Monday, March 31, 2014

Happy birthday (and Autism Awareness)

April is Autism Awareness month.  It's special to me because I spend all year becoming more aware of autism, learning about it so I can be a better mother to my son James.  It's a funny turn of events, since James was born at the end of March, so our celebration of him turns into a month of trying to better educate those around us to understand this thing that affects how he interacts with the world.

So let's start here:
Autism is characterized by three things.
1. Social interaction.  Autistic people can be shy or outgoing, but they will struggle to know how to connect with other people, often characterized by limited eye contact, trouble taking turns, and becoming overwhelmed by the presence of "too much" (too much...noise, light, physical touch, etc).
2. Delays in verbal and nonverbal communication.  Some autistics will never speak, but this should not be confused for having nothing to say.
3. Repetitive, stereotyped behaviors.  Don't all kids flap their hands when they get really excited?  Or repeat the same phrase over and over when they get overwhelmed?  Or just make random sounds at seemingly inconvenient times?  No? 

Now let's talk about autism and birthdays.
James began using single words around age four and a half, and we were like starving people who can only be fed with verbal communication.  "Say it again!" we'd cheer.  Whatever seemed to cause him to speak would be repeated over and over so we could hear his beautiful voice.  Just in the past six months, his words have really taken off, and he's using sentences and sometimes really loudly and clearly telling his little siblings what he doesn't like (it's true, I stand outside the boys' room and do a little happy dance when I hear his scream, "No Winston!  That's James' car!  Give me that!").  I really want him to have good manners, but for now, I'm applauding what I see as the seeds of self-advocacy that will help him later on.  Okay.  So apparently when you have a March birthday, you begin inventory the day after Christmas: what you got, what you want, how many days until I get presents again?  For the past few years, James has better understood the concept of time, the months, days passing, etc, so we start our countdown to March 30th.  He's had a recent renewed interest in Pixar "Cars"; combine that with his ability to navigate YouTube and find commercials for products that are no longer sold in stores...I've been getting a very specific request for the four cars he didn't previously have (if you're interested, they are Raoul CaRoule, Rip Clutchgoneski, Lewis Hamilton, and Shu Todoroki.  He would like the die-cast models to complete his World Grand Prix lineup.  Every day).  I was thrilled to find three of these at Target (on sale, no less) about a month ago, but several trips have come up empty for the Lewis Hamilton car.  When I checked Amazon, he was available....for $12.  So I let James know that *maybe* he was getting some new cars for his birthday, and if he got birthday money from the great-grandparents, he could purchase the rest.  And maybe this all seems mundane, not worthy of note...but he's telling us this.  With his words.  That is so HUGE.

We've been talking lately about the love languages, and how we should really try to love other people in the way that they feel loved (which is almost always NOT the way that we prefer to give love).  I thought about this as it pertains to parenting, and specifically to my child who is so easily overwhelmed, so inside himself.  I really wanted to watch him open his cars today.  I wanted to see the look on his face, and, if I'm honest, I really wish he would look at me and say something like, "Oh, thank you so much mom!  It's exactly what I wanted!"  But I'm not an early riser, and I'm certainly not "together" or even really "awake" until 11am or so.  After I talked it over with Chris, I grabbed the cars from their hiding spot, unwrapped, and put them in James' bed after he fell asleep.  This kid has been looking forward to playing with these cars for THREE MONTHS.  If it was all about me, and getting some sort of response for how awesome I am at buying toy cars, then I would have made him wait until this afternoon, so I could really appreciate his reaction.  But instead, I did what I thought he would like, and just cut to the chase.  Chris heard him squealing in his room at 7am, and he had at least two cars in his hands at all times today.  I think we did it right.

Another change we've made over the years is the way we celebrate James' birthday.  My instinct is to gather together in one place all the people who love James.  Family, teachers, friends, neighbors.  Let's spend two hours at our house, talking and laughing and eating and watching James open presents.  Guess who freaks out in such an environment?  So we pulled back.  We had immediate family over for cupcakes.  We shrugged at each other.  How do we make this special FOR HIM?  Last year, we tried something new.  James' birthday almost always falls over spring break, so Chris took the week off, and we did something different every day.  We went to the Cleveland Zoo.  We played at the park.  We went to Red Robin for dinner.  Each place was fun, and then we went home to relax.  It seemed to work.  This year, I asked James for his input.  "How would you like to celebrate your birthday?" I asked him as we snuggled in his bed at night.  "I want to go to Pump It Up," he whispered to me.  Again, this might seem really basic, but this thing of me asking a question and him responding to it in a way that makes sense to me....it's a rare treat.  Okay mister, you are going to Pump It Up!  We arranged to meet another family with boys James' age for an afternoon of jumping.  It was perfect.  Then my parents asked if we could all go bowling together, another of James' favorite activities.  We brought Winston and Girl, and invited our neighbor Amanda at the last minute, and she brought her friend Katie.  At eight people, it was almost too much.  But we had a great time, and James figured out how to hold the ball with his fingers in the holes, instead of rolling with both hands.  As we were leaving, another kid's birthday party arrived.  There were at least 10 young kids, and as many adults chasing them around, helping them bowl.  It made a contrast to our quieter celebration, but I was glad we chose to do it in a way that made James comfortable.

Instead of a cake, this year Chris suggested putting a candle in James' birthday donut.  We all sat at the table while he sat on the heating vent in the kitchen, and we sang "Happy Birthday".  When the song ended, James stood up and blew out the candle with a big smile on his face.  I was smiling too.  Our journey as parents has been influenced by the children we've been given.  A while ago, I started praying that God would show me how to be the best mom for James, for Winston, for Michael.  Not to be the mom that all the other moms want to be, or the mom with the best facebook photos, or even the kind of mom I think I should be.  Just who they need me to be.  I swear God is speaking through my kids every day.  And I'm finally learning how to listen.

Diary of a Mom shared this facebook status today, which I feel echoes how we celebrated James' birthday:
"Today, we celebrated her eleventh birthday. She was having a blast until she became overwhelmed. When she did, she said, "I'm going into the den because there's too much here." This time, I fought the instinct to convince her to stay. This was her party. She'd enjoy it in her way.

She left her guests in the kitchen and went into the den to bounce on her peanut. When the next animal came out, I called her. She came to look, was the first one to pet it, then went back to bounce again. When the next animal came out, so did she. It worked for her. She knew what she needed. And I, finally, knew enough to understand that there was nothing sad or "disastrous" about giving it to her.

After she blew out her candles, she said to no one and everyone, "This has been my best birthday of ever!"

I dare say we're all getting the hang of it."

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