Nicole at 9
I have been thinking about writing my annual post about Nicole for the last month since her 9th birthday, but I feel like I’ve written about her so much that I’m not sure if I have anything new to write. I’ve written a yearly post near her birthday she turned 8, when she turned 7, her 6th birthday (I can’t seem to find the about her post for turning 6), Nicole at 5, Nicole at 4, Nicole at 3, Nicole at 2, and Nicole at 1. In addition I’ve written about her neuropsychological testing part one and part two, autism diagnosis, a personality sketch at age 2 1/2, starting a new school a year and a half ago, an example of one of her tantrums (say what I said), her sense of style, Q and A with Nicole (Comparison at age 3 between October and March), evaluation at 3 1/2, and a variety of other posts. Not to mention the one liners I share on fb regularly and the things I wrote about her in April for autism awareness and understanding month.
I guess the only answer is to just start writing and see where it takes me.
Most of what I wrote about Nicole last year hasn’t changed much. She still hates the sound of toilets flushing. She still loves beautiful sparkly things. She is still a deep thinker with a curious mind. She is also still a literal thinker which frequently leads to misunderstandings. I didn’t realized how much we communicate figuratively until I started experiencing the world with Nicole.
She still has bouts of anxiety that make her suddenly afraid of everyday things. Earlier this year I took her to see a doctor at Primary Children’s hospital. She panicked when she saw the following sign:
I had to convince her first that it just meant you have to use the stairs only if there’s a fire and also that I was absolutely sure the building is not on fire. She refers to her anxiety as stress. I was impressed when she came home from school with a book about stress that she had read and marked. She choose a strategy from the book and made herself a stress jar:
Nicole regularly screams in parking lots and when she crosses the street. She’s really worried about getting hit by cars. She will even scream crossing the street while holding my hand and crossing at a crosswalk. We live in a small neighborhood with very little traffic and her grandparents live across the street. When she crosses to her grandparent’s house she’ll look up and down the empty street over and over again then suddenly bolt across the street screaming.
She often forgets how to communicate when she’s upset. She’ll put her hands over her ears or start moaning or squeaking. When she does this, it takes me awhile to get her to put what’s wrong into words. Sometimes I have to make guesses or give her parts of sentences to finish. Most of the time she communicates ok, but when she’s upset, she can’t remember the words to say what’s wrong.
Nicole has this notebook she writes in at church. It is full of random things and she ads to it in a random order. (Have I ever mentioned that she loves the word random?). Some pages are journal entries with pictures. Others are parts of scriptures copied word for word. Some pages have questions or requests like “draw something you love.” As she adds things to her book, sometimes she turns back to the front and edits the front page to describe what’s inside. Here is the current front page of her notebook:
Nicole still loves bugs, but she hasn’t spent as much time looking for them and studying them this year. She will always come look when someone calls out to her that they found a bug, but she doesn’t spend every afternoon turning over rocks looking for them. Towards the beginning of the school year she was collecting roly poly bugs and zipping them into a mesh pocket in her binder with some grass clippings and cheese-it crumbs. One time her teacher noticed her talking to her binder and discovered she had zipped a praying mantis into the mesh pocket and she was trying to feed it cheese-its. Nicole cried and cried when they made her take it outside and release it. She’d rather love a bug to death than have to let it go. Her teachers started asking her to open her hand anytime they noticed her making a fist and a bug usually crawled out each time she did. One day when she opened her hand, a moth flew out.
Nicole is still doing well in school. She loves school and was very sad about summer break. She kept asking “will you please send me to summer school?!” Nicole likes structure and rules are important to her.
Nicole has embraced her identity as a girl with autism. She has started telling people that she has autism when she meets them. She has also started bringing up autism regularly in everyday life. She has a good perspective on it and doesn’t see it as a bad thing. I’ve tried to teach her to see it as “different, not less” (I think that motto comes from the autistic community).
Nicole’s favorite computer games are Animal Jam, Terraria, Duck Game, and Star Bound. She also sometimes watches YouTube videos of people playing with toys or playing some of her favorite games. She has this paranoid fear that characters from games will come out of the computer ever since she watched a video where someone made it look like a character came out of a game.
Nicole admires her big sister, Charlotte. She regularly seeks Charlotte’s approval and when Charlotte obsesses over something, so does Nicole. Charlotte has decided that fennec foxes are her very favorite animal and as a result all three of my girls are obsessed with foxes. They all love nature and animals and start hunter hating clubs. They carry around beloved stuffed animals and treat them as if they’re alive.
Nicole likes to be in familiar places. She rarely wants to go out on errands with me and usually chooses to stay home if offered a chance to go out. Crowds and noise sometimes stress her out.
She likes to play independently and is usually very happy to do her own thing. She does enjoy playing with her siblings and will seek them out and invite them to play with her. We have friends at our house daily, often multiple friends over at once, but Nicole rarely requests to have a friend over. I do feel a little guilty about not setting up more opportunities for her friends to come over. Because she goes to a charter school, her friends are spread out all over the county. She also has a lot of friends with autism and they’d probably need more supervision and guidance to play together and I’m often reluctant to commit myself to that additional work.
Nicole has figured out how to send me messages from her computer. They come through as texts to me, but she uses Google Hangouts to send them. At first it was just bunches of pictures and emoticons, but now she is starting to communicate with words when I’m away from home. Here’s an example of a recent text from Nicole:
Nicole is both intrigued about and afraid of diseases. Two of her favorite diseases to talk about are Black Death and Leprosy. One morning she thought I had leprosy (I have no idea why) and wouldn’t go near me or let me touch her all morning. Nothing I could say convinced her otherwise, luckily she forgot all about it by the time she got home from school that day. Another time, she panicked when she learned that the boy we carpool with has Asthma. I tried to convince her it wasn’t contagious, but she was still covering her mouth and staying as far away from him as possible after school when I picked them up. Somehow she learned about “the cheese touch” (from diary of a wimpy kid) and thinks that she can avoid it by crossing her fingers. Once I found out she was doing this, I started watching and noticed that she constantly crosses her fingers.
Nicole sometimes has weird food issues. I’m always trying to encourage her to eat more calories because she doesn’t eat much and she’s very small for her age. She tends to like to eat the same food for most of her meals and then stop eating it completely for awhile. She likes to eat imitation crab and will eat it for breakfast every day and after school for snack and then suddenly she doesn’t want to eat it at all. She will eat Marshmallow Mateys at every meal she can, then they will suddenly “taste funny” and she won’t eat them for awhile. One time she proudly announced that she had licked a bowl of leftovers so no one else would eat it, but after I warmed them up for her, she “heard a buzz” and refused to take a single bite. Another time she claimed to have seen a noodle wiggle and wouldn’t eat noodles for probably a month or more. She will sometimes agree to eat some leftovers, but tell me not to let her see me warm them up so she doesn’t know they’re leftover. She made some butter last week in activity days, but was too afraid to try it. First she asked me to put it on some of her food when she wasn’t looking so she’d think it was from the store, but eventually she decided she was grossed out at the idea of eating something she made.
This next paragraph about medical things got really long and technical, you might want to skip it. Nicole dropped off the growth chart. She’s always been on the bottom of the chart, but in the last few years, her height dropped off the bottom line (3rd percentile) and now there is a space between the bottom line for her age and her height. She was referred to an endocrinologist who measured her growth hormone levels, X-rayed her hand for bone age, ordered a day long growth hormone stim test, and an MRI. The end result is that they discovered that her pituitary is within normal range, her growth hormones may be a little low, but not severely low, and the need for growth hormone is borderline. Her younger sister (Ila) is already on growth hormone shots and came in for an appointment at the same time. About a week and a half after the appointment, the nurse called and said that our endocrinologist wanted me to send her a picture of both girls to show the geneticist. The geneticist looked at the pictures and invited us to set up an appointment for Nicole. The appointment lasted an hour long and the result was a request sent to the insurance company to get approval for a microarray to find out if the patterns in Nicole’s DNA match any discovered patterns for groups with similar traits. The geneticist said that they are finding duplications and deletions of alleles in children with autism and that they are starting to find subsets of similar patterns and symptoms. All of this medical advancement in the area of DNA research is so new that it’s quite possible that she doesn’t yet match a discovered pattern, but that one day they may find a pattern that matches hers in the future. The MRI to look at her pituitary raised a concern about a chiari malformation of Nicole’s cerebral tonsil. She had a follow-up MRI a year later (which happened to be last week) and a few days ago, I received a call saying that everything was normal and she does not have a chiari malformation.
Nicole still gives me long hugs and tells me she loves me a lot. She is very kind and loving to her brothers and sisters. Last week she wrote them all nice notes for no particular reason. I love her to pieces and I’m so glad I get to be her mom.