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

Regression

Shirtless. Shoeless. Sockless. Oh and crying. Lots of crying. This. This is how he got off the bus today. Never a good sign. The last two weeks of the 3 weeks he’s been back to school have been progressively getting worse. Ugh. The beginning of the school year regression is real. And it really sucks. This week he has struggled getting on the bus everyday. I’ve pulled out all the tricks. He’s just not having any of it. Today Janine said he was a real treat at school too. Throw up was involved AND an accident cuz he waited too long also happened. Ugh. When he’s home his refusal to cooperate with simple tasks is beyond frustrating. These are the times I wish I could fast forward through. Im pretty sure I’ve learned whatever lesson this is supposed to teach me. Cuz it happens too often for me not to. Hoping he gets back into the routine sooner than later cuz I pretty much want to run away at this point. He goes to his dads this weekend, thankfully. Maybe that will give him the recharge we both need. Here’s to hoping! 🙏🤞🏻#autism #fragilex #regression #whyisthebusstillhard

Over it

August 6, 2019

The last week of summer is always the worst. Maybe because my patience has run dry? Maybe because I am so tired of hearing or seeing social media posts about peoples awesome family summer vacations that our family will never experience? Maybe it’s cuz he’s bored and over summer too? Whatever the reason, the last week is always brutal.

It’s 8:02 and I started the bedtime process at 6:40. He’s tired. But so restless. So he won’t go to sleep.

Whitney starts kindergarten tomorrow so my anxiety is definitely heightened. Maybe his restlessness is because of that. Who knows.

But I’m sitting here feeling sorry for myself none the less. The day was long. And I’m over it. I’m sitting here waiting for him to fall asleep instead of downstairs helping ease my daughters nerves about starting kindergarten tomorrow. It’s hard not to feel like once again Kyle’s anxiety is stealing moments from me. And it’s hard not to feel once agin jipped.

I’m over summer. I’m over him not being in school. I’m over his crying. I’m over him asking for food right after he eats a full on meal. I’m over him not being able to transition without a major meltdown. I’m over it all. Summer sucks and the last week of summer sucks even more.

God help me get through these next 5 days. 5 long days.