What Our Autism Looks Like

DSCN7774

Lucy is four.  She is beautiful, charming, demanding, hilarious, sensitive, aware, smart, and so so so much more.

Lucy loves pancakes and sausages for supper.  She eats carrots and cucumbers like candy.  Lucy’s favorite movie is Toy Story, but enjoys watching other movies like Wreck-It Ralph, Despicable Me and Tangled.

She loves to play at the park, bike and go to the movie theater.  She looks forward to seeing her grandparents and aunts.  Lucy loves to read books, paint and play with play-doh.

Lucy has autism.

I recently began taking Lucy to visit with a clinical Psychologist in town.  I’ve learned more about autism in two sessions than I have in my entire life.  I’ve come home from these appointments so excited to share new information with Devin and to put some of her advice to use.  I feel invigorated and inspired.  After months of “what ifs” and questioning how Lucy would be able to assert herself and live in a world that’s so different than her own, I finally began to let go.  Taking each day, minute by minute, has certainly encouraged me stop dwelling on the things I cannot change.  I can’t change how people will look at her.  I can’t change how unfairly people treat those with disabilities.  I can’t change her brain to function like a typical child.  I stopped dwelling on small things like, ‘What if she has no friends in jr high?’ And turned it into, ‘Less drama with those 8th grade girls!’ Or things like, ‘What if she never gets married?’ Into ‘As long as she’s happy with herself and content with her life, she doesn’t need to.’  Frankly, those are the hardest things I’ve had to overcome and by golly, I am SO proud of myself for letting a lot of that go.

But.

Dr. Cameron has taken my dreams for Lucy and amplified them times a million.  Lucy will be able to have friends, Lucy will be able to be married if she chooses, Lucy will be able to read emotions and feel emotions, I just have to help her learn how to do it.  She’s taught me that though Lucy doesn’t have the natural skills most 2-year-olds have, she’s perfectly capable of obtaining those, but just needs to be taught or shown.

Lucy hates to put her coat on.  Mostly because she knows it’s the step before leaving and transitioning to another place which is unimaginably difficult for her.  As I grabbed her coat and asked her to put it on, she refused, threw her arms back and sat on the floor.  “Lucy, watch my hand.”  I grabbed the left sleeve and invited her into her coat.  She watched my movements without hesitating, lifted her arm and slipped it inside.

Holy shit.

No tantrum?  No screaming?  I feel like everything we’ve done in the past has been wrong.  I’ve suddenly realized that all my parental powers mean nothing in the world of clinical psychology.  “Lucy, look at me,” I softly say.  She quickly glances in my direction, but away from my eyes. “Thank you.”  “You’re welcome, Mom.”

I can hear Dr. Cameron saying, “Everything with Lucy needs to be visual.  Talking with her does very little.  She’s trying so hard to understand what you’re saying that it gets jumbled in her brain.”

Speaking with psychologist has made me pay very close attention to my own social behaviors.  I noticed, I do not, in fact, look people directly in the eye when speaking to them for long periods of time.  Actually, the next time you do it, count how many times you look away and continue speaking.  I’ve found that in the times I’ve purposefully continued to look into someone’s eyes for a long period of time, the conversation gets really creepy.  “So what if she’s not looking directly in someone’s eyes?  Teach her to at least face the person, give them space and speak with friendly intonations,” Dr. Cameron said, “It’s hard for her to look into someone’s eyes.  It’s uncomfortable if she’s forced.  If you teach Lucy to become more flexible, she’ll continue to get comfortable in new situations and environments.  When Lucy feels comfortable, it becomes natural to make eye contact- even if it’s quick- she’s showing warm feelings.”

She’s so right.  At home, Lucy has no trouble making eye contact with us.  She laughs, jokes, asks you to play with her and will usually look us directly into our eyes.  So often during her early intervention screening, I was adamant that Lucy had zero odd social behaviors.  As she began to get older, her autism began “showing” much more loudly.  I brushed a lot of it off with the fact that she was so young, but now they stare me right in the face.  There could have been so many people that said, “I told you so!” but thank God that not a single professional, friend, or even my sister has ever let me feel stupid for pushing an autism diagnosis to the curb.  They were right, but I couldn’t see it.

Eleanor continues to be different than Lucy in drastic ways.  I have to laugh when people say, “Boy, they sure are different!”  You don’t know the half of it.  Little things, for example, sometimes hit me like “YOU DIDN’T NOTICE THAT AS A PROBLEM” bricks to the gut.  “Which one, Nora.  Cookie or crackers?” I ask Nora before snack time, “Dooties!” Beautiful.  Small.  Subtle.  She can make choices.  Making choices for Lucy took us MONTHS of work.  Lucy never pointed to her sippy cup when she wanted some.  If Lucy had been our second child, would these red flags been much more apparent?  Would I have let the ‘a’ word sink in a little faster?

There is still so many people shocked by her diagnosis.  “I would have never guessed!  She seems perfectly normal to me!”  Contrary to what you may think, those words actually do not make me feel better about it.  These are usually people who’ve known her since birth.  She’s cute.  She’s charming.  You didn’t want to see it, just like I didn’t.  These are the people that haven’t seen me with tears welling in my eyes when I’m trying to talk Lucy through the steps that’s needed to walk out the door to the parking lot.

I’ll be honest with you, it has in the past made me feel like a really crappy mom.  I’ve been so frustrated, hurt, annoyed.  I remember absolutely losing it one time while we were in a super hurry to get out the door.  “WHY DON’T YOU UNDERSTAND!? WHY CAN’T YOU LISTEN TO ME?”  Of course, I made it worse.  When she was smaller I was just able to pick her up and throw her in the car, whether she was having a tantrum or not.  But that day, carrying an infant, diaper bag and purse… all I wanted her to do was to listen to me and walk herself out the door.  After getting into the car, I bawled like a baby, apologizing to Lucy for screaming at her for something she couldn’t control.  In fact, it’s hard for me to think about that particular day without feeling completely unworthy of being her mother.  I lost my temper.  I know it’s normal, but that doesn’t make it okay.  Luckily, since being medicated for PPD (a long story I’m not ready to completely share yet), I’ve noticed a huge change in my ability to calmly talk her through things.

The psychologist makes things look so easy.  She can get Lucy to do things that I’ve never seen her do with just a motion she makes with her hands.  I’m so thankful that my gut told me that this was a good choice for us- a way for us to move forward beyond her incredible strides she’s made in school.  I finally feel like can DO IT!  We’ll struggle.  I know it won’t be perfect.  But, holy crap, I can do this. And thank God I have someone to show me how.  Since I’ve already seen such a HUGE improvement (by the way I am SO FREAKING proud of her), this doesn’t scare me.  The world she lives in might be so different than mine, but I feel so blessed to be able to be a part of it.

There’s so much more I could say.  And I’m sure I will.  I call it “Our Autism” because we all have a part in it.  This is our day to day life with a child with Autism.  Gosh, there’s so much good I can say about it too.  It’s hilarious to watch a four-year-old have a 10 minute conversation that is verbatim lines from a movie.  It was incredible to watch an 18-month-old say the alphabet.  Her life will not be easy, but I will do every damn thing I can to make her ride less bumpy.  I pray that the world is sweet to her.

xoxo

4 thoughts on “What Our Autism Looks Like

  1. Mandy, you sure have opened my eyes with your wonderfully written message to all of us ignorant people. Lucy is blessed with the BEST possible mom she ever could have received. God knew what he was doing when he picked you. God Bless you, Love you, Arlene

  2. When Corey was 2, I remember just looking at his sweet, precious face and thinking, “I’ve ruined this wonderful child.” We moms are our own worst critics. Corey has grown into a wonderful, kind, thoughtful man, and I couldn’t be more proud. Lucy will be just fine, because even if you make a mistake, you continue to learn and grow, and she knows you love her. You can’t be perfect, you can only deal with each day as it comes. I think you’re awesome.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s