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…

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.

Gender Specific toys make my eye twitch

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The other day, there was a house down the road having a yard sale.
I love yard sales.
Because my kids don’t always like to play with toys, so I like being able to find cheap toys to try out with them. If they don’t work out and the boys don’t like them, we put them in a bag and take them to Goodwill.

So I checked out this house’s yard sale, and it was all “girl” stuff.

But I’ve raised my kids without “gender specific” toys, so it didn’t matter to me.
I grabbed a barbie, a few little ponies, a baby doll, a little book, a hula hoop and this little princess wand and hat thing.
For $3! Couldn’t beat it.

I took them home, laid them all out on the couch and let the boys check them out.
I stuck the princess hat on Tyler and gave him the wand.

I smiled really big and said “How cute is he?!?!” to their Dad.
He kind of scoffed/laughed “That’s not even funny.”

I automatically got REALLY upset and defensive.

It goes to show that if you don’t spend a lot of time with someone, you grow apart and so do your priorities and ideals. Because we’ve had this talk before about gender specific.

“What? Because he’s wearing a hat and holding a wand? Because it’s pink? Because it’s a princess thing?? What’s “WRONG” with it??”

He didn’t say anything.

When are we going to stop limiting our children?
The biggest thing I hear is that BOYS shouldn’t play with GIRL stuff because they need to learn to grow up to be MEN.

Well ya know what… I’m honestly not too impressed with the male population.
(NOT all men… I’ve met some really amazing guys and some pretty crappy chicks – this is not an “all” group…)


But I would rather my boys grow up to be sensitive, understanding, compassionate MEN who have learned how to treat women, how to take care of THEIR children and how to over all not be an @$$hole.

Because there are a lot of “Men” out there who leave their families…. Don’t take care of their kids… leave ALL of the house work *couhh* “womens” *cough* jobs to the women… instead of being in a PARTNERSHIP with their spouse or significant other and only doing the “manly” jobs and roles.

But maybe… if girls were “allowed” to do the “boy” typical stuff… and the boys were “allowed” to do the “girl” typical stuff….
There would be better coping families out there.

That maybe women wouldn’t think they NEEDED a man in their lives and could become successful in their careers instead of ending up in a loveless relationship…

Or men could actually make their own food and do their own laundry, instead of going from living with mom to being with a woman because that’s what they’re supposed to do…. Before they’re really ready to make that commitment.

Maybe we’d have healthier families… that last…. That don’t end in divorce… that don’t end up with kids moving back and forth between their parents… who don’t end up feeling like it’s their fault.

Maybe we’ll have little girls… growing up to be engineers and scientists and men who are stay at home fathers or make up artists or bakers….

Women can still be women and men can still be men…. Without making them only use gender specific toys when they’re kids. Girls can wear blue and boys can wear pink. Girls can play with mud and trucks and boys can play with dolls and easy bake ovens.

That’s not going to magically turn them into the opposite sex.
Ya’ll know that’s not actually what’s happening right?

We’re expanding their imaginations.

Expanding their opportunities…

Expanding their worlds.

But by limiting what they can play with… limiting their choices, we’re telling them that they really can’t be whatever they want to be when they grow up… they can only be what society deems appropriate for their gender.

You can parent however you choose… they’re your children, and it’s your choice.
But me.
MY KIDS.
When I tell them that they can do anything in life.
If they are willing to fight for it… I’m not going to start limiting them to only “men” typical careers/jobs/opportunities.

PS: The boys didn’t even play with any of those toys except the hoola hoop and the baby doll.
But it was THEIR choice.
I didn’t force those toys onto them… but I didn’t also keep them from being able to make the choice to play with them.

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.

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

You’d Cry Too

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I like to try to explain things with bodily functions.
Because often with people/kids on the spectrum… some of the things that they do seem less important to others, when for them it’s a need, not a want.

So!
Imagine you REALLY had to go to the bathroom… you finally get to go, and mid-stream, someone MAKES you stop. Hold it… pull up your pants and come with them to the grocery store. Or come eat lunch. Or it’s time to do dishes.

That would seem like a form of punishment or torture right?
Not only would it make you upset, it would make you feel incredibly uncomfortable.
The whole time you’re supposed to be doing this other activity, in the back of your head, ALL you’re going to be able to think about is going back to the bathroom and finishing your business.
You might even plead with the person who made you stop!

“Please!? I’m almost done. Just a few more minutes. I’ll be quick. I’ll come right back and go with you…”

Now imagine a little kid… one who hasn’t had as much practice with social cues or “appropriateness” or who needs a little more help in areas you seem to do quite well in (after all… adults have had more practice).
Imagine that he’s watching cartoons (Or playing legos, or whatever)… and you need to leave to run an errand or it’s time for dinner, etc.

You tell them that it’s time to go. To stop what they’re doing and come with you.
To some on the spectrum, that can be a REALLY hard thing to do.
Their brain and their body are telling them it’s not time yet. They’re in the middle of something.
They can’t leave yet, they’re not finished.

So you get a little more stern…
“I said let’s go!”

It registers that they’re going to have to leave before they’re finished. So they get angry or upset or start crying…
Maybe they plead with you…
“PLEASE! Just a little bit longer! It’s not over yet! I’m not done!!!”

To you, this may seem like defiance (and hey… I don’t know your kid – maybe it is…), but more than likely it’s because they didn’t have enough time to prepare for what was going to happen. They didn’t have time to finish what they started.

Which is why transitions are a big thing within the Autism community.
Transition songs, transition actions or “warnings”….
I know some people who use timers… some who sing the clean up song while they’re cleaning, then they’re able to use it as a warning. They can start singing it in the background while they’re playing… to let them know what’s to come.  

It’s also one of the reasons routine can be such a big deal.
With routine, they know what’s coming. They know that they have enough time to finish their show, because every time it ends, that’s when we do… whatever.

So, the point I’m trying to make with this is, remember to try to be patient.
Nine times out of Ten, they’re probably not TRYING to give you a hard time… THEY are the ones having a hard time and communicating and expressing that stress or frustration in the only way they know how.

Instead of getting upset, try to find ways to help them through it.
Bedtime, we do the EXACT same thing… every night.
We never leave the house after that bedtime routine should be started.
We never stay out longer than we should… Company isn’t allowed over when we should start that routine (unless I know it’s not going to affect them specifically). Because their calm, and happiness, and understanding is important to me. And I don’t want to cause more stress and strain on them or me.

Sure, it means we might not get to really do a lot of fun things… but until they understand better and can cope better… they might have had fun “after hours”… but the chaos that would happen afterwards from rushing through or NOT having a bedtime routine… it wouldn’t be worth it in the end. (But that’s my kids! It’s just an explain… Not judging those who allow their kids to stay up late to do something fun. lol Maybe they can deal and don’t need that routine like my kids do.)

So really pay attention.
Are there areas with your kids (or grandkids or students) that they’re having excessive behaviors?
Do you think it could be helped by making sure they understand what’s coming next and better preparing them for it? So that their head and bodies aren’t shouting “What are you doing?!?!?! We’re not done!! Don’t leave!!!”

Maybe wait until the credits are rolling to leave… or ask to help them finish their lego masterpiece so that they’ll come do the dishes.

As always, I can’t tell you how to raise your kids… all I can do is notice what’s happening with mine and offer advice. 🙂

Each kid is unique and may need something completely different than the next in order to succeed in life. And that’s totally okay, we just need to figure out what it is, so we can help.