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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‘Wait’

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‘Wait’

Until tonight, I didn’t know if Justin actually understood that word.

There are a lot of words I say that I’m not sure Justin actually understands, or between my gestures/body language and tone that he just assumes.
Or if I’m yelling for him to wait, that he turns to look just to see what I’m yelling about. lol

But tonight, we went for a walk around our block to look at the lights and talk about them on his AAC device.

We came up to a house with a projector.
It was making these little green lights show up on their house, lawn and trees.

I stopped because Justin stopped.
I figured he was just waiting for Tyler and I to catch up.

“Alright Justin. Let’s go?”
I held up his device so he could tell me let’s go.

But instead, he said: ‘Wait.’

I figured it was an accident… I had JUST added that word yesterday and only showed him when to use it a few times during our walk last night.

“Wait?”

He turned away from me and stood looking at the house.
He wasn’t leaving, so we waited.
After 20-30 seconds he picked up his device and said ‘Let’s go.’

And we continued our walk.

The Kreed Foundation is giving me moments like these.
Moments that I get to understand my son a little bit more.
Understand his likes.
Dislikes.
His understanding of words and actions.

Moments I might not have had, if it were left up to the school, for many years to come. When they said he was “ready”.

Moments that may seem so incredibly small.
But are truly huge for me and my son.

#JustinsVoice
#AAC
#Nonverbal
#TobiiDynavoxCompass
#TheKreedFoundation

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.

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

We’ve come a long way

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Tyler started walking around 10 months old. Scratch that. Tyler started running around 10 months old. He never really walked. He would lean forward and run for as long and as fast as he could before he would stumble over his own feet and fall. Get back up, and do it all over again. Eventually he learned balance and learned to WALK rather than just run everywhere.

He was quick too. Much quicker than is stroll along big brother Justin. Justin doesn’t rush to do anything (except whatever he’s being “made to do”, so he can get back to playing outside). Justin strolls along, taking in the view and although he’ll jump up and down with excitement, he prefers a slower pace.

The first time I took them for a walk… I opened the door, got Tyler down the steps and then Justin. By the time I got Justin down the steps, Tyler was half way down our, pretty lengthy driveway! I had to run ahead, grab him, then go back for Justin. Justin just stood there like “What’s going on? Are you coming back? Should I follow you?” lol They are so completely different from each other.

So from the VERY beginning, Tyler was a bolter.
Combine that with his complete lack of understanding of danger, it made for a few close calls. He would run, as fast as he could, down our driveway… there were more times than I care to admit that I could see or hear a car coming. I ran as fast and as hard as I could to get to him in time… but I had that pit in my stomach that one day I wouldn’t make it in time.

It’s not like I didn’t hold his hands… or try to hold onto him. But when we take 2-3 walks a day (not much to do out in the middle of nowhere), there were times he’d pull his hand away from me and BOOK IT. Then having Justin, I couldn’t just leave him… I had to make sure he was safe and not going to fall and get hurt the second I chased off after Tyler.

When we were at the store, I’d think we were getting better and not put him in the cart… and halfway from the parking lot to the store he’d be fine… then that split second, tear his hand out of mine and take off towards traffic. I’ve more than once kicked off sandals to run after him, because I ran faster without them. I stopped wearing sandals when I left the house with him.

Eventually we got him a backpack/leash/harness… I still held his hand… but it was more of a back up. In case he slipped from my grip.
I also aquired cat like reflexes… lol The second I felt him pull away from me I squeezed his hand and picked him up.
Thankfully all those walks really paid off.
Eventually he learned to stick close by. Or if I did allow him to run a bit ahead of us, he learned if I yelled CAR, STOP or COME HERE to either move off the side of the road, stop or he’d come running back to me when he’d get too far ahead.

Even now I can see him running full speed ahead towards a mud puddle and can yell STOP, and he’ll stop dead in his tracks. Because that instinct kicks in from doing it over and over and over and over again. I notice it works more outside than when we’re inside. I think because he doesn’t get away with not listening to me AT ALL outside. lol Inside Mommy get’s lazy sometimes and doesn’t follow through because my sanity is more important that him eating oreos before dinner. 😉 😛

But when I’m not around to advise him what to do, and steer him away from danger… he’d still bolt.

A year and a half ago I found out he opened a window at my brother-in-law’s house and took off. I found him five minutes later down the road wandering around people’s yards. It made me sick to my stomach imagining what could have happened to him if I hadn’t noticed he was quiet… or hadn’t found the window open and took off after him… or went down the wrong street and didn’t find him as quickly as I did.

Well today I was in the kitchen, and their Dad left the garage door open, and the door that leads to the garage open. Apparently Tyler snuck out when no one was looking. But instead of taking off down the street, he knew he had to stay around the house/yard area. I noticed the door and went out to get him. I know it couldn’t have been more than a minute or two… and I don’t know what would have happened if I hadn’t noticed longer than that. I don’t know if he would have taken off down the street or if he would have came and got me to “ask” to go for a walk. Thankfully we haven’t had to find out. But today… he didn’t. Today, all that practice of staying close to the house when Mommy isn’t around or staying close to Mom… or if we want to go somewhere, Mom has to be right there… has paid off. Because today, Tyler didn’t bolt.

#Progress
#NeverStopTrying
#NeverGiveUp