A Day in the Life of Survival Mode: An Anxious Mother's Account

Survival mode. It's something that I know a lot of special needs parents live in on a daily basis - I am counted among that number.

As your kids get older and out of toddler and preschool age, I think the expectation is that they are a little more self-sufficient. A little more independent. I see these skills emerging in Jovie - skills I have never really seen in Grayson and sometimes see in Easton who is affected more mildly by his version of autism.

I look back to when I was Grayson's age, and I was able to do everything that Grayson and Easton even to some extent - cannot do. I could easily put my own socks and shoes on for starters. It's daunting to know that this is not something Grayson will ever outgrow. He'll change and develop as he gets older, but he will always be behind in very significant ways. He will always need constant care. He will always need to live with us or with a caregiver when we are too old to care for him. It's a fact. 

His baby, toddler and preschool years have not come and gone in terms of development. In fact we are still in the thick of them and we will be for years to come.

We are nearly ten years into this. A full decade of survival mode parenting. 

This is complicated further by shift-work. 

Today I was thinking about what my average day on second-shift living looks like as we prepare into going back into full-time second shift living, instead of just two days a week like currently. We lived this life for many years, and I hate that we have to do it again. When Mike told me, I cried. I have been grieving it every day even though I knew it would happen again. It's no surprise. 

My cycle of anxiety starts around the time I pick the boys up at school. (Mike is already headed off to work. Sometimes Jovie is with me - sometimes she hangs out with my mom.)

Usually, I can start feeling it churn in my stomach first when I pick Easton up. Sometimes I can talk to other parents waiting for their kids, sometimes I cannot because I am starting to get consumed with worry.  

Often when I get Easton, he has a funny story for me as we walk back to the car - but once we get into the car, he gets fixated and agitated on a topic and is quickly near tears. (It used to be he wouldn't even come to me at all and would hide behind his teachers and principal yelling things like 'YOU AREN'T MY DAD!') He yells at me almost the entire time, especially if I say something he doesn't like, and so I am learning to just keep my mouth shut. I know this is just the let down from being in school all day. Somedays I drop him off at my dad and mom's after school for just a little bit. That usually makes us both very happy.

Then when I drive to Grayson's bus stop, I am in almost full-fledged fight or flight mode while also being chewed out by Easton. My heart is racing, my palms are sweaty - I am nervous. Flight of course isn't an option as badly as I wish it could be. So fight it is. 

No one talking to me in passing during this hour of internal mayhem usually has any idea that I am not okay. I am not doing okay. I smile, chat, laugh - all the appropriate social cues. But I am not alright. I am waiting for the school to call that he's been sick on the bus (it's happened), I am worried that he's lashed out at someone on the bus (this has also happened) but I am mostly concerned about what kind of Grayson is going to step off the bus. That's my biggest concern. All the while Easton is yelling at me. (I have mostly tuned him out now.)

Usually, Grayson is indifferent about seeing me. Sometimes he's happy and gives me a hug and a kiss. Sometimes when I buckle him into the car, he grabs me around the neck and nuzzles me in the sweetest way. When this happens, I can relax, breathe a small sigh of relief, and I am extra happy if I hear him ask for his french fries - a daily trip to McDonald's for french fries is imperative. 

When we get home though, that's when everything is unleashed.

I have two boys trying their best at school to listen, to follow directions, to get along with others - sometimes they are successful, other times not so much - and when they get home, they are like a dual deluge of every emotion under the sun. They are in their home where they are comfortable They literally strip their clothes off the minute they walk in the door. Socks and shoes go flying. Coats are whirled in the air. No matter how many times I have instructed them to behave otherwise.

I get it. I understand but it doesn't make it any easier.

Typically, Easton has already been letting loose a little bit so he has a lot of it out of his system.

I try to get things done around the house. I attempt to make food but it doesn't happen - usually we just snack all afternoon and evening. I am shocked I am either not 100 lbs overweight OR skin and bones. The yelling and screaming and now fighting amongst the siblings is so loud - it's too much to bear - so often I put my earbuds in and listen to podcasts as I clean up after them, change diapers, do laundry, help in the bathroom, literally walk around the entire time attending to some problem. Sometimes I hide in my laundry room or the bathroom just so I can catch my breath.

Grayson will often have a meltdown of epic proportions during all this. He will stomp his feet, punch the walls (just waiting to hear that sickening cracking of snapping drywall), lay on the ground and kick, go after his siblings, come after me, jump angrily up and down causing the entire house to shake. He will begin yelling demands at me. "K-KAKES!" (Pancakes) "Ch-Ch-Ch" (Diaper Change - I hear that about 4 times before bedtime) "HOT!" (Hot dogs) "WAT-UH" (Water) "MEAT" (If I am browning hamburger) "COOKIES" (Self-explanatory) "OUTSIDE!" (Also self-explanatory) "SU-CREAM" (ice cream) If I do not see to any of these needs immediately, he is outraged. 

Then he will calm down, get what he wants, get it out of his system, and then head outside if the weather is nice - or down to the basement if not. You can hear him giggling while he swings, and you know all is right in his world. His happy stimming noises are music to my ears. 

The anxiety begins to ease. I am good for just a few hours. Unless he gets angry again and then I wait it out. Or I lose my temper and I start yelling at everyone. It's a great time.

It's very difficult to be yelled at constantly for hours on end. It wears on a person.

And then bedtime hits. Panic mode begins once again as I rush around trying to get everyone medicated with the appropriate medications, bathed and put to bed. Once everyone is asleep - sometimes it takes hours before Jovie is asleep as I am only one parent stretched thin to get everyone to sleep - I sit on my bed and try to watch Gilmore Girls, when the anxiety begins again. My stomach is sick. I pray for an easy night.

I doze off only to be awakened when Mike gets home, then 2:30, 3, 3:30, 4:30...each time by a different kid. Ones using the bathroom. Another one is in my face. Another one is climbing over me and kicking me out of bed. 

Sometimes I try to lay in another bed. Sometimes I come downstairs and lay on the couch. Sometimes I give up and clean my house.

Then all of a sudden the alarm sounds. I feel like I have barely closed my eyes. 6:30. Time to wake the kids and start all over again. Once I get them off to school, I can breathe for a couple of minutes while constantly checking my phone for missed calls from the school (it happens) and text messages from the teachers (this also happens - I welcome the texts saying they are having a good day! - Then I can relax a little.)

All of this to say - this is survival mode.

This doesn't include other factors like preschool, or even Jovie in general, doctors appointments, therapy appointments, specialist appointments, changes in school schedules, changes in Mike's schedule, Mike working a dangerous job, random constipation from 1 or 2 kids, migraines that come from nowhere, meetings with the school, meetings with the county, worries about finances, potty-training regression, perpetually clogged toilets, thoughts about being a good wife and mom and friend and daughter, thinking about what I could do differently to help our family succeed, thoughts on how I need to be working but I can't figure out how to do that on our schedule, also I should be sitting and making memories with my daughter or reading to my kids more and I really should have walked today and I probably shouldn't have ordered such and such on Amazon and and and and...

It's never-ending really. It's survival mode. 

Such is the life of this mom.

Some days are amazing, most are not. Usually, when Mike is home, things are a little easier. 

However, I have survived every one of these days so far. My track record is good. I haven't run away from home as much I dream about doing it. My kids are happy sometimes. They aren't necessarily well-behaved and you won't find them wearing trendy clothes that match. One might not be wearing weather-appropriate shoes. Please don't tell ask why they aren't wearing their gloves when we are outside and its cold. Jovie's hair will probably be a mess.

But we have made it through every day, so I think we are doing good! Maybe even great! Fantastic even. :) Well that might be a stretch. We will stick with good.