Regression

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Memory is a funny thing. We tend to forget, push away and even change what’s happened to us and the way we keep those memories in our minds.

It’s been 3 years since we moved from Pennsylvania to Texas, and it’s been 2 years since we moved from the apartment into the house.

Twice, since the boys were diagnosed with Autism, we’ve had MAJOR changes for the boys to the point where there was regression. So, I knew it was going to be hard moving from the house into an apartment, but I knew I could deal with it, just like I have in the past… and besides… it’s one step closer to us being able to move to Colorado.

I remembered little things, like the boys having a hard time sleeping.
Being upset because of change in routine and not knowing what’s going on…
I remember being tired.
Remembered Justin having belly issues…
I remember fearing regression.
I mean, who wants to work REALLY hard, just to lose it all?
I remember crying to doctors asking them to find another way to treat my children because I was scared they’d regress because it would be such a shock to their systems > like having 6 people holding them down while they’re screaming bloody murder trying to draw blood…

It’s ironic just how much I forgot or pushed away until it all happened again, until I started seeing the changes and remembering why I was so scared. Maybe I pushed it away… maybe I chose to forget. Maybe it’s my underactive thyroid, stealing pieces of my life, my memory… gone unless I took pictures or something triggers the memories again.

So it’s no wonder why people who have never lived with someone who has regression or dealt with it personally, would shrug it off and say something like “he’ll almost definitely regress… but regression is better than death”. Which, don’t get me wrong… it is… but regression isn’t something to sneeze at either.

It’s anxiety over not knowing where you are or why you’re here.
It’s being scared because things are new and have changed and your routine, the thing that kept you safe and understanding and knowing of what’s to come so you could finally breath, is gone and you don’t know when it’s coming back.
It’s shaking… trying to figure out what’s going on, and not being able to sleep for days or even weeks because it’s not your room…

It doesn’t look the same.

It doesn’t smell the same…
…sound the same.
It’s not eating…
It’s getting stomach issues because you don’t feel comfortable going to the bathroom in a new place.
It’s losing language because your body and brain can’t focus on speaking when it’s so focused on it’s fight or flight instincts.

It’s crying at night, asking to “go home”.
It’s grinding your teeth and never being able to just be still… because you’re not comfortable in this new place that isn’t your home.

It’s not understanding the new rules or forgetting them… so instead of staying inside with your mom, you find a way out… and not know how to get back or ask for help or even realize what you’re doing is wrong or dangerous… and your neighbors find you, call the cops. Your mom, barely able to breath, crying her eyes out, scared to death and panicking, that she’d find you hit by a car. Looking everywhere for you because you don’t have any “usual spots” or “typical routes” to even start looking in, finally sees you and can bring you back home… collapses on the floor… sobbing… living through another of her worst nightmares.

It’s a Mom, sitting on the floor outside of their child’s room… bawling her eyes out.
Praying her kids will calm down and go to sleep… because she hasn’t slept in days and she’s exhausted.
Hoping that they stop screaming…
That the kid who was here just a couple weeks ago, would come back to her.
Dreading how much work it’ll take to get them back to where they were…
Where her kids listened and didn’t run away from her… They understood, stayed safe… and knew how to behave because of repetition and understanding of expectations.
Where she could breathe… could allow herself to drop her guard for a few minutes throughout a day because she knew they were safe.
Instead of living in constant fear… having heart attacks when she can’t see all three of her kids right away…. Slipping into a panic attack, thinking they got out of the apt again.. And this would be the time CPS would take them away or she would find them at the bottom of the pool, taken or hit by a car.

Regression isn’t just needing to relearn a few words or “two steps forward, one step back”… it’s like a reset button. And you never know exactly what it’s going to reset. It’s anxiety and fear. It’s sleepless nights and crying… lots and lots of crying.
It’s everything and anything that isn’t health or safety getting put on the back burner.

And it’s what we’re dealing with right now…

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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. ❤

Parents using “leashes” on their kids.

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Someone just said “hold my earrings!” didn’t they? I’m not looking for a fight!  I’m not putting down people who use them and I’m not saying that every child should be made to wear one.

As you can see, we used one that looked like a Monkey with a tail on Tyler when he was younger. We didn’t really have to use one on Justin. He didn’t run as fast or as far as Tyler did. lol He still ran! It was just “easier” keeping him close. Wasn’t easy… just easiER. lol

I know a lot of people think they’re bad. That NO kid should be made to wear a leash. Then there are some people who rudely tell parents “Why don’t you put a leash on that kid!”.

I’m not one to judge or tell you how to raise your kid, but I will tell you what we did and if it helps you… awesome!

Before I had kids, I’ll admit, I turned my nose up at the idea. “Just teach your kid not to run away from you”. At 19 I don’t recall hearing about Autism… or that there were special needs kids “eloping”… that they didn’t understand what danger was. Which is why, when I can, I try to take the time to explain myself to others…. you never know, that one person you don’t just growl at might have MANY other people they can influence with their new knowledge (even when they’re the one growling first).

It wasn’t until Tyler was about a year-ish (not quite sure when he regressed – he was diagnosed at 2) that I realized we had a problem with him taking off. We lived in the middle of no where and would take walks on the road. He would get SO excited, he would just take off. Running full speed away from me, towards a bend in the road that I couldn’t see around for cars.

It didn’t matter what I said or how I said it, he wasn’t stopping for anything. Which meant I had to leave Justin behind to chase after Tyler and pray that a car wouldn’t come in either direction before I could get them both. Don’t get me wrong, we didn’t have a lot of traffic where we lived, but because we lived out in the middle of no where, on back roads, people FLEW through there. Doing 50-60 MPH in a 20 MPH area because everyone knew the roads and usually there was no one on them… So, although 7-8 times out of 10 I didn’t have to worry about the boys… those 2-3 times…. all it would take was that one second… To be too far away from one of them and a driver not paying attention.

After MONTHS of trying to teach him to stay with me, to answer to the word stop, to hold my hand… we decided on a leash. (Before we even knew he was Autistic) I didn’t treat him like a dog though – letting him run and pulling back on him when he reached the end of it or  walking him like that without holding his hand. It was PURELY backup. So if he got away from me and took off, he couldn’t get too far. I still put in the hard work… I was still teaching him to stay with me, to answer to no… to move off the side of the road when I yelled “car!”.

Eventually, all of that did work. Now when we’re walking in town or in the store, for the most part, he stays with me. If I say stop or come here… he listens. If I say “hands” he comes over and takes my hand. “Car!” He moves farther over. Which, it’s funny… you can tell he doesn’t get away with not listening to me AT ALL when we’re outside because he listens immediately, but at home he knows sometimes I’m too tired to put up the fight and I don’t always follow through with my instructions. So, he knows he can get away with more at home. (Goes to show not letting them get away with not listening to you works lol)

I don’t think leashes/harnesses are bad…. but I DO think you can misuse them. They shouldn’t be a replacement for the hard work you need to do with your child to get them to understand what they’re expected of. I know it can take a LONG time for them to understand, but it’s worth it. Don’t ever give up on your kid and think they just can’t learn. With positive reinforcement, repetitio, being consistent and not allowing them to not listen to you…. kids on the spectrum CAN learn!

I think people look at our kids and think “they don’t have it that bad… at least THEY listen to her”. Yea! lol About half to two thirds of the time, they listen (most of that is when we’re outside of the house lol)… but they listen to the words and phrases they understand and that I use EVERY SINGLE time I want them to do something. If I want them to “come here”… I don’t say, “Why did you run away, get over here, I’m not going to tell you one more time, I’m going to count to 3!” Nope… I say “come here”. If they don’t listen, I go get them, say “come here”, bring them back to the cart, then say thank you.

I’ve read somewhere (and this is paraphrasing because I read it like 3 years ago) that it takes an average kid to learn something about 3-10 times of being told and taught to do it… and it takes a kid on the spectrum about 30-40 times to learn the same thing. So, don’t give up…. Yes, you may have told them to stay with you SO many times you’re pulling your hair out… but eventually… they WILL get it!  And that goes for everything, including foods… so keep trying those too!

Please don’t think I’m telling you how to raise your child or that I know all the answers. I’m still learning!!  This is purely my opinions and what I’ve learned in the last 6 years of raising my boys. (I won’t be the one giving you advice about raising teens… I haven’t made it that far yet! lol)

Moral of the story? Do what works best for you and your family and what you need to do to keep your kids safe!