I posted this on social media 10/28/2018. It’s long enough to document here.
We went to a Halloween concert yesterday and as we got out of the car, a lady shouted, “Chucky!” As we entered the building, we got a few “Nice costumes, guys!” from people we passed. And Reilly said I made a toddler dressed as Black Panther cry.
Also, posting our costumes on a Sunday to get us wondering why anyone should live with near-paralyzing fear of getting murdered on their holy days. Or any day for that matter. That is where my heart is right now.
These characters from horror movies evoke the thrill of a good scare that we can turn off, recover from, and then carry on with our lives. Other real-life monsters, like those just from this past week, aren’t as easy to escape. But we can’t let them conquer us with fear. We can’t let their hate overpower us or ambush us through the mail, at the grocery store, or where we find spiritual strength or a sense of community.
We love these costumes, and we are so excited about showing them off. But costumes are all they are. And you know our hearts aren’t filled with revenge like Chucky’s, or incapable of distinguishing between affection and violence as Frankenstein’s monster’s, or deeply primally evil like Black Phillip’s.
We are here for you. On your holy days, and every day.
This post was written 10 April 2018, but I’m backdating it to Z’s birthday, 8 April.
Almost three months ago, you and I got sick with fevers, headaches, and congestion. You and I went to the doctor to see if we had the flu. The doctor sent us somewhere else to get a nasal swab to determine the flu. I’m not sure why he or any of the nurses in the office couldn’t swab us. I still might be a little bitter about it.
The doctor’s office wasn’t entirely clear on where we were supposed to get the swabs: do we get them at the hospital, or at one of the affiliated clinics near the hospital? I should have asked for clarification; part of our long day was that I should have gotten better directions.
We stopped by the hospital first. When we were checking in, the intake lady heard you coughing, handed me a mask, and instructed me to put it on your face. This wasn’t going to happen. I knew you weren’t going to keep the mask on. You sat on the floor, keeping mostly quiet, being very good for a sick 3-year-old.
The intake lady heard you cough again, and she reminded me to put the mask on your face. I didn’t do it, because that was a battle I chose not to fight: I’d rather you quiet than struggle to keep a mask on your face. She double checked our insurance and told us a flu swab wasn’t covered. I was irritated. My head was throbbing. I remember half-heartedly asking about the insurance, and the intake lady answered something. I took your hand and quietly walked away.
We eventually found the place where someone would be able to give us the flu test. We ended up both negative. That was a relief, but we’d spent a lot of the day driving around, feeling like absolute junk. I’m so sorry for dragging you all over Orem and Provo that day.
We both tested negative that grey January day, but I can’t stop thinking about my lingering negative attitude about that experience, especially at the hospital. What I wanted was not to have to explain why you wouldn’t wear the mask. What I resented was the assumption that you would wear a mask at all. Maybe the intake lady trusted that moms know the best approach for putting a mask on their children, since no “normal” sick child would cooperate wearing a mask. I didn’t know how to say I was clueless. What I wanted was an acknowledgement–at least from this healthcare institution, in a state that has a higher population of autistic children–or some sort of effort to accommodate, a simple “if your child has sensory issues, then [here’s an alternative].” That can’t be too much to expect at a hospital that probably sees hundreds of children every day.
But guess what? I figured it out. When we were at another waiting room, the receptionist asked me to take masks for both me and you. You started coughing, and I held a mask up to your mouth. Every time you coughed, I covered your mouth with the mask, and you were actually ok with it. I was so grateful for this!
Dadda and I have been your parents for four years now, and we’re still figuring it out. I’m still learning patience, but I’ve appreciated the process of learning to see the world through your eyes. I love how you’re never in a rush. How you give in to adult-perceived distractions, when you’re just enjoying your surroundings. How you run your hands over all surfaces. How sometimes you exercise your curiosity by sticking your tongue on things (which often grosses me out). How you run and laugh and sing–and spin, of course. How you verbalize your feelings even though you don’t have as many words as you’d like.
You’re working on getting more words, though. More skills, more coordination. More understanding. A greater attention span and focus. You’ve developed a liking for coloring and puzzles. You can sit with these activities for at least an hour sometimes. Your teachers have been so impressed with you over the past year. When you began preschool, you weren’t able to sit still, and you had no words. Now look what you can do!
We’ve taught you to repeat simple phrases like, “I’m cool” and “I’m smart”; Lola has taught you, “I’m beautiful,” and on your birthday you’ve been able to repeat, “I’m four.” Four. We can’t believe it.
You are adorable, and everyone loves you. Friends and family, definitely. It’s a little weird when strangers smile at you while we’re out or traveling, but most of the time you’re oblivious and could give zero cares. I need to find a way to live more like you.
It can be so hard being a kid sometimes. So many rules, so many boundaries. It’s been hard for me to reconcile your supposed limitations with your potential. Just thinking of your immense potential makes my heart full. But to you, you don’t have any limitations, other than your parents’ occasional inability to understand what you want or need. Such understanding often requires words. Which you are acquiring more of every single day. Your language–both jabbering and intelligible words–has expanded our minds and blessed our hearts in so many ways, made us better parents. We’re learning as we go. Just like you, we’re figuring it out. We try our hardest to open up the world to you. No limits, baby girl. No more assumptions.
We have you as our daughter, and you have brought us more than we could ever imagine. More love. More happiness. More life.
In the middle of last month you had picture day at preschool. I preordered the package online, not knowing how they’d turn out. All I wanted was to preserve the memory of your very first picture day.
On your very first picture day, your teacher sent home a note. You usually get a daily note of your general behavior – this comes as a golden rod laminated form that your teacher fills out: What you ate, what you played with, any tantrums, or moments in the calm-down corner. But the note your teacher sent home on your first picture day was a pink note. The pink notes are achievement notes, and this is the one from your first picture day:
This made me excited to see your pictures! I asked Dadda when he thought your pictures would be ready, and he said they usually take two weeks.
The next two weeks the suspense was unbearable. I kept busy and tried thinking about other things to pass the time. But it occurred to me that it was possible your teacher sent home notes like that for all your classmates, and doubt crept into my mind. What if your smile wasn’t really a smile, but a weird smirk? What if it was one of those forced smiles with your eyes squinty or tightly shut? What if you got all muddy or grimy from snack time? I’ve seen bad school pictures. Many of my school pictures were horrible. I definitely lowered my expectations of how your first school pictures turned out.
But the day came when I picked you up from daycare and one of the workers said your school pictures were on the top shelf of your cubby hole, and that they were sooo cute. And we saw another daycare worker who commented likewise about your school pictures. And so you and I went to your cubby hole and I glanced at the photo through the window of the big envelope, and I just about fell to my knees and cried from the cuteness. this is what I saw:
Everyone loves your school pictures! I love them. Dadda loves them. I’ve shown them to you and asked who the girl in the pictures is, and you’ve answered with your name in that sweet little voice of yours. It’s nice to know that your teacher just wasn’t being nice when she sent home that pink note. She was being sincere, and I’m so glad we have this memory!
Yesterday Dadda and I had parent-teacher conference with your teacher. We talked for a good while about the progress you’re making, and she remarked how much energy you have! She’s impressed with you, and I hope you continue to let your teacher challenge you, and that you’ll eventually learn to harness that energy. We know you’re 3, we know you’re a sensory-seeker, so we definitely understand the spinning and running and climbing everywhere.
While we were at your school, we also got to talk with your speech pathologist, who had the chance of talking with your ABA therapist. It sounds like they will be able to coordinate their efforts and methods to bring about the best results for your speech development. How fortunate that we have these resources. We feel so blessed.
And today: Your teacher sent home another pink note!
We are super proud of you. We love that you’re learning and expressing yourself. We love that communication is starting to click for you. We’re doing our best to help you, and your sweet spirit and desire to learn keep us from feeling too overwhelmed. We are here for you, and we will support you always.
Yesterday was Z’s first day of preschool. It should have been Tuesday, but there was a mixup with the buses. They reversed our home address and the pickup address. I was annoyed, but things got straightened out, and when I picked her up from daycare yesterday, the workers said she’d had a good day, that she was a happy little girl. And had a nice nap. And that she’d gone potty just before I got there. The bus pickup and dropoff had no glitches, and the bus aide told the daycare that Z had a good day at preschool. I was so pleased to hear all of this good news! To top it off, Z was holding a clear plastic cup with some animal crackers. I buckled her in the car.
Then we got home and had about 20 minutes before Z’s ABA session. We sat at the patio table and ate some chips, then Dadda got home. And then Z’s tutor and the tutor’s supervisor came over. The supervisor talked with us about the additional things she’d like to implement in Z’s program and asked us if we had any questions. Reilly mentioned that Z sometimes reverses the sounds of letters in a word, like saying the “K” sound first in the word “drink.”
Then the supervisor brought up apraxia. The way Z tries to say some words may indicate apraxia. None of this is conclusive right now. But it’s another thing I have to research and worry about. I wasn’t told not to worry. I was going to worry anyway, but it makes a difference to be told not to worry.
This afternoon Z’s preschool teacher sent us an email:
Z’s day two has gone great, she really likes snack time, but wanted to walk around with the “juice” (gatorade) that she chose so we put in in her sippy cup and then she was able to drink from it when she was thirsty. She is listening and following directions so much better than when she first started in April which is awesome, especially considering the long summer break.
Just wanted to let you know.
As I was reading, tears streamed down my cheeks, and I’ve yet to really identify the emotions I experienced. Maybe I felt a combination of happiness and relief. But I felt most strongly pride. I can never articulate what all my concerns are for her, especially when it comes to navigating the world and discerning trust in and from others. Her safety, her knowing who she is, her ability to contribute to society. The preschool teacher’s email gave me great hope.
The other day, I tweeted this:
Our daughter has learned “no.” I’m sort of annoyed, but I feel more assured that she can say it confidently. She’ll need this in the world.
In the past months since the last blog post, a couple of experiences have lingered in my memory. These remind me just how different human beings are, and in terms of behavior among “normal” individuals, there is also a broad spectrum to navigate. And how we respond to these people reveals more about ourselves than they.
The first experience comes secondhand. Reilly came home one day the middle of last month and recounted he and Z had taken Sia to the vet for her booster shots. They were in the waiting room, and Z was spinning in place and jabbering happily. An older woman was watching her and asking her questions, and Z wasn’t answering, because as a 3-year-old, spinning and jabbering are far more important. But Z did stop spinning, and the lady asked her a question. Z answered with more jabbering, which made the lady turn to Reilly and ask if she knows real words. She wasn’t mean about it, and Reilly explained that Z has autism and delayed speech. The lady then replied that her daughter is a special education teacher in an elementary school and asked Reilly if he knew her. Z attends pre-school in a different district, so it’s not likely that we would have run into this lady’s daughter. Nevertheless, this was a short, but cordial conversation, and I was glad to hear how accepting the lady seemed of Z’s circumstances.
The second situation happened about a month ago. I was observing a group being talked to by an important person in a certain industry. He was telling the group how essential they were to the overall vision, that he was pleased with how their colleagues in other offices were looking to adopt this group’s production model. He told the group that they were special, “not special ed, but special.” Some of the people in this group laughed. I did not. I was disappointed that a person that people respected would make a joke like this. I don’t know if I was particularly sensitive because of my new closeness to the special needs world, but I also wondered why people are still making fun of others who happen to be different.
Yeah, broad spectrum. I’m generally accepting of most decent and well-intentioned people. And sometimes I say things that may be insensitive to others’ circumstances. And yes, I do want to protect our daughter, but I know she’ll have to face the world to live her own life. And if I struggle reading people at times, I just wonder where on the autism spectrum is Z’s ability to discern emotions in other people. How much will we be able to teach her, to prepare her to handle interactions with complete cussheads?
On a sort of similar note, Z has been through two weeks so far of ABA sessions with a tutor. The interventionist (the tutor’s supervisor) says Z’s learning really fast and likes to push her with different challenges. Z now has a little toolbox of word approximations, so that when we ask her, “What do you want?” she can say, “dee” (candy), “boo-boo” (bubbles), “chih” (chips), “chee” (cheese), “kha” (drink), “koo-eeh” (cookie), “doh” (donut), “side” (outside), a maybe a few other little words. You can tell that food is a major motivator for her. She’s become a better imitator, she waves and says, “bye-bye-bye-bye-bye,” and she can say “mama” and “da-yee” when prompted.
This is so exciting and reassuring. Our little communicator. We love her.