Tuesday, September 27, 2011

So you CAN learn from Television

Last Fall I began my guilty pleasure of watching some shows on Hulu.  We don't have cable, but I find watching them on my own time via the computer to be much more convenient anyway.   I was watching the usual things for me, Desperate Housewives, The Office, and then a couple new shows. Modern Family for hilarious laughs, and Parenthood
Now, I have to go back in time for a moment with this post.  When I was pregnant with my daughter I fell in love with a beautiful satin bassinet that I was obsessed with.  I imagined putting her in it, my first baby, my little girl laying there looking beautiful.   My Mother lovingly gave me as a gift. 
Years later we were living in L.A. in a tiny apartment with no storage, my son had been born, briefly spent a time in it, and quickly outgrew it.   We planned to have no more babies so I put it on Craigslist.  The bassinet ended up being purchased by a Stage Prop Designer who said that it would be used for a Pilot and eventually put into the Universal Studio warehouse to be rented by anyone in Hollywood.  He said, if you ever see one on a TV show or movie that looks like it, chances are it is it.    

OK fast forward ... I am Watching the Parenthood, and  in the beginning of the show each week is a baby in my daughters bassinet. (At least it looks JUST like it, and I think it is.)  I hadn't seen it show up in anything before and so  I decided to watch it again the next week, and I kept watching again and again but no longer for that reason... it was a great show.

  Parenthood features a boy around age 10 who has Asperger's.  I had no idea what that was, other than something to do with Autism and I thought a friend of mine who's son I was suspicious of might learn a few things.  Yep, I posted a link to the show to facebook thinking SHE needs to watch this show.

About a month later I went to a pumpkin patch with my family and my mom came along.   We did a wagon ride, picked a pumpkin, and then let the kids play in the hay.   My husband and I carefully watching our daughter for signs of over-stimulation. She can only last so long during outings before things begin to unravel and for everyone's sanity we have gotten good looking out for this.  My husband and I were talking, plotting our exit at the first sign of melt down.  My mom overhearing us said something like, "You remind me of the parents of that boy on Parenthood."
My mom had started watching the show because I had told her about it a few times, about how the bassinet she bought for us was in the show, and before long she was hooked.

My reply was something defensive and totally clueless. I believe it may have been "What are you saying, She has Aspergers!!!???"  The thought stuck with me though, and the more I watched episodes, the more I realized how much my daughter was reflected in this character.  The character, Max has a more severe case, and also Asperger's presents a bit differently with boys.  They tend to be more violent, where my daughter would draw up plans for the demise of her taunters silently. The similarities were there though, enough to make me take start talking to a psychologist, and eventually her pediatrician. 

Months later, after doctors, psychologist, and lots of reading it became very clear that my daughter did indeed have Asperger's Syndrome. We haven't taken her in for the full medical evaluation with the team of a billion people but every professional I have spoke with is in agreement. 
The realization was overwhelming at first, and then it was a relief.  I now knew what type of books to read to help with issues that other parents just were not having.  I also could let go of this idea I had for her.  That part is hard, I kept thinking that as she got older she would somehow grow into a chatty little lady that would want to hang out with me.  From the age of 2 she would ask me to leave her alone so she could play by herself.  I expected that at age 16, but not from the time she could speak.  Now it makes so much sense to me.   I am letting that go of the expectations that I had for her, as hard as it is.  I still get sad when I see other kids interacting in the neurotypical way but through the books on Asperger's I am learning ways to communicate with her that she does respond to. 

My daughter is amazing though, she notices things nobody else sees, she tells jokes that nobody else would think of, and when she lets me into her world I am always entertained and awed.   Now I watch parenthood and laugh, sometimes cry, but mostly feel less alone.  This is my normal and though I have been living it for eight years it's just sinking in that it's here to stay.

I realize now that even when she was growing inside of me this was planned.  She has always been meant to be exactly the way that she is and I have been guided to understand her better.  Through the bassinet that I fell in love with, my mom purchasing it, selling it to the set designer, and finding the tv show, it was all lined up for our family to make a discovery that would help us.  Not just my daughter but also my husband and his family.  So many things are unfolding because of this discovery.  

I honestly do not think anyone would have made this connection. Asperger's in girls goes undiagnosed all the time.  They are not as "in your face" to outsiders as boys are.  My daughter has had so many troubles with anxiety, transition, friends, empathy.  Before the discovery I always felt lost and helpless, the parenting books I read were no help, the methods would backfire.  Now I have books that speak to me on my child, now she is part of a social skills group for children on the autism spectrum.  We have help, we have guidance, and it isn't so overwhelming anymore. 

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future"  Jeremiah 29:11

Tuesday, September 13, 2011

A poem written years ago

Soon I will have a daughter
She will be born into an ocean of hatred
And I will spin around her creating a whirlpool of love.
I will teach her that she is a fairy and how to use her wings
to fly away from enemies and fly toward her dreams.
I will show her how to ignore the music around her and listen to the music within her.
There will be some who will try to crush her wings and smother her music.
I will help her build strong wings and tell her to sing loud. 

I wrote that poem years ago when my daughter was growing inside me and today I look back at it and tears fill my eyes as I realize just how true it turned out to be.  My daughter is 8 years old and just this past year she was diagnosed with Asperger's Syndrome.   The line in the poem that get's me the most is about ignoring the music around her and listening to the music within her.  That is exactly what she does, but I never had to show her how, she has always been inside herself, giving the rest of us only glimpses of the magic within.

When I thought of having a daughter I imagined her snuggling with me for hours, having tea parties, going shopping together, wonderful conversations and giggling on a girls night out.  The reality didn't follow that plan.  At first it was not having a snuggly baby, then it was having an independent toddler.  When she was only 2 1/2 years old she told me to "go away" while she did her highly complicated puzzle.  There I was, shut out of her room, surprised, and confused.  I had expected toddlers to want their mothers around.  

At playgrounds she didn't play with the other children, she simply watched them from the highest point she could climb to and occasionally engaged near the end of our visit.  She didn't behave in a shy sort of way, there was no hiding behind my leg or refusing to say "hi."  She simply didn't care to engage in play with the other children.  She was happy alone in her world.  This continued on and is still true today although she has wanted "friends" more in the past two years.  

My daughter never wanted to go shopping with me, later we realized that she doesn't like transitions and shopping is nothing but a transition.  In the car, out of the car, in the store, drive to another store.  It overwhelmed and exhaust her so that by the time we finish she is feeling sick and almost in tears.   I tried fun things like getting a treat while we were out, letting her pick her own stuff, going to a fun store like Claire's.  Now I understand her better and instead we shop online or only plan for one store and make it quick.  

So many things I thought my life with her would look like are not at all what I expected.  Part of that makes me sad, but another part is very curious and ready to embrace the life that is emerging.  Getting the diagnosis was a good thing for me.  I feel like I have answers to questions I wasn't even sure how to ask.   We haven't told her yet but that will come soon.  I want to be in a grounded and centered place before I talk to her about it.  My hope is that through this blog I get to that place quicker.  I also hope it can be useful to other families with aspie daughters who happen to find my blog.  There is not a huge percentage of girls with Asperger's and I think it's great for us to find each other.  One thing I learned in all of this is that it presents differently in girls then it does boys and that leads us to more challenges in finding solutions and support.