short.  We are just human beings.  We don’t need to separate one group of people from another.  And we surely do not need to attach hurtful words to describe one group of people from another. 
A part of me (the emotional part) wants to hunt Ann Coulter down, kick her in the shin and punch her in the face, hopefully breaking her nose.  I really, really do.  The more logical side of me would like her to meet Jackson.  Let her see what a cute, cool kid he is.  Then ask her to call him a retard to his face.  If she did it then we would know that she is really an evil person with no heart or conscience.  If she couldn’t do it, then maybe we could change the way she views others and uses her words.  In the meantime, I ask all of you to think about the words you use to describe others.  Think of some of the hurtful words we have used over the years.  Then make a conscious effort to change. Most of all, spread the word that the “R” word just isn’t okay.  If someone says it, tell them about Jackson.  Make them realize that the word is not necessary and there are other words that can be used.  We are able capable of making a difference.  Jackson has made a difference and touched so many lives.  If a 4 year old can do it, then you can too. 
Visit and like them on Facebook.  Then ask your friends to do it too!  The more we spread the word, the more we can end the word!


“Everyone thinks of changing the world, but no one thinks of changing himself.”  Leo Tolstoy

Thursday, October 11, 2012

The Wheelchair

Jackson has had his wheelchair for about a month now.  It is much better than any of the strollers we have used over the last couple of years.  It fits him well, he is sitting up straight, and his legs aren’t flailing around.  It’s just a better support system for him.  I am glad that we finally got it.  Having said that, I’ll admit when we picked up the wheelchair and I saw Jackson in it for the first time it was a little shocking to me.  I suppose no Mother is ever prepared to see her little child be confined to a wheelchair.  It broke my heart a little.  But my heartstrings aren’t as important as Jackson being able to get around though so I just had to stop thinking that way and be thankful that we were able to get him a wheelchair.  However, it has taken some time for me to get used to the looks we get now when we are out and about.   
The day we got the wheelchair I took Jackson to Costco to get lunch.  As we strolled into the store I became acutely aware of all the looks we were getting.  It was probably mostly me feeling a little shocked about the whole thing, but there was definitely some looks.  A few were the “What is wrong with that kid” look.  A few were “Oh that poor child and mother” look.  A few were just your regular smiles to greet someone.  Most importantly I got a couple “He is so cute!” comments.  As we sat down to eat I was feeling a little shaky about it.  Then my neighbors saw us and came over to say hi.  I told them we just got the wheelchair and were getting some looks.  Their response was “Who cares?”  They were right.  Who cares?  It was perfect timing to remind me that Jackson is the one that matters, not the strangers who we pass by. 
A few days later Jackson and I were in Kohl’s returning an item.  As we stood in line at the Customer Service desk a little girl, who was probably about 5 years old, and her grandma walked by.  I heard her say to her grandma in a sad little voice “Oh look he doesn’t have legs.”  The grandma quickly told her to be quiet and started to walk away.  For a brief moment I thought about just letting them go, but then I thought I should say something, anything that would give Jackson a voice to be heard and maybe understood.  So I said “He has legs, see?  He just doesn’t know how to use them.”  They stopped and looked at Jackson.  The little girl asked me “Why?”  I told her Jackson was born with a bad brain and so not all of his body could move right.  She tilted her head and gave me perhaps the saddest look I have ever seen from a child.  Then she asked “Will he be okay?”  I said “Yes, he will be okay.  He is happy, loves ice cream and doesn’t care if he legs don’t work right.”  She smiled at Jackson and the grandma smiled at me and they were gone.  I don’t know if that little exchange will have an effect on a 5 year old but it did on me.  It felt really good to let someone know that Jackson is a person too even though he is in a wheelchair.  He’s just a kid who gets around on wheels instead of legs. 
I recently saw a quote that is another motto I need to adopt.  “Life is 10% what happens to us and 90% how we react to it.”  (Charles Swindoll)  That pesky 90% is what sends me into tailspins of sorrow, anger and questioning.  I need to stop reacting to all of these little life events with Jackson and just start living my life with Jackson.  Lately, I feel like I am getting that message.  It’s a journey I will probably be on for a long time.  Lucky for me I have the best little companion to keep me company.  Jackson.