Sometimes when I think past tomorrow with Kyle, I panic. How am I going to do this forever? I’m exhausted most days. Mostly emotionally exhausted. But exhausted none the less.
I’m laying here next to Kyle after a long Saturday. Wasn’t necessarily a bad day. Just long. He asked for food about 3 million times. And cried every time I said no. It’s trying on my nerves to have to hear him cry several times through out the day. Then as I struggled to get him into bed tonight, I started to do what I don’t normally do…think past tomorrow. And started to panic.
Most days I don’t think about how hard it is. Or how it will never not be hard. Most days I just do it, I just BE Kyle’s mom. But tonight I let my mind wander.
What am I going to do when Kyle graduates high school? Will i ever not be emotionally exhausted? What am I going to do if his dr, who is amazing and makes a special appt for Kyle on SATURDAY when no one is in the office, decides to retire? What kind of adult is Kyle going to be? Will Kyle ever get on the damn bus without a fight? What happens when Janine isn’t his bus aide anymore for whatever reason? Am I going to have to lay by Kyle forever for him to relax and go to sleep? Is he going to live with me forever? What happens when I get old? What will happen when I die? 😢 Will Kyle ever get over his separation anxiety with me? Will I ever not feel guilty leaving him with other people? Will he ever be independent? What does Kyles future look like? Is Kyle happy? Am I the best mom for him?
As I lay next to him typing away on my phone, him playing with my face almost asleep, these are some of the questions that are racing through my head. And I don’t have the answers to any of them, which is probably why I don’t allow myself to think past tomorrow when it comes to Kyle.
He’s finally asleep snoring next to me. I guess what I do know is that even though it’s freaking hard every single day. And I’m exhausted most days. I love this boy more than anything. I love what he has taught me thus far. And I love what he will continue to teach me…..tomorrow.
Well…yesterday went pretty good-for the first day back after two weeks off. We started a new routine hoping to eliminate some of Kyles transitional anxiety. He sat outside on a chair on the edge of the grass where he waited for the bus! Erika made a social story that we read over and over leading up to that point! He still struggled getting on the bus BUT James didn’t have to drag him (so to speak) kicking and screaming up the stairs. He didn’t puke and he even kept his shirt on! When he got home Janine said he had a great day! So all in all I called it a win.
Today. Today was NOT a win. We did all the same things as yesterday except for some reason he wasn’t having it today. James got him on the bus (shirtless) and as soon as I walked off the bus he….threw up. 😩 Thankfully Janine is amazing and is used to Kyle. The new bus driver, who said yesterday that Kyle “wasn’t so bad” quickly realized some days definitely can be bad. 🤦🏻♀️I ran in got a towel and did a quick clean up job on him and the floor. Janine said not to worry about him she’d change him at school and do a better clean up job. I walked off the bus feeling defeated.
Why can’t he just get on the bus? Why does he have to do this? Why can’t he be a teeny tiny bit easy? Why? Why? Why?
The afternoon arrived and my anxiety started to surface as I waited for the bus not knowing how the rest of his day went. I usually know by the amount of clothes he walks off the bus in. He had no shirt on today. 🤦🏻♀️ And Janine immediately said he had a rough day. All day. He threw up several times at school. And was just a punk throughout the day. Then when it came time to go home he got outside and threw his backpack and himself on the ground in protest and had to be “helped” onto the bus! 😏 Which then just makes him more mad that he isn’t able to protest the way he wants.
I hate these days. I hate them. My guilt goes into overdrive. I feel guilty that my kid is THAT kid. The kid that is hard. I feel guilty that Janine had to ride the bus with my kid covered in puke. I feel guilty that all day my kid was hard on his teachers. I feel guilty that while he’s at school he’s not my burden. I feel guilty that I look forward to that time. I feel guilty that I have no control over my child’s behavior.
When we got into the house I decided he wasn’t getting his iPad. I’m not sure who I was punishing more. Him or me? Sometimes I don’t hold him accountable because I’m not always sure he understands consequences? Or maybe because I understand anxiety so I give him a pass? I don’t know…but today I felt like he understood. Janine told him she was gonna tell on him today and he told her no! And proceeded to kiss her arm (smarty pants) 😂So all afternoon and evening whenever he asked for the iPad I simply repeated “no iPad because you threw up on the bus and at school. You can have the iPad tomorrow when you get on the bus nicely.”For the most part he accepted it and only melted down a couple of times. Mostly he was defiant when I asked him to do something. 😏
Tomorrow my hope is he will be so focused on getting the iPad that he’s been without for a full day that he will get on the bus without a fight. It’s worked before so 🤷🏻♀️. If not I guess we endure another long day of no iPad! 😩 because I have to follow through now! 🤞🏻
Autism sucks. Fragile x sucks. The whole getting on the bus sucks. Sometimes I look at my life and think how in the world do I keep finding hope for a better day tomorrow? I guess some days that’s all I have…hope for a better tomorrow. ❤️
I know it’s been a minute (maybe a few) since I last posted. And I really want to share with you all the journey thus far with Gooding. Which has been (mostly) great. But I want to make sure I do that post right. I want to be honest and raw with you all! So it might take a few more minutes til I get that post written! I know such a teaser….but in the mean time, here’s a video of Kyle walking to the mailbox. 🤗
We have been working on this task for a month or so. The first time he DID IT, but there was crying and spitting and he dropped to the floor ( he got up quickly, but he still dropped), and we had to bribe him with a trip to McDonald’s to get him to finish the task the other times we did it. And he still struggled the whole way through. Gooding helped (i know you all are asking 😉)-there is no way he would have even been able to get half way down the drive way before Gooding arrived! But this is all new territory for Kyle so he still needs lots of practice!
To many this is a small and simple task, but to Kyle it’s huge. He has to overcome anxiety, lots of transitions, and the sensory overload that a simple walk to the mailbox and back causes.
Today, Kyle did it! He walked to the mailbox and back with Gooding! And with not one single meltdown! He even wore the tether we have been trying to get him to wear that he hates! It was so cool watching him walk with Erika and Gooding. 😭 I was so proud of him. I never thought a walk around our neighborhood with Kyle was in his cards. But I was wrong! And I look forward to the day we can take a walk around the entire block as a family!
Sometimes when the days are long and little progress is made or the progress is hard to notice I get down. I get discouraged. But today Kyle reminded me that hard work and patience ALWAYS pays off. Because today Kyle walked all the way to the mailbox and back home with a smile almost the whole time! Today was a great day.
Today Kyle’s service dog Gooding arrived!!! I’m not sure I can put into words how truly amazing it was. I think My eyes watered more than a few times throughout the day watching Kyle’s instant connection to this sweet dog.
I knew the meeting would either be love at first sight or Kyle would want nothing to do with Gooding at first. I was prepared for either outcome! Instead of describing the moment here it is. My heart swells every time I watch it. I’m so exhausted from today-we did so much! We went to petsmart WITH Kyle! He did so well too! He dropped to the ground a couple times but as soon as Gooding came by him he was back on his feet! At the end Kyle struggled with transitioning back to the car but with the help of Gooding just being next to him gave Kyle the reassurance he needed! He was up and back in the car as soon as i was done paying! 😭After petsmart Cheri (the trainer) convinced me that we should try another outing! So off we went to McDonald’s…WITH KYLE. Inside. We sat at a table INSIDE WITH KYLE. You guys! He did so awesome! Watch!!!
Most of today was spent outside! Kyle wanted to play outside with Gooding every chance he had! He was on his iPad maybe a total of 1 hour (and that’s when I took Gooding to the vet)! The rest of the time was outside!!!!!
My cheeks hurt from smiling! And I’m betting Kyles do too! My mom heart was bursting at the seems today. I have never seen Kyle this happy. He kissed him about a thousand times and made sure that we knew he did NOT want Gooding to leave!
I knew that a service dog would benefit Kyle but honestly I had no clue to what extent. Today I was shown a piece of what the benefits will be and they exceeded my expectations!!! Tonight as I reflect on this journey to get here, I am feeling so grateful to everyone who made this possible for Kyle. Grateful to all of my friends and family who rallied behind our family and helped this become a reality! Thank you!!!! Gooding is going to be life changing for Kyle. And for my family!!! ❤️
I decided to document my morning routine with Kyle. Watching it back I found myself getting emotional. Emotional thinking about how far I’ve come as Kyles mom. How much I’ve learned about myself. About how much further I have to go. About how much more I have to learn. It was a lot of different emotions. And with Kyle that is often the case.
As I watch this, mostly I feel proud of myself. I’m proud of the mom Kyle has molded me into. I’m proud of all the battles I have endured being his mom. I’m proud of the patience I have to dig deep to find day in and day out-cuz I’ve learned if i get upset it only makes my life harder. I’m proud of myself for waking up every morning and doing life-especially on days that I really want to give up (and there are many days that giving up sounds way better). I’m proud of the knowledge I have gained through trial and error-which has helped me better mother Kyle and my other kids!
I’ve said this before, when I got that diagnosis of fragile x and autism 11 years ago, I wanted to immediately “fix” kyle. But over the years I’ve learned that he wasn’t sent to me to be “fixed”, he was sent to “fix” me. To teach me to be a better person. A better mom. A better wife. A better friend. He is definitely the one doing the fixing!
We have many more years to go, filled with good and bad seasons. And I have many more years of lessons to learn and more patience to gain. Life is definitely not easy with Kyle even when I change my perspective. It’s HARD. Everyday. But trying to focus on the lessons and being grateful makes it a teeny tiny bit easier when he refuses to stand up in the mornings or when he is laying down and refuses to help me as I try to dress him! 🙄 so that’s what I’ll do-focus on the lessons and being grateful for those lessons that Kyle saves special for me! 😉
Our morning routine. This is every single morning. It usually takes about 10 min. And he doesn’t help at all in fact he usually tries his hardest to make it near impossible to get him dressed!
The next battle 😉 is getting him to get out of bed and downstairs. If it was a Saturday he’d be up and at em at 5 am no problem! But school days he is all the sudden so tired! Usually threatening to get James is enough to get him to stand. James is not part of the routine so he doesn’t want James even near the room! Luckily it works most mornings just saying I’m gonna go get him! 😂
Then we move on to going downstairs to start that part of the morning routine! Trying to get him to be quiet is quite the task! He can’t seem to help himself with that echo going down the stairs. But man he is soooooo loud!
After breakfast he has about 10 minutes he can watch tv (the same exact episode of blues clues). And I prime him (which means telling him what is going to happen so he knows what to expect) over and over again. Usually we go over this about 10x. Then the bus comes….😬 we all know how that goes! Still working on perfecting that!🤨
I thought about just updating my last post but decided this deserved a separate post.
As I was walking up the stairs tonight to put Kyle to bed, I could hear Kyle giggling as Cody pretended to wrestle with one of Kyles stuffed animals. Kyle would reach out to try to get Cody and laugh and laugh. There’s nothing sweeter than hearing Kyle belly laugh (except maybe him getting in the bus without a fight 😬)!
I stood at the top of the stairs for a few minutes and watched before I went in to break the news to Kyle that it was bedtime. Cody immediately said, “can I try to put him to bed?”
My immediate thought was no Kyle wouldn’t go for it, especially because they were just wrestling! But I stopped myself. I said, “ok you can try!”
Kyle was confused and was definitely not 100% on board but he got into bed, still giggling and trying to wrestle with Cody! Cody covered him up and kept telling him that it was time for bed, just like I say. I turned the light off and shut the door. I stood outside the door and listened with a smile as Cody so sweetly and softly kept “shhhhhing” him and then began saying “good night grandma, goodnight mom, goodnight James, etc” like i sometimes do to get Kyle to calm down. I didn’t give him much instruction so he did this all on his own from hearing me. He was in there for almost 10 minutes before I opened the door to take over.
He laughed and said “I tried mom!” And I told him it would take lots of practice before Kyle would be comfortable and be able to fall asleep with him. Enthusiastically he said, “ok, let’s try again tomorrow! And the next day! Because I want to be able to put him to bed for you.”
Tonight, once again I was taught by my son. He reminded me that it’s ok when things don’t go perfectly. We can try again tomorrow. And the next day. And the next. But it’s important to keep trying. So, tomorrow I will wake up and try again to get Kyle on the bus. And if it doesn’t go perfectly, it’s ok. ❤️
Sometimes it’s extremely hard to stay positive. Sometimes it’s hard to think Kyle will ever just walk on the bus without a fight. Especially after this morning, when it took 15 minutes of struggling and crying and snot. Lots of snot. And eventually the bus driver and James had to each take an end of Kyle to get him on. 🙄And did i mention it was raining. So he was sopping wet when he finally got into his seat. Granted he’s a little rusty and has been out of practice for 3 weeks….but this doesn’t make it any less frustrating. 😏
Every behavior theory says that because we follow through every single time no matter what behavior he pulls, he should be getting on the bus by now with no problem. 🙄BUT Kyle’s anxiety throws every behavior theory out the window and then stomps on it. His anxiety is so high that it doesn’t matter what we do. I can reassure him a 10000000 times. I can tell him what to expect. I can hold his hand. I can offer him the biggest, sweetest candy. I can offer him his favorite-Cheetos. I can show him the most detailed social story! And yes, he’s on medication. It doesn’t matter some days (by some i mean pretty much every day) it’s like the anxiety takes over and controls his every move.
As a mom, I watch Kyle struggle every morning with the bus. All i wanna do is burst into tears. Or yell at him-even though I know that won’t do anything but make it worse. Or curl up in a ball in my room and pretend i don’t have to deal with this daily. It’s hard not to want to just give up the bus completely. I feel guilty that I need so much help when it comes to the bus. I feel guilty that my husband (who is the most amazing guy in the world) has to struggle with Kyle every morning. I feel bad that MY son is causing other kids to be off because now the bus is late picking them up. I feel sad that i can’t fix this. Basically I walk away from my morning fight, a ball of emotions and on the verge of tears most mornings. But despite all these feelings, I pull up my big girl panties dry my tears and tell myself I can do this again tomorrow. 😩
I’m trying to find the lesson in this trial because sometimes that helps me stay a little bit more positive. But I’m having difficulty in finding what lesson I am supposed to gain out of this.
Just get on the damn bus, Kyle. WITHOUT a fight. 🤦🏻♀️ Please.