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I am struggling to come up with just the right word to describe what this year has been like for Nicole and for us.  It was almost exactly a year ago that we got her Autism diagnosis.  At first it seemed like no big deal, it didn’t actually change anything about her to have a name for her peculiarities.  Then everything changed.  It was almost like she knew she had a title and now she needed to live up to it.  Only she didn’t really know anything because we didn’t tell her.  The first real memorable change came just before our trip to Ohio.  She came with me to run some errands and while we were out, Ila needed to use the potty.  Nicole refused to go in the multi-stall public restroom.  I don’t remember the specific details, only that she screamed and I felt panicked about leaving her outside of the restroom by herself or leaving Ila to go in by herself.

The trip to Ohio was stressful and in some ways traumatic.  At our first stop (Martin’s Cove), Nicole wouldn’t go in any of the buildings.  She was convinced that there was fire in each of the buildings.  She would start screaming if you tried to take her inside.  She refused to enter any bathroom along the trip.  She wouldn’t go near statues because she thought that if you touched them you’d turn into a statue.  It was our first real taste of her extreme fear and anxiety.  She started having regular tantrums screaming “you’re wrong!” or “you’re bad!” while kicking and screaming.

I tried to do my own little summer school for Nicole to teach her some of the academic skills that she was struggling with, but each session ended in her screaming at me.  Either I was teaching her the wrong words or I was teaching them the wrong way.  I started to really worry about first grade.  How would she handle the multi-stall bathrooms?  What about lunchtime at school?  What if she had a big tantrum in the classroom?  She even started randomly yelling words periodically in the weeks before school.  She’d be laying in bed and I’d hear “. . . .MAYBE. . . .BECAUSE. . . .SOMETIMES. . .”  not full sentences, just random words with no context.  She was saying them all the time.  During prayers, during play, during meals.  I decided to write her a social story about first grade and take her into the school to help her become more comfortable with all the changes that were coming.  It didn’t go super well.  She wouldn’t go in the bathroom.  She argued that the lunch room was not for eating, it was for PE class.  We went to visit her resource teacher and talk about some of my fears for next year and I sent an email to Nicole’s regular ed teacher and her resource teacher describing Nicole’s learning style and behavior.  I took Nicole back for another walk through the school in the week before school and had a conversation with the resource teacher about first grade.  She talked me into considering the small group class instead of mainstream.  I had a lot of concerns about changing her placement, but I felt relief when I met and talked to the small group teacher.  They assured me that this change didn’t have to be permanent. They said that as she was able, they would send her in to regular ed with her peers and that there was a potential for her to return to a fully mainstreamed class in the future.  In the end I decided that this placement change was the right thing to do.

It was clear in the first weeks of school that the placement change was appropriate.  Nicole did have tantrums at school and she did need the extra help and support.  Nicole’s fear and anxiety continued to build.  She had always had periodic fear of our cats who had been around since before her birth and had never bitten or scratched her.  This fear of the cats became constant.  It got to a point where she’d scream if a cat walked into the room.  She refused to go down the hallway if a cat was in the hall.  She even started hiding under a blanket all the time.  She’d be playing in the playroom with a blanket over her head and then scoot along under the blanket to interact with others.  Then she became afraid of birds.  She’d cover her head and scream every time she went outside, including at recess at school.  She started licking the doorknobs because she said it would keep the birds away.  I wrote her a social story about birds which actually helped quite a bit, but as soon as one fear was reduced, another one would appear.  She became afraid of garbage cans and couldn’t go to sleep until we removed the garbage can from her bedroom.  The anxiety/fear was taking over every aspect of her life so we scheduled an appointment with her doctor and started her on medication for anxiety.

The medication worked!  I remember a few weeks after she started it that she was sitting in her room playing and there was a cat right next to her.  She wasn’t screaming or hiding under a blanket.  When Zach mentioned that a cat was sitting next to her,  she just said “yeah, the cat likes being under my bed.”  The random unreasonable fears disappeared.  We still have to coax her into bathrooms, but she isn’t living under a blanket and her daily tantrums stopped.  It was a life changer.

I still don’t have just the right word for what this year has been, but it’s been a year of changes.  A year that has been somewhat trying, but full of positive experiences.  Some of the challenges that were new to us this year have been mostly overcome and others have been minimized while some still remain and may plague her through most of her life.  When she turned 6 she was in mainstream (regular ed) kindergarten and sharing a room with her two sisters.  Now as she’s turning 7, we’ve moved her into her own room and she’s in a small-group special education classroom and in between those things there have been a lot of experiences.

Now imagine that I have this magical transition sentence that makes those first few paragraphs about how Nicole has changed this year flow smoothly into the next part I’m going to write about her personality and interests.

Nicole is proud of her identity as a girl.  She likes to surround herself with girl things.  She still refuses to wear pants.  She will wear skirts and dresses with “skirt pants” (leggings) and she’ll wear shorts (even denim shorts).  She likes things that are beautiful, sparkly, and colorful.  She still loves purple, but has recently proclaimed that she’s starting to like pink more than purple.  One time while writing she held up her paper and asked “is this a girl A or a boy A?”

Nicole loves rainbows and regularly talks about “The Rainbow Queen” who is a fictional queen that she made up a few years ago.

She loves to play on the computer.  She used to just play on starfall.com, coolmathgames.com, and pbskids.com, but now she is often found exploring various princess games and other things.  She must have been on some kid’s dental site recently because she has been jumping up from the computer to brush her teeth and ask for milk with calcium in it.

Nicole learned to ride her bike without training wheels this year.  She just announced that she was 6 and 6-year-olds don’t have training wheels.  Grandpa removed the training wheels and she took off.  Since the weather has been nice she has really enjoyed riding her bicycle around our block.  She’ll ride around over and over without telling anyone before she hops on her bike (which makes me a little nervous, but she seems to do ok).

Nicole learned how to climb trees about a month ago.  She was so excited about this new skill that she started trying to climb every tree she could all over the neighborhood and she has some scratches on her arms and legs to prove it.

Nicole doesn’t generally have a lot of interest in friends these days.  She used to spend a lot of time playing with her sisters, but now I see her playing with her little brother more often.  She has identified a little boy in her class as her friend and decided that she will marry him, but she has never asked to have him come over and play.

She loves her primary teachers.  She used to not like adult males very much, but now she sits by her male teacher every Sunday.  One week after her teachers had been out of town the previous week she sat down next to her male teacher, leaned in and asked “did you miss me very much?”  When he asked if she missed him, she said “no.”

She loves music.  She loves to dance and sing and play on the piano.  We tried piano lessons for her, but she had a hard time with them.  She was more interested in playing her own made-up songs than the ones she needed to practice.  She sings all the primary songs loudly in church, even if she doesn’t know the words.

She loves to do art.  She likes to color, cut, paste, paint, staple, and tape.  Often when she does her homework she makes up elaborate stories about all the things on her homework page having a big party and everything on the page is a detail of the party.  She’s very creative.  Sometimes her ideas are bad (like the time when she chopped off a lot of her hair so that she could pretend she was a baby or when she cut a hole in the slip n’ slide because she was building a fort out of it and wanted a door).

Her best subject is math, but she’s starting to make big improvements in reading as well.  She struggles the most with writing and spelling, but she’s making progress in those areas as well.

Nicole is generally a very happy. lively fun girl.  She jumps and dances as she plays and talks.  She’s creative and silly and I love her to pieces.