Work in progress

January 3 2019

It’s Whitney’s birthday today! Luckily she is only 5 and is ok with a family “party”. Even still the thought of extra people over gives me slight anxiety knowing kyle will feel extra anxious! 😩

BUT, I forget sometimes all the progress he’s made with family “parties” since Gooding has joined the family! Kyle has made so much progress in this area. He is able to cope much better with all the chaos that comes with a family get together.

We had a lot of people here today and even some of the older boy’s friends came over and Kyle did great! He didn’t throw up. He didn’t strip. He didn’t meltdown! He was even able to eat dinner amongst all the noise! That is HUGE!

Sometimes I forget to give Kyle credit for progress in areas of improvement because life is still hard in so many other areas. BUT I need to do better, because today was a success. Kyle was successful at another family get together. Kyle did so well. His sister was able to have a birthday party and I was able to run it. I didn’t have to stop and tend to Kyle’s meltdown. Grandma didn’t have to go sit with Kyle upstairs. I was able to enjoy the party!!! Kyle was able to be downstairs when he wanted and go upstairs when things got to be too much. That is a definite WIN!

It’s so important to recognize the steps forward. The improvements. It helps make the tough times bearable. Who knows what tomorrow brings but who cares, today was good.

Kyle is a work in progress and always will be, but aren’t we all?

Transitions suck

January. 2. 2019.

If Someone could come up with a pill that would cure Kyle of his transitional anxiety, I’d pay a million dollars for it. It is the worst. And every single thing is a transition for Kyle. Every thing. From someone at the door to walking in from playing outside. Even things he likes he still gets sever anxiety over transitioning over to it.

Being out of school and off his routine has only exacerbated his transitional anxiety. What does that mean? It means he melts down quicker. It means he thinks he wants to go outside only to find out it’s too much but he can’t quite transition back into the house. So off comes his shirt. And cue the crying and sitting on the ground with no shirt no socks or shoes in the cold. It means he asks for food every 10 minutes from the moment he wakes up-he’s insatiable. It’s how he copes. But i can’t let him eat all day-so that means a lot of meltdowns. And this is all before 9am!

Today he went to my moms for session with Erika-it was a nice break! But coming home he had a hard time….transitioning! He had somehow taken one shoe off in the car on the way home and i couldn’t find it. He finally made it in the house, but wouldn’t stop obsessing over his lost shoe (that he took off and threw, btw)! So Erika finally went outside to search for the missing shoe while I fixed his dinner!

After a few minutes she walked in with the missing shoe! But that wasn’t enough! He still kept asking for the shoe…we gave him both shoes to which he took and threw next to the shoe bin by the front door. Then he was fine. Huh? But this whole process of him transitioning home took a good 30 minutes. It’s exhausting.

I’m ready for this winter break business to be over! A week and a half left! I can do it. I can do it!

Just super long days and lots of practicing my patience. And praying someone comes up with a pill to cure kyles transitional anxiety! Cuz it sucks!

Go to sleep

January 1st 2019.

One of my goals for 2019 is to write a blog post or a journal entry everyday. I love reading back and seeing the progress in Kyle and my evolution as his mom too. I’m sure some days will be more thought provoking and interesting than others but for me, every post will mean something. So here it goes….

Guess where I am at 7:38 pm? In Kyle’s room laying next to him who is wide awake still. He yawns every few minutes. But awake none the less.

James and I had plans of going out tonight. A nice dinner. Ya know, start the new year off talking about our goals for the year and just enjoying the quiet! We planned on leaving an hour ago. But we can’t leave until Kyle is asleep. So here I am, waiting. Trying to wait patiently while my tummy growls in hunger.

Kyle goes to bed around 6:30 every night. He has for years! Sounds early but the boy is non stop all day. By 630 he is ready. And i am ready for him to be ready! Not to mention he is usually awake by 6am every morning….no matter what time he goes to bed!

It’s now 7:46 and I’ve been in his bed for one hour and 16 min. I think he’s asleep.

As I sit here slightly annoyed that it took so long for him to fall asleep I can’t help but feel grateful. Grateful that he sleeps at all! So many parents with kids like Kyle don’t sleep. I can’t imagine! Life would be so much harder if Kyle didn’t sleep. So…I’m grateful now that Kyle is asleep for the night, James and I can still go out and have a nice dinner! It’s just a little later than we planned. I’ll take it.

Twenty one (three) days

It’s only day two of Kyles 3 week winter break from school. Yup 3 weeks. That’s 21 days (23 if u count this weekend too, which I am). Almost a month. Basically an eternity. He’s already antsy. He’s already made me want to run away too many times to count. And I still have 21 more days. Twenty-one.

I know I’ll survive, I always do. I don’t really have a choice. But sometimes I get overwhelmed and I start to feel myself slip into a pity party.

I start to think of all the meltdowns and all the times he will ask to eat even though he’s not hungry. Or all the times he will pace my house and his anxiety will spill onto me and cause my anxiety to spike. I start to think about the long days at home and the errands I can’t run. The videos he plays on his iPad over and over and over on full volume of course. Or the amount of shirts he will throw over into the neighbors back yard and cry cuz he wants it back-why does he do this…well I’m still not sure why he does that but I know it’ll happen more than once during these 21 days! When I think of this I start to feel sorry for myself. I start to feel sad.

It’s a slippery slope though. Feeling sorry for myself and wishing my circumstances were different. It’s not a fun place to be. I hate feeling like that. I hate feeling sorry for myself. It’s a crappy place to be. It’s not a place I like to stay for very long. Life seems harder when I’m there.

I’m laying by Kyle right now and he is breathing heavy in my ear as he slips into sleep. I do a lot of my thinking and reflecting about the day when I’m laying next to him at night. As I read my above thoughts and listen to Kyle breathe I’m quickly realizing how I need to stop. Stop feeling sorry for myself. Stop feeling sad. I need to snap out of my funk.

I don’t know why God made me Kyle’s mom and you better believe I plan on asking Him as soon as I get up there! But He did and I do know I will survive these 3 weeks, cuz I always do. He always provides some sort of way. I definitely don’t do it alone! The next 21 days will probably be long and some will be harder than others. But I am going to make an effort to embrace it and pray super hard for patience and love Everyday so when the shirt goes flyin over the fence or Kyle asks for chips 10 minutes after he eats lunch and has had 31 snacks I don’t go too crazy!

3 weeks. I got this. I can do it.

I will be writing this on several post it notes and placing them all over my house! 😀

What’s for dinner?

Tonight I made spaghetti. To most people that doesn’t mean much other than yum. To me that meant extra laundry. Mopping my floor. And cleaning my shoes.

Kyle has always had a sensitive gag reflex. Hence the excessive puking he does. He has also always had sensory issues. Certain textures cause him to immediately gag. Even just looking at certain things trigger the ol’ gag reflex on kyle. It’s super awesome.

Play dough and…you guessed it SPAGHETTI have always been big triggers for him. So I try hard to have him not around for either. Whitney knows she isn’t allowed to play with play dough when Kyle is home and my kids know to hide their spaghetti if Kyle comes downstairs before dinner is over. My poor kids. 🤦🏻‍♀️

Tonight I wasn’t paying attention when he walked downstairs and Justin was still eating. Justin obviously wasn’t either. Kyle took one look at that spaghetti and the puke face quickly turned into gagging which then turned into full on puking. On my shoes. On my floor. All over him. Then he quickly stripped and walked upstairs in his undies. I looked at the mess and wanted to cry. Cleaning up throw up has to be the worst thing ever. And you would think I’m used to it by now. But it still sucks every time. After I used an entire roll of paper towels slopping it up, I mopped up the floor. I walked upstairs where Kyle pointed at his bed where I found…more throw up. 😩 how does one throw up this much over just looking at spaghetti?!

I had to strip his sheets, mattress cover, all three blankets AND his weighted blanket (which is super annoying to wash btw). All were covered in puke. Like, a lot of puke.

It’s Monday night at 6:27 and I’m exhausted and ready to tap out for the week. Did I mention he was a punk this morning?

I’m gonna end this post by listing 3 positive things that happened today. Cuz right now all I can think of is how I don’t want to wake up at 5:20 tomorrow morning and do life. 😏

1. I got to spend the morning with one of my favorite people, Johanna. We made cookies and chatted! I love my time with her. She always makes me smile and I’m guaranteed a good laugh! Positive!

2. I found a bunch of stuff on amazon for Kyle for Christmas-he’s the worlds hardest kid to shop for! And I think I’m done shopping for him now! Positive!

3. Whitney loves this song we found on YouTube called peace in Christ and she sings it in the car and knows all the words to the chorus. Her and her little friend Mckenzie sang it on the way to prek this am. It may have been the sweetest thing ever listening to their little voices, I had to hold back the tears. Good tears. Positive! The chorus goes like this:

He gives us hope

When hope is gone

He gives us strength

When we can’t go on

He gives us shelter

In the storms of life

When there’s no peace on earth There is peace in Christ

I’m gonna go listen to that song now. ❤️ And get up tomorrow and have a good day!

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! 👏Every single day Janine walked off the bus with a smile saying how great Kyles day was! 😃

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! 🤦🏻‍♀️

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. 🤦🏻‍♀️ 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! 🙏🏻

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! 🤦🏻‍♀️ 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! 🤦🏻‍♀️

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. ❤️