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.

This kid

It has been a long week. James and the boys left Monday at 4am and didn’t get back til Saturday evening. It has been a long week. By the end of today my patience was super thin-or all gone and I was counting down the minutes til this guy went to bed! He screamed “nooooo!” about 3 million times during his bath and another million times when I was trying to get his jammies on. Ugh. But then came bed time. He didn’t fight me and crawled right into bed-i think he was done with today too! He snuggled right up to me tonight and kissed my cheek and my arm a million times-as if he was saying sorry for the million times he screamed no and refused to lift his foot up to get dressed! At least that’s what i interpreted it to mean! And yes i forgave him! 😉This kid. Even though most days are long (extra long this week) and hard, I’m still glad I get to be his mom. And I’m super glad he has school tomorrow! #autism #fragilex

Worst enemy

First day back at school. He woke up smiling. He got dressed. Pretended to fall back asleep while I got everything ready downstairs. After I came back up to tell him he needed to come downstairs he shot out of bed and looked out the window just like he usually does! He saw Janine was already here…and Fonda. James and the boys are at scout camp for a week 😩so I had to call in the big guns. As soon as he saw them I felt his anxiety…and then he coughed and then came the puke. Today was different. He’s been off of school for 3 weeks. James is not here. Fonda was. And now he has to relearn the routine with a new bus driver! That’s hard. It took him a few minutes but he made it downstairs and onto the bus with zero issues! Thank goodness for Fonda.

Then came the dreaded call from Shanda at 12:30 letting me know he puked all over himself and his shoes-he wasn’t able to ride the bus home. I needed to come get him. Ugh.

Anxiety is Kyle’s biggest enemy. It shows itself in a million different ways and he can be happy or sad or seem fine or seem upset but anxiety will creep in. It sucks. I think it sucks the most because I can’t fix it. He’s on meds. He’s on cbd oil. He’s on essential oils. He takes magnesium baths. Sometimes I think I’m crazy with everything I try in hopes to relieve the anxiety. But nothing takes it away completely. . And as his mom it is probably the hardest. I feel so helpless. Completely helpless.

He will establish a new summer school routine and his anxiety will naturally ease. But then summer school will end and he will have 2 more weeks off til the regular school starts…and we will have to start over, again.

I understand on a small scale of what he suffers because I have anxiety too. Which makes it all the more painful watching him suffer through it. I wish I could take it away. But that’s not an option. I just have to help him through it.

Anxiety sucks. Establishing new routines sucks. James being outta town for a whole week sucks. But this video of Kyle doing Daffy Duck today makes me smile. So here’s to hoping and praying hard for a better tomorrow. #autism #fragilex #summerschool #ishouldbuystockindietcoke #coping

June 27 2019

4 more days. I’m including today. Cuz the day isn’t over yet. Kyle starts summer school Monday morning! 🙌🏼 Today we took our drive and stopped at McDonald’s. I moved him to the other side (which was no easy task btw. He fought every time we got in the car for a good week 😏), so no socks, shoes or any other objects were thrown out the window. Yesssss! BUT…he still gets super anxious as soon as I get to the window to pay. Today the kind young girl was repeating the order back to me and she got through one item and he screamed “nooooo!” She stopped and said “oh wrong order?”😂 I laughed and explained he has autism and just screams no until he gets his food! She laughed uncomfortably and took my money! 🤷🏻‍♀️Kyle is super good at spreading awareness wherever we go! Even in drive thrus. 4 more days. 4 more days. 4 more days. #autism #fragilex #mcdonalds #goodingwaitingforadroppedfry

Day four-the car seat battle me-1 Kyle-0

I have been trying since Monday to get Kyle to sit on the passenger side of the car. He refused every time. He would quickly get to his “normal” side and jump in and refuse to sit on the other side before i could even try to get him to the passenger side! He can be quick-when he wants to!😏

I should have known it wasn’t gonna be an easy swap. What was I thinking?!

Today I was determined. And he was determined to let me know he was pissed. I steered him into the seat and by the grace of God got him sitting in there. But then he tried to crawl over to the other seat! I buckled him. He unbuckled. He cried and I wanted to cry.

It’s changing a seat in the car, why is that an issue? Everything is a challenge. Everything is a struggle. Everything. Sitting in a different seat in the car. Ugh.

He and I sat in the car in the driveway while he cried in protest for a good 5 min. Finally he was calm enough for me to buckle him and off we went for our drive.

Let me tell ya, best drive ever. He didn’t pull my hair-cuz he couldn’t. He didn’t lean forward and try to take my glasses off-cuz he couldn’t. And he didn’t throw anything out the window-cuz he couldn’t! Whaaaat?!

I’m sure the next time he has to get in the car it will be another fight. He will probably let me know he isn’t happy about the change. It will probably take several more times before he’s used to the change. But I am gonna keep fighting too! Cuz i am bound and determined!

Summer day two.

Day two of summer school. And it feels like it’s been at least a week. I’m trying to stay positive but man the days are so long. Especially when he is still on the 5:30 am wake up schedule. It’s killin me.

BUT the iPad is still reinforcing and we haven’t had too many meltdowns. I am waking up and starting my early mornings with a run-which helps me get the right mindset to face the long day! Hopefully I can keep this up cuz it really does help. When I am mentally strong Kyle responds so much better!

Marie came today and overall he did pretty dang good. I think he’s realized she’s here to stay. She is starting to recognize his cues, which makes the session run so much smoother! Thank goodness. Time really is the key.

He starts summer school in 20 days. 20 more days. I can do it. I got this. At least I’m gonna keep telling myself this! ❤️