Regression

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Memory is a funny thing. We tend to forget, push away and even change what’s happened to us and the way we keep those memories in our minds.

It’s been 3 years since we moved from Pennsylvania to Texas, and it’s been 2 years since we moved from the apartment into the house.

Twice, since the boys were diagnosed with Autism, we’ve had MAJOR changes for the boys to the point where there was regression. So, I knew it was going to be hard moving from the house into an apartment, but I knew I could deal with it, just like I have in the past… and besides… it’s one step closer to us being able to move to Colorado.

I remembered little things, like the boys having a hard time sleeping.
Being upset because of change in routine and not knowing what’s going on…
I remember being tired.
Remembered Justin having belly issues…
I remember fearing regression.
I mean, who wants to work REALLY hard, just to lose it all?
I remember crying to doctors asking them to find another way to treat my children because I was scared they’d regress because it would be such a shock to their systems > like having 6 people holding them down while they’re screaming bloody murder trying to draw blood…

It’s ironic just how much I forgot or pushed away until it all happened again, until I started seeing the changes and remembering why I was so scared. Maybe I pushed it away… maybe I chose to forget. Maybe it’s my underactive thyroid, stealing pieces of my life, my memory… gone unless I took pictures or something triggers the memories again.

So it’s no wonder why people who have never lived with someone who has regression or dealt with it personally, would shrug it off and say something like “he’ll almost definitely regress… but regression is better than death”. Which, don’t get me wrong… it is… but regression isn’t something to sneeze at either.

It’s anxiety over not knowing where you are or why you’re here.
It’s being scared because things are new and have changed and your routine, the thing that kept you safe and understanding and knowing of what’s to come so you could finally breath, is gone and you don’t know when it’s coming back.
It’s shaking… trying to figure out what’s going on, and not being able to sleep for days or even weeks because it’s not your room…

It doesn’t look the same.

It doesn’t smell the same…
…sound the same.
It’s not eating…
It’s getting stomach issues because you don’t feel comfortable going to the bathroom in a new place.
It’s losing language because your body and brain can’t focus on speaking when it’s so focused on it’s fight or flight instincts.

It’s crying at night, asking to “go home”.
It’s grinding your teeth and never being able to just be still… because you’re not comfortable in this new place that isn’t your home.

It’s not understanding the new rules or forgetting them… so instead of staying inside with your mom, you find a way out… and not know how to get back or ask for help or even realize what you’re doing is wrong or dangerous… and your neighbors find you, call the cops. Your mom, barely able to breath, crying her eyes out, scared to death and panicking, that she’d find you hit by a car. Looking everywhere for you because you don’t have any “usual spots” or “typical routes” to even start looking in, finally sees you and can bring you back home… collapses on the floor… sobbing… living through another of her worst nightmares.

It’s a Mom, sitting on the floor outside of their child’s room… bawling her eyes out.
Praying her kids will calm down and go to sleep… because she hasn’t slept in days and she’s exhausted.
Hoping that they stop screaming…
That the kid who was here just a couple weeks ago, would come back to her.
Dreading how much work it’ll take to get them back to where they were…
Where her kids listened and didn’t run away from her… They understood, stayed safe… and knew how to behave because of repetition and understanding of expectations.
Where she could breathe… could allow herself to drop her guard for a few minutes throughout a day because she knew they were safe.
Instead of living in constant fear… having heart attacks when she can’t see all three of her kids right away…. Slipping into a panic attack, thinking they got out of the apt again.. And this would be the time CPS would take them away or she would find them at the bottom of the pool, taken or hit by a car.

Regression isn’t just needing to relearn a few words or “two steps forward, one step back”… it’s like a reset button. And you never know exactly what it’s going to reset. It’s anxiety and fear. It’s sleepless nights and crying… lots and lots of crying.
It’s everything and anything that isn’t health or safety getting put on the back burner.

And it’s what we’re dealing with right now…

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Hypervigilance

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not blood in the picture

I’ve wanted to write about this for a while now… but every time I wrote something, I didn’t like it and deleted it.


Although it’s an important topic, I just couldn’t say what I really wanted to say. Words are often lost on me. Until I have a personal experience to help me find the right words, and even then, I’ll have a friend write about the same topic and think YES! Why couldn’t I say it like that!

We often hear those sayings “You can’t pour from an empty cup”, “You need to help yourself before you can help others”, etc… And generally, I agree with those. You don’t really get burned out when you’re taking care of yourself in addition to taking care of others. And working with kids… that would be a good thing!

There have been so many years where I’ve just not been able to take care of myself but still needing to take care of my kids. They come first… and it’s not like I have a choice. I don’t have help, so there is no other option.

But I started using these oils and my overall state of wellbeing has changed. I’m not as stressed out, I’m not as depressed/anxious… sure I still have my moments… but despite our situation not changing, my outlook on it has.

Which makes me WANT to take better care of myself… despite not having help or not being able to get out of the house and away from the kids.

One of those things is eating better. I prefer not to cook when the kids are awake… which means I tend to eat more junk or things I can put together quickly. Like cereal. Which sucks, but it is what it is.

So today, I decided I’d make spaghetti for lunch! It’s pretty quick and better than ANOTHER bowl of cereal.

All the kids were being relatively good.
They were being loud, but that’s nothing new.

So I started making food… Tyler kept coming over to me, asking me to take screen shots of his characters he paused his show on. Justin would be running in the house and then back outside. Jax was making his “I’m yelling because I’m happy” noises. It was a little chaotic, but nothing too bad.

I set up the kids and their lunch while I was finishing mine. We all more or less ate at the same time (which NEVER happens)… And then came the, let’s chill out time after lunch. Usually we turn off the lights and just hang out (usually because my migraines are worse around this time with the kids… they can be REALLY loud… weekends are hard for me and my head). So we were all just hanging out, I was sitting down to go through all of your replies on my posts when Justin started screaming and crying.

Ugh… now what?

“Justin. Come here.”

Crying and crying. Not crying because he’s hurt, but crying because he’s upset over something.

“Juuuuustiiiiin! Come here.”

Crying.

“JUSTIN!!!!”

I know it’s the iPad. It probably needs restarted and I’ll admit, I was being lazy. I was tired and just wanted to sit down for 10 minutes.

He comes out of his room. Rubbing his eyes. He hands me his iPad and it’s sticky!
What in the world???

The screen was sticky and he couldn’t slide his finger across the screen to turn the volume back up. I cleaned it off and handed it back to him. Which is when I realized he was kind of pink. I touched his hands and they were REALLY sticky… so were his legs, arms… what in the world?!?!

I took him outside, rinsed him off with the hose, got him dressed and sent him to the living room. Then headed for his bedroom…

That’s when I found the reason he was sticky.

My jaw dropped.  

It looked like a horror movie.

Only instead of fake blood… it was strawberry syrup.

I’m STILL trying to get it all cleaned up.

What does this have to do with hypervigilance?
If I hadn’t been cooking… I would have been watching the kids closer. I would have noticed one of them taking and carrying the syrup in the room and would have stopped them before they squirted it ALL OVER their bed.

I can never let my guard down.

Never.

Because someone is always getting into something. Someone is always climbing something, trying to open something, crying or screaming about something or wanting something. The second I let my guard down… something breaks, gets destroyed or someone gets hurt. And that’s in a house that I have specifically altered FOR my kids. There really aren’t TOO many things for my kids to get into that they really shouldn’t. As long as I’m staying focused.

We don’t have pictures hanging on the wall, we don’t have nicknacks. We don’t have anything glass in our house except lightbulbs and we can’t keep spares around the house. Tyler likes to drop them on the ground to hear them crash. We don’t even have cups any more. We drink out of soda/water bottles because our kids love water/liquid so much that they will take cups off the counter and pour them on the floor to play in them. I have to hide the knives because Tyler likes metal things and Justin likes to line them up. Chemicals and cleaners have to be up high and out of reach, because just out of sight out of mind doesn’t work here… and if it’s a liquid it’s meant to be played with. Which is why the bathrooms are locked. They’ll turn on and play in the sink, toilet and bathtub.

We used to have to have locks on the pantry doors, fridge, oven, microwave and some of the cabinets. Because no matter how on guard I am constantly… I couldn’t keep them out of everything. And you can only say “We don’t stand on the oven door, because it’ll break. Close the oven, and let’s play with Lego’s” so many times before you might snap.

Sure, eventually things got easier. They even know that they bathroom doors are supposed to be shut, so if someone forgets to close a door, they’ll go over and close it for us. We don’t have to worry about the kids playing in the fridge much anymore either. Because they know they’re not supposed to. Tyler will still occasionally get the eggs out and throw them on the floor… sliding around in the slime when I’m in the bathroom. Or lining up the sliced cheese. Justin will try to stack enough toys, boxes, shoes and trash cans high enough to climb on the counters and get into the gummy bears while I’m giving Jaxson a bath because he managed to get his diaper off… again… and is now covered in fecal matter.

And as insane as these days are… they are getting a little less frequent… or at least they’re smaller messes. Mostly because I’m constantly watching them, constantly on guard to make sure things like that don’t happen. My house is constantly trashed… and that’s with me being able to catch most of the messes in action or prevent them because I can see where they’re going with their ideas.

I’m always tired.
During the week when the older two have school it isn’t so bad.
But weekends, holidays and breaks definitely remind me why I’ve been in “survival mode” for SO long. And I don’t realize that I’m not really in survival mode any more, until I’m reminded what it really looks like… on weekends… holidays and breaks.

Because although things HAVE gotten a little better… I’m still a long way from being able to sit down and not have to worry about what my kids are getting into.

Hypervigilance. An Autism parents state of being. And it’s exhausting.