autism spectrum disorder

June 14

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Today is Wednesday, June 16. Which means I’ve distanced by two days when Z got her first cavity filled.

We scheduled the appointment last Wednesday, and I’ve tried not to stress out about it for five days.

When Monday came, we didn’t really know what to expect. Like we thought we’d try the nitrous oxide. And we didn’t know if she’d keep the mask on. Or how she’d react to the gas.

But Z sat down in the big chair. The assistant lay the seat completely flat. She put the little rubber snout thing over Z’s nose, and she didn’t push it away. Reilly got out his phone for her to look at while the dentist was busy.

The first minute was the worst minute.

The rest of it went the best it possibly could. Z relaxed really well and the dentist worked quickly. It seemed like a long time, but after applying sealant to the other molars and then cleaning out the cavity and then putting in the glue then the filling, I guess maybe 20-25 minutes passed? There was also a lot of water and air and suction and that flashy sterilizing light thing. It happened fast and in slow-motion at the same time.

I sat at the foot of her chair and gently squeezed her leg to let her know I was there. Reilly was next to me. That was probably more for our peace of mind than to comfort Z. She seemed completely fine.

I think maybe she was just enjoying the gas the whole time.

She really did terrific. Couldn’t have gone better.

I’m so grateful.

Last Day of School

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Today was a fun day for our little girl. Sort of.

A fire truck came at the end of the day to spray the schoolyard. Z’s class came out to play in the water, but it was too loud for her, so she went back to the classroom. I came early to watch the truck, and before I knew Z was in class, I stayed on the field for a while and took some video. One of the aides found me and said that Z was in class.

I picked Z up from her classroom. We walked to the schoolyard. Z saw the firetruck and the mist spraying from the giant nozzle. She liked the coolness of the water. It was still pretty loud: kids were running and screaming everywhere. She ran around for a bit, then the truck shut off the water, and we headed home.

We did fill up the little pool on the back patio, and she splashed around for a while.

Life is just so much more fun when there’s less noise.

Ain’t that a lesson to learn.

Dance Festival

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Our girl participated in an end-of-school dance festival today. She danced with the other first graders. She watched the video many times, she was familiar with the moves. But did she do the moves? No. Did she move when the music moved her? Oh, hell yes.

Was she holding a pine cone while she danced? Yes, that, too.

She watched the other first graders perform, and she loved jumping around while the music played. She smiled so big. I caught about half of it on video that I hope to show her soon. She did such a great job.

I couldn’t be prouder.

She loved watching the other grades dance their numbers, too.

I told my brother today that if at the end of every school year she performs in a dance festival, and all she does is jump around and smile, I will go every year to watch just that.

She’s pure joy.

Monday Morning Movie

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Sunday night someone decided not to sleep through the night, and she woke up at pretty inconvenient times. The first time was not long I’d fallen asleep for the night, maybe 11:30pm. I heard her crying and went to her room and lay next to her until she calmed down. Then I returned to my bed and fell asleep. Then around 3:45am she started complaining again. This time I went to her room and told her how important it was to sleep, because she had school in the morning. I curled up at the end of her bed with a blanket she wasn’t using. I slept, sort of. She didn’t fall back asleep. So at 6:30 I got up and we started our day.

Z wanted to watch a movie. She wouldn’t need to be ready until two hours later, so I listed off some choices. She asked for Disney Pixar’s Coco. This movie calms her, and she needed to be as calm as possible with the little sleep she got. I couldn’t say no.

While the movie played in the living room, I brought Z some breakfast and her water bottle. I looked at work emails and made sure nothing was too pressing. Toward the end of the movie, I brought down some school clothes, and she changed clothes. I also brushed her hair.

It came to the part where Miguel has come back from the Land of the Dead and finds Mamá Coco at home, looking very depressed and not responding when he describes seeing her Papá. His family come after him; he sees the guitar on the floor and starts to play for Mamá Coco, “Remember Me.” Coco slightly moves her finger, and after a moment she joins Miguel in singing.

That part always makes me cry. For all the reasons.

We finished getting ready for school. As far as I know, Z had a pretty good day. Last night we tucked her in. Then we watched some tv before bed. When we lay down and closed our eyes, we did not open our eyes until our alarms went off. Which means Z slept through the night, too. She felt the effects of not getting enough sleep the night before. Poor thing.

But I love when she chooses that movie. Every time she asks for Coco I’ll put it on.

Soon

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The little one seems to have some separation anxiety.

This morning I parked at the school, and we sat in the car for a few minutes before walking to her classroom. Z said, “Hi, Mom. Mama soon.” And I said, “Yes, we’re at school right now. You’ll go to your class, and I’ll pick you after school.”

“Mama soon.”

“Yes, babe. I’ll pick you up after school.”

When I pick her up at the end of the day, the aide spots me, and she points my way and tells Z, “Look, there’s mama soon.” I take her hand, and I ask about her day as we walk back to the car.

She can’t yet quite articulate all the complex feelings she’s experiencing. She cries when she’s sad or hurt. She’ll disagree if I ask if she’s sad but she’s really happy. When she’s in a good mood, she’s super affectionate and gives hugs and kisses.

What I need to work on is reading more of her subconscious cues. How much more is she fidgeting? Stimming? Her face doesn’t always reflect her feelings, so I have to sharpen my own motherly intuition.

I have so much to learn still. Z got diagnosed with Autism Spectrum Disorder when she was three, and I’ve had four years of trying to figure stuff out. It’s been sobering and frustrating. I’ve felt inadequate often. But it’s also been fun and full of the sweetest, tenderest moments. I’ve felt blessed often.

She’s been so patient.

I’ll learn what’s needed.

Soon.

Seven Zinger Years

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Dear Zinger,

The pandemic took over the world last year.

COVID-19 shut your school down the Friday right after your kindergarten IEP, and you didn’t attend school in person again until a year later, just a few weeks ago.

During that isolation period you turned six years old. You were already growing so big. Sorry for skipping your letter last year. Circumstances were a little hectic.

You lost your first tooth just before shutdown, on March 8.

You’ve lost four teeth since then: 10 April, 6 November 2020. 5 February and 13 March 2021. Another one is getting ready to come out. So exciting!

Your hair has grown so long. We last cut your hair just before kindergarten, and over a year-and-a-half later it desperately needs a trim.

You’ve navigated a full school year of online classes: last term of kindergarten and 2 trimesters of first grade. Your teachers accommodated us and took great care to keep everyone safe. At your IEP last month they all said they were impressed with your progress with online school. They were so proud of you.

I am so proud of you.

Seven years. Never have I felt more blessed, so lucky.

Sometimes I wish time would slow down. That I could spend as much time with you as possible. It’s all passing too quickly. We want the world you’re growing up in to be safe, and we want you to be healthy. We’re doing everything we can to prepare you for this world as your eyes widen and your exploring tendencies expand. We desire so much for you to realize your potential. Hopefully the pandemic will get under better control so you can roam more freely.

I’m so grateful you’re in our lives, a part of our family. We love you so much.

Happy birthday, big girl.

Love, Mom

More Disability Access to Concerts?

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We have taken our daughter to a variety of concerts. Outdoor: Boyz II Men (lol [but YES]), Sting w/the Utah Symphony, the Utah Symphony accompanying a screening of E.T. Indoors, she attended the Utah Symphony screening of Coco. All situations where concert silence wasn’t enforced or other noises weren’t sneered at. Our daughter can sit still relatively well, and she can keep quiet, but occasional utterances or jabbers are very common for her. She’s experiencing the world in her own way, and this is one way it manifests.

I’ve hesitated taking her to concerts where the sounds coming from her would be considered disruptive and we’d be asked to leave. What would be AWESOME is if this aspect of concert culture moved more toward accessibility and understanding. If, while the house lights flicker and the voice on the loudspeaker tells us to silence our cell phones and take note of the our nearest exit, they could also say, “We have a beautifully diverse audience this evening, and if you notice someone enjoying the concert differently or not as quietly as you’re used to, IT’S OKAY!”

I just want the same opportunities for her to experience the arts. While dedicated events solely for the disabled are appreciated, it would be great if everyone just knew that we’re all there to appreciate beauty. I don’t know. This might be a big ask, but I don’t think this kind of inclusivity is impossible.

Meetings

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Yesterday Reilly and I attended a video call with Z’s teachers for her yearly IEP. We talked about her goals and progress. Her teachers seemed impressed with how well she’s doing with online school. It’s been almost a whole year. This week last year was when Utah decided to shut down schools for the rest of the school year, and my employer announced that we’d be working from home. This week last year we met with Z’s teachers on a Wednesday, and that following Friday the whole world changed. What a wild ride.

It’s probably easy to imagine a child–even one who has social delays–craving some kind of social contact beyond her parents. Even if we’re out running errands, Z will say, “Hi!” to a random child. To many random children. She will try to make friends. And we have to remind her about social distancing, even if everyone is wearing masks. Z’s teacher has said that her classmates (the ones attending in-person since the beginning of the school year) ask where she is all the time. Her name is on a desk, and it has been empty all year.

I had my weekly check-in meeting with my boss today. I told her about Z getting ready to attend school. I told her I had her practice unpacking her lunch. I told my boss about Z’s desk at school. She said that at the beginning there will probably be some separation anxiety, to which I quickly replied, “For me, probably not so much for her.” And my boss said, “Aww!”

Truth: it’s gonna be hard. After a 9 months of sitting by her and prompting her and waking her up in the mornings to do homework, I will have no easy time sending our baby off to school.

But like every other year she’s attended school in person, she’ll be amazing. And we’ll be proud parents.

Five Zinger Years

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Dear Z,

Last Monday you turned 5 years old. I’m still trying to wrap my head around this little fact that you truly are a big girl. I look back often at your pictures from your first year, and that Dadda and I have been trusted with your life still overwhelms me in the best possible way.

yr1a

Look at that smile! Those peeking teeth. You looking ever so thoughtful just after you were born. Standing! You were an expert walker before you turned a year old, and now you strut around like you know where you’re going all the time. Like you own the place. This was the most sleepless year of my life, but thankfully you took to sleep training pretty quickly, and we’re just now feeling we’ve caught up.

You continued learning and growing your second year of life. You were fearless. You had an uncanny awareness of everything in your space. Your energy never seemed to run out, and we were learning that you needed some solid time with your favorite playgrounds and toys and books and splash pads to get you tired enough for the rest you needed.

yr2a

yr2b

It’s true that most photos I included in these collages you look pretty dang happy, but it’s important to point out that you cried and were frustrated a lot, too. We shared these emotional states, because we’re trying so hard to learn each other’s language. For the most part we were able to figure out that most of your needs were pretty simple. As long as you were fed and dry and got sleep and enough play, you stayed pretty happy.

I love how much you love to play. I love how much you love to explore, even if it means that we’re constantly chasing after you and telling you what is and isn’t safe. Is this not a major part of childhood?

yr3

In your third year, we pursued our suspicions about some developmental delays you were showing. We took you for an autism screening at the University of Utah, and they gave you an official diagnosis. Which, honestly, was the best news, because that meant that we could take full advantage of resources to help you communicate and develop in other ways.

You started ABA therapy the July after you turned 3 years old, and it has made such a difference. And you have been attending an autism preschool, where they reinforce a lot of the skills you’re learning in therapy. AND Dadda and I try to keep up with your programs and encourage all the little ways you’re learning to do so many things. These skills will continue to open the world to you, and you will get to explore all the opportunities available that accentuate your strengths and give your life meaning. This is so very exciting and completely terrifying.

yr4

yr4a

What’s so crazy about these years of growth is so much happens with you physically and mentally and emotionally. As you learn and grow, you’re showing signs of you really knowing who you are. You have a very Z personality; you have definite preferences; a way of speaking; a way of showing affection and manipulating people in your cute way to get what you want. Guess what? We’ve been there, kid. We know those ways, and honestly, some of us have never grown out of those ways.

We have two dogs, but the chiweenie, Sia, and you are true buds. She is your first dog, and you two have a special trust that I can’t quite describe. That makes me smile.

yr5a

yr5b

Two weeks ago we went to Florida, and you got to go to Disney World. I dare say you were the most well-behaved big girl in all of the Magic Kingdom on the first day, and at Hollywood Studios the second day. You also got to go to the beach for a little bit, and you also loved every single moment of that experience. The way your senses process your world intrigue me. Just what does the water on your skin and the sand between your toes make you feel?

This past Friday I attended an autism conference at Utah Valley University. The keynote speaker stated as a general rule, the age of autistic people is about 2/3 the age of neurotypical people. In your life, this rings true that you’re about where most 3 1/2 year olds are in terms of speech and social skills. At your yearly wellness check up last Tuesday, you’re in the 60th percentile of kids your height and the 70th percentile of kids your weight. You’re gonna be taller than both your parents in a few years, but that’s where comparisons end. You’ve begun a path to your own life, and you’ll get to a point where you’ll make some pretty important choices that will shape your life the way you want. It won’t matter how other people your age are doing compared to you. Actually, age doesn’t matter at all. Live your life. You do you.

One of the biggest blessings we have from your supposed delays is that we get to cherish these extended development stages. We get to enjoy your childhood for longer: that curiosity, the amazement at the world; the hugs, the smiles, the wonder. Maybe these will continue on to your adult years, but we’re going to breathe it all in right now, in this very moment. We are present for this, this glorious moment of your turning and being 5 years old.

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We love you, big girl.

Love,

Mom

 

Parent-Teacher Conference and Kevin

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Last night we met with Z’s preschool teacher. The first thing she asked when she saw us was, “Who’s Kevin?”

Well, Kevin could be a couple of things:

kevinup

or

kevinmin

Z’s teacher said that Z often says, “Come on, Kevin” during class. Which sounds totally not out of the ordinary to us. We know who Kevin is (or could be), why doesn’t everyone?

We then talked about Z’s placement for kindergarten. The teacher said that she, the speech pathologist, and occupational therapist agree that Z is on the cusp of going either to a special class or an autism kindergarten class.

We forgot to ask what the difference is.

But her teacher said that Z catches onto academic stuff like reading and colors and shapes and math really quickly. In other areas Z is working on a few skills, and she still has social delays. She’s fine working or playing alongside a teacher or aide, but when another child/peer joins the group, Z leaves.

Y’all, sometimes I’m like that. But I don’t want to be the reason Z can’t interact with people. So we asked what we could do to improve her social skills. And we decided to try scheduling regular playdates with kids her age, just like we tried last year.

Sometimes I ask myself, “What’s kindergarten?” I don’t see a totally regular class full of typical kids–what I and Reilly grew up with. That’s not the normal around here. What I do see is the possibility of the bird from Up or one of the Minions. Both are equally great: Fun, goofy, smart (maybe not so much the Minion); generally happy and unassumingly generous with cheer. That’s our normal. I’m grateful to have accepted and live it every day.

That’s our girl.