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…

“Happy” Thanksgiving

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It’s Thanksgiving day… and my kids don’t “get” what Thanksgiving is.
So all the cooking I’m doing, they just think I’m cooking nasty crap they don’t plan on touching – like anything else I cook for myself. Lol

They don’t get that today is different than others.
So Justin had grilled cheese and Tyler had Cheerios.
Jax had his veggies straws while watching Cars in the living room.
Something that also didn’t change was Justin wanting to go to the park.

A few hours after he woke up, he started asking.
“Go to the park. Walk. Shoes.”
“Not right now. Later. Wait.”

Finally, it was later in the day and we had a few hours where we didn’t have anything that needed to be done or made, so we packed up and headed out.

We turned down the street and I realized we shouldn’t have come.
There were a lot of cars parked out front.
I hate going when there are other people.
But Justin was SO excited, I couldn’t just leave.

We got out and Justin started off on his wandering around the back field while Jax and Tyler stayed in the park area.
I noticed right away that people started staring at us.
The girls on the picnic table would whisper and point towards Justin 50 yards away – walking around.

The Mom pushing her kids on the swing was staring at him… then at Tyler carrying around a sippy made for a kid 3-4 years younger than him… and at Jax who was making noises rather than words – who looks more like a 4-5 year old rather than a 2 ½ year old.

I tried to not let it bother me.
Focusing on the boys.
Helping Tyler climb the tree.

No one said hi to us… or Happy Thanksgiving… I didn’t either, but I generally don’t talk to people who look at me like I shouldn’t be there.

After a while, Jaxson took off towards the car. Their Dad went after him while I watched Justin and helped Tyler.
More staring… more whispering.

Jax started crying when he was bringing him back.
We were only there for about 15 minutes… but Jax was ready to go home already.
I had him get Jax in the car while I went to go get Justin.

When I told him we had to go, he started crying and yelling… he was upset.
Rightfully so… he wanted to come all day and end up leaving much sooner than we normally do.

I held his hand and walked him back to the park.
As we got closer he starts crying louder… yelling…

So of course, the 20 or so people there start staring.
I sign that we need to go home… that we were all done.
Partly because I knew he couldn’t hear me with how loud he was yelling… and partly because then maybe the people who wouldn’t turn away, who kept staring would see that he wasn’t typical… that he was different… that he wasn’t spoiled… that he wasn’t being hurt… that they should MIND THEIR OWN FREAKING BUSINESS.

But they didn’t.
I hugged Justin and got him to the car.
As I turned around to walk to my side… I saw everyone staring.
So I waved with “Hi assholes – mind your business” face and got in the car.

Ya know… our life, is normal to me… to us.
What we do, how we live… how we go about our day.
We laugh, love, learn, and in general are happy people living our life…
Especially because I’m a stay at home mom who never gets out of the house…
I’m in our own little awesome Autism Bubble where everyone who comes here knows and gets us… and if they don’t, they do eventually.

If you criticize here, you get kicked out.

It isn’t until I’m around “Typical” people… who prefer to gawk at someone upset or different, that I even remember our life is different than others.

“Happy” Thanksgiving.

Drawn to water

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I remember it like it was yesterday.
Just thinking about it makes my heart pound in my chest.

We were living in Pennsylvania at the time.
Down the hill from my Nana.
She has an above ground pool that we would walk to in the afternoons and swim in.
The boys loved it.
They’re like little fish. They would swim for hours and hours.

But the boys can find water without even knowing it’s there.
Baths, sinks, toilets, cups, creeks, puddles… we moved to Texas and Justin started wandering. So instead of stopping him, I followed him to see where he’d take me. He found the beach. He didn’t know how to get there from where we were. We hadn’t ever gone that way. But he found it!
If there’s water, they’ll find it.

When Tyler was about 1 ½, we lived in a trailer and didn’t have central air… so after it had gotten REALLY hot and Tyler couldn’t sleep, I put an AC unit in his window.
His window was about 6 feet from the ground.
So their Dad put it in from the outside while I was inside hooking it up.

I’m sitting there… looking at it.
My kids are little houdinis. They can get out of just about anything.
So I’m looking at it, trying to see if there’s a way he could get out of the house while it’s in the window.
I shook it.
Pushed on it.
Pulled on it…
It was a little rickety… but it seemed like it would hold.
It’s getting close to bedtime.
Still not totally convinced that it was Tyler proof… I figured I’d find a way to make it more sturdy tomorrow.
At least tonight he’ll be able to sleep.

Once his room cooled off, I laid him down and it was the first time in a long time he actually slept through the night.
So good, that he slept in.
I woke up to Justin giggling in his room.
I got up.
Got Justin up and taken care of and put him his highchair with a drink then headed to Tyler’s room.

The AC was on the floor and out of the window.
Kicking myself I thought -Ugh… lovely. You should have tried harder to fix it.

I looked around the room, “Tyler? Ohhhhh Tyyyylerrrr?”
I opened his closet door. “I found y—”
He wasn’t there.
I looked around the room.
“Tyler?”
My heart started beating faster.
“Tyler??” My voice growing louder. Picking up anything he could fit under.

I looked out of the window. There were toys on the ground. But I didn’t see him any where.
I ran out of his room.
“Tyler!”
Running through the house.
“TYLER!!”
I ran outside…. Looking around…  
We’re surrounded by woods…. And because we’re in the middle of nowhere, people drive really fast on our back country road.
All I kept imagining was him dead on the road.

“TYLER!!!!!!!” I screamed.
Nothing. I don’t see him.
I ran inside.

“TOM! Get up! Watch Justin. I can’t find Tyler!”
Without waiting for him to even respond, I ran back outside.
Down our hill and on the road.
“TYLER!!!!!!!”
Nothing.
I don’t see him.
I ran back up our driveway and started running to my Nana’s house.
My heart in my throat.
I’m biting back from crying.
I can’t see if I start crying.
Just as I get to the top of the hill, I see Tyler.
Smiling and running towards me.

Relief flooded over me.
I fell to my knees when I reached him and hugged him so tight.
He thought it was funny and started giggling.
I cried.
Hard.
I carried him back down to our place.
Put him in the highchair and made the boys breakfast.

Kicking myself. Over and over and over in my head.

It wasn’t until later that day that I took the boys swimming that I saw his favorite (never let it out of his sight) blanket at the bottom of the pool.

That’s when I realized he was on the pool deck that morning.
That he threw his blanket in… and by some miracle, he didn’t jump in after it, and decided to turn around and run to me calling him instead.
He couldn’t be away from that blanket long enough for it to be in the washer and dryer….
But he came to me.
He could have died.
Because although I was teaching him how to swim… at 1 ½, he still couldn’t swim without floaties.

Before I even knew he was Autistic… I knew we had to be careful with them around water.
I fixed his window.

Often, kids on the spectrum don’t understand the concept of danger.
They’ll walk into traffic or bolt from a caregiver.
Wander far from home.
Or get into water too deep… without knowing how to swim.
If you see a kid doing something you’d expect them to know not to do, always check, especially if there’s not an adult around. No matter how old you think they are (people think Justin -7-looks 12)… make sure they understand what they’re doing and that they’re not going to get themselves hurt.

I’ve had a couple people see one of my kids running away from me.
Some saw me chasing them, some didn’t… but they were closer to them than I was, so they cautiously got in front of them to slow them down. Most of them didn’t touch the boys, they just helped me catch up. (I thanked them profusely). You never know… you might help save a life. Or at least a heart attack. ❤

I used to pee my pants…

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Talk about a headline right? Lol
I’ve been thinking about this subject for about a month or so now.
But I don’t always have the time to really sit down and write out how I feel about something, and then sometimes it takes me a while of obsessing over it before I’ve finally found my voice.

(Plus, who in their right mind would tell a bunch of people that they used to pee their pants. lol)

When I was about Justin and Tyler’s age, I think a year or two older… I was still having accidents.

I remember going camping with a friend (I think I was like 5 or 6?), and while I was pushing her on the swing, I realized I peed myself.
I don’t remember anything before hand.
I don’t remember needing to go.
All I knew was that I was having a lot of fun and then… it just happened.
I remember my friend looking at me like there was something wrong with me.
I remember her Mom rushing me to their area to get me changed.
I remember feeling like an outcast.

Then when I was about 7-8? Maybe? I remember my Mom got us food at a fast food place, then taking us to the park to each and play afterward.
We were all (I think there were 2-4 kids? And her) sitting at a picnic table…. We were laughing and having a great time… And then I realized I wet myself. I don’t remember feeling like I needed to go… I remember being old enough to think about spilling my drink on myself so it looked like I didn’t pee my pants…
I remember being picked on about it.

I remember moments like these as a kid… and I didn’t understand why I did it.

Why I had issues with accidents.

Eventually the anxiety of being made fun of or looked at like I was some weird… gross person, helped me be more conscious of my body… but it also made me stop drinking as much.
I could go almost all day without drinking anything because then there was a less likely chance of needing to go to the bathroom.
And I wasn’t particularly fond of going to public restrooms.

But it wasn’t until I realized I was on the spectrum, doing a lot of soul-searching, trying to better understand myself and looking at the way or why I do things to either help myself or to help (and better understand) my kids, that I realized what was happening.

Because I still do it.
I don’t pee my pants… but I almost pee my pants… a lot.
For some reason, my body doesn’t tell my brain that I have to pee when I’m busy.
It’s like it’s too busy focusing on what we’re doing, that while my bladder is saying “Uhhh dude…. We’re uh… we’re fillin’ up here man…”
My brain is like “Okay, we need to clean this room, and oh look there’s some stuff over there and HEY! What if we did this? And oh hey, don’t forget about this and that and OH OH OH!” lol

But because I’ve had to deal with this for so long… it isn’t until I’ve calmed my thoughts that I realize I either A: hadn’t drank anything for hours (because I’m subconsciously not drinking anything) or B: am crossing my legs and doing the “I’m going to pee myself dance”… then I run to the bathroom and barely make it.

One of my other goals is to be a healthier me – so drinking more water is a goal… which means more potty breaks.

I’m not going to lie… that’s been throwing me off.

I’m not used to needing to go so often.

And there have been a few times that I’m running around trying to clean and take care of the kids that I suddenly realize, if I don’t get to the bathroom RIGHT NOW, I’m not going to make it.

So, while my kids are still not potty trained, looking back at myself and trying to understand myself, may help me better understand my kids later.

Like even if they say they don’t have to potty, they might need to.
Because you could have TOTALLY asked me if I needed to go, and I would have said no.
I’m fine.

Making sure to take them to sit on the potty often… so they have plenty of chances to go.
Which also helps them get into the routine that they’ll follow over with as an adult.
In case their brains have a hard time understanding the need to go.
And making sure they stay hydrated…

I know this is kind of a weird subject to talk about myself … but if there are others out there with kids like me, who just DONT GET WHATS GOING ON?!?!! Lol
Maybe this will help.
Because I highly doubt my Mom knew why I was having accidents at the age I was at.

So if this helped you, pass it along, and maybe it’ll help someone else too.

Don’t Pity Me

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Eye contact is not really a requirement in our house. At least not constantly, or even while I’m talking to them.
 
I do request it at times… usually I ask for it as a sign of acknowledgement or a show of love.
 
Usually the way I request it (or teach it to the boys), is the way I show it. If I tell the boys I love them or give them a kiss, I pick up their face to look at me first, smile and then give kisses or say “I love you”.
 
Or if the boys want something from me, if I’m busy I don’t look at them… (and I try not to make them wait for more than 30 seconds to a minute because then they just think I’m ignoring them and start pulling on me lol) then look at them in acknowledgement that I see their needs and that I’ll help them or get them what they’re asking for (Jax isn’t quite there yet, he just starts pulling lol)
 
It’s cute because Jax, who is my least eye contact giver will turn my face to look at him. Like “mom! pay attention to me!”
 
So with Jax, if we’re playing a finger song or an activity, I make sure that I stop singing or playing until he’s looking at me again.
 
If the older boys want something, they have to ask for it with PECs or with the AAC, then they look at me, it’s like them saying “please” or if I give it to them, they look at me after as a “thank you”.
 
I love this “language” we’ve created with each other… out of mutual respect and understanding (that and a LOT of process of elimination). Don’t get me wrong, I’m only human and don’t handle every situation well, and they’re still kids and don’t always listen to me.
 
But Justin was busy running around, doing his own thing… very serious… I stopped him, put his face in my hands and had him look at me. He’s got his serious face on… I smile huge and he can’t help but give me a huge smile too. Then I give him a kiss and he knows he’s done, so he can go off running again, but thsi time giggling and smiling.
 
I don’t know what my life would be like if I had “typical” kids… and as hard as our lives are sometimes with the lack of verbal communication or understanding… the GI issues, the aggression, regression, learning delays, whatever… as hard as it is for all of us some days… I have admit, sometimes I wonder if I would have this type of relationship, this closeness, this bond with them, if they didn’t rely on me so much. If they didn’t look to me as their interpreter (to help them understand others and for others to understand them)… Because we really do speak a different language than the rest of the world. One really, only we truly understand (most of the time lol).
 
I think about how many times people have given me the “pity” eyes because I have three non-verbal, Autistic boys… but sometimes, I think I’m the lucky one. My boys are loving, kind, friends with everyone, silly, goofy… don’t have a malicious bone in their body… they’re not prideful… they’re not greedy or envious… they don’t hurt others (intentionally) or make fun of others…
 
They’re generally happy and content.
They’re a little crazy, and a lot of work sometimes… life can be frustrating and difficult… but I mean, considering… I have been insanely blessed to have the children that I have. 🙂
 
#Grateful
#Autism
#ProudAutismMom
#DontPityMe

Finding a “Babysitter” for my Autistic kids.

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I used to babysit when I was younger. I was great with kids. I was responsible. I knew First Aid and CPR (thanks to having an Aunt who was a nurse and working in a daycare). I’d actually play with the kids and I’d even do dishes or tidy up after they went to sleep while I waited for their parents to get home. I even had a kid here or there that I needed to know sign language for, and didn’t… so I would brush up on some of the essentials so I could better communicate. I didn’t have a “rate”… mostly because it was a side job and I REALLY feel weird (even now) disscussing money.

That’s generally what I looked for in a sitter back before I realized the kids were Autistic. Thankfully we had some great teens in our church we could ask who worked with me in the nursery, so I already knew we could trust them and saw them first hand with my kids.

Now… it’s much… much harder to find a sitter to watch my kids. I’ve even had to leave lists and “instructions” for family. They’d make fun of me… but it’s always funny to see how soon after I leave that they start texting me questions or tell me afterwards “I don’t know how you do it”.

Not only do I look for the qualities I listed above… I’d also look for people who at least understand or have at least heard of Autism and at the least are open minded and take instruction well. Someone who won’t just hang out on the couch until I get back.
Who aren’t squeamish about changing a diaper of a 6 and 7 year old. Who are patient and understanding… who won’t yell at my kids for probably doing something they’re either allowed to do that other kids wouldn’t be or for something they don’t understand they’re doing wrong.

But… not only is finding a PERSON with those qualities hard… I also have to make a list of the foods each kid likes and can eat. Each of them are very different and have food aversions… Jax is lactose intolerant and can’t eat certain things.

Each kid has things that will make them scream bloody murder and cry if it happens or the movie is put on.

Justin has Type 1 diabetes… so if I’ll be gone around the time he needs his blood sugar checked or given his insulin, I have to explain that.

THEN… I also have to take time before I leave to explain everything, show them where everything is, help the kids adjust to them…

Not to mention explaining the PEC cards or some of the signs we use with the kids or what certain things they do mean… like if Justin hands you a tablet, he’s asking for help, where if Tyler hands you one, he’s asking for a screenshot of whatever is paused. Or how Jax will put ANYTHING in his mouth…

And lastly… do you think any of this will come cheap? lol To find someone with all those abilities and then the added time to explain everything on top of the time that I’m going to be gone? No. It’s not. lol

It’s easier to just not go anywhere or TRY to get everything done while the older two are in school and it’s just me and Jax.

Or I used to wait until all the kids were asleep and go out. So the sitter didn’t have to do anything but keep an ear out for someone waking up. But even then… I couldn’t stay out long because sleep is pretty important to me at this point in my life. lol

So… you see why when someone says flippantly “Why don’t you just get a sitter”… my eye may twitch a bit. 😉

“Sensory Sunburn”

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My good friend from Quirks and Chaos was asking me about pain and sensitivity when you have sensory issues.

(I love when people ask me questions because I think of things to say that I normally wouldn’t just come up with off the top of my head.) So props to her for helping me come up with this. Lol

I think the reason things can seem a lot more painful or even less painful to some people is what their skin (or whatever) is over or under sensitive to.

If the outer layer of our skin is super sensitive, we’re going to be able to feel things on it a lot more than other people would who don’t have over sensitive skin.

It goes back to being sensory seeking or sensory avoiding. If our skin is super sensitive or our nerves are over active then we’re not going to either want something touching us or we’re going to need something touching us (like weighted objects).

I think the best way to look at it is like you have sunburn. When your skin is really badly burned, you don’t want anything touching your skin. Everything that touches your skin, even the wind blowing, you can feel it on the surface of your skin. Your skin is over sensitive.

So when our children (or us as adults) freak out because the seams in their socks are obvious or the tag on the back of their shirt is bothering them, the best way to think of it is like they have a sunburn.

If they had a sunburn you would be more accepting and willing to forgive them for being over sensitive to the fact that those things are bothering them. Because it’s something you understand and can relate to. But just because you can’t see that metaphorical sunburn, doesn’t mean that it’s not there.

I think that goes towards pain in general.

Some pain I can deal with and some I can’t… Just like some noises I can and some I can’t.

Also, the anticipation of pain is worse for me at times than the actual pain. (Anxiety).