Content Amidst the Chaos

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She’s doing such a great job, so why do I cry? April 19, 2010

Filed under: S2 — jps23 @ 7:32 pm

My cowgirl makes me cry EVERY LESSON.  She’s been taking riding lessons for about two months.  She has made amazing progress that blows my mind.  She does things on that horse that are a struggle for her to do anywhere else.  Why?  Some might say that she likes horses and it’s stuff she wants to do, but I can assure you that it isn’t that simple.

Our cowgirl is special.  Yes, all our children are special, but when I say she is special, I am referring to the paperwork that says so.  When she was just 21-months old, she was diagnosed with an autism spectrum disorder.  Really?  Yep.  We were having some struggles with our sweet little second-born, and she seemed to be delayed in many areas.  The one that got the pediatrician’s attention was the language.  I wrote it off to kids developing at their own pace and maybe Picasso moved fast because she was the first and had all our attention.  At 16 months, Cowgirl only had three words, and even then, they weren’t used consistently or with meaning attached to them.  So, we began a process of testing to see what was going on.  We evaluated with Children’s Healthcare of Atlanta, and it was determined that she had a significant delay.  Duh.  However, since they are so amazing, effective, and well regarded, they had a long waiting list.  In the meantime, we were referred for a hearing test and we were briefly introduced to a program called Babies Can’t Wait, for the time while we were waiting.  She passed the hearing test, so we were left with the Babies Can’t Wait people and the CHOA waiting list that seemed forever away.

Babies Can’t Wait is a social program set up to aid babies with developmental issues.  This is where I struggle with politics.  I can’t complain about social programming when my child was unlocked from her prison with the help of some amazing people in this program.  You can knock social programming all you want, but wait until your child is in this place and all testing and evaluation, if you can even figure the system out, is way out of your budget and/or means.  We were called and evaluated, set up with testing and starting a specific program for her all before we were ever reached on the CHOA waiting list.  BCW is a program that works on behalf of babies up to the age of three under the guise that their brain can be remapped (neuron connections and so forth) if you work with them early enough.  AND, they come to your house!  So out comes the team of evaluators: my service coordinator, a special instructor, a speech therapist, and an occupational therapist.  They observe Cowgirl and me interacting in a natural play environment and take notes.  I just want to know what’s going on, so I’m not nervous or threatened at all, and amazingly, Cowgirl seems to be able to tune them out pretty well.  (I find out later that her reaction to them wasn’t necessarily “amazing”, but typical of kids with this disorder.)  They observe, we chat about symptoms, signs, and peculiarities, and they ask me “Have you ever thought she might have autism?”  Uh. No.  My only interaction with autism was a girl I went to elementary school with whose brother had autism and was so severe that he was without language and did a lot of grunting.  That’s not my daughter.  So I told them no, that I didn’t know much about autism, and they pointed out the red flags they saw in her or found in some of my statements regarding her behaviors.

  • limited eye contact
  • delayed language
  • inability to calm herself when upset (intensity)
  • lining up like items (not a red flag, but an oddity common in autistics)
  • perseverance (obsession) on particular items, objects, or toys
  • sensory sensitivities

So we set out on a path of therapy with our team, and I jumped in head first to books, articles, and information on the Web regarding autism.  Will she talk?  Will she relate to others?  Will she ever say, “I love you, Mommy”?  What did this mean for her and for us as a family?  Those days were so hard and exhausting, but I had an amazing team helping me through it and a supportive husband holding me up.  I also had an enormous God who knew what He was doing when He made her.  It might be an obstacle, but He makes no mistakes.

And these days, it’s hard sometimes to even see it in her.  We still have days, and every day there’s a little piece of her autism that shows itself, but it isn’t always a negative thing.  She loves animals, and she has had an obsession with one type or another ever since she could hug one.  We started with elephants, which she still loves.  Then we moved to butterflies.  We spent one day going to six, yes six, different stores to find a bathing suit with butterflies before going swimming because my MIL had kept hers to wash.  She could not even think about wearing a suit that didn’t have a butterfly on it.

After butterflies, it was whales, and after whales, it was, and IS, horses.  You also will often see her perseverations in relationships.  If you are her friend, you are her BEST friend!  It doesn’t matter your age, either.  She wants to be with you always, hug you, and make sure you know how much she loves you.  This sounds sweet, but it can freak out some people.  She can also perseverate on things like how she forms a letter or whether or not her numbers in a math problem line up just right.  She can get extremely upset if things don’t go just so, and she has a very difficult time bringing herself back down.  It’s easier now that she understands her stuff better and she can vocalize her sense of overwhelm, but it’s still hard when she is so upset that she screams so loud and intensely that she loses her voice.

The sensory side of her autism is tricky.  She is what you would call an “avoider”.  She can’t stand certain touches, textures, sounds, and smells.  Socks were a big deal for her.  She HATED the seams to the point that she couldn’t wear them unless they were seamless.  She also likes to wear as little as possible, because that means less is touching her skin.  She can’t wear loose clothing, like baby doll shirts, and she says it’s too wiggly.  Her shoes, jeans or pants, and even her underwear have to be very tight.  She was always so loud as a little person, but we learned that it was her coping mechanism for drowning out the excess noise she couldn’t handle.  This past Thanksgiving, a person in the neighborhood behind us was cutting their grass, and she couldn’t handle hearing it.  Some days she can, but we had family over, and when there is a lot going on, it’s hard on her.  The great part was that she has learned how to handle it.  She simply told me that she needed to go inside and lay down on my bed because she needed a break.

Now, the good side is that she loves more deeply, appreciates more greatly, and tries harder than most.  The last one is hard because it doesn’t seem fair that everything is harder for her, but she knows that pushing through is the only way she will experience life in a memorable way.  I’ll leave you with a great little story that explains what it is like to be her mom (and dad):

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.                               Welcome to Holland, by Emily Perl Kingsley


2 Responses to “She’s doing such a great job, so why do I cry?”

  1. Trisha Says:

    what a beautiful post today!! she is blessed to have you as her mommy! i love that story…it spoke to me so much in my current situation…I may steal it for my blog one day!

  2. this reminds me of this blog I’ve been reading, enjoying the small things. It’s in my links on the right. You should check it out. Beautiful story of a family that just had the birth of a down syndrome child just 12 weeks ago. Honest, raw, and beautiful. The Holland/Italy story sounds like something she shared at some point.

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