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!

I am strong!

jan 29 ’19

Kyle freaking got on the bus this morning. No issues! 🀭 And you know what is crazy? My brother in law stayed the night on our couch downstairs. And was asleep IN KYLES SPOT ON THE COUCH. I was super nervous-thinking it was gonna make this morning so hard. But Kyle was a champ and got on the bus NO PROBLEM!!!! 😭

Now ask me why this morning was such a breeze? My answer is, who knows? πŸ€·πŸ»β€β™€οΈ Ask me if tomorrow will go as smoothly, again I have no clue. I showed him the video of him walking onto the bus with Fonda last night and several times this morning. So it could be that? My brother in law was here and asleep in Kyles spot on the couch-so it could be that Kyle just wanted to leave? Who knows…I’m just hoping for another good morning. πŸ€žπŸ»πŸ™πŸ»

Now with all that good news…there’s always a little bit of bad. Kyle has to make it difficult on someone just to keep people on their toes. He walked off the bus shoeless and no socks. Barefoot. Never a good sign. πŸ€¦πŸ»β€β™€οΈ Janine said he had a great day up until 5 minutes before it was time to go and he had a meltdown for unknown reasons. And didn’t get on the bus to go home smoothly. So he lost his iPad privileges on the way home on the bus.

Since going back to school from that hellish long three week break-he has struggled with getting on the bus in the afternoon almost as bad in the mornings. So he has lost his iPad on the way home most days. BUT he always gets it when he gets in the house.

Today I was feeling strong. I knew he needed to understand that walking onto the bus in the afternoon was important. So I didn’t give him his iPad today. I explained that he didn’t get on the bus nicely for ms Janine so he could try again tomorrow for his iPad. He knows when he messes up cuz he doesn’t meltdown. He asked a few times for the iPad and tried to break me a few times. But I didn’t give in! πŸ’ͺ🏻 I’m betting tomorrow afternoon when Janine reminds him that if he wants his iPad he needs to get on the bus nicely-he’ll get on! He missed that iPad tonight.

With any kid it’s usually harder on the parent when a child messes up and has to suffer consequences. But it’s just as important if not more important to follow through with Kyle. He knows better. Sometimes I am exhausted and don’t want to follow through (because it’s harder on me) but when I do it’s always better. I’m hoping tomorrow with a few reminders he gets on the bus in the morning AND the afternoon so that he gets his beloved iPad! 🀞🏻For his sake AND mine!

Try, try, try!

Jan 28 2019

Last Thursday, I met with Erika during the school day so that we could brainstorm ideas on how to help ease the trouble Kyle is having daily. We came up with a list of things to try. It seems like we are always having to “try” something with kyle. I guess it’s what we do.

One of the things we came up with, was recording him getting onto the bus successfully with Fonda. Then I will show him the video the night before school and as many times as he will allow in the morning, before the bus comes. My hope is it does a couple things.

1. It will (crossing my fingers)Remind him he is capable of walking onto the bus without crying and James having to physically get him on.

2. He doesn’t like when Fonda comes-my theory is because he knows she means business and he has a different behavior history with her. But mostly cuz she has some magic touch and he will do anything for her! Anyway-I’m hoping it will remind him if he doesn’t get on the bus ms abbey will show up the next day!

3. If he doesn’t walk into the bus appropriately he loses his iPad for the whole bus ride to school. So hopefully he will REALLY want that iPad and walk onto the bus. By watching the video it will trigger his memory on his ability to do it correctly.

Who knows if this will work. I never know what will motivate him or what will ease his anxiety. His reinforces constantly change, which has always made him extremely difficult. What works one day may not work another.

I just keep trying. I just keep hoping. I just keep on keepin on. πŸ€·πŸ»β€β™€οΈ

Here’s the video we took this morning. He threw his shirt off, which is unusual with Fonda here. I’m thinking it’s because james was filming. πŸ€·πŸ»β€β™€οΈ So it’s not a perfect getting on the bus model. But it will do for now!

Sigh. I showed him tonight. And he did what he usually does when he sees or any mention of ms abbey-he started blowing kisses and saying bye over and over! πŸ˜‚ Praying it works and tomorrow is a smooth transition onto the bus.

Ps he has ANOTHER minimum day on Wednesday this week and NO SCHOOL next Wednesday. I swear I never had this many days off. Lame. Always adds a bit of spice when he has a break in his schedule midweek. 😏

Rough night

January 27 2019

Kyle refused to get in the bath tonight. Which resulted in 10 minutes of me asking then begging then yelling then begging again. Finally I walked away and stood at the stairs breathing deeply and telling myself it was ok. Then he walked into the bathroom…. only to fight me about getting him washed. Which turned into another meltdown that just grew into a bigger one. We fought about drying him off and then about getting his underwear and singlet on. Lastly, He wouldn’t get into bed…lots of tears and snot and several attempts at throwing up but he is finally calmed down and laying next to me in bed.

He is so stubborn. But so am I. I have been better about taking his iPad away when he becomes defiant. He understands consequences and it works well with taking his iPad when he is just being a punk. Which is why he was so upset. He knew he lost his iPad. But I was still mad so I wasn’t about to give it back! He knew he messed up and this time my stubbornness won.

What I wouldn’t give to get inside this boy’s brain. The level of frustration on both our ends, I wish I could make go away.

And now we go to sleep and wake up to Monday. And the bus. Sometimes it feels like I never get a break. He never gets a break. I wish life was easier for both of us. I guess I will grasp to hope. Hope that life will be a little bit gentler on me and this boy of mine, in the coming days. Hope that Life will get a little bit easier. We both could use a break.

Faith

1/ 25/19

This afternoon I was typing in “spongebob squidward” to YouTube for Kyle. That’s currently his favorite search. As he was walking away Whitney said, “I wish Kyle’s brain worked like mine.” Oh my heart.

I often forget when things get tough with Kyle, it not only is hard for me but my kids as well. Being Kyle’s mom is hard. But I can’t imagine how tough it is to be his sibling sometimes. And my kids are champs and don’t ever complain. They mostly worry about him. But never complain.

When Whitney made that comment I took the opportunity to talk to her about when Kyle goes to heaven (when he’s so old) he will have a brain just like us! She lit up. She asked me a slew of questions! Would he not cry as much? Would I not have to help him get dressed anymore? Would he talk like us? Would he talk to Gooding? Would he play soccer with her? When I answered all her questions she said she couldn’t wait to see him do all those things! But she doesn’t want to die til she is an old grandma! πŸ˜‚

I’m so grateful for my faith. I’m grateful for being taught as a child about being a child of God. And that Christ died for us so that we could live again. And live again in a perfected state. I’m even more grateful for that knowledge, having Kyle. I cling to that. Especially on the really really hard days. I’m grateful that I can pass my faith onto my kids. So that when it’s hard having Kyle as a brother, they have something to cling to.

I hope when the day comes that Kyle is able to express his love to his brothers and sister they will all realize it was worth all the sacrifices they made in this life. ❀️