Thursday, June 18, 2015

To My Daughters on My 21st Anniversary

Dear Girls:

Today, your father and I have been married for 21 years.  When I woke this morning, I thought back over all of those years spent with him, and then I thought of you.

One day, you will be contemplating marriage.  You might have dreams of romance and passion.  Of a fairy tale romance that will sweep you off your feet.

I hope you find that.  Romance and passion are wonderful.  They make our heart sing.  But more than that, I hope you find friendship.  Because while romance and passion are fleeting, friendship lasts.

Can I tell you a secret?  I didn't marry your father because he swept me off my feet.  I married him because he was my best friend (and still is).  Because he made me laugh, and he understood that losing myself in a good book wasn't just a fun way for me to kill time, but a need. 

Your father and I dated for six and a half years before we got married.  In that time, we developed our own jokes and shorthand conversation.  We planned our future (oh boy, does our reality look different from those early dreams!) and we shared our past.

Your father knows more about me than any other person on earth.  And the beautiful thing is, he loves me anyway.

Girls, that isn't passion.  It isn't romance.  It's friendship.  It's a deep, abiding respect for your partner.  And that's something you can build a life on.  

It's what I pray you find.

Too often, we allow our louder emotions, like passion, to dictate our decisions.  But Dear Ones, those loud emotions (anger is another one) are unsustainable.  Have you ever tried to stay mad at someone for an extended period of time?  It's exhausting.  Anger, passion, romance, all of these will ebb and flow.  They are flighty.  For a marriage that lasts, you need a deeper foundation.

Life can be devastatingly beautiful, but Dear Girls, it is also painful beyond belief.  You need someone who won't run when life hurts.   Who knows that sometimes the only thing that will mute the pain, is time.  (Dark chocolate also helps.)

It's easy to get caught up in the image of a relationship we see in books or movies.  It's fun watching a couple fall in love.  We root for love to win, and of course, it does.  And then the movie or the book ends.  But that's only the beginning of a relationship.  And it's the easy part.

The hard part of a relationship is staying together when Life Happens.  When your parents (yes, I mean your father and I) die.  When you find out something is wrong with one of your children.  When you suffer financial setbacks.  When you are diagnosed with a serious illness.  When your body changes and you're no longer young and beautiful.  During those times, you usually don't (though you might) need a lover, you need a friend.

Girls, as women, we too often get carried away in the first blush of love.  But when deciding to spend your life with someone, you must look beyond that first rush of feelings, because if you build your life on only passion and romance, your marriage won't last.  And I want more for you.  I want a lifetime with someone who cherishes every bit of your life.  Both the good times and the bad.  I want someone who loves each new line that appears on your face.  Someone who will kiss your scars and clean your wounds.  I want someone who will hold you when you cry, and who knows just the right joke to tell you when you're down.

And that my dear girls, is a friend.

Love,

Mom     



 





Monday, June 8, 2015

You All Amaze Me!!

You all, I can't even begin to Thank You for the support and love you've shown my daughter, Grace.  You have confirmed my belief that most people are truly good.

I almost didn't share what happened to us at The Bank of Kentucky Center.  I guess I've seen too many times where someone posted an experience and they were supported and criticized in equal measure (or sometimes not so equal measure--too often the bad outweighs the good).  I pictured telling our story and getting a barrage of comments like: "You should keep your daughter under control." or "Why didn't you just leave that girl at home where she couldn't bother anyone?"

But I thought it was an important story to tell.  My daughter can't speak.  I am her voice.  So I dove in and told you all what happened.  And you know what?  Over 2,000 people read that post and I didn't receive a single negative comment.  Instead, you all shared our story.  You called Grace beautiful!  (She is, but some people don't see it.)  You supported us.

Thank You.

Maybe this is naive, but I've always believed that most people are good.  That we have more in common than we realize.  Sometimes we just speak out of ignorance.

I'm choosing to believe that's what happened two Fridays ago.  I believe the man who asked us to leave The Bank of Kentucky Center wouldn't have done so: 1) had he known it was illegal to do so, and 2) he had more experience with people living with disabilities (or those of us who are "different" disabled or not.)

What I'm happiest about is that we started what I hope will be a continuing dialogue about loving and accepting those of us who are "different".  Maybe we can revise our definition of "normal".  Or better yet, get rid of it all together.  After all, we're all different, some of us are just better at hiding it than others.

With that, I leave you with this video of Grace that shows some of her "happy" behaviors.


Thursday, June 4, 2015

I. Am. So. Angry.



You all, I have been trying to write this post for an entire week.  I put it off because I couldn't figure out how to write what I wanted to say without coming off as a jerk.  So this is my disclaimer: I don't mean to be nasty, but I'm mad. I'm sharing my anger with you in the hope that we can start a dialogue that might lead to positive change.

If you've followed my blog, you know I think we need to be nicer to each other.  To forgive more and to embrace our differences.  (See this post.) For the most part, people are very kind to our family and our children.  But not always.  One such instance happened on Friday, during my oldest daughter's graduation from high school (which was a Big Deal--she has only been in this country for 6 years and came home without speaking any English.)  

Unlike my senior class which had all of 54 students, my daughter's class had 350 students.  The graduation was held at The Bank of Kentucky Center which holds 10,000 people.  Almost every seat was full.

We made it to our seats just in time. Jonathan was with us, so we sat on the wheelchair deck, which was at the very top of the arena.  The band was playing and students were walking out as we were sitting down.  Everything was good for the first half of the ceremony.  The kids were (mainly) good, and we were all so, so proud of our oldest daughter.

Then Grace happened.  Grace is our 11-year-old daughter who is has autism, developmental delays, and seizures.  She is nonverbal, but she does make some noises.  One of which happens to be a high pitched squeal that sounds like a sea gull.  This is her "Happy Noise".

Apparently Grace was Very Happy that her big sister was graduating because she started squealing.  It went something like this: "Squeal!"  Pause.  Pause.  Pause.  "Squeal!  Squeal!"  Repeat several times.

Aside from crying when she was seriously hurt or having a seizure, and sometimes a small laugh, Grace didn't make a sound the first several years she was with us.  That's right, Years.  So squealing when she's happy is Big Progress for Grace.

So here we are, watching our oldest graduate, while our middle daughter squeals with joy.  (Inside, we were squealing with joy too.)  Grace wasn't the only one making noise, proud parents and friends would hoot and holler for their loved ones.  All in all, it was a loud, happy arena.

 That is until a man who worked for The Bank of Kentucky came up to us and said, "Control
your daughter or I'll have to ask you to leave."

Grace wasn't hitting anyone.  She wasn't throwing things.  She was just happy.  She was loud, but so was everyone else.  She just didn't express it in the same way.

You can look at Grace and see that something is wrong.  Typical 11 year olds don't drool.  They don't wear diapers, and they know that shrieking in public when you're happy isn't "normal".

Grace enjoying the sun!
We've had nasty comments about Grace and her noises.  People have called her a dog.  They have said, "That kid needs to shut up."  And other things I can't remember.  The comments have come at restaurants, the grocery store.  Even church.

And now we were being asked to leave my oldest daughter's graduation.

Something in me snapped.  My daughter is a human being.  She is not a "nuisance"  or a "problem".  I wanted to say to the man, "If I could get her to speak instead of shrieking don't you think I would?  Do you think I want her to be locked in a body where she understands everything being said around her--including all of those nasty comments?"

Instead, I tried to explain to him.  I said, "She's autistic.  She can't help it."

He said, "I don't care.  She needs to settle down or leave."

I try really hard to give people the benefit of the doubt.  I ignore the looks and the comments.  I believe that if most people knew how much their words hurt, they wouldn't say such mean things.

This man was obviously not one of those people.  He. Just. Wouldn't. Stop.

He said, "She needs to leave."

"You can't ask her to leave," I said.

"Oh yes I can," he said.  (Yes, those were his exact words.)

By now, everyone was staring. (I might have raised my voice.  A bit.)  Dear ones, I didn't care.  I pointed at that man and said, "According to the Americans with Disabilities Act*, she is entitled to be here. We aren't leaving."  Then I turned my back to him and tried to focus on my oldest's graduation.  But I was fuming.

After a few seconds, the man left.
Holding Grace at the graduation.

I tried to enjoy the rest of the ceremony but I was furious and deeply hurt.

Dear ones, we accommodate  all types of people (as we should).  At the graduation there was both wheelchair access and a sign language interpreter.  Both great things.  We understand that if someone's legs don't work, that doesn't mean they should be hidden at home, away from the public.  We don't mind if their wheelchair takes up a little more room.  We accommodate them.  If someone can't hear, we provide an interpreter.  If a blind person is using a cane or a guide dog, we step aside.  We, the able-bodied, change our behavior.  We do not expect the disabled to accommodate us.

And what about "normal" people who inconvenience us?  I'm short.  If I'm at the movies and someone tall sits in front of me, I can't see.  Do I ask that person to leave?  No.  If it bothers me,  I move.    

I think we have to ask ourselves whether we are "okay" with certain disabilities, but not others.  Maybe wheelchairs and sign language interpreters fall into the Socially Acceptable category, but behaviors on the Autism spectrum are Unacceptable.  Why?  Because we aren't used to them?  Because they make us uncomfortable?

As a society, we need to stretch.  We need to get to the place where different doesn't mean Bad.  Until we do, we are going to keep speaking in ignorance, hurting those who are unable to speak for themselves.

Ghandi said, "A nation's greatness is measured by how it treats its weakest members."  Measured against that, I'm afraid we're not doing too well.



*Title III of the American's with Disabilities Act states:  No individual may be discriminated against on the basis of disability with regards to the full and equal enjoyment of the goods, services, facilities, or accommodations of any place of "public accommodation" by any person who owns, leases, or operates a place of "public accommodation".