‘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

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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.

GizmoPal Update

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It’s been about a month since we started using the #GizmoPal #GPS #KidsWatch and I thought I’d do an update! 🙂

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When we first tried them with the boys, Justin loved his! but Tyler couldn’t stand wearing it. He wouldn’t allow it to be on for more than a minute or two and that was with massive redirection.

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I finally realized how to fix the problem and help him keep the watch on! You can read that here.

But the short version is: I stopped trying to make him wear it inside and made it a routine that when we leave the house, it goes on (since that’s when he’ll be wearing it anyway).

After that light bulb moment, it’s been all down hill since.

He progressively got better and better about keeping it on longer and longer without wanting it off.

We are in the second week of school and both of the boys teachers tell me that they both keep their watches on the whole time they’re at school, with a few exceptions. If they get sweaty from running around outside, they’ll take them off for a little bit but then put it back on once they’re not sweaty any more. 🙂   (I’m the same way)

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And I have tried out the GPS before, but I actually really got to use it yesterday. The bus was later than I was expecting… I needed to get Jaxson up from his nap, but I didn’t want to take a chance that I’d be in the middle of a diaper change as the bus pulled up (it’s happened).

After about 10 minutes standing at the window, getting frustrated… I realized he was wearing his watch! Duh!

Checked with my phone app where he was and saw he was only a minute or two from home. So I waited outside and sure enough a minute or two later and the bus pulls up! 😀

So considering we were able to put the watches on our phone account (we didn’t have to pay all of it up front), and the kids have adjusted well, I give it a 8/10.

With a few things like making the band bigger (not sure it’ll fit Justin next year), and making it also harder to get off could make up for points lost. 😉

If you want to check out the watch online, here’s the link.

First Day Of School

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The boys first day of school is getting closer.

This is going to be the first time in 6-Ish years that I’ve only had one kid to take care of for most of the day (their baby brother).

The first time that I’m going to have a little free time in, I don’t know how long…

I’m not going to be a complete ball of strung out nerves most of the day, trying to take care and manage three very different personalities who all want my attention and never in the same way.

To say I’m excited is an understatement.

But… That also means that for 7+ hours a day, my older kids won’t have their translator by their side… They won’t have Me.

They won’t have the one person who understands them like no one else. Who knows exactly what they want (well at least 80% of the time.. but the rest is guessing and I’ve gotten good at it), and can understand their communication through gestures.

Because my kids are Nonverbal, Autistic. Their receptive and expressive language is practically nonexistent.

They have a language all of their own that I’ve taken years to study and understand, while I’m trying to teach them mine.

So to say that I’m apprehensive about sending my kids to public school, is also an understatement.

I have to trust that when they get upset or freak out, that someone has the patience to treat them with kindness and not just get angry with them.

Because it can be frustrating for them, when they’re trying to communicate a want or need and no one understands. So they might get angry and lash out. They’re not being bad, they’re frustrated.

I have to trust that the teachers and kids there are going to be nice and not hurt them in anyway… Because they can’t come home and tell me “Mommy, someone yelled at me today” or “grabbed my wrist really hard” Or “the kid pushed me down, no one saw… But they saw me push him back and i was the one who got in trouble”.

…they can’t tell their side of the story.

I’m not there to remind those taking care of them that if the boys don’t have a distraction to eat, they just won’t.

To remind them that Justin will wander away and Tyler will bolt if he feels anxious or finds something he NEEDS to see. Sometimes even me yelling for him to come back doesn’t work.

To remind them that they don’t understand how to play with other little kids… But that doesn’t mean they don’t want to.

Or that Ty’s very sensitive and can be upset easily, and getting upset with him because of he’s stressing out, will only make it worse.

I’m very excited to finally have even half a day that’s less chaotic. I’m sure my migraines will be getting better with less noise.

But that doesn’t mean I’m not scared and worried about my nonverbal kids who can’t speak up for themselves.

My “About Me” letters I’m sending in and talking to the teacher can only go so far and only do so much.

People don’t understand just how much trust I’m putting in someone else’s hands.

Teachers, I’m trusting you… With pieces of my heart.