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.

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Rookie Mistake

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I just walked half a mile back from the park with Tyler kicking and screaming over my shoulder and pulling Justin who was pulling back and crying… in this weather (96℉).

I’m in more pain… And physically/emotionally exhausted… And all because of arrogance and Autism. I forget on occasion, that I do not have normal kids.

Berate me. Call me names. Tell me how horrible I am to say that about my kids. But if my kids didn’t have Autism… This wouldn’t have happened. At least not to this severity and at this age. Now… Before you start harassing me, finish reading please.

So… Let’s back up a bit.
I just laid Jax down for a nap and decided to take the kids for a walk. I wanted to start getting Tyler used to wearing his GizmoPal watch. I really don’t want him to be upset wearing it by the time he goes to school in a few weeks. He’ll have enough to get used to by then.

So I got everyone ready, I put on Tyler’s watch and we started walking. It worked perfectly!!! He tugged on it a few times, but I took his hand and he left it alone. He was focused on our walk.

We walk around our block twice.. We got to our first turn and Justin started getting upset. Feeling like I just won the lottery, I decided to go against my better judgement and follow him and see where he wanted to go so badly. Instead of the normal route. (Arrogance)

We made a few turns and ended up in front of a park. I knew I was screwed right then and there. I tried a few times to just keep walking… To go back home, they both wanted to go so badly… But ugh… It had been 20 minutes already, it’s hot… And it’ll be another 20 minutes home.

Finally I gave in… Thinking we’ll leave after a bit. Maybe once they play for a little, it’ll be easier to get them home.

That’s the lie I tell myself… Praying it actually turns out that way.

It never does.

There were kids playing basketball, but other than that, we were alone to play as we wished. They found the slides and the kids had a blast! We had been there for 30 minutes… Jax was still sleeping, but it was so hot and I was getting thirsty, so I knew they should be too.

I started prepping them.
“All done?”
“Let’s go?”

They look at me like I’m crazy and keep playing…. I’m looking around… I realized the house is actually only a minute from where we are… But the gate is locked from the inside. -Figures.

A few minutes go by, and I tell them this time.
“All done. Let’s go.”

They start whining… Tyler throws himself to the ground. _lovely_

“Come on. Let’s go. All done.”

Justin’s getting more upset, won’t come down. Tyler throws himself at my feet and screams. Normally they get upset, but they listen to me.

Now the teens playing basketball are looking at us. Great.

I take their hands, “Come on. Let’s go. All done.” And they pull and tug and scream. There’s no way they are both going to walk home. Justin will throw a fit, but will at least walk if I pull him along.

So I pick Tyler up and throw him over my shoulder, grab Justin’s hand and start the half mile back to the house.

Tyler is kicking, screaming… Crying… Pushing off my back trying to get down. Hoping he’s trying to tell me he’d rather walk, I put him down, only to have him throw himself on the concrete. I pick him up again, but he starts thrashing around before I get him over my shoulder and I pull a muscle in my leg… We’ve barely made it out of the park. I grab Justin and I push forward.

A minute later a car actually stops just ahead of us with a woman staring back at me… Apparently I don’t look like someone trying to steal kids… Then drives away. In my head I scream “No I’m good thanks!” I bite my lip and push through… Pulling Justin, carrying Tyler.

It’s hot… Like sitting in a hot car, on a hot day with the hot air on full blast with the windows up, hot.

My shoulders are burning with pain from my fibromyalgia… It feels like someone is squeezing- digging in their finger nails as hard as they can into the muscles of my shoulders.

Tyler continues screaming and kicking, Justin is more crying because of Tyler than being upset. My leg is killing me by the time we’re about half way home. I try to set Ty down again to see if he’ll walk now. I’m barely able to catch my breath. He falls, kicking and crying. Neighbors are watching.

I take a deep breath, pick him up, grab Justin and keep walking.

I wanted to just stop… To cry. To give up. It seemed to take FOREVER to get back home. So much longer than it took to get there.

I just keep yelling at myself in my head.

“Stupid! You knew better! What did you think was going to happen? Always follow a routine. Even if they don’t like it. But I just wanted him to be happy…. I didn’t want to hear him scream the whole way home…. Well he’s screaming now ya dumb a**”

At this point, I couldn’t even be sure I was going the right way. I could be lost and might have to walk even farther to get home.

Almost in tears, i finally saw their dads car in the driveway and started running. All I could think was “Praise God I didn’t get lost, and we made it.”

I dumped the kids in the living room. Got their drinks, and turned on a movie… I grabbed a fan for me, a water and stripped down. I looked in the living room and Tyler is doing the same thing. Lol

There are days that being Autistic has no real effect on our lives. Mostly because we’ve made it easy for us to be ourselves… For them to live and play Happily and safely.

Then there are days where we get smacked upside the head with a reminder… To remember to not take the little things for granted. Like being able to take my little cousin to the park and it not end up with everyone screaming and crying… But not my kids.

And yes, I understand things like that happen with kids. “All kids do that.” But not almost 6 and 7 year olds. Toddlers… Little kids… Not kids their age.

And Yes, I am thankful I even was able to have kids, yes I’m thankful they can even walk to the park… I don’t need people to try to make me feel bad for complaining… I need people to just understand. For people to not stop in the middle of the road because I have a kid that looks like he’s 8 over my shoulder. I’m doing the best I can and you’re just making me never want to leave the house again.

Ironically… I would have been that woman, only I would have asked if the mom wanted a ride. And I HAVE done things like that before.

Me and my kids are not perfect, we’re not better, we’re not less. But there ARE things about our Autism that makes life harder.

Anyone who disagrees with that… Can keep scrolling.

On a side note… The walk DID work with Tyler being used to the GizmoPal watch. I think next time I’ll have to only take Tyler. He’s better with the route we take that doesn’t go by the park. I ruined walks for Justin for now. :/

… They really did love the park. Maybe I’ll leave the gate open, take the kids in the morning when it’s not so hot and actually bring a diaper bag. At least if I have to carry them home, it won’t be nearly as bad.

Light Bulb Moment

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I’ve been going about this #GizmoPal GPS watch completely wrong with Tyler. Which I know is actually kind of surprising, because in general that’s a good way to get any child used to wearing something (and it’s working for Justin). A little bit each day until they work up to the point where they’re comfortable wearing it.

And at first I was a little ashamed that I hadn’t thought of it sooner, however I hadn’t actually had to think about it for at least four to five years. So, I’m giving myself a little bit of leeway. 😉

I need to teach him to wear the watch the way that I taught him that he needs to wear shoes!! I keep putting this watch on him while he’s still in the house. He’s never going to wear this watch in the house!! He’s going to wear this watch when he leaves the house.

So the way that I taught him to wear his shoes is that he couldn’t leave the house until he was wearing them. I would even have everyone stand outside waiting for Tyler, and he would be just inside the door screaming bloody murder. But after a few minutes he would comply and allow me to put on his shoes and then he could leave. He usually took them off by the time we were all in the truck, but still he knew that he had to put the shoes on in order to get out of the house. And he really only reacted that way about twice. We still had to struggle to get him to wear his shoes or to keep them on, but we didn’t have that much of a reaction each time we needed to leave.

So as much as I hate the hot weather in this ridiculously hot and humid area of the United States. I’m going to start taking walks with the boys (hopefully) everyday to teach him that he cannot leave the house unless he is wearing his watch. Just like we did with the shoes. And he will have to wear the watch the entire time we’re outside (we walk around the block twice and takes about half an hour). It’s going to be a huge pain in the butt… But I’m really really hoping that it’ll click a lot sooner and a lot easier because he’s older and he understands more than he did when he first regressed about 4-5 years ago. Plus, they love taking walks. 🙂

So wish me luck! I’m going to try it for the first time today. 🙂 I’m sure I’ll have pictures and more to report later. But assuming this works the way that it did with his shoes, it’ll work better than the way that I’m doing it now.

If you think about it he’s a very logical little kid. He doesn’t wear shoes or clothes inside but he has to wear them outside. And that’s really the only time he ever keeps them on too. Lol so… I have high hopes! 🙂

And Justin, well he loves it. Lol So, nothing new to report there. 😉

#Autism
#Day3
#GPSWatch
#Wandering

#GizmoPal Review so far…

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So, it comes with its own phone number, watch (obviously), an instruction book, charger and three little stickers to customize (you can buy more – but sold separately).

You have to download the smartphone app before you can set up the watch (it’s free). The setup is actually really easy! It only took a few minutes.

So far it’s been really easy to use, but right now we’re focusing on getting the boys used to wearing it in the next three weeks before school starts.

With Justin it was really easy. I put it on him and he wore it for 2 hours without even trying to take it off. He actually seemed to really enjoy having it on.

I will warn parents have kids with chubby wrist. It just barely it’s Justin’s! 🙂

Tyler on the other hand didn’t do so well. It lasted for about a minute. But I already knew that this was going to happen which is why I’m taking 3 weeks to get him ready for wearing it full time at school. He didn’t freak out as much as I thought he would. I’m trying to use I happy tone, a higher pitched voice and praise/tickle him while he was wearing it so that he understands that it’s a positive thing to wear it and not a negative thing. Also trying to distract him from tugging on it, so he’ll get used to the feel of it and hopefully won’t bother him for too much longer.

As soon as he actually requested me to take it off, I took it off. Because I would rather him ask me for help to take it off rather than him trying to take it off himself.

I’m not too sure if Justin would be able to figure out how to take it off, Tyler on the other hand, I have no doubt in my mind that he would be able to figure out how to take it off. It might take him a while, but he would eventually figure it out if he really wanted to. Which is why I’m trying to make sure that he understands that Mommy is the only one who takes it off.

If you are just pulling on it, it is actually really strong and it won’t just snap off. It takes fine motor skills in order to pull and tug the pieces apart in the right directions in order to actually get it off.

But when Tyler has his mind set to something… Lol

I’ll make a video to show you so you can get an idea. I’ll also be posting a video of Justin’s first reaction to the watch and Tyler’s first reaction to the watch later today on my page facebook.com/mycrazylittlepeople 🙂

Type 1 Diabetes and Autism

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Updated:
It has been 3 years since Justin was diagnosed with Type 1 Diabetes.
He will have it for the rest of his life… there is no cure.
There’s nothing we could have done to prevent it, and it has nothing to do with his diet.

The few weeks leading up to his diagnosis was really confusing and kind of scary. We just thought he was sick. After diaper rashes that kept coming back that I couldn’t get to go away on my own, (plus weight-loss), we took him to the ER one weekend.

I got the medicine for the rash (pretty much the same thing I’d be using anyway). Then doctor casually mentioned that I should get his blood sugar checked the next time we take him to his pediatrician. He said that it wasn’t a rush or anything… that we didn’t want over-stimulate him (he has been one of the few ER doctors who understood Autism and was trying to be helpful). But whenever we could, to get it checked out when he started feeling better.

Well by the time I got home, I was more worried about his blood sugar than about him being overwhelmed and took him the next day.
They did a blood sugar check and it was so bad that the machine just said “High”.
It didn’t even give us a number just “high”.
The doctor said that considering, I caught it early… but it could have gotten so much worse had waited too much longer.

We went straight from the Pediatrician to the Driscoll Children’s Hospital two hours away. We didn’t get a chance to pack or prepare… and their Dad had to stay home to take care of Tyler.
So for three days it was just me and Justin.
Thankfully he was able to stop back up once with some provisions, but not nearly as much as we needed.

Being away from home… away from his safe space, his routine, not understanding what was going on, where he was, or why he couldn’t leave was so hard on him. He kept grabbing his shoes and taking me to the door trying to leave. His receptive language was even worse than it is now. So I couldn’t explain anything. He’d just look up at me with pleading eyes… begging me to take him home.

The IV was the worst part. He had to be on an anti-anxiety medicine just to get it in and once it wore off he kept trying to rip it back out. The doctor wouldn’t give him any more to keep him calm (he was a few months shy from turning 5)

Thankfully I was able to talk the doctor into taking the IV out early and allowed me to get his fluids up with his sippy.

Getting him to eat there was ridiculous!
They don’t supply Gerber Lil Crunchies in hospitals and his food preferences were a lot worse then. He wouldn’t eat anything they offered him.

And while I’m trying to deal with a scared, overwhelmed and sick kid… I had to learn what the heck was happening to him and how to help him.
I crammed as much information as I possibly could within those three days. And MAN was there a lot of information.
Thankfully I caught on quick…
They said we could have stayed longer if I needed to… to help make sure I knew what I was doing… so that I was confident and didn’t have any concerns.

But I wanted to get Justin home… He didn’t want to be there. I couldn’t sleep anyway, so I spent all my down time (which wasn’t a lot) reading and memorizing what I needed to do and how to do it.

When we first got there, we had to have 3 to 5 nurses to hold him down just to check his blood sugar and administer his insulin. But by the end of the second day he was starting to get used to it. By the third day… as long as no one was holding him down, he was okay.

Since leaving the hospital 3 years ago (in August) has done absolutely amazing with it.
He hands me his little finger so I can check his blood sugar, he’ll even pick up his shirt so that I can give him his insulin.

Actually, checking his blood sugar and giving him his insulin is the easiest part of Justin having type 1 Diabetes.
He’s even started holding the monitor to help me. 🙂
I think he likes the routine of it.
He knows exactly what’s going to happen.
He’ll even open up the cabinet at lunch when he’s hungry because he knows he has to have it checked before he eats. 🙂

One of the hard parts was having to be so strict about it all.
I have to check it at least 3 times a day (4 hour increments) before every meal, they want us to do 4 times (once before bed), but I don’t want to wake him up just to check it.
I have to give him insulin after every meal and an extra one at bedtime (to help regulate his blood sugar through the night and throughout the day).

I have to keep track of everything he eats so I know how much insulin to give him… He can technically eat whatever he wants, i just have to give him enough insulin to cover it (his body stopped producing insulin, so I have to figure out how much he needs per how many carbs he has).

Technically, once his blood sugar is checked, he only has 30 minutes to eat. Then he gets his insulin. He’s “technically” allowed 5grams of carbs in between meals and he can’t eat half an hour before we check him at the next meal.

But with him being non-verbal, Autistic… That just doesn’t happen.
I can’t explain “you need to eat all your food in half an hour”… Or “I know you’re hungry, but this is all you can have until it’s lunch”.
So we’ve adjusted it to fit our needs.
And it’s been working great for us in the last 3 years… Until he started school and he HAD to follow those rules. It was hard at first, but he figured it out and is a rock star.

Another “rough area” is needing to bring all of his stuff with us if we plan on being out of the house close to a meal time. You should have seen some of the looks we’ve gotten when we go out to eat. After we are back in the car, I give Justin his insulin… Well until we moved to Texas, we were using syringes instead of the, much easier, insulin pen.
I can only imagine what people thought seeing me stick my son with a syringe! Thankfully the pen is much less obvious. Lol and so much easier to use.

The thing that’s really hit home more recently is knowing that even if Justin gets to the point where he could go off and live on his own… he still probably couldn’t, because of his diabetes. It’s almost guaranteeing that once his Dad and I die, he’ll have to go into assisted living. I’m not going to stop fighting for him, and helping him be the best possible version of himself… but it’s something I’ve realized in the last year.

And although it’s hard (on both of us)… And I HATE needles (still don’t like them… but I’ve gotten over sticking Justin with them) I can say one thing… If I had to pick a kid, I’d rather it be my chillaxed Justin, who actually eats more than 5 things (aren’t all carbs) and has a higher pain tolerance.
If this was Tyler or Jaxson who had Type 1 Diabetes… It’d be soooo much more difficult!

#DiabetesAwarenessMonth

Hand over hand learning

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I’ve almost got Tyler to use sign language for “Help” when he wants me to take a screenshot of something on this tablet!!!

This will be the first successful sign he’s used since before he regressed.

Even though he CAN do it physically, it seems like it’s a mental block that he can’t put the motions together in order to create a sign.

So I take his hands and do the sign, then after a while I take his wrists to help do the sign, then I use his forearms, then his elbows and then his upper arms… (From me having most of the control to me just there as a form of support) then eventually, he won’t need me to help him at all.

It’s actually how I got him to do most of the things that he can do. (Like putting counting cookies in the counting jar.)

It’s also the way that Jax seems to be learning. 🙂