Redo

Last week Kyle had the best week ever! Every single morning Kyle was good-on Thursday AND Friday he even walked on the bus with NO help from James! πŸ‘Every single day Janine walked off the bus with a smile saying how great Kyles day was! πŸ˜ƒ

This week. And it’s only Tuesday. Not so great😏. Yesterday was rough getting on the bus. It’s the first time in a while james has had to muscle kyle into his seat. And Janine walked off the bus yesterday saying in her sweet Janine voice, “well, last week was definitely better” followed up by a positive “but he’s just testing us!” She’s always so nice about it! πŸ€¦πŸ»β€β™€οΈ

This morning was one of his worst (I feel like i say that a lot) getting on the bus days. By far. He started out mad. Why? No idea. I have some guesses. But that’s all it is. I had what seemed to be everything he requires to get on the bus. His iPad. His backpack. A piece of candy. And his giant blanket he insists on bringing every morning. So why he was so upset, only Kyle knows.

James struggled several times to get Kyle on the bus, while Kyle screamed as if someone was trying to sever a finger of his. πŸ€¦πŸ»β€β™€οΈ All this at 6am. I’m sure my neighbors loved it. 😩 i stood in the bus praying Kyle would just get on and that James wouldn’t hurt himself! Every-time James tried, Kyle would get more upset. It was going on 10 minutes of full blown meltdown mode. Kyle was sitting on the ground in front of the bus (still crying)and Janine asked the super awesome bus driver, Sue, if she could leave and pick up a few students and come back around and try again after Kyle was settled down. Sue, thankfully, didn’t even hesitate! πŸ™πŸ»

The bus drove off with all of Kyles stuff and Janine! James picked Kyle up and guided him back into the house-all while Kyle was still screaming. Screaming really loud. Once Kyle was back inside, it only took maybe a minute and Kyle was calm again.

We sat in silence. I think we all felt a little defeated. After a few minutes I talked myself into starting over. I started to prime Kyle for when the bus would come back. I told him over and over and over, “when the bus comes back you need to get on the bus nicely.”I said this probably 50 times. He listened intensely. I know he was really trying to process what i was saying. He sat on the couch near the window and waited quietly for the bus.

The bus showed up about 10 minutes later for round two. I crossed my fingers and prayed hard. Low and behold Kyle walked out to the bus and up the stairs all on his own! James stood at the door with Gooding. It took 5 minutes and a lot of “you can do it” and “keep going” and ” first sit in your seat then you can get your candy”! But he did it. He got on the bus and sat in his seat. No screaming. No fighting.

Today I was once again reminded that people are placed in Kyles life not by chance. God loves me and he knows my life is hard. He places people in my life to help ease my burdens. Sue, the bus driver is most definitely supposed to be Kyle’s driver. Not all bus drivers are patient and kind and willing to go above and beyond- like come back for round two after sitting in front of my house for over 10 minutes the first time! Janine is most definitely supposed to be Kyle’s bus aide. She knows Kyle so well that she knew he had reached his meltdown point of no return. I’m grateful she spoke up. And Kyle was able to get on the bus successfully in the end. She knew he just needed a redo.

In moments like this morning when I want to quit. When I want to throw in the towel. When I am so frustrated with not knowing why some days are easier than others with the bus. When my patience is thin. When I feel defeated. Kyle reminds me (in his own special way) that sometimes all I need is a moment to regroup and start over. A redo. A moment to recognize my blessings amidst the trial. I can do this! ❀️

Small and simple things…aren’t really small and simple.

Kyle has had a rough start this school year. I’m sure it’s been a combination of a thousand different things. And it’s a guessing game when it comes to what those things are. 😝 it’s been a bit discouraging and definitely emotionally draining to hope Janine walks off the bus saying something other than it wasn’t a good day.

To top it off a couple weeks ago I got an email from Kyle’s teacher saying he’s been “stripping” at school! πŸ€¦πŸ»β€β™€οΈ just the email every mom wants to receive, right?! He does this when he’s anxious (Cuz that’s an appropriate response when anxious 😩) It’s usually a quick pants down and then back up but none the less not the best thing to do in front of a bunch of high school students! She was so sweet about her concern for, first and foremost, his dignity. But also for those other students that get the honor of witnessing it! πŸ€¦πŸ»β€β™€οΈ

She suggested we start putting him in some sort of leotard, that way if he did pull his pants down or tore his shirt off nothing would be exposed. And start putting him in shorts that weren’t as easy to take off and add a belt. The only concern I had was taking his independence away in the restroom (now he’d need a lot of help getting all the layers off). But I agreed to the change! Cuz obviously something needed to happen!

I hopped on amazon and ordered wresting singlets and a bunch of new shorts and a belt! And last week we started Kyles new and improved wardrobe! I was expecting a huge fight with this change. But thankfully he didn’t put up too much of a fight! It added a few more minutes to the morning routine and the bathroom experience is super annoying and long but we will adapt!

The first day he wore the singlet and new shorts, shanda text saying he did really well! And guess what….NO STRIPPING! She said she even thinks he liked the compression, she thought he was getting some sensory needs Mets with it! Bonus!

Then, all week long, Janine got off the bus and said “great day!” Every day last week! He was good every single day! On Friday night I got the best text ever:

After a long month of discouragement to get a text like this gives me the boost I have desperately needed. The boost to keep trying new things with Kyle. The boost to not give up. The boost to never stop expecting progress from Kyle. The boost to just keep going! The boost of energy! The boost to be more positive! Just a plain ol mental boost I had been needing!

I have learned through Kyle that sometimes small and simple things really aren’t small and simple at all! I’m grateful for teachers that text me and probably don’t realize the huge impact it has on this mom. I’m grateful for the trials Kyle throws at me. I know that through the trials comes strength! I’m grateful for progress in Kyle AND me. I’m grateful for a week full of good days for Kyle and am gonna hope we have more good weeks than bad…but if we don’t we will keep trying. ❀️

Dear diary…

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.

Ugh…2nd day of 10th grade

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. πŸ€¦πŸ»β€β™€οΈ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. πŸ€¦πŸ»β€β™€οΈ 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) πŸ˜‚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 πŸ€·πŸ»β€β™€οΈ. 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. ❀️

One step at a time

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. πŸ€—

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 πŸ˜‰)-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.

Gooding!

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!!! ❀️

Good morning!

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! πŸ™„ so that’s what I’ll do-focus on the lessons and being grateful for those lessons that Kyle saves special for me! πŸ˜‰

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 πŸ˜‰ 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! πŸ˜‚

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!🀨