Autisms – A day in the life of what autism is like for us.

Since today is World Autism Awareness Day I figured I would spread some awareness to you guys just like I did to the people at the park and my neighbors.

Sam is a very sweet boy. He is such a joy, such a love, the world is a better place with Sam here. But he has some very difficult behaviors lately. And most of them aren’t really due to his autism but to the other disorders he has – mainly OCD (obsessive compulsive disorder) and SPD (sensory processing disorder). He obsesses over things and gets very anxious when things don’t go exactly the way he wants them to. And he is very sensory, he has a hard time with loud noises, bright lights, he needs constant motion just to feel normal, he needs deep pressure, proprioceptive and vestibular input all day. He is still pretty much non verbal, has no concept of danger, and elopes every chance he gets. Like at least twice a day at school.  So he can be quite the handful.

It really should be plural — “Autisms” — to best describe autism… because there are many different kinds of autism. I want to help people understand more about Sam’s autism. I think one good way to give you an idea of what autism is like for us is to give you an example of a typical day for us – today – here’s how today unfolded…

3am – Sam is actually sleeping, but often he is up and having a party at 3am. Sleep disorders have been a constant with him since he was born. The kid can function on little to no sleep. I’m up with baby, she still eats usually once or twice a night, so with these two I very rarely get a good nights sleep.

6:30 – 8:00am — wake up, get 3 kids ready fed and dressed, 2 kids ready for school. #1 goal: Try to keep Sam happy during this transition (he doesn’t like transitions) try to keep him from getting stressed out, having a meltdown, and injuring himself. #2 goal: get them to school on time, groomed and fed.

8:30am- 9:30ish…am — drop older kids off then walk with baby at the park, pause and admire the trees, the alligators swimming, hawks and eagles, owls. I feel so blessed to have this kind of beautiful nature so close to my son’s school.  I drop him off and head there after and enjoy some calm, peaceful moments. Realistically the only calm and quiet I will experience all day. I deserve it and I take it. And soak it all in. I walk fast and sweat my stress away. And hopefully some pounds, too.

10am – 2pm — home taking care of baby, at this clingy 8 month old stage. She is so sweet and happy and I want to love her and squeeze her all day, but I need to clean and make phone calls, like that dentist appt I’ve been putting off and stuff, because this is all the time I have to actually get things done, and the house looks like a bomb went off, as usual. But alas I have a baby and she will not settle or nap, she will demand my attention all day, and I will accomplish little. This too shall pass.

2:20pm – drive to get kids, dodge idiot slow drivers who are on vacation while I’m just trying to get from A to B on schedule, feed baby a bottle while driving.

3:15 – arrive home with all three kids. In the driveway, after Sam obsesses over our cars doors for 5 minutes or so, he is ready to move on to his other ritual, shredding the leaves on the bushes in front of the house. And now that the car doors have been obsessed over and the leaves have been shredded we can go inside happily. If I try to cut that ritual short he will have a meltdown. I follow with him on his car harness and attached leash, which is tightly wrapped around my wrist while I carry baby. If he wasn’t on the leash he would run off. I know because of all the times he has run off, and because my wrist is red from all the times he tried to run today already. And since he has no concept of danger, running off can have major consequences.

3:40 hubs is home from work, yay! someone to help me with the kids. But of course he’s tired because he was working all day. Me too. He rushes to get ready, change his shirt – today Sam has OT. Dad takes him, he has a good session except for obsessing over the cars in the parking lot, as usual.

4:40pm – boys are home and Sam wants to go to the park. He is freaking out, crying, sobbing, screaming, begging to go to the park for his daily nature walk. We tell him he needs to wait, it’s not time yet. He is upset, cries big elephant tears, breaks mamas heart, all because he has to wait a few minutes before he can go to the park. I buy him a $2.99 in app purchase for his car wash app and he’s thrilled, he has 32 more cars to wash, he is happy now and will actually wait for the park without freaking out the whole time. $2.99 very well spent.

6:00 – Sam and I head to park – get there – he obsesses over every car in parking lot. He wants to touch them, open the doors, or at least try to, peek in each window and admire the interior — sometimes he gets one with unlocked doors and that’s the jackpot. He’s so big now, 9 years old, 65 pounds, all muscle, that it is a full on wrestling match to keep him away from other people’s cars. He is totally obsessed with cars, like on an unhealthy OCD level. We’re working on hopefully getting past this phase soon.

7:00pm – he’s ready to leave the park because he’s too obsessed with the car that was unlocked to have any fun on his nature walk. All he can think about is opening the car doors. He is totally obsessed to the point that all his muscles are tight and he is having a total meltdown when I tell him he can’t touch the cars. I give in and let him touch them. I failed, I know. But at least he can stop freaking out. Well, a little at least.

7:20 – almost home but he wants to go to the park in our neighborhood now. I say ok since daddy started this ritual and he said Sam likes to climb trees and stuff so it seems harmless enough. On the leash, of course, or he will probably run into the road. Or at least into someone’s car.

arrive at park – Sam sees all the other cars and freaks. Has to touch them. But the owners of all the cars are there, playing tennis, swimming, basketball, and staring at us. So I wrestle him, beg him, tell him “NO TOUCHING CARS!”

Everyone is staring. Not every day you see a screaming, flailing 9-year-old on a leash with a mom wrestling him and telling him “no cars”. We know a few people, say hi. The others are staring so much I look at them and joke – “Well today is Autism Awareness Day so I guess we are spreading some autism awareness here haha”

They just keep staring. No laughs. No “It’s ok” — nothing but scorn and judgement. Which we unfortunately are very accustomed to.

Our house is through the woods at the park, a shortcut. I’m so tired and done from the day that we go through the woods and walk  home. Leaving our car at the park so we can avoid more parking lot drama. And more stares. I have to drag Sam home because he wants to touch our neighbors cars. He is screaming and crying as I try to wrestle him away from the neighbors driveway and pull him in the house. I come in front door with a screaming Sam.

Hubs is home with our baby and 11-year-old. I am spent, I tell him he needs to take him because he’s the one who started the whole routine of going to the neighborhood park. I’m mad, he’s tired, I’m tired, we’re so stressed. I yell, tell him he shouldn’t have started taking him there because it’s too tough. He takes him and we trade, now I’m home with baby (screaming hungry tired baby) and 11-year-old (of the ADHD, grumpy, whining, I hate homework variety).

At this point I am trying to feed and settle the baby. I asked hubs to make sure she did her homework while I was at the park. He didn’t. (but he did do the dishes and laundry so that helps) So here we are, in another homework battle of wills. And she is definitely going to win. I have no fight left in me. All I can do is beg her to do her homework.  Pretty, pretty please! And after that shower and brush your hair. PLEASE! Be a good girl for mama, don’t argue, just do it. PLEASE. She rolls her eyes. I hate puberty! This is going to be an interesting few years. And, like her, I also hate homework. I think it’s crap that they make kids do school work after they’ve been at school all day.

After the boys go back to the park and get the car, obsess over cars, who knows, I didn’t ask, Sam is home and obsessing over something else and feaking out and screaming. We tell him it’s time to settle down, take bath, transition him to his room. He’s happy, door closed and locked. whew!

And I look and it’s 9:11 – first of all that’s way earlier than usual, so that’s good as long as he actually settles down. And second – it’s “11” – I always see 11’s – supposedly it’s the angels telling me they are here and listening. ha. If they are listening hopefully they are bringing me lots of money soon so I can hire help, buy a big house, have a huge yard with a big unclimbable wall around it, you know, the usual.

Now it’s time to figure out what to eat. I’m starving.  Now that’s Sam’s settled down I can relax a little. Oh and make sure the other kids have what they need. I play catch up, make sure 11 yr old has homework done, help her brush hair, love on her, apologize for being so stressed and busy all the time. Baby is asleep, finally, after a pretty much nap-less day. She only napped in the car so that doesn’t count.

It’s already 11pm. Time flies. Kids are asleep, and I finally get to rest. I  melt into my bed and sleep.

2am – Sam’s awake. party time. He’s running all over his room, climbing, jumping. I can see him on the video monitor. I give him his iPad since he obviously isn’t going to settle down. Baby wakes up for a bottle. Feed her and settle her back down.

Baby won’t sleep. Sleep, baby, sleep! Please! Pretty please?!!?

4am – baby is still awake. And so is Sam. And me. I give Sam a snack in his room, water and cheez its, his favorite. He’s so picky he doesn’t eat much so I figure he’s probably hungry. As soon as I close his bedroom door and walk away I hear the cheez its get dumped on the floor. Then the water. Oh good, another mess to clean. Something about the smell of wet cheez its totally gags me.

4:30am – baby is finally asleep, Sam is still awake, locked safely and happily in his room. I fall asleep.

5am – jolted awake by what sounds like crying. But it’s the damn cat! Cat, you don’t realize what you are doing to me. This is all I have, these few hours of sleep, please shut up. Please please, pretty please. In my half asleep grumpy tired mind I think about throwing the cat in the pool. That’ll teach her. But she’s spared. Instead I let her in off the porch and she shuts up. Smart move, cat.

6:30 – Wake up time! What? No! Not yet. I just started to actually get some good sleep.

…and repeat.


August 2020