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. 🙂

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You are my Sunshine

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You are my sunshine,
my only sunshine.
You make me happy,
when skies are grey.
You never know dear,
how much I love you.
Please don’t take,
my sunshine away.

The other night dear,
while I lay sleeping.
I dreamt I held you,
in my arms.
But when I woke up,
i was mistaken.
So I hung my head,
and I cried.

Jax is 8 ½ months old. The second he was born, they wiped off his face, and wrapped him up and immediately laid him on my chest. I looked down at him and he picked his head up. Less than a minute old, and he can lift his head up off my chest. I knew he was going to be a strong little man.

From the moment he figured out he could roll, he never wanted to hold still. He’d rather be on the floor trying to roll and play with his toys. Which meant he never wanted to eat, he had more exciting things to do.

It holds true even now. Jax can sit up and and crawl… backwards. He can pull himself up in his crib, and is already trying to walk with furniture. He still needs help, but he’s very ambitious.

Before I get started (yes, this is probably going to be a decent sized post), I’d like to say, that I’ve already heard it all after my first two. But, I’m starting to get worried with Jax.

Justin and Tyler progressed normally for the most part with their milestones and then regressed. Jaxson, isn’t progressing like the other two did. I know, each kid is different. And I know that if a baby is working so hard on one area, they can be slow/behind in another. I’m hoping, the fact that Jax is trying SO hard to catch up to his brothers, he’s delayed verbally and that’s why he’s not babbling. He started to, but then we all got the Flu over Christmas break, and he just… stopped.

Sure, he makes coos and random sounds. But, he’s not actually babbling or trying to make words. He even started saying Mamamamamama around 2 months, but he barely does that every few days and only if he’s really upset.

I’m honestly not sure what’s harder. Knowing something is going to happen and waiting for it or not knowing something is going to happen and blaming yourself until you figure it out. Jaxson might end up being Autistic like his brothers. It won’t be the end of the world, but we see how much Justin and Tyler struggle… how hard it has been on ALL of us since they regressed 3-4 years ago. It’s been an uphill battle ever since (but they’re worth it).

Tonight, as I’m feeding Jax, I look him in the eyes. Which, I’m not supposed to. This kid gets so excited, so easily. If you’re feeding him, you can’t look at him or he thinks it’s time to play. NO JOKE! If you don’t look at him, he’ll eat the whole bottle in the middle of the night, no problem. But you look at him for a few seconds, he starts rolling around trying to play.

Anyway, I look at him… and he gets a big smile and start rolling. I settle him back in and start singing “You are my sunshine”. My Pappy used to sing it to me, so I sing it to the boys. He relaxes and watches me sing as he finishes eating. And it isn’t until tonight… that those words really hit home. And I just start crying when I sing “Please don’t take my sunshine away”. Even typing those words make me cry. Please, don’t get me wrong… I love my kids… and I would never in a million years trade them for an easier life. And I might lose some of you as you’re reading this. You might hate me. There are people out there who hate it when people say that Autism is a disability… but I don’t want Autism to take away my baby. I don’t want him to stop looking at me. I don’t want him to not talk to me… to not say “I love you”. To not want to play with other kids, to not want to read or learn or play with toys until years later… or have to be in diapers until at least after he’s 6. Who can’t eat more than 5-10 things. I don’t want him to get so upset and hurt so bad just because we’re going to a different store. I don’t want him to not be able to understand me… I don’t want to sit through endless nights of not knowing why he’s crying out in pain. Looking at me with tear filled eyes that are asking me “Mommy, why aren’t you helping me??”

No… Autism isn’t the end of the world. Yes, it makes my kids unique, special, interesting… it’s apart of them. But every day is a struggle for Justin and Tyler… and for my husband and I.
I love my kids. They are Autistic. But that doesn’t mean my heart doesn’t hurt every single day.

Normally, my posts, blogs, memes… are all uplifting. Encouraging. Smiles… even through the hard times. But… some days. I just cry. I mourn. I write it out… usually I never post them. It’s just for me to get things off my chest. I wipe away my tears… take a deep breath, and keep going. Because I don’t have a choice. I can’t unpack here… my kids need me.

As I said… normally, I don’t post these types of blogs, but I have a feeling… I’m not the only one who feels like this and who needs to hear that they are NOT alone. ❤

It’s good to be reminded

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2/2/15
Sometimes, when my “reach” starts dropping and there aren’t many people seeing my posts. Or every day I have someone unliking my page (sometimes even 6 people in one day), I can get discouraged.

With three boys, two on the spectrum and a baby, along with my own personal problems (like migraines, fibro, underactive thyroid, anxiety, depression, etc. – with no insurance – so no meds to help me), it’s often that I think… what’s the point? Why keep putting this stress on yourself to make sure you post enough (but not too much)? Or making sure you respond to everyone. How even when you have time to finally rest and just take a few minutes to yourself, you don’t because you’re working on your page or trying to write a blog. Why keep doing this to yourself? Just delete your page, take time for yourself! Just worry about you and your kids and live life.

Then I remember what it was like before I started my page. How alone I felt. How it seemed like there just weren’t others out there with similar problems to ours. Sure, there were a few pages I could relate to more so than the others. But I have a hard time talking to people for long lengths of time… especially in person. I end up just pushing people away. So, I didn’t have friends… my husband is either working or sleeping – all day, every day – and I’m here, with my thoughts, with no one, not even my kids to talk to.

Which is what made me start my page. I thought, if I felt like this, there HAD to be others out there. Others like me who had similar problems. Either personal or with our kids. I wouldn’t want any other person to feel like I’m feeling. Then more and more people started following my page telling me “I thought I was the only one” or “thank you, I don’t feel so alone anymore”. And with me helping others, others were helping me. I have people to talk to who get where I’m coming from. Even if they don’t have kids, let alone kids like mine… there are people being supportive and smiling at our craziness with me!

When people tell me that they don’t feel alone, because they have someone they can relate to, or how their kids are a lot like mine… it encourages me to push forward. Because I’m not doing this to raise awareness (although it is a perk). I’m not doing this to document our journey or for an outlet for myself… Although those are all GREAT reasons to start a page, I’m doing this for others who feel like they’re alone, like I did. They don’t know who to vent to, ask questions or just have someone understand their struggle… or how to see the humor in what they’re going through (which is why I post things that some people think I’m crazy for posting!).

As long as there is just one person who is getting something from my page, someone who isn’t completely overwhelmed because they know that it’s not THEIR fault their kids are like this. They aren’t bad parents, they’re just in a tough situation… that they know that things will some day get better, because they see and hear how we struggle, but can see and watch my kid making progress…

I will keep my page going.
I will fight back the urge to shut down my page when it seems like no one is listening, when it seems like no one REALLY wants to hear what I have to say… when life gets just too overwhelming.

Because it’s a horrible feeling… to feel alone… to feel like no one understands. To feel like no one gets what you’re going through. And I want to make sure, that there is at least one person in this world you can look to and know that whatever you’re going through… even if I can’t relate, I’ll be here to listen. And if possible, I’ll help… even if that’s just referring you to another page who I know has gone through something similar.

Because we as an Autism Community, we have to have each others backs. ❤