Do You Have Autism? Yes or No?

Lucy knows Landon is different. She knows he doesn’t speak yet. So she sweetly asks him hundreds of questions each day in the same format:

“Landon do you want orange juice? Yes or no?”
“Landon do you want your grey shoes? Yes or no?”
“Landon are you taking Monkey to school today? Yes or no?”
“Landon will you play with me? Yes or no?”
…

All day.

At the beginning of June, Landon had a pretty intense evaluation by the school district to see which services he would qualify for when he graduated out of the early intervention program and came under their care. We were shocked by the results, and most shocked by the analysis that he was in the “clinically significant” range for Autism Spectrum Disorder. Autism wasn’t even on my radar. I’m ashamed to admit that when I thought of autism, I thought of the most severe and extreme cases of kids totally absent-looking, banging their heads on the walls. That’s not my kid. He loves people. Sometimes he loves them so much it hurts…

So I started this list. And I thought, ‘I’m going to make a list of Landon’s quirky behaviors and it will prove that all the things he does are just normal three-year-old things.’ And then I filled up the front and back of a piece of paper. Seriously? I started questioning every thing I was feeling. What was causing me to press so hard against this?

Armed with the school district’s assessment and my list, I took Landon to his three-year well check. The poor, sweet nurse practitioner who asked, “So how is everything going with Landon?”

“Well, sometimes he does things that are sort of weird. And maybe some of the weird things that he does are getting a little more weird.”

“What do you mean?”

“Well, last week I was outside grilling. I knew the grill was hot so I made sure to talk to Landon about it and why he shouldn’t touch it. I made him say hot [“ho, ho”]. I went in to get the food I was grilling and left him outside with my husband. When I came back, both hands full of food, he gingerly walked over to the grill and pressed his hands against it. He never screamed or cried, he only tried to rub the heat off when his skin began to blister.”

“That’s pretty alarming. Anything else?”

“Well, he likes to scream at his baby brother to watch him cry. It does not feel like menacing behavior, just exploratory. He builds elaborate train tracks in his room and gets mad if anyone tries to put actual trains on them. Actually, I made a whole list of unusual behaviors. Do you want to see it?”

“I think I’ve heard enough to know we need to consult someone with a little more expertise.”

And with that I left the appointment with a list of neurologists to consult 

If you’ve never thought of autism in the United States as an epidemic, you’ve never tried to get an appointment with a doctor specializing in diagnosing it. Wow. Three months. Six months. Every time we made a call, the waiting lists grew longer. We heard the importance of early intervention and we heard the hold music. Both lingering ominously.

When we finally got Landon tested, he did quite well. Autism tests were made for him: they’re play-based with only adults in the room. No other kids to fend off. There are snacks! And bubbles! He did well yet the doctor still said he had autism! How dare her! And then she began to talk “intensive therapy sessions”.

I left feeling like the only thing the doctor had proved was that he doesn’t have autism. He is a little puzzling. His receptive language is excellent. He’s funny. He LOVES hanging out with adults. Food is the way to his heart. He did great. Let’s get a second opinion.

We found another doctor. Very fancy titles. Professor at a very fancy university. If you leave a message with his office, he will call you back on Monday. He only makes calls on Monday. If you miss his call, you have to hope to catch him the next Monday. We missed his call. When we finally talked, he had the audacity to say it sounded like a severe spectrum disorder. It’s not severe. You haven’t met him. Everyone loves him. Severe?

During this time Landon started school. By God’s grace and divine intervention, his sweet teacher is amazing. VERY qualified. VERY educated. So I gave her a couple weeks to get to know Landon and then called.

“The neurologist said Landon has autism. Have you felt that to be accurate?”

“Well, I’m not one for labeling kids but I’m thankful to know you’ve been pursuing that for him because I’ve seen quite a few red flags during the first two weeks of school.”

“Oh?”

“Yes. I actually have a son and grandson with autism so I feel very comfortable to judge it’s characteristics.”

” Oh really?”

“I would agree with your doctor’s diagnosis.”

“…Oh.”

Five professional opinions later [but seriously…] I’m the only one questioning whether or not my son has autism.

And then came that moment. Wondering why I was still shocked to hear it. What does it really change? It only means we’ll commit more time to his therapy.

It’s not the end of the world. And it actually explains a lot. And calms some of my anxiety to know we could be on a path towards healing. Autism can be overcome. We love him so much. It’s an honor to fight this with him.

I think I’m the one who needs to do the most changing right now. I need to stop asking over and over if they’re sure that they’re sure that they’re sure he has autism. I need to change the question. How do I help my son be the best version of himself?

K4: First Week

I wanted to start out the week like I’d imagine most classroom teachers do: setting the schedule and expectations.

The general schedule for our week will be to fit in an hour of dedicated school time the four mornings a week Landon has school.

The first couple days were spent introducing Lucy to the workbooks we’re going to start out using. She shows such an aversion to all things written [as opposed to drawn] that I bought a couple of books below her skill level to boost her confidence.

I also bought one of those packs of blank books at Target and we spent a couple days creating an “About Me” book for her. Here’s her family page where she intentionally left off her brothers. She told me later she’s okay having two little brothers, even if it means she has to keep her stuff picked up.

The star of the week was this science kit I snagged on Amazon for $8. We did the first experiment where you mix citric acid and baking soda.

She loved the measuring and quick reaction. We tried it with hot and cold water as well.

We played a few games and lined the alphabet magnets up in order to clear out the summer fog.

If you want to get my daughter to sit still for extended periods of time, this fashion drawing pad I got her seems to be magic.

doll fashion girl had *quite* a few updates this week.

For anyone with a creative kid who makes you more treasures than you could ever hope to keep, I highly recommend going to blog route. We tried out the artkive app and liked it okay but I had to email the creations when I uploaded them. This way Lucy can go back and check out her work and I don’t feel bad about sending out 15 emails on a particularly creative day.

Lucy Lately

Me: “Lucy, you need to get your attitude in check.”
Lu: “Okay, Mama, my attitude is on crack.”

[filling up ice trays]
Lu: “Why are you making icebergs?”

“You know that yesterday a long time ago?”

“Oh Christmas Tree, oh Christmas Tree. Oh how you make me royalty.”

[She has a hard time with cliche-type phrases.]
Let the show be on. 
Let’s put this party on the road. 
That ice cream really hit the day. 
Did you grow up on a farm!? [Were you raised in a barn?]
Okay, people, I want all your eyeballs on me. 

Oh no my arms are stuck. You have to stay in my bed all night. Okay you can go. If you turn on my nighttime song and don’t make too much noise, I’ll let it slip. 

Landon presses the button and the Siri double beep sounds. 
“He’s talking to that robot that you guys talk to sometimes.”
…
Siri: “I’m really sorry about this, but I can’t take any requests right now. Please try again in a little while.”

Knock, knock. 
Who’s there?
Candy Crush!
Candy Crush who?
Candy Crush Baker!

Lu: “I am a magic wish-granting fairy; what do you wish?”
Me: “I wish for a house that always stays clean.”
Lu: “Can you wish a fun wish? Like, ‘I wish Lucy never had to play alone?’ You know, like a kid wish I can give with the dip of my wand.”

Lu: “Mom. Do you want to play destiny unicorn princess? It’s only for superhero girls but you’re on the guest list.”

Lu: “This is the sword of destiny!! [Holds up Dora the Explorer hockey stick.] … Ooooh. A rainbow.”

Lu: “You’re a mom, so that means you can do anything. Right?”

1st Day of School 2014

Lucy’s first day included a trip to the dentist. Whoops.

All business.

LJB blooper reel.

So sweet.

Talking To My Four-Year-Old About Ferguson

I live 5.5 miles from the QT that burned down this week. “My” Target became the staging area for the armored tactical units used throughout the week. When I turn on the news and see places so near my home in what looks like a war zone, my heart sinks.

It’s hard to describe what St. Louis is all about to someone who doesn’t live here. There aren’t words to describe the beautiful diversity that spreads across this city. But, like most cities across our country, it’s broken. There’s heartache and mistrust. There are undertones that have been highlighted this week, magnified even. And it’s close. It’s so close. Close to my home. Close to my heart.

I’ve spent this week trying to figure out how to talk to Lucy about it. I think it’s important that she understand it as much as a four-year-old can. I want to open a dialogue so that if she has a question, she can ask me. It’s our job to raise our children as citizens who understand words like equality, justice, and racism. I don’t want to wait for her to hear them from someone else.

So we talked.

Me: “Hey Lucy. Do you think there’s anything different about our family and Ms. Tracie (Landon’s OT) or Amani (her favorite babysitter)?”
Lucy: “No.”
Me: “Hm. Well have you ever noticed that their skin looks different from ours?”
Lucy: “I guess it is a little different.”
Me: “But that doesn’t change who they are as people you love, does it?”
Lucy: “No!”
Me: “Do you think they’re beautiful?”
Lucy: “Oh yes. I loooooooove Amani’s hair.”
Me: “Their skin is different because people whose grandparents come from different parts of the world have different colored skin, hair, and eyes. We wouldn’t want everyone to look exactly the same, would we?”
Lucy: “No, Mom. I like it.”
Me: “People in our city are upset right now because there are people who treat others different because of the color of their skin, and that’s not something we like. There’s this thing called equality that we believe in, because everyone should be treated fairly. Jesus wants us to love everyone. Understand?”
Lucy: “Yes, Mudder.” [Which is what she calls me when she wants me to leave her alone.]

I have a business degree. I have no background in counseling. Honestly, I don’t know if I did it exactly right. But I did go into the conversation with a few goals.

We can’t tell our kids that race doesn’t matter. To me, that’s like saying Catholicism doesn’t matter because we aren’t Catholic. I wanted her to understand that people are different, but diversity is beautiful. Roots and heritage are amazing, and something to take pride in.

I wanted her to realize there were people in her life already with different colored skin. I honestly don’t think she’d thought much about it. And then I prayed for all of the children who notice that much sooner. Because it does impact their daily lives. And it does impact the way others treat them.

But I love that it wasn’t an issue for her, so I tried to keep the conversation short enough that I didn’t make it into an issue. I love that we live in such a diverse area that she doesn’t find it strange to be around others who are different from her- and that she even finds herself in the minority often.

There are so many facets to this story. There are facts we don’t now and may never know. But I think it’s a great opportunity to talk about the bigger issues it raised. There’s a lot to pray for, but I pray most that we become a community bonded stronger rather than torn apart.

I want her to understand beauty and love. Those are the things I want her to spread. There’s so much beauty here. And we have so much love to share.