Autistic Days

Landon just wrapped up his first month of school. It’s been interesting, to say the least. We wrestled so much with the idea of sending him to school. We wrestled so much with the autism diagnosis. We even wrestled with the idea of having a kid in special ed. But he’s in school. And in class with two other autistic kids. And I think he’s doing great. Funny how that works.

Today was a very “autistic” day for him. I think that’s one of the reasons we really dragged our heels on believing the doctors’ diagnoses: we said he’s not autistic, he just has autistic days.

On an autistic day he might wake up scared and disoriented. He might try to order himself by piecing together intricate train lines circling around his room. I’ll try to get him to eat breakfast but he won’t. Sometimes it feels like he can’t hear well because he’s so good at tuning me out. I ask him a few times to get dressed before I have to dress him like you would a baby. He has low muscle tone and his joints are so loose. He’s also double-jointed all over and it all just makes him a bit floppy. Limb by limb, we will prevail.

I talk to him about what we’re doing. He really likes pre-warnings. That’s therapy speak for telling him what we’re going to do next. We even have to do it for which side of his mouth we’re going to brush first or he’ll bite down on the toothbrush and not let go. We’re almost finished getting dressed when I see that he’s already brought the shoes he wants to wear today over. He is very particular about his shoes. And apparently a ninja because I never saw him grab them.

Sometimes I wonder what he thinks of me rushing him. He can get so caught up in his own little world. In his world it doesn’t matter if you’re late to school or have food all over your face. Some days it doesn’t even matter if you have an accident in your pants. But it does matter if someone else touches a piece of train track. Or changes the order of the cars you lined up.

When we leave for school it’s very upsetting that Chuck left some shoes on the stoop! And they got rain in them!! After we work through that, it’s time to walk to the van. To do that we have to walk down the sidewalk to the street. He’ll start a few times and go back and start over until he gets the cracks lined up with his steps just right. At the end of the sidewalk, it’s important that no one try to hold his hand in the street. Just this street, he’ll hold your hand anywhere else. Then it’s time to walk along the crack where old asphalt meets new. He’ll stop to say, “OoooOooh.” And point at the crack to which you must reply [any reply will do]. Then he’ll keep walking. He walks into the driveway and rubs along the side of the van with the right side of his body. Just a bit of proprioceptive input before we get in the car. And a bit of road dust.

One morning the walk to the car didn’t go as planned. I didn’t realize about the asphalt crack and when I tried to put him in the car he went into panic mode and kicked me in the face. My neighbor looked rather distraught and said, “Now, you need to be a good boy for your mama.” We had to get out of the van and do the walk to the car again. But it didn’t help. The walk was already messed up. So I wrestled him into the car. I’m positive it looked the same as if you attempted to put skinny jeans on a wet pig. But we got it. There was wailing. Huge crocodile tears swam down his cheeks. And off we drove to school.

School is three-quarters of a mile from our house. A left turn, a right turn, a left turn, and another right. It’s close. I got to school and tried to brush the dirt from the wrestling match off my jeans/arms/face. Literal dirt, Jay-Z. I open the door on Landon’s side and… he smiles at me. I unbuckle him and he hops down and grabs my hand. We walk to class and he greets his classmates with a “HiiiiIIIIIiiiii.” Whatever it was is forgotten.

I hold on to his backpack, not sure if I should warn his teacher about the rough start to his morning. I watch as he walks over to a table in the middle of the classroom and uses a chair to climb and stand on top of it. His teacher patiently walks over and says, “Landon. Tables are not for standing. We need to be safe friends. Safe friends sit at the table.”

Leaving the classroom, I feel a wave of relief followed by a wave of guilt. I have three hours to do the tasks that are harder to do when Landon is around. I can let my patience guard down a little. And then I feel the guilt.

They say parents of autistic children show three types of guilt: First, most parents pick themselves apart to see which autistic behaviors came from them. “Oh, I am a bit OCD at times.” “I have to force myself to look people in the eyes; it’s not a natural thing to do.” We think back to our pregnancies and deliveries and try to flesh out anything that might have been unusual. We scour our family trees to see if there’s a genetic lineage. Second, there’s the guilt that we’re not doing enough. 25-40 hours of therapy a week is recommended. We are doing 12 hours at school and about 2 at home. We’re working on getting on a couple of waiting lists for some private therapies. By some standards, we’re failing. How much of our monthly budget should we commit to co-pays? Should we start saving for an iPad for him to use for an augmentative and alternative communication device? Did I spend enough time with the other kids? The third guilt is the guilt I feel when I leave Landon at school and head home for three hours. The relief to know that the baby won’t be screamed at. Relief of not having someone follow me around hugging my leg and leaning against me with all of their weight. Oh my gosh, the guilt of complaining about my sweet precious boy hugging me. It could choke me. But it doesn’t.

When we go to pick Landon up we watch while he sits on a tricycle in the gym, away from all the other kids. Away from the kid who’s rolling a grape between his fingers mere inches from his face. He’s trying to follow the lines of the floor tiles while he pushes it along. He doesn’t like the pedals. He can’t figure them out just yet. Sometimes when he sees us he gets a worried look on his face because he hasn’t finished following the line yet and the teacher’s aide is walking over with his backpack. On the good days when he sees us he smiles. He has the best smile.

When we walk outside a plane flies overhead and even though it’s high in the air, the noise startles him and he covers his ears. But he loves planes and after the initial shock we can point at it and say “aiiiih-yah.” It took a long time for him to point at things. I try not to take that simple gesture for granted. When you go through a long and hard journey to get something simple, sometimes it’s easy to downplay just how much work it was. I’ve been labeling everything in my life for the last two years. Lately we’ve been labeling it and then trying to translate it to sounds Landon can say. “Van. vAh. Door! Doh. Landon up. Up! Arms. Ah! Time to buckle! Buh-oh. Bye bye school. Buh buh OOooo.”

When we get home if I don’t engage him, he will go to his room and shut his door to play trains. It’s almost scary to me how comfortable he is alone in his room with the door closed, but I wonder if that’s only because it’s been approximately four years since I used the potty by myself.

On bad days he doesn’t want to make the right sounds. He chooses an “easy” sound and repeats it. All day. Sometimes he only repeats it to me: “Do you want a sandwich for lunch? Bah.” Sometimes he stands in the middle of the kitchen turning in circles repeating the sound, “Bahbahbahbahbahbahbahbahbahbahbahbah.” I never know how many repetitive things I should let him do. That seems like a pretty safe one so I let him go for a couple minutes and then ask him if he wants to wear his vest.

The vest is amazing. It’s a weighted proprioceptive vest. He loves it. I think, to him, it feels like a tight hug the whole time he’s wearing it. And the weight makes his joints feel less wobbly. It doesn’t hurt that it makes him look like he’s a member of an elite S.W.A.T. team. We all love the vest. Recently we added a weighted blanket for nap-time and a weighted lap pad to try to help him sit at the table to eat. Sitting still is really hard! He has a hard time finishing meals because sitting still is so hard.

Autistic days are hard. But I’m thankful for them. And I’m thankful for days that are less autistic. I’m thankful that I get to spend so much of my time figuring out what makes Landon tick. Helping him cope with things that stress him out. Figuring out where the cracks in the asphalt are so that we can see new things together. I’m thankful that I get to be his mom. It’s a big responsibility to be in charge of someone so great. Someone with so much potential for greatness, primed to press positive change on the world.

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8 thoughts on “Autistic Days

  1. Beth, is Landon your child? I’m Lolly, Dan (and Mel) Murphy’s mom.

  2. Christina aka mommalovescookin' says:

    YOU all are wonderful! <3

  3. Hi Beth,
    My sweet friend (and former classmate of yours), Jessica Lee, sent me a link to your blog. My son Henry was diagnosed with high functioning autism in March. Your post is such a beautifully honest account of an autistic day. Thank you so much for sharing. As a mama of a child with autism, reading about or talking with other mamas on similar journeys has brought me comfort, encouragement, and the knowledge that I am part of a powerful tribe of truly incredible women. I look forward to reading more of your experiences!
    Warmly,
    Allison

  4. Laurie McBride says:

    Beth, it was so good to read this! My brother was never officially diagnosed with Asperger’s, but all the signs pointed to that. He was definitely on the high-functioning end of the scale, but so much of what you wrote reminds me of my brother when he was younger. I know it was a challenge for my parents, but also incredibly rewarding. I wish we had all known more about Autism and Asperger’s when he was younger. So thankful you have so many resources to help, but I know it’s a challenge every day. I so admire you and Chuck and love reading about your family. Landon is such a cutie (all your kids are), and he is so blessed to have you as a mom!!

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