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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Weight advice from a skinny chick

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Something I didn’t talk about when I posted about Jaxson’s evaluation was what the doctors had said about his weight.

Because I knew if I talked about it, I would have gotten upset and I wanted to be able to devote enough time to really write about it as I could.

After they asked about his learning, understanding, words, sensory, they asked about his eating habits.
And I’m sure that they look at him, chubby and look at me, Very Much overweight, and think that it’s obviously just me not having a healthy lifestyle.

“How’s his eating?”
*juggling Jaxson while trying to answer questions*

“It’s bad”

“Oh, he eats a lot?”

“No.” I said it like I had a bad taste in my mouth.

“He doesn’t eat a lot really, but his food preferences are very limited.”
I explained…

She responded,
“Because his height and weight is as high as it can go on the chart” > Looking disapprovingly.

“I know, but he’s also going to be 6’8’’… we don’t really go by charts that were made for people who were probably only going to get up to 6 foot. He’s going to grow differently.”

“Yes, but whether or not he’s going to be 6’8’’, he’s still a very big kid.”

That’s when I got upset.
There are two versions of me when I get upset… well, there’s starting to be a third now that I’ve been learning to help control my emotions and let go of issues…

But really… there are two.
There’s me telling you off in your face (that one was more me in my teenage years).

And there’s me crying.
Because it’s overwhelming… and It’s hard for me to express everything I want to say, and it’s hard to defend myself when I can’t remember everything or when I feel like I’m being personally attacked or someone I love is being attacked.  <–also when I have put myself in someone else’s shoes and feel they’re being attacked. Lol I cry a lot… which is why I guard myself and only allow people around me to be people who won’t hurt me or make me cry. I’m very selective of my friends. Which is why I have so very few.

So right then, I felt like my parenting choices and my child’s weight was being attacked.
Without asking me if I’d been to a GI or Nutritionist (which I have) or if I have gotten tests done (which I have) or WHY his diet is so limited… Or if I’ve tried feeding therapy (which I have) or tried tackling his sensory issues around his food issues (which I have)… she starts telling me that I need to watch his weight because essentially, he’s fat and he shouldn’t be.

So I started crying.
“I’m trying the best I can! He’s constantly moving. I keep him as active as I can and feed him as healthy as his diet allows me to!”

“I’m sorry! It’s just we get parents in here with big kids and they can’t control them, and I don’t want to see that wi…”

“My kids listen to me! I’m very strict and even if they don’t understand why I’m telling them to do something, they do it because they know they need to listen to me!”

“I’m just worried that he’s going to get stuck in this rut and not want to eat anything besides what he’s eating now. It’s a lot harder for them to expand their food preferences the older they get.”

>>
I calmed back down… we talked… and I went back to my nodding and smiling and playing along.
Because I HATE crying.
And I finally got back to the state I was able to keep control of my emotions again.

It just makes me SO angry when people look at me… then look at my kids… and assume we have a very unhealthy lifestyle because of our weight.
Despite having a negative perception of myself, I ALWAYS preach “as long as we’re active, and eating healthy, then our weight shouldn’t matter”.
It shouldn’t matter especially to anyone besides ourselves.

I’ve got medical reasons why I’m as heavy as I am… but that doesn’t mean I don’t walk a mile every day, plus exercise and try to eat as well as I can.

Oh, and I’m on the spectrum with food issues… my eating habits have actually improved since I was a kid so, maybe you shouldn’t generalize about something when everyone on the spectrum and everyone with SPD are different. I’m not a first-time mom let alone a first time Autism mom… I know better.

My heavier set two, are the ones who are constantly moving and walking around. I almost never see Justin sitting.
Tyler, the skinny one, who no one EVER gives me any crap about, is actually the least active and his eating is even worse than the other two. But because he “looks” healthy, no one cares… and I catch all kinds of crap about Justin and Jax because they’re fat.

You can be skinny and unhealthy.
You can be fat but healthy.

“You cannot be healthy and weigh that much.”
That’s funny because my blood sugar, blood pressure, heart rate, cholesterol… hint otherwise.

Do I want to be fat? No.
Do I want my kids to be fat? No.

But I grew up in a “it’s okay, we’ll diet” type of environment.
Diets aren’t great for long term.
It’s also given me a horrible self image.
I hate the way I look.
Even when everything else is going good… I can look at myself and fall back into depression.
“Then why don’t you do something about it?”

I am.
Every day, I’m doing something about it.
Change doesn’t happen overnight.

And believe it or not, having other people tell me I’m fat won’t hurry that process along any. If anything, it makes it harder for me to lose weight because I get upset and sad. Kind of hard to work on yourself when you’re depressed.

And I’m DONE trying to lose weight quickly so I can finally love myself.
Because when I was at my thinnest, I hated myself then too.
I’m trying to love myself despite my weight.

I’ve learned that what you look like shouldn’t matter.
Your health is what matters.
Being active.
Eating as healthy as you can with whatever your issues with food are.
Drinking water…

Slow, steady, continuous progress is what’s going to give me a healthy life.
Not diets or (diet)pills or self loathing.

And you know what else?
I’m going to pound that in my childrens heads…
I’m going to fight and cry through every. freaking. appointment we have that they tell me that my kids are fat and need to lose weight.
Fight for them to understand that they are amazing the way they are… that as long as they’re doing the best they can, that’s all that FREAKING matters.

Because I don’t EVER want them to feel the way I do every time I look at myself in the mirror.

#FuckYourBeautyStandards

What I thought Motherhood would be like…

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I’m a Mom with kids who don’t understand the concept of Mother’s Day, let alone Birthdays, Christmas… or any other holiday. They can’t verbally tell me they love me, if I want a Mother’s Day gift, I have to make it with them myself, and sometimes thats even like pulling teeth.

This wasn’t what I thought it would be like to be a Mother.

I’ve always loved kids and I always knew I wanted to be a mother. When I thought about what kind of mom I would be… I always imagined crafts, baking, nature walks… being a tough but loving mom with kids who would pick me weeds and hand draw a card for me on my birthday or Mother’s Day; and that would be enough. That would fill my heart with such love… I would tuck them into bed, read them stories and sing them songs… they would whisper “good night mom, I love you.” and I would keep the door cracked open to ward off any scary monsters.

That was “the dream” for me. Sure, I wanted to travel the world before I had kids, I had a lot of plans for my future… but when I thought about kids… that’s the image I would have.

My life… isn’t… “quite” like that.

My kids can’t talk, and the one who is finally learning to script/mimic doesn’t say things that help him communicate his wants and needs. Really, they’re still toddlers in bigger kid bodies.

Tyler is starting to take interest in what I’m doing in the kitchen at 5 ½… Justin didn’t start taking an interest in coloring until last year (when he was 5 ½). Nature walks are a rehearsed route that we’ve walked hundreds of times, so that they know exactly what is expected of them and where they need to go for their safety. Since they don’t understand the concept of danger. We can’t stop to talk about the leaves or bugs we find on the way, because that’s not part of the routine (because it can change). Singing songs and reading books is nearly impossible. I still TRY to work it into their lives, but Justin will start screaming bloody murder and Tyler will run away if I pick the wrong song, or they just leave or take the book if I try to read to them.

I have to “lock” their door at night, or they will get out of their room and trash the house or hurt themselves by climbing or playing with things they shouldn’t (like knives).

My kids are 6 ½, 5 ½ and almost one… and they can’t talk to me. I talk to them, explaining what I’m doing and what we’re going to do, hoping that one day what I’m saying sinks in. But no one talks back to me. I’ve even ended up having conversations with myself and then telling myself I need to stop talking or I’ll end up going crazy. lol

There are a LOT of things I didn’t expect to come with Motherhood. Because I never really thought I’d have a special needs child. Don’t get me wrong, we always said that we will take whoever God gives us, and it didn’t matter what they had… but it’s one of those things, you never REALLY think about it unless you’ve gone through it before or someone in your immediate family/life is going through it.

But what I couldn’t even come close to imagining was loving someone this much. Just the thought of losing my kids makes my heart break. Like those few seconds to a minute when one of the boys used to go missing and I couldn’t find them in the store. Or the day Justin swam too far out into the ocean and it seemed forever until I could get to him. They may not be able to tell me they love me… but when I sit next to them, and they look up at me and smile, giggle and lay their head on me, tells me they do. No matter how frustrating my life can get, my kids are worth all of it. I cannot possibly put into words just how much I love my kids. They truly ARE my life!

I knew I would love my kids, and I knew I would try to be the best Mother I could be… but thinking about it and actually doing it… are way two completely different things. I know in my heart that I wouldn’t hesitate to die for my kids. I will fight with every fiber of my being to do what’s right by them. I love them more and more each day… and let me tell you, there’s NOTHING like holding your newborn baby.

They make me want to be a better person FOR them.
To be a better listener;
more patient…
a better communicator…
a better advocate…
a better role model…
a better me and be okay with being me. Because I want them to be okay and happy with being themselves.

The best job I’ve EVER had and could ever possibly have… is being a Mom.