February 22 2019

One week! One whole week Kyle got onto the bus with minimal issues! I’m still shocked. It rained and even snowed a couple of the days and he still GOT ON THE BUS.

I’d like to think this means the bus routine is no longer going to be an issue….but I’m a realist and I know, that is probably not the case. I know there will no doubt be hard days and even weeks ahead with the bus. BUT I’ve learned to celebrate the victories anyway. Whether it’s a day or a week filled with successes. These wins give me a little more strength that is stored up and used in the bad days and weeks!

So I’m going out to celebrate this whole week of wins by eating delicious Mexican food! I deserve it!

Food shields

Feb 21 ’19

We sat down to eat dinner…spaghetti…I know! I know! But this time I waited til Kyle was upstairs and then handed all the kids paper towels, not for napkins πŸ˜‚ but to cover their plate! Just in case Kyle walked back down stairs. Genius is you ask me!

I watched my kids eat and laugh but I did have to laugh at the situation! My kids were eating with half their plate covered because everyone was so paranoid!

Our life isn’t like most. But that’s ok. Having a sense of humor is key most days…and being proactive like having a food shield definitely helps!

As soon as i said i wanna take a picture the teenage boys were of course uncooperative but it still makes me laugh. πŸ˜‚ my kids are great sports and I love them so much!

Run!

Feb 18 2019

It was a 3 day weekend. My favorite. That was sarcasm in case you couldn’t tell. It was long. Not that Kyle was abnormally hard, the days just seem really long lately.

I woke up this morning already dreading the day. I’ve been trying to lose some weight and the scale has been stuck. So this morning when it was stuck on the same number it has for the last week I was even more annoyed. Then I walked downstairs and ate a cookie…and then another…and then another freaking cookie. What the crap Katie?! No self control.

I immediately text james to complain about my zero weight loss and ridiculous cookie eating rampage. He told me I should go for a run-it would make me feel better. Right away, I thought of 27 excuses why I couldn’t go. The number one- Kyle was home today. How was I going to go for a run?!

After texting james back all my excuses I realized how dumb I was being. Its Monday the beginning of a new week. My goal from the beginning of the year was to run 3x a week. The 3 days whit is in prek. Has that happened? Nope. Something has come up every week. Like legit things most of the time. But sometimes I just say nope it’s cold I’m not going. Today was as good as any to start.

So I put my running clothes on. Got my headphones in. Looked at cody and said “I’m going for a run, you’re in charge!” He didn’t hesitate and said ok! I gave Kyle a bag of chips and crossed my fingers! Out the door I went!

I ran 2 miles, was slower than ever and my lungs burned from the cold-but I did it! And it felt so good! Like so good! I needed that run, not just physically but mentally. And guess what? Kyle was fine with Cody. Didn’t cry. All was well when I walked through the door 20 minutes later!

Then I had to go pick Justin up from his moms…normally I’d load Kyle and Whitney in the car for the half hour drive there and hour back. With Kyle anxious in the back if we had to wait a few minutes for them to get there. Then heaven forbid I have any conversation with Justin’s mom! So I decided I was going to have Cody watch Kyle again. And guess what? They were fine. Cody did great with him!

It was so liberating and I felt a teeny bit of freedom knowing I could leave Kyle with Cody for short bits of time and it’s ok. It’s ok. I was reminded today how important it is for my mental well being to take “me time”. And it’s ok. I was reminded how important it is to make it a priority. The rest of my day was so much smoother because I took that 20 minute run. I had more patience after I was able to go pick Justin up BY MYSELF.

Sometimes I think I don’t deserve-and maybe that’s the wrong word but-to take “me time” daily. That I shouldn’t need “me time” daily. Well I do deserve it and I do need it in order to be the best mom to Kyle. And it’s ok.

Monday, Wednesday, Friday runs are going to be a priority.

Debbie downer-that’s me

Guess what sucked? This morning. This morning sucked. It’s starting to get really hard to look at the positives. Like really hard.

Getting on the bus is pretty good. He isn’t perfect, but he isn’t crying and dropping to the ground. The video of Fonda and reminding him that I will keep his iPad at home if he doesn’t get on, usually works So what am I complaining about?

With anxiety comes a need to have control. And since he has caved with the bus, he needs to gain control somewhere. Well, it’s now from the moment he wakes up. He refuses to do anything. Let me rephrase that-he protests. And he is so strong that it is difficult (impossible for me) to physically make him get dressed, go to the bathroom, put his shoes on, and take his medicine. Every morning is a struggle. And every morning he has gotten a little more defiant. And his protest a little louder and more robust.

He no longer gets the iPad or tv….unless he has gone to the bathroom and is fully dressed and taken meds. Does this make him do it without a fight? Nope. He still fights me. Almost more so because he knows he isn’t getting what he wants. Every morning. I’m tired of fighting. Emotionally I feel so beat up. Not to mention the physical scratches on my hands or the handful of hair he pulls out in my attempts at getting him dressed. When James steps in it almost always makes Kyle push back harder. I’d say for the most part it makes it worse, if that’s even possible. And I’m pretty sure it is.

This morning, as I stood over him, trying to make him put on a long sleeve shirt (it’s 25 degrees outside currently) for the 5th time I stopped and my eyes filled up with tears. Tears of frustration. Tears of defeat. Tears of anger. Tears of sadness. I hate this. I hate that my life has to be hard. Why can’t I have a life that teaches me lessons in an easier manner? Why can’t he just be easier? Why?

I want to think that we are out of the hard season. I want to think that the night away with James was enough to refuel me for another couple months. I want to think that things are getting easier. I want to think I am grateful for this life I live. BUT, it’s still hard. The night away with James wasn’t long enough. Things aren’t getting easier. And I’m not feeling grateful.

If I’m being real and raw….yesterday sucked cuz there was no school. Today sucked. And I’m almost willing to bet tomorrow will suck too. And guess what? He has no school next Monday-so that day will no doubt suck.

I feel like I’m still drowning. Or climbing up a mountain that has no top…it just keeps going. And I’m tired. It’s 6:30 am I’ve been trying to hide my tears but I’m gonna go crack open a Diet Coke and pull myself together.

Just the two of us

2/10/2019

I’m not sure when it started or how it started or why but I am the most guilt ridden person. Ever. I feel guilty even when I KNOW it’s completely unwarranted. It’s like I can’t help it.

In the last few years I have worked on getting rid of the guilt I carry. Mostly when it comes to Kyle. I have worked on making me time a priority and convincing myself it’s something I need therefore I can’t feel guilty. And I shouldn’t.

I still suck and feel guilty most of the time. It’s not anyone else-it’s all me. And I don’t even know why. I guess it’s the way my brain works. I feel like Kyle is my “burden” (I hate that word in reference to him but for lack of a better word) and when I place that on someone else I feel guilt. I know how difficult he is and asking someone to take him on is hard for me to handle without feeling some sort of guilt.

I understand it’s necessary. For so many reasons. Not just for me. But Kyle too. He needs to be ok With being taken care of by someone that isn’t me. I know this. So why the heck do I still feel guilty? No idea. Maybe I need therapy? πŸ€·πŸ»β€β™€οΈ

Along with me time, I know taking time away with just james and I is crucial. Crucial for our relationship. We have so much stress every single day having Kyle. And Kyle takes a lot from me. But James is so good at telling me “it’s time” to get away. He knows my guilt and anxiety can get in the way but he doesn’t let that stop him from planning something.

After a long and super hard couple of months we decided we need some time away just the two of us. This time we were only able to take off for one night-But it was so nice to get away. The guilt and the anxiety are always temporary but the alone time away for James and I is so critical to having a healthy marriage. I have to keep reminding myself this every time a trip gets planned and my guilt and anxiety creep in…but each time it gets a little easier.

Getting away and letting someone else carry my load is ok. In fact it’s necessary for me. It’s how I am able to function. It’s how i refuel and get strength. I shouldn’t feel guilty or anxious. This is one of my goals this year is to shed my guilt. And allow people to help me. 😬 wish me luck.

Conquering mountains

February 4th twenty nineteen

It’s Monday. We woke up to more rain. And I didnt have Fonda come today. Oops. Rookie move. I thought for sure Kyle was gonna let me know it too. Oh AND we had a sub bus driver (she’s driven Kyle before and is super nice but a bit too chatty-which doesn’t always go over well for Kyle. Don’t look at him or talk to him while he’s tryin to get on the bus is pretty much a rule. She doesn’t obey it.).

But guess what? He. Got. On. The. Bus. He did it! He even did it with the chatty bus driver trying to talk to him! 😰 phew! And it was raining. And Fonda wasn’t here AND ITS MONDAY!

I’m not sure if the video ive been showing him daily is working or if he is just back into the routine of things. Whatever it is I’m super grateful! Grateful for the break in hard! We both needed it! Grateful he is getting on the bus more often than not! Even when conditions aren’t his ideal!

After a really good day at school, he got in the house and his iPad was frozen. Frozen. Not good. It wouldn’t do anything. Nothing I tried worked. He was crying And I was frustrated.

We have a corner that we keep 2 iPads. You know, back ups. Ask me if they are charged? Nope. Of course not. For some reason he doesn’t like those ones. So I stopped keeping them charged. I have a theory, I think his current iPad saves his search history for YouTube. So he knows exactly how to find the exact videos he wants. The back ups don’t. I think that’s why he doesn’t like them. πŸ€·πŸ»β€β™€οΈ

Anyway. I plugged them in-in a desperate attempt to get him to accept one that just worked. But the batteries had been dead for so long that it was taking forever to even get enough charge to turn on. Awesome.

Except. It really was awesome. He cried. Which wasn’t awesome but I swear the escalation cycle was mild compared to his meltdowns recently. After a few minutes he calmed down and just waited. Like I’m talking he sat and waited. He tried a couple of times to turn on the iPads but they weren’t working still. But he seemed pretty dang mellow considering the iPad is life. Finally his favorite iPad started working- still no idea why it froze or how it unfroze. But who cares! It started working! He was happy!

Then he was happy the rest of the evening. πŸ˜… I’m still in shock with how well he took it.

Autism and fragile x is a freaking journey with lots of mountains to climb and moments of walking through valleys, which is much easier and preferred! It’s so hard to be grateful when you’re climbing up the mountains…like so hard. But once you start your climb down and finally reach the valley, you can feel that strength you gained, while climbing up. You can look back and see what you accomplished. You feel proud that you made it. And somehow that strength is stored for the next climb up. Cuz there will be, no doubt, more mountains to climb.

I’m hoping for a little longer in the valley stage this time. But if we have to climb another mountain, I’m ready. πŸ’ͺ🏻

One step forward!

1-30-19

Guess who got on the bus this morning AND this afternoon?! This guyπŸ‘‡πŸ»Taking away his iPad seemed to work…today. Let’s hope we are headed in the right direction and he starts getting into the groove…until spring break happens and we start all over!

But let’s focus on the positive he got on the bus!!!!!!!!! πŸ’ͺπŸ»πŸ™πŸ» Today was good!