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.

Masterpiece

It’s moments like this that give me fuel to keep going. They sometimes are few and far between but always come when i need them the most. No more summer school and two long weeks til school starts. 😳He doesn’t usually initiate activities that don’t involve the iPad or the tv. But yesterday he walked into the chalkboard room, found the chalk and started drawing all on his own. He was so quiet and in a zone. I couldn’t help but smile as he created his masterpiece, and didn’t want that moment to end. Life is hard and days are long but I can’t help but be grateful I get to experience the hard with Kyle so when precious moments like this happen I am able to appreciate them on such a deeper level. #autism #fragilex #artist

Joy.

So, my prayers were answered. Kyle has pretty much put puking on the shelf. BUT not without replacing it. 😏 When he gets super upset he wets himself now. Awesome. I’m trying to decide what’s worse…cleaning up puke or pee? I haven’t yet decided.

Today Kyle struggled with the transition of Marie arriving. He struggled for a good 45 minutes. Within those 45 minutes he decided to pee…on my carpet upstairs then sit in it while refusing to stand up and get in the shower.

I think today I was too tired to get upset. So I just remained calm (for the most part) and quiet. All the while thinking how I wish my Saturday was being spent doing something much different.

When I finally got him bathed he continued to struggle, made it downstairs only to struggle some more. I’m still not sure why Marie shows up. If I were her I would have quit a long time ago. Working with kids like Kyle is definitely not for the weak.

She gave him simple tasks and he would just refuse and then get mad. It’s so frustrating to watch. Just pick up the cup Kyle and hand it to her nicely Kyle!

After fighting through his stubbornness he finally caved. And the last half of the session went smoothly. I was afraid to jinx it by pulling out my phone to record it so I didn’t record the better half.

He asked to draw-which rarely happens. But it’s so cute when he does. He took a pen and paper and drew lots of lines and circles. And was very proud of his work! It actually made me forget about the pee i had to clean up and the horrible meltdown that had just occurred. It made me smile watching him.

Every single day is like this in some way. I’m on a roller coaster of emotions. And he probably is too. One minute I’m so mad at him and the very next minute he makes me smile and laugh.

I guess Kyle helps me recognize daily what it means to experience true joy. The sorrow and pain that comes with raising Kyle doesn’t go without reward. I know and appreciate joy and happiness BECAUSE of the pain and sorrow. When I stop and realize the lessons he is constantly teaching me I am so humbled. Without him I don’t know if I’d be able to look around and truly find joy in the small and simple things.

So even though he’s replaced puking with peeing, I lay here next to him feeling grateful. Grateful that God let ME be this special boys mom.

Side note: I do not always feel grateful for the sorrow and pain. Some days I wish I could just experience the joy and skip the sorrow! Today I guess I was able to see the bigger picture and needed to document it! ❤️

July 15 2019

James had a family reunion in Utah last week. He really wanted me to go. I worked it out with Kyle’s dad to come here while we were gone Wednesday night through Sunday. That way Kyle could keep his routine of going to school and Cody would be able to spend a little extra one on one time with his dad. What a perfect plan huh?

On Thursday afternoon, we were halfway to our destination-bear lake in Utah. I got a text from Shanda. 😩 ugh.

Leaving Kyle with his dad is normal and I’m usually ok in the anxiety department. But this time it was different because mike was staying at my house. Getting Kyle ready for school. Making his lunch. Getting him on the bus. Etc. Kyle’s routine at my house is different than it is at mikes.

I left very detailed instructions. And mike reassured me several times he could handle it. And I knew he could and would. But I still had anxiety.

But I was doing really well with my anxiety almost non existent… up until that text. Then it sky rocketed! I forgot to have mike give Kyle Imodium before school. Lately his anxiety is manifesting itself in the form of diarrhea. Which is super awesome. How could I forget to tell him to give him that as a precautionary measure?!

So, I texted back and forth with Shanda who I’m sure was super frustrated-apparently he had an accident far away from the classroom then he panicked and sat down and refused to stand up. Awesome.

I was in a car hundreds of miles away feeling helpless. Completely helpless. My anxiety is through the roof! And then Shanda text saying Kyle wouldn’t be able to come to school Friday because of the diarrhea. Uhhhhh…..

So the whole reason of having mike come to my house was squashed. My plan backfired.

Mike picked him up and was super understanding of the hiccup and him not being able to go back to school the next day. But I was still super upset. I sat in the car for miles repeating to myself this is why I can’t leave. James reassured me that there was nothing I could do…but the anxiety and worry didn’t go away for miles.

People tell me all the time I need to take breaks. They tell me that I need to leave Kyle with others and not feel guilty. But seriously, this is what happens. Sure, it was taken care of and mike handled it. His teachers handled it. But me leaving caused this whole thing. Me leaving caused my son to have such horrible anxiety that gave him diarrhea. Which then caused someone else to have to clean him up. I don’t know how I’m not supposed to feel guilty. I don’t know how not to.

Being Kyle’s mom really is a long and lonely journey. One that no one truly understands. Anxiety is ugly and unfair. The fact that I have it and Kyle has it, makes it more ugly and more unfair.

We made it to the reunion. And I was able to enjoy myself for the most part. But in the back of my head was the anxiety of getting home and having Kyle adjust to me being home.

Our original plan was to leave Sunday morning and drive 13+ hours home. But then we wouldn’t get home until late. Kyle wouldn’t have anytime to adjust to me being home. He’d be asleep when we got home. I’d have to wake him up in the morning for school. I knew he’d have major anxiety with this.

So I convinced my husband to leave HIS family reunion the night before so we could split the drive up and ultimately avoid Vegas traffic and get home earlier. I’m sure he wasn’t overly happy to have to leave early. But he did it. And we were able to get home in the early afternoon. Kyle was able to adjust and spend time with me before going to bed.

He came home today from school and Janine said he had a great day. Had he not had the time to adjust to us being home, I know his day would have been different.

Autism never leaves me. Even when I leave Kyle. It’s always on my mind. Every decision I make is based on it. Vacation doesn’t mean a vacation from autism. As I write that out it makes my heart beat a little faster as the anxiety heightens. But it’s my life. It never goes away, ever.