Keepin clothes on

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Someone asked me, “How did you get the boys to wear some clothes indoors?”

Okay…. so clothes aren’t HUGE at our house… I try to make sure they’re dressed when people come over, or if I plan to take pictures/videos for our page…

But here are a couple ways I’ve gotten my kids to wear clothes…

So I don’t know if you’ve ever spent a summer (or whatever) where you weren’t really wearing a lot of clothes… then when you put more clothes on because you had to go back to school/work/etc… it feels weird… Like when I went from wearing tank tops all day every day while I was pregnant… if I had to put an actual Tshirt on to leave the house, it felt suffocating…

So when our kids go from being half naked all the time to being made to wear clothes – it’s horrible… especially when they don’t understand why they’re feeling like that. First instinct is to rip them back off.

So one of the ways, I helped teach the kids (and kind of in that process with Jax) is by making him wear PJ’s (the full suit ones) all day every day… because eventually his body will adjust and he’ll be able to tolerate wearing clothes like shorts and a shirt, because his body has adjusted.

Which, because it’s been hot, and I haven’t been making him wear his pjs, his body has readjusted and now he wants to be naked constantly. lol

The other way I get my kids to do things, not even always with clothes, but with everything… is I take the one thing they can’t live without and I don’t allow them to have it until they do what I want.

Right now, it’s Tyler’s glasses and playing on my computer… Justin has to eat a banana before getting skittles, and Jax, he has to tell me he wants to take a bath on his AAC before he’s allowed to take one.

There’s crying at first, because there’s confusion and that’s not how it was done just yesterday…. but eventually it’ll click…

The one that’s most similar with your situation is Tyler… so if he takes off his glasses, I take the computer. Which at first resulted in meltdowns.
But I didn’t give in… if he went reaching for the computer, I held out his glasses. Once he put them back on, he got the computer.

So for her, you could give her her favorite thing in the whole world when she’s wearing clothes…. if she strips, take it away… help her put her clothes back on, and then give it back…. at first it’ll be really hard… but if she loves the object enough, she’ll figure it out REALLY quick. 🙂

Even Jax (at 2.5) has figured out he has to ask for things in order to get it…. he still has little tantrums every once and a while… and that’s okay, because it’s age appropriate, and they’re allowed to have their feelings, but they still need to do what you ask.

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“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.

Getting Justin’s Voice

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Kreed’s World had a live video last night on AAC.
If you’re interested in AAC/have a nonverbal or preverbal kid/student, I HIGHLY recommend you watch it here.

She pointed out something that I’ve been TRYING to explain to Justin’s teachers for almost 3 years now…

Babies are mirrored language for 1-1 ½ years before they’re really expected to speak it back.
So why are we having our kids try a communication device/app a few times and say “oh well, he’s not ready” or “it’s just not working for us”?

That’s what happened with Justin.

He’s in second grade.
His very first IEP, I brought up getting him a device. One that its sole purpose was to communicate, because we had tried AAC apps before, but because he had already been conditioned to understand that an ipad/tablet was for movies… he would get REALLY upset if we backed out of it to help him communicate.
We needed one in addition to his movies tablet.

Later that year, I think they said they tried one with him for 3 days at school and he wanted nothing to do with it. “He just pushed all the buttons and walked away.”
Three days.
Could you image if it was like that with babies or toddlers?
“Well we tried English for three days, maybe we should switch to german.”
Lol
Or “Well we tried. Your baby probably can’t talk. Or just doesn’t get it.”

So they told me he wasn’t ready for one, and so his insurance wouldn’t cover it through the school or something like that…
First grade I brought it back up.
Same thing. “He’s just not ready.”

This year I didn’t have to bring it up.
“Last year you had wanted an AAC device, but we feel he’s just not ready, but he’s doing great with his PEC cards”….

Yeah…. Because he has learned over the last few years that when he uses them to ask for something, he gets what he wants. You didn’t just stop after a few days. You kept pushing him to learn and understand and use them.

So since Kindergarten, I’ve been trying to get Justin a device on my own.
We tried to go through his speech therapist, but for some reason, things just never got pushed through.

I saved up money to get our own tablet, and then another one broke and we had to use the new one as a movies tablet.

We finally got to the point we had an extra one, got an AAC app, AACorn.
It’s an AWESOME app… but because you start out structuring sentences, (and Justin’s receptive language isn’t great in addition to not “getting” sentences) he would get frustrated and just hit a bunch of buttons. Or go back over to the PEC cards. I kept trying, but it just didn’t click for him. So I tried with Tyler, but then a tablet broke and we were down one again.

At this point… I was feeling pretty defeated.
I shouldn’t have to struggle this hard to give my son a voice.
Yes, PECS are awesome!!! And they’ve been working great.
But they’re limiting.
Jax likes to chew on them. Lol
They disappear and they don’t actually speak for Justin.
If I’m not looking, I can’t hear him speak.

So when someone “nominated” me/Justin to Erin for the first of a few recipients to start out The Kreed Foundation, I was SO FREAKING excited.

Because although this could take years of practice and learning for Justin to use his voice proficiently, it’s worth it.
Everyone deserves to be heard.
To be understood.
To be able to make their own choices.

And I want him to be able to do that, without my help at all… and starting him out as early as possible made the most sense to me.

And I get that teachers/therapists can’t just hand out devices like candy.
They’re responsible for making sure the T’s are crossed and the I’s are dotted…

But for people (like insurance companies)… who have never had a problem being heard. Or not being able to speak… they don’t see or aren’t able to understand why I’m begging and pleading for a device for my son. Despite someone thinking he’s not ready.

When I sent in his device from The Kreed Foundation, his teacher seemed excited about it, but the email I got from one of the speech therapists:
Last school year we mentioned he didn’t seem ready but she (his SLP) has been introducing him to a device we have this school year and he seems a little more interested. We will not continue with the device we have at the school but will begin to utilize his own device.  If you have any questions please let us know.  Thank you.”

“A little more interested”.
That’s funny…. Because he uses it quite a bit at home already and it’s been about a week or two, tops. Sure he’s really only asking for food and paper right now. But he doesn’t even go to the PEC cards any more. And I’m helping him say hello and goodbye to his therapists when they come over… Helping him understand Yes and No. Helping him say he’s excited about something when it’s obvious that he is. So that some day, he’ll be able to do it on his own.

Of course he doesn’t seem all that interested.
You have to start with the things he loves MOST and show him that using that device… his soon to be voice, he GETS what he wants when he uses it.

Asking him if “this is a dog” yes or no? Probably isn’t going to get him too excited to use it.

But you show him he gets skittles when he asks for them, he’s going to be pretty freaking excited about it.

So, what am I trying to say with all of this?
Teachers, Therapists, Doctors, etc… they’re amazing resources. Often they really do just want to help you and your child succeed. I LOVE them.
But they do. not. and will. not. understand your child better than you do.

Trust your gut.
Fight for what you feel your child needs.

If we had been working with a device since Kindergarten, who knows how much he would understand and be able to say right now instead of only just figuring it out.

Thank you Kreed Foundation. Thank you for allowing us to be a part of Kreed’s legacy and thank you for finally helping Justin have his very own voice.

Dear Trolls

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You don’t know me.

Honestly, that should be enough of an argument, but it never is with you.
Because despite not knowing me, you think you know enough to say whether I’m a good or bad mother.
You make assumptions based off of a small piece of my life…
A snapshot you think you understand.

But here’s the thing troll…

You really don’t need to tell me what a horrible mother I am.
How you would “never do that”.

You don’t need to belittle me.
Beat me down.
Make me feel like I’m not good enough.
Like I’m failing at my job, and life.

You really don’t need to.

Because you see, I’m already telling myself that.
I’m already seeing all of my imperfections.


The times I post online about any “parent fails” that I decided to laugh about instead of cry about…

That’s just how I appear on the outside.
That’s the mask I wear.
Behind the computer, I am crying… on the inside.

Kicking myself for not doing better.
For not being better.

So you really don’t need to call me out.
Pull me down.
Try to hurt me for whatever reason trolls have for doing it.

Because I do it all on my own.

But because of my failures,

Because of my imperfectness…

Because I’m so hard on myself and only wish to be the best possible version of myself FOR my children…

I try harder.
Push myself more.
Make myself get creative.
Constantly looking for new or better ways to do things, to teach things.

Researching and googling and learning.

I’m always pushing myself, well past the point of physical or mental pain and exhaustion for my children.
Because I want them to succeed in life.
I want them to have the best childhood they possibly can have.
Not because of the “stuff” they’ve got.
But because of the adventures they had.
The memories we made.
And I always pray that they remember me smiling.
Happy.

Despite how I feel on the inside.
Like I’m not good enough.
Like I’ll never be good enough.
Like… what’s the point in me even being alive – I’m sure there are others out there who could do better.

So troll, you really don’t need to criticize me.
I do it well enough on my own.


But thankfully troll, you’re not the only voice I hear or see.
You see troll, there are people who are cheering me on.

Who see my imperfections… but see me smiling through the hard parts.
Making light of rough days.
Because they’re going through them too.

Honestly troll… I feel bad for you.

If you really honestly knew me, you’d know I’m the type of person who will always lift you up when you’re having a bad day.
And thankfully those are the type of people I surround myself with.

Because after your comment, that’s exactly what I got.
People who were kind and loving and lifted me up after a bad day.

So good bye troll.
You’ll just be another person on my “Ban/Block” list.

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. ❤

We Don’t Do Socially Acceptable

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We went to the park today.
After we had been there for about 20 minutes, a guy walks over pushing his daughter in a stroller.

“Good Morning” I said.
I hate it when people don’t say anything and you’re supposed to just pretend their not there.
“Good Morning.” he said.
“She’s too cute!”
“Thank you. We’re trying to get rid of her morning naps, so I’m trying to keep her busy.”
“I get that” I laughed.
“How old is he?” He asked.
The way he asked sounded a little funny… I could place it. It wasn’t completely curiosity… it wasn’t the “sweet” awww how adorable is he – kind of question….

I smiled and said, “He turned 2 in May.”
He smiled… but his smile was different.
“How old is she?”
“16 months.”

They walked over to the swing to play.
I normally get the “Wow… he’s really big for his age”… and he didn’t say anything. And that smile… what was that? It wasn’t like mine – it wasn’t a completely mean sneering smile…

It took me a bit to really think about what his facial expressions were trying to say. It’s harder for me to read people when they’re wearing sunglasses.

Then I realized Jax was drinking out of his bottle.
And that drinking out of a bottle after 1 is generally not “socially acceptable”.

It’s funny how you forget or just don’t care about social norms when you’re in your little Autism Bubble house. I never get to leave, let alone interact with other parents and their kids. So I forget sometimes how mean people can be. Or how mean they can be without really being mean.

When Justin and Tyler were this age, I would have noticed that the guy was coming and hid that bottle before he saw it. And if he did see it, I would have explained myself. Telling him about his sensory issues and how making sure he was hydrated was more important than the vessel the liquid comes in.

I would have felt like a bad Mom.
I would have kicked myself. And then tried getting them to use sippy cups AGAIN… frustrating them and myself. Making myself feel even worse.

Because a person who doesn’t know us, or our story judged what we were doing… judged my parenting.

And I realized… I still cared a little… but not like before. Not enough to do ANYTHING about it.
I stood there with my kids, offered him some snacks for his daughter, and watched my kids, they’re happy and playing and not caring about whether or not they were doing anything wrong in front of others.

And I realized just how far I’ve grown in this journey of ours and tilted my chin up a little higher.

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.