Sometimes I daydream of what life would be like if Kyle was normal. Today as I drove to the school to pick him up because he had a meltdown on the way to the bus-he saw a white car that he probably thought was mine, I started to day dream.
What would life be like? I’m willing to bet it would be better than it is with autism and fragile x.
Sure, I’m hoping for a better tomorrow. And tomorrow probably won’t be as bad as today is. But it still will never be as great as if fragile x and autism weren’t a part of our every single fucking day.
Trying so hard to dig deep…I’m pretty sure I’ve reached the very bottom tho…to find hope. Trying hard to dig deep to find some sort of blessing in this horrible season of ridiculously hard. Trying to dig deep to find some positivity. Trying to dig deep to find some sort of break in life. So far I’ve come up with nothing.
Life is tough-my life is tough and I’m not so sure I’m as tough as I used to be. Come on God, help me out. Cuz I am not sure how much more I can take.
Welp. I’m sitting in front of the kids school crying. I’ve officially reached rock bottom. How much more can i take? I can’t. When does it end? Right when I think I’ve found a little bit of light, Kyle spits on that little bit of light and it’s gone. Figuratively and literally.
Shanda called to let me know Kyle sat his ass on the gym floor after PE was over and refused to get up. He sat there for FOUR hours. 4 hours. Nothing would get him to stand up. Nothing. His stubbornness is strong. He sat on the floor through an awards assembly that had to take place. I mean…how embarrassing. For him. For the teachers. For me.
I am so tired of hearing how strong I am. Cuz I’m not. I don’t want to be. Today I caved and saw my dr. Anyone who knows me, knows I NEVER go to the dr. But Ive reached my breaking point. I need anxiety medication to survive. And it sucks. To feel like you have lost control of every aspect of your life is super shitty. I kinda wanna run away. And then I think, maybe my anxiety is actually a good thing cuz it prevents me from doing crazy things like…running away.
I feel super guilty. Because of my inability to “be strong” my family suffers. My husband. My kids. It sucks. Pull it together, Katie.
Being Kyle’s mom is hard. It sucks. And today there isn’t an ounce of me that is grateful for the trials it’s given me. Today I feel sorry for me. Today I feel sorry for my family. Today I wish autism didn’t exist. Today I wish fragile x and anxiety weren’t part of our life. Today I wish Kyle was a typical 16 year old who came home from school in a car he drove home in. Today I wish I didn’t have to go on anxiety medication to cope with the struggles of my life.
Kyle gets home in an hour and I’m dreading it. In order to stay consistent I have to take the iPad away. This means more work for me. More hard. More meltdowns. And marie is coming. I’ve canceled the last two sessions cuz I couldn’t handle having her here.
Everything with Kyle is work. And I’m exhausted. Not like exhausted after a long day with kids. Like I wake up exhausted and go to sleep exhausted. From sun up to sun down is work with Kyle. It never ends. There are no breaks. When he’s at school-I’m still thinking about the list of dr appts I need to make, or forms I need to fill out or or or! When he’s at his dads for a whopping 3 days a month, I’m thinking about the rough transition I’ll be dealing with when he comes home. It never leaves. I’m exhausted.
I’m not sure why God picked me to be kyles mom. I question that daily. And on days like today, I question it even more. I have nothing left except to pray so I guess I’ll stop writing and start praying super hard that the heavy burdens I’m carrying are lifted soon. Like real soon. Cuz rock bottom sucks.
I am trying to establish stricter boundaries with Kyle. Which means translates to a whole lot of blood sweat and tears and mine and kyles part. He is losing access to the iPad now when he isn’t behaving. He understands completely but he is also stubborn as hell.
Erika was here today and within the first hour of her being here, he threw his shoes, a crayon and his cup. So away his iPad went. It was a long day.
After lots of follow through we made it to bed time. Erika walked down this evening and said, she forgot how stubborn he can be and how exhausting it is. I’ve never felt more validated.
I am exhausted. Following through with consequences with Kyle is pure torture. But I know if I want changes in the behavior I have to endure.
I am ready for this season of really super hard, that seems to be sticking around way too long, to finally end.
Do I even need to say how today went? 😏 Apparently he had a great day at school, but the bus ride home didn’t go as well. He walked off the bus, no shoes no socks. Never a good sign. He was banging on the bus window and Janine asked him to stop-like she usually does…and for some reason that was too big of a request. So while the bus was dropping off a student and the doors were open Kyle seizes on that-He threw his iPad out of the bus doors. But didn’t stop there, while Janine was getting it, he threw his shoes AND socks out too. Then threw a fit-probably knowing he lost access to the iPad. As soon as she told me what happened I knew I had to follow through and keep the iPad away….if I want his behavior to change I have to endure the consequences with him. Suck. I had Marie still come today-I should have canceled. Rookie move. It was too much. And she still is learning what he can and can’t handle, especially on a no iPad day. By the time bath time came he was in full blown meltdown mode. And I was in no patience left mode. We survived bath time and pajamas…barely. Now we lay here. Him trying to relax and fall asleep and me over thinking of course. Sometimes I question if I’m doing the right thing? Sometimes I question if I’m doing enough? Sometimes I question if it’s something I’m doing or not doing that is preventing Kyle from getting easier. I know I’m not supposed to compare but I read other people’s posts about their kids with autism or fragile x and they are thriving and are able to do so much more-it’s hard not to question why we aren’t at that place. What am I not doing right? Don’t get me wrong, Kyle has come far. Like really far. I guess i just wish it was further and his progress would come at a faster rate. Being Kyle’s mom is a tough gig. I guess it’s a good thing there’s tomorrow. Since giving up isn’t an option, we’ll wake up and try harder tomorrow to get further….and try not to throw iPads and shoes out of the bus. 🙄#shouldabeenablogpost #autism #fragilex
Sitting in my room listening to my 16 year old cry himself to sleep-which isn’t any easier than listening to your baby cry him or herself to sleep! It sucks. I made the mistake of thinking he was asleep and walked out of his room too soon. He probably would have fallen asleep but the boys ran up and down the stairs grabbing last minute items before running out the front door to youth group. Kyle heard them of course and was up and out of bed in 3 seconds. Probably making sure it wasn’t me leaving but then was wide awake. When I went in to get him back into bed he freaked when I wasn’t going to start the long routine of laying by him all over again! How dare I leave and make him fall asleep alone!
So, yesterday sucked. Not the same as tonight sucking, but it sucked. I had several sweet friends check on me via social media and texts through out the day! I even had one Venmo me Diet Coke money! How sweet is that! 😂I really have great friends. I get emotional when I think of how great my friends are in cheering me on.
Tonight as I sit here listening to him cry and feeling completely defeated I can’t help but think of the questions most people asked today when they texted me…so was today better? And in an attempt to sound more positive than I actually am feeling I said yes it was better. And I guess it was better. He only sat on the sidewalk outside the school for 5 min not 3 hours. 😖But if I’m being brutally honest. Like how I really feel at this moment it’s this…every effing day sucks. Some days suck more than others. But every single day sucks to some degree. The suckiness never goes away.
I wake up everyday and have to try to convince myself that today doesn’t suck. And some days I’m super good at it. Some days I can talk myself into believing that it actually doesn’t suck having to fight every single day with a child who has the cognitive ability of a 2 year old but is the size of an adult man. I’m not sure how I do that.
He’s finally asleep. Took 45 minutes and me going in there twice to get him back into bed. But he’s asleep. Now I can’t help but think of how this affects tomorrow morning. He’s going to bed later, which means he will be extra tired in the morning. Which usually means extra fighting.
I’m gonna have to do a whole lotta pep talking to myself tomorrow morning. See? Everyday sucks.
I’d say I need a vacation but even a vacation sounds like too much work.
Side note: I really hope no one reads this post. If you are reading this, This is me. Raw and real. And probably should have written this in a personal journal. But this is my personal journal so….
Pray for me. No iPad for this boy. From the moment he woke up this morning I knew it was going to be a rough one. Janine said he got off the bus this morning and sat his butt down on the sidewalk and refused to get up. For THREE hours. Yup 3 hours. 🙄Why? Who knows. But it’s cold outside, especially at 7:15 in the morning. So I’m sure in about 3 days he will be sick. 😏 Which is always awesome. He didn’t get the iPad on the bus ride home, but I’m sure he assumed he would get it when he got home. He was wrong. I explained to him why he wasn’t getting it, to which he threw a minor fit and screamed at me a few times. But he understood he messed up. I expect it to get worse when marie arrives in 20 minutes. 😩Like I said, pray for me. I keep waiting for life to get easier with Kyle but it isn’t. Trying to tell myself to suck it up and look for the positive…again, but man it’s getting harder and harder to “suck it up”. Just call me negative Nancy, ugh! Another day of online shopping and unlimited diet cokes…just kidding babe on the online shopping (kinda)!😬#autism #fragilex #prayers #iwishilikedworkingoutmorethanshopping
Can I be completely honest? Today is the last day of a long 3 week Christmas break for Kyle. Who the eff thought THREE WEEKS OFF of school at Christmas time was a good idea…for any kid? Add Kyle and it takes it to a whole new level of stupid. Whoever it is, I’m coming for you. Cuz this last week has been hell. And that is not an exaggeration. I’m not sure my mental health could handle one more day of Kyle screaming “noooo” every 3 minutes. Also, not an exaggeration. The entire day, with an added hair pull, spit in my face, or throw up if I’m really lucky. This is not any different from most days even when he’s in school. But the 3 long break in routine had my patience pretty much on empty…and kyles ability to cope got less and less as the days passed.
Here we are on the eve of getting back to the return of our routine-that both Kyle and I crave. We made it. Some how we made it.
As I was fighting with him to get dressed tonight after showering him (to which he also fought me) I felt tears well up. Which isn’t unusual for me. It’s emotionally exhausting being Kyle’s mom. And sometimes a small cry helps. Sometimes it doesn’t help but I do it anyway! But I got up and wiped my tears. At that moment I thought to myself how hard every single day is and it will never go away. I will wake up everyday and have to do the hardest thing I’ve ever had to do over and over.
Most people don’t know the struggle I go through daily being this boys mom. I love him with every ounce of my being. But it is so hard. And some days I don’t want to do it. And that is so hard to admit. But it’s true. The hard will never end.
Motherhood isn’t what I expected. Some days I feel cheated. Hell, most days I feel cheated. Kyle sucks a lot out of me, mentally.
After I finished bathing Kyle and got him settled in his room watching Mickey Mouse club house I walked downstairs and sat at the table with Justin, Cody, Whitney and James. We sat at the table and drank milkshakes and laughed and talked. I love these moments cuz I feel like we are a normal family. Even if it’s just for a few minutes. I treasure them.
Tomorrow Kyle goes back to school. I feel relief but also anxiety. Kyle has been out of practice for 3 weeks. Which probably means the bus isn’t gonna be fun. Ugh.