I am amazed at the amount of growth I’ve seen in Isaac over the course of the last year. I’m not sure that he’s grown much physically, but he has matured this year. Last year as he left elementary school he seemed so small and young and this year he suddenly seems like he is approaching adolescence.
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.
I wrote some things on Facebook for Autism month in April that I decided I wanted to Save somewhere else so I’m posting it here:
I love that they added the word understanding to autism awareness month! I feel like most people know autism exists, but few understand it well.
When my daughter, Nicole first got her diagnosis, I was careful to say she has autism and never call her autistic. I saw the word autistic as an all encompassing label and there is so much more to my girl than that label. She’s bright, beautiful, creative, funny, energetic, loving, and joyful. I thought that calling her autistic meant that autism was the most important thing about her. It’s been a few years since her diagnosis and my understanding of what that label means has changed completely. I see autism as an important part of her identity, but not a bad part. It’s not something to be cured, it’s something to understand and embrace.
I recently listened to the book Neurotribes, The Legacy of Autism and the Future of Neurodiversity by Steve Silberman. I highly recommend this book. The author describes the complexity, diversity, and brilliance found in autism as he describes the indispensable role autistic people have had in our society and the need to embrace neurodiversity.
In the book, Silberman quotes Jim Sinclair, an autistic adult, who describes autism, not as a normal child trapped within an “autistic shell,” but autism is a “way of being …[that] colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.”
“This is what we hear when you pray for a cure. This is what we know when you tell us of your fondest hopes and dreams for us: That your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”
Somewhere near the end of the book, the author quoted someone advocating embracing the word autistic over “person with autism” because the latter sounded like autism was a disease to be cured and the former projected acceptance and pride in one’s identity as an autistic person.
Charlotte seems to be maturing right before my eyes these days. She’s interested in make-up, she has a crush on a boy, she actually thinks about what she wears to school. She has even started remembering to brush her hair occasionally without being asked.
Here’s what I wrote about Ila last year when she turned 6.
Ila has blossomed with the whole school experience. She was worried that she wouldn’t love first grade as much as she loved Kindergarten, but she has found that first grade is great too! I don’t have as many opportunities to volunteer in her class this year, but everytime I come in she is always thrilled to see me. She eagerly anticipates the days I am coming in and she jumps up and hugs me as soon as I enter the classroom.
After Little Wildhorse Canyon, we had lunch at Goblin Valley then let the children run and climb:
A few weeks ago, we took a Saturday and went on an adventure in SouthEast Utah.
I have always loved looking at picture books, so consider this blog post our Timpanogos Hike picture book, with some commentary.
Here we are at the beginning of the hike–so hopeful and relatively clean:
Our hiking group consisted of Zach, myself, Mickey, Isaac, Charlotte (pictured above) and David, Kiersten, and Mercedes (pictured below). Read more »
I’ve been so out of the habit of blogging, that I forgot to write about Isaac on his birthday and only just noticed that I had forgotten.
Twelve is a big age. Isaac is starting Jr. High in August (which is making me incredibly nervous). He was ordained a deacon in the priesthood at church and he is old enough to participate in the first proxy ordinances in the temple. Read more »
I’m so excited to share these before and afters. I’ve been itching to redo this bathroom since we bought the house and I’m so pleased with how well it turned out thanks to much hard work from my husband and his illustrious father.
I’m constantly amazed by this girl and how much she grows and changes every year. Last year I wrote about her first year with an autism diagnosis.
Nicole is a deep thinker with an inquisitive mind. She comes up with the most off the wall questions and makes me laugh all the time. She makes life so much more interesting. I regularly share the funny things she says on facebook and several of my friends have told me that she is the most amusing part of their fb feed. She is curious about everything and her enthusiasm for things draws everyone in. Read more »
Nicole was telling me that she has started writing a story at school and she is excited that she gets to finish it tomorrow. I suggested she could write a story at home to show her teacher and this is the story she wrote:
“The Magical Ms Bre By: Nicole” Read more »
Thomas is a little smarty pants. He has had a natural love of letters and numbers for years. Last year I posted videos of him playing with magnetic letters and putting them in alphabetical order (see link at the end of this post). This year his reading skills have really taken off. He learned all the kindergarten sight words before his big sister, Ila. When Ila started bringing books home from kindergarten, Thomas would read over her shoulder, often saying the words before Ila. We had to start giving him a turn to read the books after Ila reads them. We give each of the children a turn to read a verse of scriptures each night and Thomas is reading most of the words in his verse independently. He is constantly shocking me by reading words that I didn’t know he knew. Sometimes his reading ability causes me problems. Like when I told him we were going to Winco and he got mad because the store says “Winco Foods” on the outside. “YOU SAID WE WERE GOING TO WINCO, NOT WINCO FOODS!” (he actually had a tantrum about this a few times, I’ve had to learn to call it Winco Foods instead of just Winco). He has started reading all the names of the cereals we eat and sometimes corrects me when I call the cereal by our little nick-name for it instead of it’s actual name (ie: ball cereal = Reeses’ Puffs). One day I discovered that he can spell all of his siblings names except Charlotte.
(Here is a video of him reading. This was the first time he had ever played with these story-making magnets).
And here you can see the creation process:
Thomas loves to play games. He learned how to play Rummikub this year and absolutely loves it. I usually play several games of Rummikub with him every Sunday. He refers to the happy face tiles as “bad guys.” At first he was a little bit of a pill when playing because he didn’t like people to rearrange his creations.
Thomas is very vocal about his love of “cars and trucks, and airplanes and trains, and rockets and things that go.” His favorite vehicle is probably a tow truck. He also loves to play with Legos.
Lately Thomas has been carrying around a Beanie Baby frog who he calls “Lumpy Bumpy.” He takes the frog everywhere we go and sleeps with it at night.
Thomas is still good friends with Ian, though they’ve spent less time together this last year for reasons outside of their control.
Thomas has a new best friend in the neighborhood whose name is Sean. Thomas and Sean always have a blast together. We’ve started having playdates with Sean twice a week. On Monday Sean comes over from about 9:30-2:30 and on Fridays Thomas goes to Sean’s house from about 9:30-3:00. Thomas’s favorite days of the week are what we call “Sean Days.” The picture below is of Thomas, Ian, and Sean deciding what to do about a spider.
Thomas loves to play on the computer. He is able to login on his own with a PIN and navigate to whatever he wants to play.
Thomas’s favorite show is still Daniel Tiger. He has memorized all the little songs and will sing them periodically during the day at relevant moments. Like when he helps me unload the dishwasher he’ll sing a Daniel Tiger song about helping. “You can be a big helper, in your family. . .”
The foods Thomas loves the most are cheese sandwiches, pepperoni sandwiches, pizza lunchables, and ice cream. Ironically, he almost never asks me for ice cream, but he always asks his grandparents for ice cream whenever he goes over to their houses. He is particularly excited about the birthday cake ice cream that he has picked out for his birthday.
He still loves alphabet books, but his favorite books are Mo Willems books. We love the Elephant and Piggie series and the Pigeon series. Thomas likes to make up his own titles for Pigeon books like “Don’t let the Pigeon eat my lunch.”
Thomas is generally a very loving boy. He gives me lots of hugs and tells me how much he loves me. Since he’s my only kid not in school this year, he’s been my sidekick wherever I go and I love him to pieces.
Here is what I wrote about him last year when he turned 3.
Charlotte is my biggest animal lover. She loves every kind of animal and spends large amounts of time petting any cat she meets. She participated in a campaign with her father to try to talk me into allowing them to get pet rats. I never really agreed, but somehow we now have pet rats. Charlotte loves to hold the rats and pet them. She especially loves when they crawl all over her. On her Christmas list she wrote “a new pet.”
Charlotte is in the 4th grade this year and is enjoying learning about Utah history in school. Math is her best subject, her teacher was impressed that she got a 4 on some special pretest they took at the beginning of the year (the goal is to get a 3 by the end of the year, 4 is the highest possible score). Charlotte has signed up to participate in the knowledge bowl this year and is excited that the topic is science. I’m a little concerned about her ability to get up in time for the 8 AM study sessions, but we’ll see how it goes.
Ila started kindergarten this year and she loves everything about it. She loves her teacher and gets along well with her classmates and she’s so proud to be a school girl. I was a little worried about how she would do since she can be such a shy sensitive girl, but she has been confident and friendly and has made lots of new friends. Everyday she gets so excited as she tells me about what she did at school that day. She’s also lucky to have her mom volunteer in her class every Wednesday and her Dad teaching music in her class on Fridays. Today she asked me if I could guess what part of kindergarten was the worst and then she told me that it’s when they have to line up and go home.
Ila has been excited to learn to read. She has learned all the Kindergarten sight words and has been gaining confidence in her ability to read. She has started noticing and commenting on the different sounds in words all around the house. She’ll say things like “I want something for lunch that starts with a digraph.” (That means she wants “ch ch chicken nuggets”)
Ila adores her big sister Charlotte. Most days Ila spends all afternoon and evening with Charlotte and Lucie (our neighbor). The three of them make up imaginative scenarios about everything. If they have to clean something they pretend they’re in “slave school.” Sometimes they refer to the kitchen as the mess hall and pretend to be at a camp.
Ila’s love of everything orange has faded this year. She decided that pink was her favorite color for a few months and now she says blue is her favorite. I’m hoping she changes her mind back to orange because it’s unique and it represents her roots (as a girl who was born in Knoxville).
Ila is an animal lover. She thinks every baby animal is adorable and loves to talk about animals. She often carries around little stuffed animals.
Ila is still an intensely picky eater. Some of her siblings were starting to catch on to the fact that she got to eat something different at every meal, so we’ve recently started requiring her to have a small bite of 2 parts of our dinner before she can choose something else to eat. There has been much crying and complaining, but she’s managed to taste more things in the last month than she has in years and the other kids have stopped requesting other food too. She even secretly admitted that she’s starting to actually like pizza and she doesn’t abhor potatoes anymore.
She loves to help me bake, especially if whatever I’m making has chocolate chips in it.
Everyday Ila tells me she loves me “this much” and stretches her hands out as far as she can or tells me she loves me “a tillion” which is a made up number that’s more than a million billions. Then she’ll often follow it up with “and this is how much I hate you” which she will represent by holding her hands together as if to say not at all.
We got a call towards the end of September offering Nicole a spot at Spectrum Academy. It’s a charter school for kids with Autism. We toured the school last year and felt like it would be a really good option for Nicole. I really love my kid’s home school (Foothill Elementary) and I loved having all 4 of my school aged kids in one school. Unfortunately, I felt like our home school didn’t have the perfect place for Nicole. The regular ed class is too big and didn’t have enough support and the small group seemed too restrictive and not challenging enough. I love the idea of her being in a class with her peers. Kids with the similar abilities and similar disabilities. The thing that I was most excited about is that they said they were seeing the kids develop genuine friendships.
They gave us 48 hours to decide or they’d offer our spot to someone else. Spectrum Academy does a lottery system for enrollment, so it can be tough to get in. Clearly by the title of the post, you know what we decided. We got the call on Tuesday and she started at her new school the following Monday. I picked Nicole up early from her last day of school at Foothill on Friday. This picture is of Nicole with her Foothill teachers.
Her teachers have been very kind and supportive. I felt a little sad pulling her out. I took her straight from Foothill over to Spectrum so she could see the school and meet some of her new teachers. This is Nicole in her homeroom.
The school runs a little bit like a Jr High. The students start out in homeroom and then they go to other classrooms for other subjects depending on their levels. They test the students to determine appropriate levels for math, reading, ect. If the student preforms well, they can move up, if the work is too challenging/stressful, they can move down. It’s a continuously leveled system. The whole school is designed for kids with autism which is particularly evident in places like the bathrooms. It’s a new experience for all of us. Nicole was telling me about the upcoming fire drill for two days and we got an email from the principal about it before it happened. (Things like fire drills can be traumatic for these kiddos).
She has been in her new school for about a month now. I asked her today which school is better and she said “Foothill is better because it’s the best school and it has more stuff” but when I asked her if she wanted to go back to Foothill she said that she wanted to keep going to Spectrum so that she could “get used it it.”
She had her first friend from Spectrum over on Thursday.She was super excited to have her friend over, but they occasionally had to be reminded to play together instead of just doing their own things.
I feel like I don’t know exactly how she’s doing at school because I haven’t been able to observe her at school. They require background checks to enter the school and I can’t volunteer to help out in the classroom on a regular basis. I can schedule 15 minute observations which I haven’t done yet since I wanted to give her a chance to learn the routines.
The school itself is about 15 minutes away which means it has added more than an hour in the car to my daily schedule. Since she started I have felt like my schedule is more demanding and stressful. I think I expected to have more free-time with 4 kids in school. I suppose that might have been true if I wasn’t volunteering in the schools as much as I am and if I didn’t have a half day kindergartner breaking up my day.
After our hiking adventures in Arches National Park a couple of weeks ago, I started getting the thought that the kids (especially Charlotte) could take on a serious hike. I had a really great hike on Deseret Peak a few years ago, and the week after Labor Day seemed like a good time, but I hadn’t really committed to anything until the night before. It all felt like it was a little impulsive, but I invited my mom, told the kids, and we set off at 6:30 on Saturday the 12th. It’s a bit of a drive out to the trailhead; we got started hiking around 8:30.
One thing about Deseret Peak is that it’s an alpine wilderness surrounded by Utah’s desert. There are lots of woods on the way up, and even though it was late in the year, the stream was still running. A view of North Willow Peak through the trees from the trail:
I said this is a serious hike. Well, for folks more athletic than I am (and that’s most of you!), it’s not so bad. A little over 4 miles to the summit, but a lot of elevation gain: about 3600′. Here’s the crew climbing up some switchbacks:
There’s a tough climb up to a ridge that’s right around 10,000′. Once on the ridge, a big meadow opens up, with some nice rocks for having lunch:
Isaac was pleased to note that no one had thrown up at this point. (Isaac threw up on our Delicate Arch hike, and I have a little history of barfing when I get to about 9500′.) After our lunch break, we hit the trail up toward the summit. At this point, there’s still another 1000′ to climb, and after the switchbacks up to the ridge, it can be a little tiring. We met some nice folks from Florida who called it quits at about 10,500′.
I kept telling Isaac and Charlotte that they’d know we’d made it when they looked around and there was nothing higher than them. I could tell they were hurting a little on this last stretch. You really feel the altitude, and it takes some commitment to keep going up. There was a little complaining, but I kept telling them to think about the positives: think about telling your friends how you toughed it out; think about being higher than you’ve ever been before; look at how far up we’ve come already.
Here we are just a bit below the summit:
The view from 11,031 feet:
Time to head back down:
We made pretty good time back down to the ridge, where I got a nice picture of the kids enjoying the view to the north. The van is 2600′ down and 3 miles away still (somewhere behind Charlotte’s head, I think):
I was proud of how well Isaac and Charlotte (not to mention my mom!) did with this hike. It’s a lot of climbing for a 9-year-old and an 11-year-old, and they toughed it out. I’m always pleased when they’re willing to do tough things, and this hike will prime them for more adventures. Assuming I can keep up with them.
Nicole has been really interested in bugs lately. I’ll find her outside talking to ants and offering them things. In the picture below, she is giving an ant a ride on a swing. As she pushed the swing she kept talking about how happy the ant must be and how much fun the ant was having.
First day of school breakfast: Overnight french toast with fresh whipped cream and sausage. I wanted to make something special for breakfast, but it turns out my kids like regular french toast much better.