Everyone was Kung fu fighting!

Tonight was rough. It started out with me trying to shower Kyle without taking a shower myself. Every night is a whole lotta “Stop pulling my hair! Don’t splash me please!”. Seriously, every night. Tonight I stood there with wet hair and wet clothes, feeling defeated. I was frustrated and then it hit me that this is my life. What I wanted to do was run into my room and quit. Buuuut that’s not an option. So instead I fought with him more to brush his teeth, which is a whole lotta “don’t bite the tooth brush! Quiet hands please! We’re almost done!” Then we went into his room where I just was ready to hurry and get him dressed. But that wasn’t what happened.

He decided today he wanted Kung fu panda on the iPad. To most that sounds like a simple request. And sometimes it is. Tonight it wasn’t.

Years ago when the first one came out McDonald’s gave out the figurines in their happy meals. Kyle became obsessed. We held onto those toys through several moves. But eventually they were lost. Every once in awhile Kyle will ask for one In particular, tai lung. The bad guy. He LOVES that one. Most of the time he will accept that we don’t have it anymore. He insists I look under his bed because ONE time that’s where we found it.

Well tonight he became so set on having it. He asked about a thousand times using his hands. I knew exactly what he was asking for. And after he asked nicely several times he became more and more upset. He refused to get dressed and then went into full fledge meltdown mode. Like nothing was going to calm him down. I felt so helpless because he would start to calm down and try so hard to explain to me what he wanted. He was almost desperate. I kept reassuring him I knew what he wanted but I didn’t have it. That only made it worse. I left the room a few times hoping he would settle down but he only got more upset.

At one point I was explaining to Marie that they were old McDonald’s toys that he was asking for. To which Kyle began asking for the car over and over. Pretty sure he heard me say McDonald’s and he thought that the car would take him to the toy he was so obsessed with getting. 😭

At this point I started to feel sad. I was trying so hard to communicate to him that I understood what he was asking for it just wasn’t something I could make happen. He was trying so hard to calm himself down and explain to me what he wanted hoping that if he asked appropriately he would get it.

It sucked. This sucks. Why can’t our life be easier? Everyday is hard. For me. For Kyle too.

He calmed down enough that a Reese’s, which he hardly gets worked to get him to stand up and refocus. He jumped up and finished getting his pajamas on and settled down completely. He asked for the figures a few more times but accepted that I didn’t have them.

I’m laying next to him now and just finished purchasing used McDonald’s Kung fu panda toys on eBay for $50 bucks. 🤦🏻‍♀️ Kyles birthday is next week and he will LOVE them. I’m grateful that people still have them and that eBay exists cuz there are few things that bring Kyle joy. Those toys bring him joy. ❤️

Tonight was hard. Just like yesterday was and tomorrow will be. But even as I type that I am grateful for the hard life I live. The opportunities to grow DAILY are worth it. And watching his face light up when he opens those $50 worth of McDonald’s toys is gonna be the best! ❤️

Blah blah blah

Blah. Yesterday Kyle had a near perfect day. He got on the bus NO PROBLEM. Like hopped on with a smile! Then Janine reported after school that he was awesome all day! His transitions at school were great! He didn’t meltdown on the bus when Jorge didn’t turn the direction of our house!

Then this morning. I did everything I did yesterday. Thinking maybe if i keep everything the same the outcome will be the same. Wishful thinking. We walked out to the bus aaaaand he started melting down. Kept pointing at the house asking for 27 different things. And progressively getting more upset. James tried getting him on but Kyle was not having it.

Let me stop right here for a minute. James planned to go to a gym class that started at 6:30am. Get Kyle on the bus at a little after 6, just in time to make it to his class.

After a few failed attempts by James and Kyle now on the ground with both shoes thrown across the lawn…Janine suggested Jorge leave and come back after picking up a few of the kids. A redo.

I immediately felt an overwhelming amount of guilt as the bus drove away. James would have to miss his class. Seems minuscule. But wtf Kyle?! GET ON THE DAMN BUS!!!!! Suuuuck. I HATE that I need James to help so much in the morning. I hate that I can’t do it by myself. It’s the worst.

James guided a screaming Kyle back in the house. Kyle plopped down on the floor and kept on screaming. He knew he messed up. No ipad. And mom was pissed.

After about 10 minutes he calmed down. And he sat in the middle of the floor with his head down until the bus showed up around 6:35. He got up and walked out and onto the bus. 🤬

Why? Why does he do this? To explain the level of frustration is impossible.

Here’s the deal. I know I am the issue. And that is super sucky. He has major separation anxiety. Like imagine the toddler stage when they have major separation anxiety-yeah that’s Kyle. All. The. Time. His whole existence. Then throw on top of separation anxiety a little transitional anxiety. Yup. He sucks at transitions. How do I fix this?! He’s my kid. I can’t not get him ready in the morning. I can’t not help get him out the door.

I feel an enormous amount of guilt. I feel an enormous amount of anxiety. Every single morning. And it sucks.

Why can’t this be easier? Why can’t he just get on the bus?

Oh and did I mention we took him to the dr on Saturday-the one that tried to break up with us cuz he’s retiring. Yeah well, he ripped the bandaid off. He didn’t reschedule with us. 😭

I need another vacation. But maybe I won’t come back the next time.

November 5th 2019

Storm before the calm

Kyle is making me earn every ounce of my Hawaiian vacation. Today sucked. From 5:20am on. I think I put his socks on and he immediately took them off and threw them at least 10x. Every time I put a pant leg in he’d kick it off. I wanted to scream. I did at one point. To which he then cried and melted down further. If that’s even possible. And yes. Yes it is. Then this afternoon he walked off the bus wearing a pair of shorts only. No shirt. No socks. No shoes. Janine said it was rough all day. I’ll spare the details but he went through all his spare clothes. 🤦🏻‍♀️ Then when it was time to go to the bus he stripped and through everything as well as his backpack, all while screaming.

I’m at a loss as to what to do. I’m exhausted. He’s so hard. This is so hard. Erika came today and we talked it out. She gave me suggestions. I listened. I’ll try them, cuz that’s all I can do. But damnit, Kyle! Suck.

He didn’t get his iPad all afternoon because of his outburst before getting on the afternoon bus. But sometimes I think that is more of a punishment for me. I’m hoping. I’m crossing my fingers. I’m begging and pleading with god that tomorrow he will want that iPad so bad that the morning will run smooth. That his day at school will run smooth. That when he gets home tomorrow and Marie arrives it will run smooth.

The calm before the storm is the saying but seems like it’s the opposite for me. The storm before a week of calm and then I come back to more storm-hopefully a little tanner and my emotional tank full.

Sigh.

James left tonight for a business trip to Ohio too. Trying not to let that get me down. I can do hard things. Not sure how much longer I can lie to myself…hopefully at least til Tuesday when we board the plane to Hawaii. 🏝

This is Kyle from today….

Good morning sunshine

Monday 10/14/19

“Comparison is the thief of joy” I’ve always loved that quote. I often reference it when I start to compare my journey of motherhood with others who have what seems like a much easier journey. But this morning I didn’t even have to compare for my joy to be stolen. Autism, fragile x, anxiety-whatever you want to label it-IT stole my joy. To which I then started comparing! 😂😬😳

I went in to wake kyle up at the usual 5:20. The last few school days he has been better about walking down with me. Today he stayed in bed. James eventually had to help kyle get up and down the stairs. I knew I was in for it at that point. But I told myself to remain patient and not let him feel or sense or see my frustration. Because that makes it 100x worse, and we didn’t have time for a meltdown. It was 5:45 by the time he made it down stairs and the bus gets there at 6am!

He took his morning meds but as soon as it came time to getting dressed, the defiance began. Every time I’d finally get a pant leg on (after much resistance on his part), he’d immediately kick it off. He did this maybe 10x. Progressively getting more upset. I tried everything to let him communicate what he wanted. But I don’t think he wanted anything except not to get dressed and go to school.

It was now 5:55 and my frustration had peaked. I had picked up his thrown shoes too many times as well as his shirt thrown across the room pants and socks. Every time I’d get something on he’d immediately take it off. I stood up completely defeated and started crying. By now kyle is screaming, I’m crying and James is probably looking at me like why did I sign up for this almost 10 years ago?!

James came over and by the grace of God got kyle dressed. I walked out of the room and heard the bus pull up. Great. The fight isn’t even close to being over. He still hasn’t calmed down, so I knew the bus task was going to be rough.

And it was.

James muscled him on. With no shirt shivering, wet socks because he threw his shoes at the bus and walked through the wet grass. But not before he was shivering so bad from being cold that he made himself gag and throw up…in the grass thankfully. After James got him on I walked into the house trying to hold back tears of defeat. Tears of frustration. Tears of I don’t want to do this anymore. Tears of exhaustion. Just tears. Suck.

I try not to compare. It’s hard sometimes but for the most part I think I do a pretty good job. My journey is mine for a reason. Your journey is yours for a different reason. And that helps me not lose the joy in my journey. But this morning, my joy was stolen. This morning I couldn’t help but wish my life didn’t include autism, fragile x or horrible anxiety. I’m trying to tell myself that it was a rough morning. That’s it. But when there are more rough mornings than not rough mornings it’s hard to keep telling myself that it’s JUST a rough morning. It’s harder to keep finding joy in my journey. It’s harder not to compare my mornings from hell to someone who doesn’t have a Kyle. I’m trying hard. Extra hard today.

As I wait for the bus to pull up after kyles long day at school, I’m filled with anxiety. He’ll be here any minute, and I’m praying his day went better than the morning. I’m praying that the rest of the evening goes better than this morning-Marie comes at 4:30. Bless me. I can do hard things. I can do hard things.

*****update

Janine said this morning he finally calmed down and she was able to get his shirt and shoes back on him. He asked for his iPad but she is super good at follow through and didn’t give it to him. She told him he could try again when he got on the bus to go home. He accepted that. She said his day was good and earned the iPad for the ride home. Marie came and the session went super smooth. Thank goodness. A tender mercy, I’m sure.

I’m trying to dig deep for some positive vibes cuz tomorrow morning I gotta wake up and try this all over again. Not knowing what will happen. But like I said at the end of this post…I can do hard things. Basically, cuz I don’t have another option. But I can do hard things.

Hawaii Hawaii Hawaii

This guy is still making me prove that I love him unconditionally. He got mad when Marie asked him to do a simple matching activity that he knows how to do but just didn’t want to do it tonight. So he melted down. Made his way to one of the only spots left in the house that has carpet-the stairs….and peed. Seriously? Yes, seriously. And you wanna know what the worst part is? I can’t get mad cuz if I get mad he only gets worse. Like way worse. Which is so hard. Cuz I know he did it to let us know he was mad. Not because it was an accident. Basically he was being a punk. But the moment i lose my temper he loses it completely and there’s no turning back. I was stern in letting him know it was NOT ok which led to more crying. But what i really wanted to do was take everything away. No iPad no tv. But that only makes me feel better for a moment then it causes him to go into a full on meltdown which leads to puking. So…instead he had to earn his iPad back by doing the matching activity correctly after his bath after he had calmed down. Ugh. So frustrating. James and I leave for Hawaii in less than two weeks….I had to keep reminding myself that as I was cleaning pee out of the carpet tonight. 😏 #autism #fragilex #ilovekyleilovekyleilovekyle #hawaiihawaiihawaii

Suck

Suck. Replace the “s” with an “f”. That’s really what I want to say. And I may have said it a few times. Don’t judge me.

Today was minimum day for Kyle. Marie came today. And there was a mandatory parent soccer meeting at the school for Any kids wanting to play on the school soccer team-Cody. Oh and the meeting was at 5pm.

Honestly I didn’t think I would walk into my house after being gone 30 minutes to what I did. 30 minutes. I was gone 30 stupid minutes.

I walked in and was instantly greeted with the strong odor of puke. And Kyle sitting with Marie in the front room-with a towel draped over his lap. James walked around the corner and shot me a look of “sorry babe” without even saying anything. No one had to say anything. I already knew. I walked into a puke storm.

I didn’t even ask what or why. I just tried to hold back my tears. And hold back my irritation. Irritation for Marie for not knowing him well enough to know the puke face-totally not her fault but I’m still irritated. Irritation for Kyle that his go to is throwing up. Freaking throwing up is his go to. What the crap. Irritation that this is my life. I can’t leave for 30 minutes without having to pay for it. It’s not fair.

I didn’t even want to walk upstairs. James said he gave Kyle a bath (god bless my amazing husband) but he couldn’t clean the puke up it was too bad and his gag reflex was on high alert. Which made me really not want to go up there. I got my cleaning supplies and towels and walked up to his room trying not to melt down.

I walked in to this: How do I even clean this up? Where do I start? The smell was so overwhelming. Like soooo overwhelming. It was chunks of puke. I walked in stood there for a few minutes and walked back downstairs.

James and I have talked about being a carpet free home due to the over puking by Kyle. So what better time to start tearing carpet out? That’s what we decided. My husband is amazing.

We ripped the carpet out of his room and we will lay down some sort of flooring over the weekend-that isn’t carpet. It’s hard not to feel like a prisoner of Kyle’s. I feel so suffocated by him sometimes. People tell me I need to leave him more, he needs to get used to having other people do things for him. But. This. This is what happens when I leave. And it was 30 minutes. I leave and it makes my life MORE difficult. I am literally a prisoner.

I’m laying next to Kyle now. He’s super anxious because his room is different. No carpet. Just the padding. I had to throw away his bed rail because it was covered in puke. His toy box had to be thrown away-it was covered. Now we lay here. Me trying not to cave to tears. Him trying to calm his anxiety enough to relax and fall asleep.

I’m trying to tell myself to stop feeling sorry for myself. To knock it off. It’s just puke. But Im so tired of puke. Suck. I’m just so tired. I keep saying that, I know. People often tell me they don’t know how I do it. I didn’t know I had a choice. I get up everyday and fight the fight because it’s the cards I was dealt, I guess. I don’t know any other way. But it’s hard. And I’m tired. And some days all the online shopping and all the diet cokes aren’t enough and I have to bring out the big guns and say suck with an “f”.

Positive: soon we will be a carpet free home. And cleaning up throw up will be so much easier. ❤️🧩

Donald Duck

I am pretty sure anyone who knows Kyle or about Kyle, knows his struggle with the bus. While I was at my brothers this weekend for the wedding of his daughter, I asked him to make a video of him talking to Kyle in his ‘Donald Duck’ voice telling him to get on the bus! Kyle loves when uncle jason talks like that, and I thought if nothing else it would get Kyle to smile! I didn’t give jas any instruction on what I was looking for-a simple video of him saying “get on the bus Kyle” was all I asked for! My brother text me this awesome video tonight! I watched it and couldn’t help but tear up a little. Whitney and i watched it over and over and smiled and laughed! I don’t even care if it works! 😭 The time and effort that he and my sweet sister in law took to do this means everything-they even wrote a script. ❤️Life is hard with Kyle and I know people-especially close family and friends want to ease my burden when they can. This. This is easing my burden. Thanks @jason_curtis_petersen you’re the best. I love you, brother! Here’s to hoping Donald Duck helps get Kyle on the bus tomorrow morning! 🤞🏻#fragilex #autism #donaldduck #getonthebus