"Look At Me"

"Look At Me"
monotype and screenprint

Saturday, January 28, 2012

Dumb Things People Say

So, a friend of mine's kid was diagnosed two days ago.  Of course, it made me think about the first few months after Derek was diagnosed.  The devastation, the anger, the frustration, the feelings of hopelessness...all of it.  I remember the day he was diagnosed so vividly.  Hearing the words "He may never speak."  Even though I knew in my heart that he was autistic before the day came, some small part of me clung to the hope that I was mistaken; that there was nothing wrong with my child. 

I knew people were trying to help, but when we broke the news to our family and friends, people said some of the DUMBEST things in return.  So I've come up with a list.  I'm sure other people have done this before, but these are things people said to ME that made me want to smack them. 

 (these are in no particular order)
1.  "I told you so."
     Really?  That's all you can come up with to say????  You know, I suspected my child was autistic too, but that's NOT what I need to hear.  What I need is for someone to hug me and tell me that everything is going to be ok!

2.  "Maybe you should get a second opinion.  He hugs you--I don't think he's really autistic."
    OMG.  This one is actually WORSE than number one.  It's almost like you are saying that my     problems--MY CHILD DOESN'T TALK--aren't valid.  Once again, just give me your support and say you'll be there for me and that everything will be ok!

3.  "Don't take this personally, but I don't think playdates are the best idea anymore."
     Yep.  I was told this very thing.  A friend thought that her son would pick up Derek's weird "traits."  How am I not supposed to take that personally?  Ouch.

4.  "You look tired.  You should try to get some rest."  I also got "You've lost a lot of weight.  Are you eating?  Are you anorexic?" 
    Are you kidding me?  My son won't look me in the eye.  I'm spending hour upon hour doing therapy with him and trying to get him to pay attention to me.  Do you really think I care WHAT I LOOK LIKE RIGHT NOW?  Or whether or not I get FAT?  I was lucky if my socks matched during that time period.  If a friend looks tired, or looks like they have lost or gained weight, it is because they are STRESSED OUT.  Offer to babysit so they can get out of the house for an hour or two.  Give them a break!!!!

5.  "Your son just needs discipline."
     Excuse me, what?  I'm sorry, but no amount of talking to, yelling at, time-outs, or (God forbid) spanking is going to "fix" autism.  I can't FORCE Derek to eat food that disgusts him.  He won't open his mouth.  For Derek, eating mashed potatoes would be like me or you eating sand.  Gross.  And it is downright PAINFUL for him to wear clothes with tags.  How does discipline fix that kind of thing? 

6.  "Autism is caused by bad parenting."
     If you believe this one, get off this page.  I have spent way too much time wondering what I did wrong.  Did I do something during pregnancy that caused my son to be autistic?  Did I not feed him the right foods as an infant?  Did I not pay enough attention to him when he was a baby?  Was it the vaccines?  Was it the drugs they gave me to stop the premature labor?  Should I have been drinking bottled water?  There are a million theories as to what causes autism and no solid answers.  Truth is, they still don't know.  And honestly, I don't care anymore.  My son is perfect.  He was not caused by bad parenting.  If he had been, than Tyler would be autistic too.  I don't want to change my son.  I just want to help him be the best person he can be.  All parents want that for their children.  I accept him exactly the way he is.
7.  This one is kind of controversial.  "God won't give you more than you can handle."

 Ok, before you freak out--I'm a Christian.  I believe in God.  Yes, I know people meant well.  I KNOW they did.  And NOW, three years later, I agree with the statement.  But I'm a much stronger person now than I was then.  Back then, it was the worst possible thing I could hear.  I was mad.  No, I was furious.  And in my opinion, God DID give me more than I could handle.  I had a husband that worked nights.  A not quite 3 year old son.  And a 20 month old, non-verbal son that I could not reach.  Much as I tried, I could not keep up with the housework, the demands of both boys, and take care of myself.  I ended up losing 20 pounds and having a semi-nervous breakdown.  I had to go on anti-depressants and mood stabilizers.  AND, we ended up having to hire help--our ABA therapists.  Whenever people told me that wonderful, well meaning statement, it made a perfectionist like me made me feel like a total failure, because I was NOT handling it on my own.  I wanted to curl up in a bawl and die.  SO, in a way, He DID give me more than I could handle.  Looking back, I can see that maybe God made all this happen to lead us down the right path--ABA therapy has been the best thing for Derek, and we wouldn't have done it if I'd been Super Mom.  :)  But find something else to say--or you might get smacked.  Maybe refer them to the Footprints poem?  Because what comforted me was knowing that the Lord would be by my SIDE through the hard days.  I didn't handle things on my own.  I FAILED. 

If you really don't know what to say, don't say anything at all.  Just give your friend a hug, let him or her cry if they need to (I think I cried every day--sometimes several times a day!!!--for a good year), and just BE there.  Sometimes they'll want to talk about autism, sometimes they won't.  Sometimes if they are around "normal" children they may start crying for no reason at all, because it will hit them like a brick that their child will never do the things that other children are doing.  Don't be alarmed.  It's part of the grieving process.  Your friend will never be the same, but if you stand by him or her, I promise you won't regret it.  :)

Thursday, January 19, 2012

The Opening Reception of Show #1!!!

Me and the two beautiful boys who are my inspiration...

     Saturday was my Opening Reception.  It went really well, except I choked on my speech.  I had it all planned out.  I knew what I was going to say.  And then I got behind the podium and a lump got in my throat.  I could barely speak because I was trying not to cry.  Speech class in high school did NOT prepare me for having to talk about my heart.  Anything that has to do with Derek and autism makes me an emotional wreck.  He's so precious to me-- it breaks my heart that others might view him as "impaired" or define him by his "disability."  He lights up my life.  Both of my kids do. 

    Anyway, this was my speech.  Sort of.  I choked my way through it. 

     Three years ago, right about this time--in the middle of winter--was when Derek started going downhill.  I watched my happy baby slowly disappear into his own world; a world where he had no interest in anyone and nobody could reach him.  I couldn't get my own son to make eye contact, or even to acknowledge that I was THERE.  My heart shattered.  I made a vow that I would get my son back, no matter what it cost.  I recently read a quote by another mom with an autistic son.  She said, 'He is not in his "own world."  I'm here too.'  This quote is perfect.  How did I get my son back?  I joined him in his world.  Some days are so difficult I feel like I have gone through the Looking Glass on Alice in Wonderland.  I see the world through my son's eyes and everything has gone topsy-turvy.  But I wouldn't change a thing. 

    The bottom line is, I did this project for a little brown-eyed boy with a huge heart.  I wanted to tell him in the only way that I know how, that I am not ashamed of his "disability" or his diagnosis.  The word autism is not dirty or bad.  The diagnosis was not the end of the world--it was the beginning of a different one.  Derek is as beautiful to me now as he was the day he was born--maybe even more so.  Because I know how hard he has worked.  I know what he has overcome.  Every word out of his mouth is a MIRACLE.  I'm so proud of him I can't possibly describe it in words.   And I hope that someday down the road, when (not if!!!) Derek is speaking, he'll tell me he's proud of me as well...

Wednesday, January 11, 2012

Happy New Year!

Yes, I realize it's January 11.  I was in Mexico up until late Saturday night and I've spent the last few days unpacking and trying to adjust to real life again.  I was with my family (no kids!) at an all-inclusive resort in Mexico.  It was beautiful and I spent as much time doing NOTHING as possible.  It was fantastic.  I went parasailing, snorkeling, and even held a monkey!  I also took naps on the beach, ate tons of food (including sushi!), drank a few margaritas, and brought in the new year on the dance floor.  For a little while I was able to forget that the word autism existed.  It was amazing.

I missed my kids terribly though.  I noticed that when certain things happened, I wanted to tell them immediately.  Like when we snorkeled, my husband saw a nurse shark.  Tyler would have been thrilled and he was the first person I thought of.  And when I held the monkey, I thought of Derek.  When I showed him the picture of it, he tried to grab the monkey out of the picture.  :) 

Monday hurt like a banchee.  I slept through the alarm somehow, so the kids were late from the start.  Then Derek decided he didn't want to go to preschool and locked himself in my bedroom.  I had to use a screwdriver to get the door unlocked.  GREAT start to the day.  But on the plus side, I also noticed how much he is TALKING.  He is babbling up a storm.  If you ask him to say a word, he'll at least try to say it back.  Unless it is an easy word, he's almost guaranteed to mispronounce it--for instance helicopter is "di-dit" and Kristen was "Kee-kee" but he is TRYING.  6 months ago?  Not a chance.  It gives me so much hope.  Some day, my son will be able to hold a conversation and actually be able to communicate.  I know it.  I believe. 

My show is up and the doors are open.  The opening reception is this Saturday from 4-6.  I'm trying to figure out what to say when I'm supposed to speak to the crowd (assuming people actually show up).  I guess I'll think of something...