Tuesday, May 24, 2016

Turning Twelve

January 2016

Lilli turned twelve.

The party was six days ago, but three shriveled pink balloons still dangle from our front porch light. Light pink crepe paper is still stretched across the dining room and a gold star hangs in front of the window. This is typical for our family, to leave decorations up for a week after a birthday. We put them up early and take them down late. It only comes once a year, so we drag it out.

It was my favorite birthday of Lilli's so far. 

There have been other great birthdays. There have been quiet birthdays, I remember one birthday when I felt certain that she was disappointed, but she could not tell me specifically why. 

I remember another birthday when we figured out too late why she was unhappy with how we celebrated. It turned out okay, but she had a few moments of sadness that made me feel bad.

There was the birthday when I made her a black bean brownie cake. I was trying to find a gluten free alternative, and that was one of my early attempts.

It tasted awful.

Lilli has learned how to be a good sport about things. She has been misunderstood and misinterpreted for years. Can you imagine if someone else chose for you how you should celebrate your birthday each year? 

Imagine you are turning twelve. Say you decide in your mind you want a rainbow cake with purple incing, and you want to watch a movie with your friends and have lots of purple and silver balloons.

But you cannot talk. 

Your mom says, "Do you want a white cake or a chocolate cake?" Which does not help, because you do not want either of those choices. You want a rainbow cake. She puts the vanilla and chocolate choices on the ipad, and asks you to touch the choice you want. So you are forced to pick between two things you don't even want. 

You pick vanilla.

Then your mom holds out pink streamers and white ones that say "Happy Birthday" on them as a choice. Those were the ones we had left in the birthday decoration box. There are two gold stars from Christmas. "How about pink streamers and gold stars?" Your mom asks. "Yeah! Pink and gold!" your little sister shouts. Your little brother starts talking about HIS birthday and what decorations HE wants, yet his is over a month away. 

Your mom googles "pink and gold stars tween birthday" and comes up with some amazing party pinterest pictures that she could never duplicate.

Oh well, this will just be like every other year. My mom will throw a party that is different than what I want, but I can't tell her what I really want. 

This is what I imagine Lilli thinks to herself. I try very hard to guess, but it will never be the same as my other kids, who get to imagine exactly what they want and we create the party together, through lots of detailed conversation.

Lilli seemed okay with the decorations and the plans. I think she liked her cake. I tried to make it "Twelve Year Old" ish, based on some tween birthday cakes I saw online. I could not give her the Pinterest, long table with perfect decorations and tablecloth, party favors and huge outdoor tween party with hanging tissue paper flowers and twinkle lights. Pinterest sets the bar too high for average moms like me. But it was still nice.

Every year we get a little better, I think. I've been able to give Lilli choices and have her point, touch, or use the ipad to choose. But I know that the choices I give her might not include the choices she has in her mind, and that frustrates both of us. 

The ipad has given us new freedom. But that freedom is still very limited.

I did what made sense, and I did what was "do-able" for our family that would work for Lilli's anxiety with new situations and groups of people.

How does any twelve year old girl want to spend her birthday? I thought. I tried to remember back to when I turned twelve. 

A twelve year old wants to spend a birthday with her girlfriends. Every year up until now, Lilli has not had any friends to invite. Oh there have been a few children here and there from classes at school or church, but never one specific child who reached out to Lilli with purpose and pure friendship, no strings attached.

Until this year.

This year, Lilli had three friends to invite. A good friend from school who calls Lilli her "BFF."

...Pause for just a moment and cry for joy with me about that.

These girls....hearts of pure gold and awesomeness.

And two girls that are neighbors and good friends to all of our children, and they include Lilli and invite her to play. 

We cleaned the house and decorated. We invited just the two families - just the girls and their parents. Moments before the party was to begin, Lilli walked into the kitchen as my silly bird clock tweeted. I was wiping the counter and making sure we had all the food on the counter ready.

"There's the two o'clock tweet, Lilli, were you just waiting for that bird to tweet so that you know your party is starting and your friends are coming?" Lilli put her hand on her neck  to answer me and smiled and jumped. She was making happy sounds and chattering away in her mysterious "Lilli language" until the first family arrived.

As soon as they walked in, Lilli got anxious.

Her happy sounds turned to upset sounds and she began to drag people around, "asking" them to give her the iphone she uses to watch her favorite Youtube videos. She began to cry. Her sounds of distress increased and my distress and anxiety began to appear too. I so wanted her to love this celebration in her honor.

Finally, she went to the back door like she wanted to go outside. My husband opened the door for her and she went out into the carport and climbed into the mini van. She sat in the van, in her seat. Trying to calm herself down. This is one of the ways Lilli tries to calm herself, by getting into her seat in the van. Maybe it feels safe and quiet in there, I'm not sure why she does that.

When your non verbal special needs child has extreme anxiety, you try a lot of things to help them.

Sometimes you do weird or unconventional things. Sometimes you do things you don't want to do. Sometimes you do things you would never let your other typically developing children do, and it's unfair.

My husband and I had a quiet consultation in the corner of the kitchen and decided against our wishes to give Lilli the iphone. Here's the thing about the iphone.

We hate it.

But it helps Lilli calm down as she gets lost in her world of repetitive Muppet Show and Sesame Street clips on youtube. And this was her day. Her party. Did we want her to sit out in the van, anxious, during the whole party?

As soon as we gave Lilli the phone, she was happy to come in and be with everyone. She was all smiles. She leaned in and gave hugs and was completely fine.

She had her iphone "security blanket" in her hand, and she was able to function socially.

I don't really get it, but I don't really get Lilli sometimes.

So, all of the pictures from the wonderful, happy party have Lilli with her iphone playing YouTube.
She sat on the couch next to her BFF from school and watched as the presents were opened for her and we all exclaimed over them. She got all twelve year old appropriate gifts. A cool pillow for her new bed. Hair accessories. Cool clothes. An MP3 player.

She was all smiles and laughs.

You know you are loved if you are put into a "Lilli headlock."
It was an amazing day for Lilli, because she participated in her entire birthday celebration, happy the entire time. I wish she didn't feel like she needed the iphone to calm herself down in unfamiliar, unpredictable situations.

But life is one step at a time, for Lilli and for us as her parents.

We will figure out another way for Lilli to calm herself. And I will smile at the pictures of her birthday despite the iphone, because it was a great birthday.

Lilli has friends now. The best present of all.