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. ❤

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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.

Good Question #2

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“I’m still working on how to avoid potential meltdowns with my 5 year old. He’s non verbal so I don’t always get it right away. Any tips from the parents???”


I personally think it REALLY depends on what he’s melting down over… “Each behavior has a reason”. And each kid is different… in order to prevent or quell a meltdown, you have to first figure out why they’re melting down and how to help them through it or how to avoid it… but for the most part, you have to figure out what it is first.

Maybe it would help to write down when, where, what time of day, etc the meltdown happened since right now, it’s not as obvious what’s causing the meltdown.

Like with the boys, we figured out that we were ONLY able to go to one specific grocery store. That’s the one they felt most comfortable at. They couldn’t tell us that, but after a while, we figured out we had a much easier time going to that grocery store than any others. A friend of mine had said that you have to make a mistake a few times to realize it’s a mistake. Which I think is genius.

Or we also figured out that those situations are just WAY too hard for them to manage… so if they had something to help cope or take their minds off of everything else going on around them, our experience would be much better.

So we brought drinks, snacks, toys, favorite blankets and tablets with movies downloaded to them. Years later, we can now go to the prefferd store, and make it through a quick trip without food, drinks or tablets. However, we know we still have our limits. If we know we’re going to be there for a long time, or we had to run errands before, or if they’re not having a particularly good day, we ALWAYS make sure to have everything on hand just in case.

That’s another thing…. we ALWAYS have a “survival kit”… or… diaper bag on hand. Even at almost 6 and 7 years old, we bring a diaper bag (and not because they’re still in diapers)… we bring toys, snacks, drinks, devices… now that things are better, we always try to start the trip out using nothing and work our way up… at first sight of an issue we start with drinks, then snacks, then a toy and lastly the device. Then worse case, we leave.

That brings me to my last point.

At least with us, our kids just can’t tell us what’s wrong… and we just aren’t be able to figure it out…. sometimes the BEST thing you can do for yourself and for your kid is just to plain leave. Leave your cart in the middle of the store, throw your kid over your shoulder and high tail it to the car. Justin is 99lbs and I will throw him over my shoulder in a heart beat and book it to the car if I think it’s necessary for either of us.

So ALWAYS have an exit strategy. If I’m going with their Dad, before we even unbuckle our seatbelts, we have a plan. If it’s splitting up or staying together, we go through what we’re doing so we’re on the same page.

“Okay, we’re going to do this this and this… if something happens, meet here or call me or this is what we’re going to do.” That way there’s no confusion, less screaming and yelling and everyone knows what they need to do in a “crisis”.

We always TRY to avoid a meltdown, be prepared and hope for the best. But sometimes that’s just not going to happen. It takes a while for kids/people on the spectrum to learn, understand and be able to cope. It doesn’t make them bad or misbehaving… it’s just too overwhelming. It makes it even harder for us as parents when they’re non-verbal because we have to guess how to help them.

Sometimes meltdowns are just going to be unavoidable. So be understanding, and don’t be hard on yourself either. If you don’t have to, do push the situation, but keep trying. Never give up… eventually it WILL get easier. 🙂

The Escalator

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With our kids, we quickly figured out where we could take them and where we couldn’t.

What would set them off and what could be tweaked to make for a better experience.

So, for a long time, we haven’t done anything that was different. Anything that would push the boundaries or that we didn’t already know the outcome to. Which put us in a false sense of ease. Now, don’t get me wrong. The fact that we can go ANYWHERE without a meltdown is awesome. And we have worked REALLY hard to get the that point. But because of that, it made me think I didn’t have to be extra cautious about going somewhere new. Or because it was Tyler, that it would be easier, since he’s the one who isn’t so persistent on strict schedules or gets upset about going someplace new.

We had to go to the mall today. We hadn’t ever taken the kids to this one since the move. Justin was still in school, and Jaxson was in a good mood. Perfect timing right? We got a small diaper bag ready, with very little essentials since we were only going to be there for a few minutes. We walk in and there’s an escalator. OH! How exciting! Tyler has never been on one! We stop so I can take him up on it, and although he’s very stiff and nervous, he loves it! Even skips to the other side so we can go back down. 🙂

We do it once and go on our way. Sure, he wanted to keep doing it, but with some insistence, we kept walking. Well the security guy who asked if we needed help sent us in the complete opposite direction. Where we walked in at, it was like 10 feet from there… instead we walk a least 5 minutes in the opposite direction until we decide this isn’t getting us anywhere and after we had to walk by a fountain (which we didn’t know was there). We were able to get away from the water fountain… turned around and went back.

Had to ride the escalators again.

And again, he wasn’t TOO upset that he had to stop playing on them. One trip up and one trip down.

Talk to the guy… nope… it’s upstairs. UGH… at this point I’m getting pretty annoyed. There are so many people, lights, toys and things to play with that Tyler is having a hard time staying focused on just walking. He’s way too excited about all the new things to look at. I took him up on the escalator… and I’m not sure if it was the fact he “needed” to go back down, since that’s how we did it the first two times, but after we got to the top, he started SCREAMING bloody murder. Kicking his feet, flopping all over the place. We had to pick him up, kicking and screaming… he wasn’t making it easy to carry him. Everyone was looking at us.

I tried sitting him down, trying to calm him down… I thought the fact that it wasn’t the same set him off… he eventually got away from us and ran ALL THE WAY BACK to the escalators when we were feet from the place we needed to go. It was a nightmare. We finally split up, I took Ty and Tom took Jax… and found out that they don’t do what we needed them to do any more. So this whole half an hour chaos was literally…. for nothing.

He was fine going down the escalator… but as soon as he realized he wasn’t going back up he started again. Screaming, thrashing, rolling around, kicking, trying to get away from me. We haven’t had a day like that for a while.

Finally we got to the car and everything was calm again. I was so wiped out I had to lay down when I got home.

I did learn a few things though.
1: No matter how much I wish for Tyler to be… he’s not “normal”. If he could talk and understand me, that situation probably wouldn’t have been as bad as it was. Or if he wasn’t so over stimulated…

2: I really need to go back to being better prepared and over analyze things again. A few months ago me, would have known that Escalator was a bad idea. But Tyler has been doing such a great job with listening when we leave the house or being able to adapt to situations better.

3: My son didn’t have a meltdown. That was a tantrum. A few things I noticed… he didn’t scream the WHOLE time. He would stop randomly to check to see if I was looking at him, (sure he was still upset, but when they have a meltdown, they don’t look at me at all) to see that he was upset and to allow him to keep playing. It was goal driven. He might have been overstimulated and overwhelmed… making the situation worse. BUT… it was not just a meltdown. It wasn’t even mostly a meltdown.

Tantrums don’t happen too often with my kids when we leave the house. I couldn’t even tell you the last time either of them threw a tantrum rather than having a meltdown when we were out and about. Usually those happen at home.

None the less… it was a learned experience.

I am proud of Tyler for trying something new that he had never even seen before though. 🙂