5 (Daily) Challenges You Face when Your Kid has ASD

By Loryn Stone

 

I didn’t think I would be back so soon to write another article about my adventures in parenting, but here we are. And for those of you who don’t know, I have two of those little crazy-duckies. In my last piece about my son Avery, now five years old, I focused mostly on the process leading up to his Autism Spectrum Disorder diagnosis and a brief overview of what life (in the abstract) was like today. Now, I want to discuss what our day-to-day challenges entail. Fortunately for him and everyone else involved, Avery is on the very high-functioning end of the autism spectrum.

IMG_2800
And he always makes me smile. Always.

He has so many strengths, and he’s seriously come so far. I’m proud of my little dude every single day. He asks empathetic questions, expresses his feelings correctly, and conveys all his needs verbally (up to and including “My butt is itchy”, which I think is very funny). He’s an excellent reader and writer, still knows more shapes that I do, has all those months of the year down like a champ, and is a very impressive photographer. My son kicks ass, truly, with or without any ASD.

That said, there are very specific daily challenges we face that I think are worth discussing, such as…

5. You’d Better Be Creative with Games

IMG_3457

Which of course, I’m not. I look at Science-project-crafty-parents and I want to worm into their heads like a parasite and learn all their secrets. Give me all your knowledge, your games, your ways to pass the time that include your children excited and happy. How do you get your children to play alone for five minutes? Because around here, honestly, playing with toys is a thing.

A mostly unsuccessful thing.

Avery doesn’t play with toys the same as other kids. Early games included me hiding coins or beads in balls of PlayDoh. It was exciting for him to peel it open and find the surprise inside. But he’s moved past that. At age five, Avery should be immersing in imaginary play, using toys to project stories onto, using them to act out what’s in his mind. Unfortunately, this just doesn’t happen.

Hopefully it will?

Avery’s method of playing with toys is usually lining them up to look at. And as many autism parents can tell you, this doesn’t always involve actual toys. I can’t tell you how many fights Avery and I have had over him stealing every soap pump, calendar, and box of baking soda in the house. His therapists tell me this is called “Hoarding”. I’ve seen him using train tracks correctly to push the cars along, but sadly, those games just don’t last very long. PlayDoh is still a fun activity, and he’ll reenact PlayDoh cooking videos from YouTube for an extended amount of time. But given any sort of doll, blocks, or cars, and he doesn’t know how to create any world for them to exist in.

IMG_4064
But he gives a damn good smolder-eye.

He’s even seemed to have lost interest in blocks and Legos, which for a minute he was playing with correctly. Until it dissolved into him following me with a huge box of Duplos and spilling them at my feet and laughing. At first I thought he was just trying to get my attention, or he delighted in aggravating me (who doesn’t love pissing off their mom?) but after a few rounds of this, I started to realize that him dumping the blocks (to make me mad) was the game.

And when he does show interest in a new toy? You hurry up and buy them all, every fucking version and color of it, damn it. In a hurry. But I have to keep a very close eye on him too, because he will constantly ingest his toys. Seriously, I’ve seen him consume the limbs off plastic and rubber toys. His therapists tell me this is part of an eating disorder called PICA, an affliction where an individual constantly eat things that have no nutritional health. This of course, can be dangerous. I want him to have his toys. But I want him not to choke or have a stomach-full of plastic more.

IMG_2859.JPG
Ice cream is a much better option

These days, I see him becoming more solitary. He can play The Legend of Zelda: Breath of the Wild for hours if I let him. Seriously, he’ll play (for the most part, correctly) for up to four hours if given the chance. And I know what you’re thinking- why would you let a five-year-old play a video game for that long? Well, on most days, I don’t. He has a time limit. I set a timer, we stick to it, and the game goes off. But on other days, my poor boy is so damn agitated and volatile over nothing (screaming, grunting, hitting, or crying when nothing has happened), that for the sake of a little calmness in the house, I’ve let him just play quietly.

 

4. Self-Care is a Nightmare

IMG_2926.jpg

I know that helping your kids is the only way they learn to take for themselves. And I know that some kids learn at different speeds than others. It would be stupid of me to expect a huge amount of personal hygiene from a five-year-old. However, it would also be incorrect to assume that the average five-year-old can’t take care of themselves in any capacity.

While I mentioned in my last article that Avery was fully toilet trained, he has no idea how to wipe after pooping and needs to be forced into washing his hands. Regardless of how many times he’s instructed, he always fights me with the hand washing. He’s unable to dress himself (although of course, undressing is zero issue, and happens multiple times throughout the day once he’s home from Preschool). He can pick out his own clothes in context, but if I say “Hey, run upstairs and grab some socks” Avery is pretty lost.

Speaking of clothes, I can’t get him to wear a jacket. Weather be damned, if he doesn’t want to wear a jacket, he won’t. No matter how cold he gets. Tags? Forget it- those fuckers need to be gone before a shirt is allowed to come near him. Plus, the poor child fidgets so much and his attention is everywhere, so just getting him to sit down and hang out long enough to get socks on is a problem. He’s also not able to put on his shoes, and by five, most kids are coming up on shoe tying. The whole “getting the damn thing on your foot” is supposed to be mastered by now.

As for the rest of his personal care, it’s pretty hit and miss. About a month or two ago, Avery was doing a really good job with brushing his teeth, unprompted. Right before bath time, he’d run to the bathroom, wet the brush, put his own toothpaste on, and brush correctly. I don’t know if he got bored with the activity or the obligation or something, but he no longer shows interest in initiating the task. And getting him to wash himself in the bath? Forget it, he becomes so passive and disinterested that I can hardly clean him some days. Oh, unless I’m trying to wash his hair. Then he’ll grab me arms and scream in my face to stop touching his hair.

So, as you can see, the odds aren’t always in my favor here.

 

3. Spontaneous Trips and Adventures are out the Window

IMG_3806

Avery has a routine and doesn’t take well to changes. When I pick him up from preschool, he wants to go home. Sometimes I can manage to sneak in a park or mall trip, but most often he’s staunchly against it. So, we go home, I feed him lunch, and he wants to play Breath of the Wild. Very seldom can I convince him to go to his Great-Grandma’s for a visit, out for a playdate, or any social activity places like the museum, zoo, or aquarium. And on the off chance you do get him to a new place, be prepared not to see/do anything. Or, not be able to see/do the thing you planned on seeing. Because Avery will find one thing he likes and stay there.

All. Fucking. Day.

It makes for some bizarre adventures. We went to the zoo with some friends and he hid in the splunking caves. Avery also has an obsession with signs and bathrooms. His playground tolerance is low and he gets bored very quickly, even in the sandbox. Sometimes he’ll run off to play in the dirt, run up and down a hill (with or without me because he’s unable to just stay in one place). While other kids are having grand adventures on the slides and climbing gear, Avery just…leaves. I learned from his therapists that this is called “Eloping”.

My body isn’t exactly…you know…in shape. But I’ve literally never run as much to chase Avery more in my life. Recently at the beach, he decided he was done playing on this cliff we were poking on. Down he went, without warning, into the ocean. My husband doesn’t react as quick as I do, nor can he run as fast. So, it’s always me. I had to jump off that cliff without thinking, and power run right into the ocean. Adrenaline is my best friend with running now. Parenting Avery (mixed with my DDR habit) has made me speedy.

One time, I let my guard down during a family trip to New Hampshire. We were walking in the woods (because that’s all that’s out there). I’d been following Avery closely and my husband was holding the baby. He handed me the baby and said he was tired of holding her. Avery ran off, unsupervised and fell into a lake he didn’t know was there. And like I said, I’m usually the one to chase him, but I had this heavy baby in my arms. My husband froze because his “catch the wild kid” instinct isn’t as sharp as mine. Therefore, a stranger (thankfully) jumped into the lake and saved my kid.

Praise the stars it wasn’t a serious accident, but it happened because my son can’t listen when someone says “Stop, don’t, stay with me, come back”. I’m not even being cute when I say he’s like an unleashed dog.

 

2. How Avery’s ASD affects my Daughter

IMG_2519

My daughter Leia will be three in March. She’s a sweet yet feisty, talkative child who loves playing games, figuring out her surroundings, and getting a rise out of me. She’s really big on imitating…and she imitates the worst aspects of Avery’s autism disorder. She wants to see new things, go new places, and have a host of new experiences, but she lives in a reality where Avery commands and dictates the entire family’s next move. She also copies the sounds he makes and his sometimes-bizarre body language, such as the grunting, and flailing, and screaming, and noise making.

Fortunately, she’s very verbal and does her own thing too. But seeing a developmentally normal child imitate an autistic one is a strange and unique experience. Being around Avery is her normal. She understands him better than anyone else does, and luckily, he talks more to her more than anyone else. In fact, her being so verbal has really kicked his speech into gear. Though often, he still go off quoting YouTube videos or copying the Alexa machine (which is what his therapists call “Scripting”). When she was born, he was almost 2.5 and said zero words. Now, hearing them talk to each other (granted at the same level, and she’s going to be ahead really soon, I can tell) is just about the most adorable thing to my ears.

Sadly, some of the sounds and grunts and screams he makes are just awful. There’s this one that he does that straight up reminds me of something Pennywise the Clown does in the new It movie. I think it’s down in the sewer or something where Pennywise is shaking his head back and forth, screaming and twitching, running directly toward one of the kids. It’s jarring and terrifying, and it happens to me at least a few times per day. Avery can’t stop himself, and when I see Leia flapping her hands, grunting, or dancing in places strangely, it’s enough to make me want to cry.

 

1. You Need to Plan for the Worst and TRY for the Best

IMG_3920

Parenting tricks don’t work for me. Everything needs to happen in a different way. For example, moral words like don’t touch me, stop, no, you’re hurting me don’t work on Avery. It makes for scary parenting when all you want is for your kid not to end up a criminal or a rapist. Similarly, like I said in my last article, I can’t take a knee and explain things to him.

It doesn’t work.

I need to be one step ahead of him at all times because he also has as much trouble stopping activities as he does starting them. All kids are stubborn, and they want their own way all the time. But saying “okay, time to move to another thing” before HE is ready, can result in these endless, screaming, sometimes violent tantrums. I have the utmost respect for his special-education preschool teachers, because these magical fairy-godmother queens with endless patience can get him to do anything. They just make things into a little dance, and he’s on it at school. At home? There’s just no winning.

I’ve been at friend’s houses whose kids were misbehaving. After however many chances, the child in question was given a time out. They were sent to their room, told to stand in the corner, or sit quietly on a time-out chair. And they do! They just…obey and sit there until their Mom says it’s time to get up.

Are you kidding me? That has never happened with us.

I’m not able to give Avery a time out. He doesn’t listen. He doesn’t give me a break. I say go to your room, and he won’t go. If I lead him in there, he won’t stay. If I tell him to stand in the corner or sit in a chair, he simply won’t do it.

I started therapy two weeks ago to try to solve my marital and parenting issues, and so far it seems all right. My therapist made the suggestion of trying to get Avery on a rigid schedule like he has at school. As mentioned in my last article, Avery is an angel at school, the star of the show. A complete and total pleasure. Which is why I’m so confused by the angry, screaming, sometimes unhappy child I have at home. We are also beginning a new service through the Los Angeles Regional Center, which is a Behavioral Skills service. A therapist comes to the home once a week and teaches him how to function with daily tasks and cope with his feelings.

IMG_3467.JPG
Night, night, baby boy.

They said there was a possibility that I am enabling the behavior. If I am, I’m terribly sorry and I’m desperate to learn the tools to help make this better. I have no answers to any of this. I don’t know what to do. I’m trying to accept the reality with which I’m presented. I’m trying to give Avery the best possible life I can while still performing the activities that make mine worth it too. Like my writing…I can’t function without it. But we’re going to be okay. We have to be okay. There’s no other existence other than okay.

But you know…come to think of it, Avery does very much like baking.

Maybe cookies really are the answer to all of life’s troubles.

 

If you have any Autism-Spectrum parenting tips, you can share them with Loryn on Twitter

If you like what you see here, you can follow PopLurker on Twitter and Facebook!

Support us on Patreon and we can make more hilarious content!

 

Advertisements

2 Comments

  1. Hello, awesome mom of an awesome girl and an awesome boy. I teach teenagers like Avery. It is so valuable to read about your experience. It helps us -teachers – in school to concentrate on creating educational and vocational goals that really matter. Post like yours gives us a valuable perspective on what is important – even something like teaching imaginative play, or figure out how to compose meaningful activities to play alone for 10-15 minutes. Thank you! Katarina

    Liked by 2 people

    1. This is exactly what I needed to hear. Thank you so much! I love sharing my experiences and I’m so grateful to you and your colleagues for the work you do. ❤️ My baby loves school so much.

      Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s