Thirteen - part 1

We have come around the sun a few times since the last time I wrote; Scarlett is thirteen this week!

Scarlett at thirteen is probably the best Scarlett yet. She is funny, silly, independent in her own way and fascinating to know. Like all teenagers, she is aching to find ways to be her own person, to push the boundaries she has known and to try new things. She loves a good outfit - usually monochromatic - and has strong opinions about how her hair should be. She carries a Pokemon backpack with her most of the time - sometimes with snacks, sometimes with doll clothes. She loves her dolls and dresses them for occasions, often to match her own clothes if she can, and packs bags for them for our vacations, complete with bottles. She is still deeply attached to her favorite stuffed toy, Judy Hopps from Zootopia. Judy goes everywhere with her, and “waves” to people she passes.

The last year has been tumultuous for Scarlett - or for us - and I spent the last few weeks thinking about how to manage it. I started writing here 13 years ago to keep track of what was happening, and try to help explain and connect with others. The last year might be the most traumatic and challenging we have had since her first year, so I find myself back to needing to write it to remember it, to document it for ourselves, to share it so that anyone who wants to can try to understand the scope of what it means to travel the road of survivorship. I decided to write it in a few parts, so here is the disclaimer: There is a lot of good, and then things get a little dark, but she is okay. She is, in fact, great, as are the rest of us. So, if you decide to read further, know that we come out the other side okay.

She loves her brother and sister. Benny is 8 and Evie is 4. They are her biggest cheerleaders, despite the frequent irritation they all cause each other. Siblings will be siblings. They are learning how to engage with her, and watching them use the things they learn from us and her therapists to get her attention and include her in their games warms my heart. She is not alone.

It’s hard to describe her communication. She prefers to speak to communicate her thoughts, but she understands us better when we include sign language; unfortunately, she only has that from us at home, so she makes due everywhere else. She got new hearing aids this year that connect with Bluetooth to her tablet, and suddenly, she will wear them everywhere. She went from wearing them about 30 mins at a time, with a fight, to asking for them and keeping them in without issue for full days. She still uses familiar phrases to communicate most of the time, but will use longer sentences with novel ideas and words when she needs to - though we often can’t understand her on the first go. She is very observant and notices what is happening around her. She gets self-conscious of making mistakes and apologizes a lot, sometimes to fill when she isn’t sure what she is supposed to say.

She loves music. She is listening to something most of the time at home, the louder the better. She loves the IHeartRadio Family app on her tablet where she can swipe between channels quickly. She has favorites that we hear her sing along to - One Call Away by Charlie Puth comes up a lot. She loves having a bluetooth speaker to play things LOUD. She carries them with her in backpacks or purses, puts them on the edge of the trampoline and sets them up next to the bathtub. She has gone through several little ones, and bemoans their loss every time one is broken. We keep looking at concerts to take her to, but they are so expensive and crowded I haven’t been brave enough for more than KidzBop. I looked again and again at the Taylor Swift tickets when her tour was coming through, but it seemed like just too much - and then the movie version came! I got tickets for her and I to go this weekend and she loved it. She got dressed up, and the fans there made it so fun for her with dancing, friendship bracelets and lots of compliments on her dress.

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Over the last year, she has begun to draw. She used to resist any writing or drawing, color with us for a few minutes at a time in a coloring book or on a restaurant menu but otherwise ignoring crayons. Her OT goals still include writing her name legibly and reasonably sized. But, then she discovered Number Blocks. She is OBSESSED. She loved the show for a while, and was happy to see and hear it. And then she started drawing the characters. On paper. On post-its. On books. On the floor, walls and her own skin. Everywhere. More than once we woke up in the night to her awake and drawing all over the walls with crayons, markers, sharpies, chalk, anything she could find.

Mad about a tummy ache

Number Blocks

Scarlett sad, with Number Block #1 sad, because our dog was sick

We repeatedly told her not to draw on the walls, and showed her to use a piece of tape to hang her drawings. She then began to hang every page in her own galleries, and tape together pages to make bigger things. She still drifts to the walls and floor on occasion; it reminds me, I need to add some Magic Erasers to my shopping list…

Number Block in tape

Then she started to build them with other things. Blocks. Strips of paper she cut. Carrots at Disneyland. Train track toys. Boxes. Anything she can get her hands on. She dresses as the characters, and then uses a post-it or paper taped to her shirt as a label. “I’m One!” or “I’m Four!” When she isn’t being another number, she is just 12 - she sticks it to her shirt and makes sure everyone sees it - and we had better call her by that name, too.

Number Block in road tracks

She has filled sketchbook after sketchbook, gone through reams of drawing paper and rolls of tape, and boxes and boxes of markers. She has branched out from only Number Blocks and draws herself and other people and her favorite toys. She uses her drawings to explain how she is feeling - Scarlett with a sad face, Scarlett with a tummy ache (sad face + scribble on belly), Scarlett loves Mommy (many hearts). She draws bunnies, cats, rainbows and her siblings. Sometimes she adds words, or draws what she wants us to know (while I type this, she is sitting beside me drawing the pink cupcakes she wants for her birthday celebration.)

I am so happy she has found this way to express herself. I hope we can continue to foster this skill for function and joy. If she can’t make her mouth say the words she wants to tell me, I am happy to take it in crayons.

Mommy, Scarlett, Benny and Evie