‘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

I HATE that phrase…

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Can I just get all of the boys doctors all in one room and everyone can tell me how to raise and feed my kids all at one time?
Being told over and over and over from different people who don’t actually KNOW my kids is getting EXTREMELY overwhelming… and annoying.

*sigh*
So, I blew up on one of the doctors at the Pediatrician’s office we go to today. They have many Doctors/Nurse Practitioners there… and he wasn’t the one we normally see, but was the one whom they set us up with to do his Health and Physical to be cleared for his Sedation Hearing test in two days.

I didn’t mean to.
I didn’t want to.
I tried to hold it in as much as I possibly could… but as soon as he said that phrase… I just couldn’t hold it in any more.

So he walks in.
Says hi… starts typing.
“And what are we seeing you guys for today?”

I explained.
He finished typing, grabbed some gloves and walked over to Jax.
He starts listening to his chest and the first thing he says… before asking me questions about how he eats or how often… he asks if he has been tested for >>whatever<<… I said no, I don’t know what that is.

“It’s >blah blah blah< when they can’t stop eating. They just eat and eat and eat.”

I was like… seriously?!
“He doesn’t eat a lot… or every often”
“Huh”
*keeps examining*
He asks me very vague questions about his eating… I explain he really only snacks.. Mostly crunchy carbs… cereal and veggie straws.

And again… without asking me why… without asking me what I’ve tried… without asking me if he has any actual issues with anything… he starts telling me about this little girl…

Who was “quite big” and only two.
And I’m just staring at him… NOT smiling… because I was pissed.
This was NOT why I was here… and I JUST got to listen to all this crap two weeks ago at his Eval.

He’s going on and on about eating… and all I can think was, Jax has been barely holding it together by this point. He just wants to leave…
Then he started explaining how you start with meat, and once they eat that THEN they get fruit… then they get juice or a cereal…. And you do that all day… and that little girl didn’t eat the whole day… (In my head I’m telling myself… stay calm… stay calm…. Don’t freak out. You’re almost out of here… just keep nodding).

Then he smiled at me… like he was trying to reassure me… and said “They’ll eat when they’re hungry. Don’t worry. He won’t starve!”

That phrase… THAT FREAKING PHRASE!!!!!!!!!!!!!!!!!!!!!!!
Sure… some kids WILL eat if you hold out… they’ve been shown from an early age that they don’t “have” to eat what they don’t want to.

But for kids like mine… who will literally starve before eating something that they just can’t stand… it’s not going to happen. It doesn’t mean I don’t try and offer new foods… but forcing them… doing the whole “you’ll eat when you’re hungry” makes it worse… and makes them have an even worse attitude towards food. And it’s down right dangerous to offer that advice when you don’t know the kid. AT. FREAKING. ALL!!!

I couldn’t… I lasted as long as I could, and I blew up… I cried…

“I’ve tried that! I’ve got three Autistic kids with food aversions and sensory issues and I’ve tried that! It doesn’t work. What I’ve been doing has been working… when I tried that… it made it worse! I’m tired of getting crapped on about his weight every time I go to a doctor’s appointment!!”

Totally shocked… he back peddles “I’m not being harsh… I’m just trying to ask questions and find out… I don’t know anything about you guys… I’m just telling you what’s worked… trying to help.”

I wanted to yell: But you’re NOT asking… you’re TELLING!!!!

“I can’t feed him anything different until I know what’s wrong with him. He’s had issues since birth!! I’m trying my best!”

I explained more… Explained the tests we’ve done. Explained how I think he might have Celiac… that he gets severe diarrhea… that he screams when I give him different foods.

He stopped talking… finished the eval…
Jax and I both calmed down.

Then he starts telling me to not worry… that kids like this get better.
That kids on the spectrum just need positive parenting… and goes on about how to parent a child like him.

I internally rolled my eyes so hard.
FREAKING KIDDING ME!?!?! Is this the visit from hell????
NOW… NOW we’re not only telling me how to feed my child… you’re telling me how to raise him… without asking me how I do it…
UGHHHH

“I’ve got two other, older Autistic kids… I know what I’m doing.”
“You have two other Autistic kids? That’s uncommon.”

(soooooooooo you weren’t actually listening to me when I was upset… when I said I had three Autistic kids… do you think I was just kidding?!)

He finally left…
And I bawled my eyes out…
It’s been an hour and I’m still freaking crying over this crap.

I obsess…
I worry…
I stress…
I FREAK THE CRAP OUT about making sure I’m being the best possible parent for my kids… in all aspects. Teaching them, loving them, caring for them, disciplining them, feeding them, therapy, exercise….

And some guy… who hasn’t seen my son in 2 ½ years (he saw him at 2 weeks old), and for maybe 5 minutes, is giving me parenting advice.

I criticize myself enough on my own… I don’t need anyone else to do it for me.

Everyone is telling me what I need to do.
School tells me to work on this… therapists tell me to work on the areas they’re focused on… doctors tell me to focus on feeding and exercise…

What you all want me to do… and expect of me… is all “advice”…
I’m the parent!!!
I get to FREAKING choose for my children what is most important right now.
Plus…
I’ve got THREE Autistic kids who all have therapists and doctors telling me what they all need me to be focusing on…
There’s only one me… and I’m doing the best I can.

Especially considering I’ve got my own mental and physical health I’m trying to deal with.

*sigh*

I just needed to vent this out or I’d end up crying about it all day.
I planned on coming back to our page soon… but with all these doctors apts where I’m being beaten down… I don’t know when I’ll ever be mentally ready to come back… These migraines are killing me.

Anyway…  
I Love and appreciate you guys. ❤

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.

Eye Opener

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I didn’t realize just how hard I’ve worked to get the boys where they are today… the obstacles we’ve face, the countless hours of OT, PT and Speech therapy we’ve done on our own and with therapists to get to where we are today… until I had to start from scratch with Jaxson.

I actually had to REALLY think… what on earth did I start doing with the boys? Because “normal” play for this age is over his head for right now. I had to go back to basics, remember where I started with Justin and Tyler… what games did I make up or toys did I create or do that helped them learn and explore safely?

This whole experience with Jaxson has been a huge eye opener of just how much Justin and Tyler have grown. It’s a little overwhelming… because I know just how much work I’ve got in store with me and Jax.

I’ve still been in kind of denial about Jax… Especially without a formal diagnosis, I didn’t want to be on either side of the fence about him being Autistic. But everyday, I’m being pushed more to one side than the other.

So, instead of trying to get him interested in things that he “should” be interested in at his age, I’m going to start from the beginning… like I did with Justin and Tyler after they regressed and work our way up. I still wanted to hold out hope that he was just a “slow learner”. That him being sick a lot or going through growth spurts (so he needs more sleep) have been slowing him down… but the doctors apt was the real eye opener I needed. The questions she asked about what he COULD do and then the pamphlet of the things to do with your baby at this age… I’ve decided to stop driving myself crazy.

Jax has a form of Autism and that’s okay. We are going to do everything we need to to help him, just like we would if he wasn’t Autistic. We’re just going to do it differently. 🙂
First game “In and Out”. I put all the toys in, and he dumps them out… until he gets to the point where he starts putting them in. Second game will be “Up Up Up Up DOWN”… where I stack the blocks up up up up and he knocks them down. These will help with Small and Gross motor skills, taking turns, action-reaction, sequencing; it teaches him what he should do with the toys, and it also teaches him a few words. 🙂 Those were the boys favorites when they first regressed. 🙂

As of right now, he just wants to chew on them. 😀 lol

We’ll be setting up all his apts to get evaluated this coming week… so this summer should be a busy one! 🙂

Regression and Progress

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Regression.

It’s always a possibility.

I was afraid that with the move… then finding out Ty had to go to a different school. Their routine being messed up. Different bus drivers, AND spring break on top of all of it?

And I was right to be worried…

So far:

The only thing I’ve REALLY noticed about Justin is that he stopped using his button. So I have to ask him if he needs to potty. We’ve had a few accidents and he’s starting to hold it again making himself constipated.

Tyler has become more aggressive. He started hitting again. (He does this because he can’t articulate why he’s upset… he’s not really trying to hurt me… he’s trying to get me to understand. How do I know? I used to do the same thing – or something similar… I could talk, but I couldn’t always convey what I was trying to say and it would eventually get too frustrating and I’d just punch a wall). He’s hurting himself more. He’s started going potty on the floor again… and he’s not eating as much as he was prior to the move.

Jaxson doesn’t really seem to be getting better with the yogurt and soy milk… but we were supposed to do it for a month, so we’re going to keep doing it and pray it works. :/

However… along with some regression that has made life a bit harder. Especially when I feel like I got hit by a truck. Twice. There have been some new things that still show progress!

Justin ate french fries willingly for the first time in a YEAR the other day!! 😀 😀 When we moved a year ago from PA to TX (2,000 miles)… the only thing we could find on the road that he would eat besides cereal, were french fries. So, four days of fries… and apparently it took a year to want them ever again! lol

Tyler is continuing to mimic and script on a daily basis… and although he still has no interest in being potty trained, he is at least taking off his diapers and putting them in the trash (sometimes)… and has now started to try to put his shorts on after he throws them away. Sometimes he remembers he needs a diaper first… sometimes he doesn’t. 😛

Jaxson has mastered crawling and standing up. He’s getting really good at walking with furniture and because he has, he started babbling again. 😀 Mamamamama, Nanananana… no Dadadada yet. Which Daddy is trying to rectify! 🙂

So, although we might go a little batty this Spring Break… and we have a lot more work to do to regain those skills that have regressed, we’re going to be celebrating the progress being made. 🙂