A Quasi Rant and an Update on Z

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.

A Journey and a Process

IMG_20170521_142954

There were concerns.

There was knowing without any professional confirmation. We knew, though.

There were doctor’s appointments.

There were assessments.

There was Early Intervention through Kids on the Move.

There was a scheduling for a screening. The earliest possible date was in July.

There were more assessments.

There was an IEP with a panel of special education preschool teachers.

There was special preschool.

There is progress.

There was a cancellation from someone else, which meant an opening for an earlier screening at the University of Utah.

There was a psychiatrist. And play. And observation.

There is a diagnosis: Autism Spectrum Disorder.

Now we are here.

And now there’s more.

Unknown territory for us, but we’re damn good parents that will give the absolute best to our daughter that we can.

Thank you all for your continued love and support and patience for our little girl.

There you are.

 

Preschool – First Day

20170413_120229

Look at that photo. She looks so depressingly grown up. She does look pretty confident, though, which I love. Like she’s saying, don’t mess with me, mofos. I’ve been so nervous about today, Z’s first day of preschool. She had no idea what was going on. Reilly and I told her that she was going to a new school, and that she would ride a bus, and that she would have fun teachers. I made her try on her backpack several times yesterday so that it would be familiar to her and she would think it’s hers. Both Reilly and I like this backpack, but I don’t think Z cares very much right now.

20170412_185858

The day dragged on, and Z getting up at 6:30 didn’t help. We had breakfast and played and watched a few music videos. We hung out and cuddled and sang songs together. I reminded our little girl that she was going to school today, but I doubt she understood. She probably understands now that she’s there.

20170413_121903

It’s so weird thinking of our 3-year-old riding a bus. I mean, that’s what big kids do. Yesterday I emailed her teacher asking if an adult would sit with her on the bus to school. I totally stressed out about it. I know that if someone’s not sitting beside her, she would want to get up and wander around. But the teacher reassured me an aide would help Z with the whole bus experience. The teacher also said that everyone would make Z’s transition to the school as smooth as possible.

That helped me feel a little better, but just a little.

Grandma sent a text saying to give her a big hug and tell her she’s going to do fantastic. And that’s what I did.

Though the day seemed to drag, the time for the bus to arrive sneaked up on us. I helped Z put on her shoes, and we walked out to the curb. I sat on the ground and pulled her to me so she could sit on my lap. I held her tight.

20170413_122633

The bus pulled up to the curb. The door opened, and the aide stepped off. She said hello to Z and handed me a form to complete and explained some stuff. She helped Z onto the bus and guided her to a seat on the same side as our house. I took a picture of the bus, and the aide helped Z wave at me as the bus pulled away. I smiled and waved back.

20170413_122847

I went back into the house and cried. I’m still sort of crying.

She’ll be home soon, though. I hope she did okay.

Three Zinger Years

0301

Dear Zinger,

Happy third birthday, my love! I’ve spent the past few weeks thinking of what to write you for your birthday. I thought I could plan something elaborate and fun and recap the last year of your life with a flourish, because your third birthday is a really big deal. The planning didn’t go so well, but I’ll still reminisce this past year with you. You have grown so much, and the world anticipates all the new things you have yet to discover.

0302

Dadda and I worry about you all the time. We’ll keep worrying about you as the world continues to open up to you. That’s what parents do. We wonder how you’ll play with other kids, communicate your wants and needs. You do express yourself well; all it takes is one look at your irresistible face, and we can tell what you’re feeling.

0304

You want to be independent so badly. You’ll climb the countertops to get what you want. If you need help with it, you’ll bring it to us, at which time we realize you’ve climbed the countertop, which is a big no-no. But you’re stubborn and persistent. These characteristics will ultimately prove valuable to you in this world, if you use them the right way.

0309

0305

Lola and Poppy are in town to celebrate your birthday, and you’re so eager to show them how much you know. Just last night you led Lola to the bathroom, where you brought the iPad, then brought the stool to the toilet, put your potty seat on the toilet and had Lola help you with your pants. You then sat on the toilet and went potty. Lola was so very impressed.

0306

0307

Only recently have you started opening the refrigerator to retrieve one of your favorite foods, yogurt. You’re getting stronger and more resourceful, and if there’s a way to do something without our help, you’ll figure it out.

0308

0312

A few months ago, we bought a house with a back yard and lots of space to play. You seem to enjoy it. You’ve found your little niches where you love to play, but it seems that you can fall asleep anywhere, which is so convenient.

0313

For some reason, you’ve gotten a lot more energetic as you’ve gotten closer to 3. You run, skip, jump, and dance so much more. Jumping on the couch, jumping on the bed. Running from one room to another. Going down your slide while watching one of your favorite movies. Climbing the fence, throwing rocks. Spinning and spinning wherever you are. You’ve also gotten a lot more curious in your old age, and it’s so much harder to keep up with you.

0311

0310

You’re also putting a lot more stuff in your mouth that isn’t supposed to go there. Just the other day I barely saw you eat a giant booger before I could do anything about it. It really grossed me out, and we need to do better at catching you eating prohibited things. We actually need to be better at teaching you not to eat those things. Ah, parenting. Thanks so much for your patience, little one.

 

0315

0316

We love how you’re participating more at school (daycare). We love how excited you get when you want to show us something. We love how often you sing and how you recognize the songs we sing to you. We love that you like watching music videos, how Beyonce’s “Single Ladies” and ‘NSync’s “Bye, Bye, Bye” are among your top favorites lately.

0317

So much is happening in the world. So much legitimately weird stuff. You’re oblivious to most of it, but we do want to teach you how to navigate all the weirdness in a constructive way. We want to teach you how to give beauty and goodness to the world. I know you’re only three, but you’re actually already three. You’re growing too fast. I would like to stop time just for a little bit, just for today, to really sit back and enjoy remembering the past three years with you.

0314

IMG_9356

We’re having a party for you today: balloons, yummy food, family and friends. Toys and clothes and everyone cherishing your life. We hope you like it. Thank you for bringing us so much joy, for teaching us, for making us love more deeply and way beyond what we originally thought our abilities were.

This next year will be very exciting, and we cannot wait to live it with you.

Happy birthday.

Love, mom

30 Months

Dear Z,

Can I have a few minutes?

Something sad happened today. The youngest child of two of my high school friends passed away. They posted a photo of their daughter on Facebook. The little one was in a wheelchair, smiling. Sending her off with a farewell full of both sorrow and joy.

I never met this impressive little girl, but I know my friends. Over the years they shared photos and let us get to know of their daughter’s fighting spirit and cheerful personality. I stared at the one photo today and wept. I commented with condolences, trying to be strong for these friends who have to be so heartbroken right now.

Before today’s photo, my friends posted photos of their other children posing with their sister. There was so much love, and I was hoping and praying so hard for her to pull through. It was not meant to be. I am grateful to have seen these precious last moments of her life, so full of joy and compassion and love. Her family surrounding her, cherishing their time left with her in mortality.

At this moment I’m thinking of bedtime. You know the routine: go potty, change into an overnight diaper, brush teeth, say prayers. Dadda gives you a big kiss goodnight, and I lie with you for a few minutes as you wind down for sleep.

Usually you take my hand and lead me to your toddler bed. I lie down, and you lie beside me. The soft purple and pink beams of your night light roll in a small circle on the ceiling, and Arvo Pärt’s “Spiegel im Spiegel” plays softly in the background.

We talk for a little bit. I ask about your day; I describe mine. Sometimes one of your legs rests on top of me; sometimes we hold hands.

This is my favorite part of the day.

When I try to get up, you grab my hand or hold my head down to make sure I stay with you.

A few more minutes.

A lot of people consider turning 30 years old a major milestone in their lives. This week you turned 30 months.

You’re getting taller.

More observant.

More opinionated.

You tolerate a crowd of children, but most of the time you’d rather play alone. You’ve shown this numerous times at daycare and in the church nursery.

We won’t force you to make friends. You might be a lot like me in this regard. I either reach out, or I don’t. I either reciprocate friendly gestures, or I don’t.

I hope that you become better than I am. For that to happen, I need to be better than I am.

I told you about these friends tonight, as we lay in your little bed, trying to sleep.  I was blinking back tears in the darkness. I told you my friends were sad, that you would have loved their daughter. I squeezed you a little tighter, a little longer, hoping the embrace somehow would reach my friends.

Thirty months.

As we snuggle every night, I think about this, how the time passes. I dread the moment when you’ll no longer want me lying beside you, talking about our day. You’ll hurry me out of your room instead of getting me to stay. I will yearn to find warmth and comfort in the pride I have for our wonderful daughter. Wonderful you.

This abstractness worries me. I equate it with a void of a little body beside me in a little bed. The absence of gazing through the dark at each other, eyes connecting the way only a parent and child’s can connect.

Until that moment, I will lie next to you. I will enjoy the space you occupy, the warmth you emanate, for as long as you let me.

Even if it’s just for a few more minutes.

Love, Mom

Two Zinger Years

Good morning of 2nd birthday!
Good morning of 2nd birthday!

Winter is finally starting to retreat, and the warm weather calls to you every day. When you lead us to the door to go outside, we are excited to help you put your clothes on and let you roam the great outdoors. Two years ago, you were a little too comfy in Mama’s tummy, and we coaxed you so to join us in this wonderful and crazy world.

Two years later you’re taking it all in.

Last week we were watching The Good Dinosaur, and one particularly sad part made me cry. You came up to me leaned your forehead toward me. You do this when we want you to give us kisses. We say, “Can I have kisses?” and make a kissy face. But I didn’t do this last week. I was crying quietly and wiping away my tears because the dinosaur was saying goodbye to the human. When you gave me kisses with your forehead, it was hard not to cry even harder.

This slideshow requires JavaScript.

In the past year while watching movies, you often laughed at sad parts, but now you also get sad, and you scream when the little girl Merida screams. You are developing a sensibility about other people. You are developing empathy.

At the same time, you don’t like being around a lot of people. You’re still unsure of other little kids. You recognize them; you acknowledge their existence, but you’d rather not interact with them. You appreciate the safe place of family and familiar friends. I’m grateful you cherish this, and I hope you continue to do so for as long as you can, because there will be moments when the world seems a little scary, and we won’t be able to hold your hand or pick you up and hold you. We want to teach you how to handle those moments well. We’ll still be there, just not in the same ways we are now. This makes me profoundly sad.

This slideshow requires JavaScript.

But I am so exquisitely happy that it’s your birthday. It’s hard to believe two years have already passed, because I was just reminiscing about my constant need to pee, which seems was only yesterday. (Which it wasn’t.) You’re saying a few words here and there. You’re getting stronger and faster. More curious. More mischievous.

This slideshow requires JavaScript.

You love light switches and doorknobs. And bubbles. Climbing to higher heights. Sprinting between rooms. Squealing during sacrament meeting. Reading your books. Singing your favorite songs; chilling out on the floor for a few moments before another burst of pure energy. Basking in the sunshine. Giving Mama and Dadda hugs and kisses. And mastering potty-training all the while.

We couldn’t be prouder. Or happier.

This crazy world sure needs more people like you.

IMG_8781

You are a joy and a blessing, dear daughter. Wonderful Z.

Happy birthday.

Love, Mom

One Zinger Year

Evil?

Dear Zinger,

Look at you.

On Mondays I volunteer at a children’s hospital library up in Salt Lake City. Before going down the hallway that leads to the library, I pass through the cafeteria. Sometimes I see parents with their children. They have food in front of them, seemingly going through the motions of eating just to pass the time. As I make my way toward the information desk, I often see parents dreading results in the lab waiting room. Sometimes in the next room there are children and their parents in the sibling playroom. There’s a life-sized cardboard cutout of Elsa, looking glittery and friendly. The hospital is bright with tall, green plants, left-spectrum colors in the furniture and carpet and fun, educational murals on the walls. This effort to cheer patients and their loved ones is commendable, because everything possible needs to be done to raise spirits in a place that can generate so much fear and heartache. The parents especially look tired, probably from waiting or lack of sleep or anxiety. They look worried. The parents try to get their children to eat or play to make waiting bearable, to lessen time’s weight, to relieve the pain of slow ticks of a clock. I come home and think of the parents looking at their children. Exhaustion, defeat, hope. Love.

I look at you.

I don't know what you're talking about

RUNNNNNN!

bond

A couple of months ago, a friend of mine posted a video of her daughter walking with crutches. This amazing girl was born with limb differences, and I talked to you about the video after showing it to you. As Lamp (her online name) took her first few steps, she squealed and laughed, and I saw your face light up and smile. Tears filled my eyes. I said that’s your friend Lamp. I said do you remember her. I said she lives in Ohio now, but we went to the park with her and her family when you were two months old. I said her arms and legs are different sizes, so her dad and doctors built things to help her move around. I said let’s watch the video again. So we watched it again, and you smiled again. I cried again. We watched the little 11-second video at least three more times, and you smiled each time. Each. Time. I said you can see she’s having fun learning how to walk. I said you have a good heart to be so happy for your friend.

I said please don’t lose that.

Sweep

You like to play a game where you close our bedroom door and I’m kneeling in the hallway. I put my knee just across the threshold so that the door doesn’t close all the way. I see your fingers wrap around the edge of the door just before you swing it open. When it swings about halfway I see your face, and I say boo. Then our eyes connect and we laugh. You love the game with Dadda where he says I’m gonna get you! and you smile and run away from him, but not so fast that he can’t catch you. And sometimes you actually run toward him. Then he picks you up and laughs while you smile that smile saved especially for Dadda. It warms my heart.

You want us to get you.

Peas & Carrots

curly

bear

toes

You are one year old. And you can probably tell that I still don’t know what I’m doing. But I’m doing the best I can, like I said I would. I read books and articles and watch other parents with their children and ask for advice. For the most part people are very helpful. They share experiences and make suggestions and gently reassure me of my role as your mother. As long as you’re clean, eating, and sleeping, you’re doing okay. You even play hard every day, so Dadda and I are doing something right. And I’m doing okay, even when I shower only every 2-4 days and skip some meals (but eat snacks) and dream about eight hours of sleep during a five-hour slumber. I know I’m supposed to take care of myself, but I can’t say that I’m neglecting myself because I have so much fun spending time with you and Dadda. We eat dinner together at the kitchen table; we share hugs and kisses and snuggles and laughs. We dance and spin and read. We pray. We say amen. While Dadda holds you I stroke your face three times and kiss your cheek. I say sleep good, little girl. I say I’ll see you in the morning. I say I love you. And Dadda lays you in your crib.

hair

wavy

cloak

cozy

You are one year old. You are so smiley and gentle and curious. You point at people you know, and you look at people who ought to know you until they smile at you. I have never known so much anxiety, uncertainty, wonder, and joy than I have in the past year. I never knew I had the ability to love so far beyond myself. I will gladly keep giving up showers and meals and sleep for more years like the first one you gave us. Those will years will be different, because you’ll be learning and growing and progressing exponentially; you’ll be forming opinions and making discoveries and forging relationships, but those differences are what makes those upcoming years the same. Does that make sense? We’ll be teaching each other. We’ll continue to strive to understand each other. We’ll keep playing and reading. Hopefully there will still be dancing and spinning.

We will still be praying.

Happy birthday, little one. We love you. Watch this slide show to see just how much you’ve blessed our lives this past year. (Some songs are cliché and cheesy, but I couldn’t help it.)

Love, Mom