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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If It Wasn’t For My Nana

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We’ve had a LOT of ups and downs and I’m not too ashamed to admit, we’ve had a lot more downs than ups. It doesn’t help that I HATE asking for help. It just really really makes me uncomfortable. Especially with money.

With my Nana, I never had to ask. She ALWAYS offered. I tried to turn her down a lot, but she never let me. She helped us out a lot. So, we tried to help out when we could to try to make up for it… Fixing a lawn mower here, helping with her truck there… Someday I hope to pay her back for all that she had done for us.

But one of the biggest things she ever did for us was getting the kids a Kindle.

“You know I saw one of those Kindles on TV! Do you think one of those would help the boys??”

“I don’t know Nana, they wouldn’t know how to work one if you did… and I don’t want you to spend the extra money if they don’t end up liking it.”

“Well, if they don’t like it, you guys could use it!”

“Yeah…. but….”

“We’ll call it an early Christmas present.”

She always did that… said she wouldn’t get us things for Christmas or a Birthday since she was getting us something else right now. But she did anyway.

I also had reservations, because I didn’t want to be “That” parent. The one who got their kids things that they didn’t really need, had zombies that didn’t actually do anything but be on devices, or have the 6 year old with a cell phone… they should be outside playing, not watching TV and playing video games.

Only……. my kids didn’t know how to “play” outside. Our version of “playing” outside…. was taking walks. Once the walk was over though, it was time to go inside. There was no “we took our walk, now lets play in the mud or with trucks”.

The boys loved their movies, especially after they regressed. I think it has something to do with the fact that they are predictable. They could watch the same movie over and over and over, and they were happy with that because they KNEW what was going to happen. For someone who can’t understand what anyone is saying, never knows what’s going on… something predictable for them is comforting and calming.

Tyler ended up loving the games and apps and they both loved that their movies could go to their rooms or while they’re climbing on the counters. lol It was a huge blessing. We still restricted their time on them. We were already getting a lot of grief about them watching TV while they ate or had it on as background noise (therapists thought that it would hinder their speech). Eventually Nana got us another one… so both the boys could have their own (they fought like CRAZY over the first one).

Then I got an iPad mini for myself when we finally had the money to do things like that… which, of course, Tyler fell in love with, so eventually we got a shock proof case and it ended up being the kids tablet.

After all the devices and all the tablets we’ve tried out there, our favorite is the iPad. The game types, the apps, iTunes for their movies ( you can go to chapters, see a picture of the beginning of that chapter and select it), is actually how Justin learned to control the device on his own (he couldn’t figure it out on the kindle and would get extremely upset).

NOW we’re using the First Nouns App with both of them on the iPad! Tyler can look at a word and recognise that it means the correct corresponding picture! Justin, for the first time ever, is using the app to match pictures! He NEVER played with the games/apps on ANY of the devices.

For a long, long, long time… I thought that my kids might not ever talk… that I might not ever hear their voices (that weren’t just screams and babbling). But after a year of Tyler using the iPad to watch his favorite (educational) TV shows more often that he had before, and then starting to watch clips on youtube (of the ABC’s, Shapes, colors, numbers), he can say and is now recognizing more words  than I can even count!!!

 He’s still non-verbal but I’d consider him more “preverbal” now than completely non-verbal.

Neither of them can tell me what they want, they still can’t understand me if I ask them a question, when they’re in pain they can’t tell me why or what hurts… and I still have never heard them tell me “I Love you”.

But because of these devices and these apps… I have hope for my kids that they will be able to live to their full potential.

I’m more than sure we would have EVENTUALLY gotten devices to help with the kids… but there would have been so many more grocery trips, outings, the 2,000 mile drive from PA to Texas… so many things that would have been a lot harder had we not had them. They probably wouldn’t be as far advanced as they are now if they hadn’t had them when they did. 🙂


And all of that has happened because of my Nana.