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…

Eye Opener

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I didn’t realize just how hard I’ve worked to get the boys where they are today… the obstacles we’ve face, the countless hours of OT, PT and Speech therapy we’ve done on our own and with therapists to get to where we are today… until I had to start from scratch with Jaxson.

I actually had to REALLY think… what on earth did I start doing with the boys? Because “normal” play for this age is over his head for right now. I had to go back to basics, remember where I started with Justin and Tyler… what games did I make up or toys did I create or do that helped them learn and explore safely?

This whole experience with Jaxson has been a huge eye opener of just how much Justin and Tyler have grown. It’s a little overwhelming… because I know just how much work I’ve got in store with me and Jax.

I’ve still been in kind of denial about Jax… Especially without a formal diagnosis, I didn’t want to be on either side of the fence about him being Autistic. But everyday, I’m being pushed more to one side than the other.

So, instead of trying to get him interested in things that he “should” be interested in at his age, I’m going to start from the beginning… like I did with Justin and Tyler after they regressed and work our way up. I still wanted to hold out hope that he was just a “slow learner”. That him being sick a lot or going through growth spurts (so he needs more sleep) have been slowing him down… but the doctors apt was the real eye opener I needed. The questions she asked about what he COULD do and then the pamphlet of the things to do with your baby at this age… I’ve decided to stop driving myself crazy.

Jax has a form of Autism and that’s okay. We are going to do everything we need to to help him, just like we would if he wasn’t Autistic. We’re just going to do it differently. 🙂
First game “In and Out”. I put all the toys in, and he dumps them out… until he gets to the point where he starts putting them in. Second game will be “Up Up Up Up DOWN”… where I stack the blocks up up up up and he knocks them down. These will help with Small and Gross motor skills, taking turns, action-reaction, sequencing; it teaches him what he should do with the toys, and it also teaches him a few words. 🙂 Those were the boys favorites when they first regressed. 🙂

As of right now, he just wants to chew on them. 😀 lol

We’ll be setting up all his apts to get evaluated this coming week… so this summer should be a busy one! 🙂

Regression and Progress

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Regression.

It’s always a possibility.

I was afraid that with the move… then finding out Ty had to go to a different school. Their routine being messed up. Different bus drivers, AND spring break on top of all of it?

And I was right to be worried…

So far:

The only thing I’ve REALLY noticed about Justin is that he stopped using his button. So I have to ask him if he needs to potty. We’ve had a few accidents and he’s starting to hold it again making himself constipated.

Tyler has become more aggressive. He started hitting again. (He does this because he can’t articulate why he’s upset… he’s not really trying to hurt me… he’s trying to get me to understand. How do I know? I used to do the same thing – or something similar… I could talk, but I couldn’t always convey what I was trying to say and it would eventually get too frustrating and I’d just punch a wall). He’s hurting himself more. He’s started going potty on the floor again… and he’s not eating as much as he was prior to the move.

Jaxson doesn’t really seem to be getting better with the yogurt and soy milk… but we were supposed to do it for a month, so we’re going to keep doing it and pray it works. :/

However… along with some regression that has made life a bit harder. Especially when I feel like I got hit by a truck. Twice. There have been some new things that still show progress!

Justin ate french fries willingly for the first time in a YEAR the other day!! 😀 😀 When we moved a year ago from PA to TX (2,000 miles)… the only thing we could find on the road that he would eat besides cereal, were french fries. So, four days of fries… and apparently it took a year to want them ever again! lol

Tyler is continuing to mimic and script on a daily basis… and although he still has no interest in being potty trained, he is at least taking off his diapers and putting them in the trash (sometimes)… and has now started to try to put his shorts on after he throws them away. Sometimes he remembers he needs a diaper first… sometimes he doesn’t. 😛

Jaxson has mastered crawling and standing up. He’s getting really good at walking with furniture and because he has, he started babbling again. 😀 Mamamamama, Nanananana… no Dadadada yet. Which Daddy is trying to rectify! 🙂

So, although we might go a little batty this Spring Break… and we have a lot more work to do to regain those skills that have regressed, we’re going to be celebrating the progress being made. 🙂