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.

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Dear Mom

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I wanted to let you know that autism isn’t because of bad parenting.

We’ve had a lot of ups and downs in our relationship. We’ve said a lot of mean things to each other.

But using Autism as an insult isn’t cool. I saw those comments on Facebook about my parenting, after we moved 2,000 miles away.

The ones where you said that my kids don’t even have Autism… I’m using it as an excuse for lazy parenting. Or if they do, it’s because I let them watch too much TV or it’s a result of being a bad mother. Along with a few other things you were saying to my now Ex-childhood best friend, who also doesn’t care to understand my kids with Autism.

I believe Autism is genetic. Thanks to the boys diagnosis, taking tests online, and talking to other women on the spectrum, I’ve come to identify as Autistic (and pray someday to get an official DX). Then, after I allowed my resentment towards you to diminish… I started seeing the traits in you. Which may be part of the reason we constantly bumped heads. Neither of us communicates well.

I see those pictures of you with your “other” grandson. The “normal” one… Who talks… Who eats what you eat, who knows what you’re saying, who plays with toys appropriately.

I feel bad for you. That you chose not to get to know and understand your three amazing (biological) grandchildren. They might take longer to “figure out”, but once you do… The love and excitement flowing from them is amazing and contagious.

But the reason I’m here today is to tell you… And hope you understand or try to; is that Autism, is NOT caused by bad parenting. It is NOT caused by watching too much TV, and there was nothing I could have done to prevent it. They are not just bad kids who need more discipline. These are a few things in the Autism Community that we have to fight against constantly… Being judged and looked down upon because our kids are different.

What you may see as bad parenting, isn’t bad… It’s different. Because my boys are different and need a different way of learning. Like so many other people out there, you’re unwelcoming to different. You think, it’s different so there must be something wrong.

My boys don’t learn from reading books, or flash cards… No matter how hard I tried. Once I let go of that “normal” way of teaching, Tyler started talking and Justin started understanding more.

My children are happy, they’re thriving, they’re growing and progressing…

And honestly, with all the research I’m constantly doing, IEP meetings, therapies, etc… If I wanted to be a lazy parent, I wouldn’t have picked Autism to blame it on.

-Your Daughter