Yup, Kyle still sucks at getting on the bus.

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.

Family vacation (with Kyle)2017

Family vacation is not normally in my vocabulary. Let’s be honest, just the mention of it makes me anxious. The thought of bringing Kyle somewhere he isn’t familiar with and throwing in activities that are out of his routine make me cringe! But every year my kids ask if we are going to take a vacation. 😰 And every year I tell them, no…except this year!

I got brave and decided to just go for it! We didn’t go anywhere elaborate and didn’t stay for more than a couple of days. BUT I’m happy to report that We did it! We took our first ever family vacation WITH Kyle. And WITHOUT Erika! 😂 And we survived!

He did so awesome (as long as we were inside the house)Much better than I expected! He had his iPad and movies so he was happy! Bedtime and bath time were rough the first night but I kept telling myself it was ok. And guess what? It was ok. After a few times trying to get him to lay in bed, I said forget it and let him stay up! After an hour or so he came to me and asked to go to bed!

The next day I made a rookie mistake 🤦🏻‍♀️ and let him get out of the car when the kids got out to look at “inspirational point” (wasn’t too inspirational to us) and he couldn’t handle it. I’m not sure what made him upset but it progressively got worse and it turned into a major meltdown but once we got him back into the car he calmed down fairly quickly. It put a damper on the mood but we recovered and decided a vacation with Kyle means we stay at the house the whole time with an occasional drive (and he doesn’t get out)! I see a lot of monopoly games in our family vacation future! 🤷🏻‍♀️

Having Kyle on a vacation isn’t easy and adds more stress but in the end I’m so glad we did it. Even with the couple of small meltdowns and one big one, Id do it again. We made memories that we will talk about around the kitchen table years from now. Sometimes I think life would be so much easier if Kyle was “normal” (and it no doubt would be) but then I think about how dull life would be without him!

Here’s to family vacations being part of my vocabulary now!!!🥂

One year older…and wiser too! Happy birthday to you, Kyle!

Fourteen years ago Kyle made me a mom!

14 things I’ve learned being Kyle’s mom:

  1. Motherhood is way harder than I thought it would be. But more fulfilling than I ever imagined.

  2. Patience is the key. Patience, patience and more patience.

  3. My plans for my baby boy started out very different. But I have learned that a change in plans can be a good thing.

4. Laughing at life when it’s really hard is much easier on my heart.

5. But a good cry is sometimes necessary. And that’s ok too.

6. Kyle has taught me that prayer is necessary to make through our days!

7. Asking for help is ok. And letting people help me doesn’t mean I am weak.

8. I have learned to sacrifice. And that sacrifice is not a bad thing.

9. Kyle has taught me what unconditional love really means. By forgiving me constantly when I lose my patience.

10. I have learned that through my example of “serving” Kyle, my children are growing up to be extremely compassionate and selfless people.

11. Kyle has taught me to never give up. On him or me.

12. Date night is essential! At least once a week a night out is needed!

13. Having Kyle has taught me to always rely on my intuition. Moms really so know best!

14. I have learned that when I think I have Kyle figured out, it usually means I’m about to be handed a big ol’ piece of humble pie…and a lesson is right around the corner.

Every year I am a little more grateful for the struggles I face being Kyle’s mom. Because I am able to pick out more easily the lessons I learn. Being a mom is my proudest accomplishment. I’m so lucky I get to be Kyle’s mom. 💙Happy birthday to my first born!

Baby, it’s cold outside!

The weather has finally started to feel like fall, here in SoCal (well in the early mornings at least)! To most this means long sleeves and sweatshirts or a jacket of some sort, right? Well, Kyle would beg to differ. 😏

Kyle has always struggled with sensory issues-but clothing was never a huge hurdle, like it is for some kids….until the past few years of course! 🙄 As he gets older he has become so rigid in all areas of his life and clothing is one of those! A T-shirt and elastic waste pants or shorts is what he prefers and luckily most of the year that is completely fine! But the mornings become chilly here and a sweatshirt of some sort is definitely required!

Kyle, the last few years has protested slightly when it came to putting a zip up hoodie on over his preferred tee, but not to the point that it was impossible-and usually by the time he was near the classroom he had unzipped it and off it went. But he wore it for a majority of the time being outside.

This year, has been the worst. Of course, why wouldn’t he add another hurdle his mom has to jump through?! 😂 He flat out refuses a jacket of any sort in the mornings. And trying to force it results in a major meltdown! 😩 But the part that makes me shake my head? He gets out side and shivers and says “coooooooooold!” He even gagged from the cold the other morning! 🤦🏻‍♀️ Dude, wear a jacket!

Soooooo, in talking to Erika, we decided maybe practicing wearing a jacket would help? Cuz, practicing everything with Kyle has seemed to become our go to! Here’s a video of us practicing the first time-it’s not pretty (and we tuck his shirt in like that when he repeatedly takes his shirt off-this way it takes more effort on his part and it usually makes him think twice) and you can see how amazing Erika really is!

We eventually got the jacket on him-I had to stop recording because it took two of us! And then I had to hold the zipper while he went outside to *practice* the steps! We barely accomplished this task but we did it! He was unzipping it before he even made it back in the house though! 🙄

The second video we took a little bit later and he did much better but still doesn’t love the idea of having a sweatshirt on!

And sometimes practicing doesn’t even make our perfect 🤨 (unfortunately) and I have to go to plan B or C or D or E or even F sometimes! We practiced a few more times, only to end it fights! And it was hard to practice when I didn’t have a second person to help! So I decided to try a compression cold proof long sleeve shirt. Hoping I’d trick him into being warm!

Guess what?! It totally worked! So I dress him every morning in a long sleeve compression shirt and a T-shirt over it! And he is totally fine with it! No fighting! No meltdowns!

Having Kyle has taught me so many things over the years. So many! One of them being-think outside the box and KEEP TRYING (even though it can be incredibly frustrating at times)! Eventually I will find what works. Eventually. It always comes back to patience. I apparently needed a life full of opportunities to learn patience! 😂

Our very own bus…well just the stairs!

Erika and I were brainstorming about the bus a month ago because we were STILL having a lot of issues with getting Kyle on and off the bus (especially at school)😩Brainstorming means we broke down every single part of kyles process of getting on the bus (and off-because he struggles there too-sometimes).  Erika observed him getting on and off the bus both at home and school (seriously, she is THE best). We tried to figure out where we could tweek the process to help him better transition. After a few days, Erika suggested that we build a staircase similar to the bus to have Kyle practice walking up and down. The reason for this? Kyle struggles with depth perception and stairs sometimes cause him anxiety (what a surprise) and the bus stairs are quite steep (whoever came up with a “special bus” with steep stairs is dumb-in my opinion)! So she thought maybe practicing would give him more confidence and perhaps eliminate one of the anxieties he faces with getting on and off the bus! I thought it was genius! And was willing to try it-or rather willing to beg James to execute our idea!

I was super excited and told James about our idea! 😂 He as usual hopped on bored (after a little convincing)and was ready for the challenge! My in laws were coming for the weekend and my father in law is handy and loves a good project! So when they got here I shared my vision with him and he and James were off to Home Depot, measurements in hand! Dave was super excited to help and sacrificed most of that weekend to helping James build this giant staircase!


These two guys were googling how tall each step was on the bus to make sure they got it as similar as they could to the bus! They made a few trips to Home Depot (Cuz what’s a project without more than one trip)! And it came out perfect. I am so grateful for both of these men in their willingness to sacrifice a weekend to help Kyle. It meant more to me than they both probably knew.

If you have ever wondered what a (not horrible) day of getting Kyle on the bus looks like check out this video. It’s crazy how similar it is!  Resistance, spitting, crying and of course taking off and throwing his shirt are all signs of his anxiety. This was the first attempt after they finished it!


Then we tried it a couple hours later and the next video is similar to a good day (a really good day-which are far and few between) of him getting on and off the bus!  And he even had an audience!              

We have been consistently having him practice on the stairs for almost a month.  He is getting better and better.  It seems that with practicing the stairs and having the bus show up 20 minutes earlier so Kyle can load first before all the other kids are outside (and well before the gen-ed kids are dismissed) has made a difference in how Kyle is transitioning on and off the bus.  It is still not as smooth as I’d like, but I’m trying to see the big picture-and he has made A LOT of progress since that first day of summer school.

To some, making an elaborate staircase seems silly and a bit extreme especially when there’s a possibility it won’t even help!  And maybe it is..  I have come up with my fair share of failed projects in many attempts to help Kyle.  But I will continue to come up with big and small projects  because if it relieves even the slightest bit of his anxiety, it’s worth it.  Right, James?!

Til we meet again….

Jen and I met in junior high. I remember seeing her the first few days walking the halls and thinking how pretty she was. Not only did she have an outward beauty but she had this inward confidence that shined through whenever you saw her. I always admired that about her. Her kindness towards me always made me feel good and we became fast friends. 

High school started and the end of freshman year we had become close friends. We shared a love for school spirit and soon after she joined ASB, I of course did too. By the time our sophomore year ended we were inseparable. We were no longer just Jen or just Kate. We were known to almost everyone as Jen and Kate. We did everything together. We had the best time together. My favorite high school memories include her in them.  Late night sleepovers. Pep rally planning. Painting our faces for football games. Ditching classes in the ASB room! Mr. Parker! Long summers at the school preparing for freshman orientation! CADA CAMP! BFC! PNC! Letter writing and passing them back and forth! These are all engraved in my heart. 

As most lasting friendships do, we had seasons. Seasons of hard and seasons of great. But no matter what we always made sure we kept in touch. Most of the time when we weren’t as close it was because she would tell me I was making a bad decision and I would get mad and pull away-she was almost always right about that bad decision though. 🤦🏻‍♀️ She taught me to know and value my worth. She taught me to have expectations and it’s ok to wait for them to be met. She taught me that I was worth the wait. 

Jen taught me through her example how to be a friend. How to love your friends. Truly love them. She was there for every good and bad milestone in my life. When I had Kyle on thanksgiving day, she was the one who brought me thanksgiving dinner in the hospital. She is the one that advised me not to give Cody the middle name Blaze! 😂 She was the one who I called first after that day I got Kyle’s diagnosis and I listened through my tears as she reassured me that I could do this.  She was the one who drove all the way to Las Vegas to help pick me up off the floor when my first marriage had failed. And helped build me back up for years after. She was the one who told me I was an idiot after I said “James was too nice”, and told me that’s the kind of guy I needed and deserved!! She’s the one who has always been there. And now she isn’t. 

A few months ago, I was thinking about how difficult it is to have friends being Kyles mom. Maybe that is partly my fault. It gives me anxiety to think about how Kyle will react to people coming over or how he will react at someone’s house. So it’s easier to just not open myself up to having people know Kyle in person or know that part of me in person! My blog is an easier form of letting people into my world😉But I never had that anxiety with Jen. Not ever. She loved me and she loved Kyle. No matter what mess he made at her house (and there were so many 🤦🏻‍♀️)or what fit he through (and there were so many of those too)she always had us back for more. She never made me feel like I was a burden. Not ever. She loved us unconditionally.

At jens 30th birthday party-which was amazing just like every party she ever threw-we were in a different season and not as close as we were in pasts but she pulled me off to the side and she said (she may have had some drinks in her, but alcohol brings out the honesty right??? 😉), “I know we aren’t as close right now but I feel like we will always be soul mates, if there’s such thing as a friend soul mate!” Then we laughed and I told her I felt the same way. As soon as I was told of her passing I immediately clung to this conversation. I love Jen. She means so much more than the words I am writing. I don’t think Anyone could understand the depth of our friendship. And that’s ok because I know.  I feel it.

Jen being gone still doesn’t feel real. And it definitely doesn’t feel right. My heart aches. It aches for Bobby. It aches for Bryce and Leah. And for her family. It aches for me. This world is definitely not the same without Jen. And I’m sure it will take time for the pain to subside.

 I feel incredibly grateful for the friendship I had with Jen and will forever cherish the memories I share with her. I am grateful for the things she taught me by being my friend. Although Jen being gone is so painful,  I am comforted in knowing, without a shadow of a doubt, I will see her again. Till we meet again…Jen and Kate forever. ❤️

Grief.

I remember the day the dr confirmed what I already knew-Kyle was different, and he would be different for the rest of his life. I physically ached and felt as if something was taken away from me. This wasn’t what I wanted for my son. This wasn’t what I wanted for ME.  This was not in my plans. I felt sadness. I felt pain. I felt anger. I felt fear. It was the first time in my life that I felt grief. 

I am genuinely happy and feel blessed that God entrusted me with Kyle. I really do. But I would be dishonest if I didn’t admit that grief creeps up on me at times-mostly when Kyle should be hitting a milestone…and reality slaps me with how truly different Kyle is. And I grieve for the son that was ripped from me the day that Dr kundell looked me in my very wet eyes, and changed my world forever, by telling me Kyle had fragile x. And 6 months later-autism was added. 

Kyle is smack dab in the middle of  puberty 😩 and turning into a young man. A man. It’s hard for me to even write that. I have tried not to think about this happening but a new reality is being forced on me. And it’s hard.  Tonight was especially hard as I went through his night time routine. It was hard to brush his teeth and see traces of facial hair appearing on his upper lip, and know that he will never experience learning how to use a razor by himself. It was hard to see the physical changes that are occurring as I bathed my almost 14 year old then had to help him get dressed because he can’t do it himself. It was hard to have to put deodorant on for him because he lacks the motor skills to do it on his own. It was hard tonight knowing I had to lay next to my almost teenage son for 20 min in order for him to  relax enough to fall asleep. It was hard to hear from Justin that homecoming is fast approaching and knowing Kyle will never experience a date or heartache or love. I’m grieving for the independence that Kyle will never have and the experiences he will never have.  He is turning into a man phsically but his mind is still that of a 3 year old (or younger) in many areas. And it sucks.

Sometimes in these moments of grief I find myself feeling like my life is unfair. That Kyles life is unfair. And maybe it is. But I know grieving is an ongoing process-at least for me it is. And it’s ok for me to feel these things. 

I’m LDS (mormon 😉) and we believe that through the atonement of Jesus Christ, we will be resurrected and our minds and our bodies will become perfected. I find such comfort in this.  I KNOW that Kyle will one day have a mind and body that are in sync-Kyle will become perfected. Not in this life. And that’s ok. Even though I go through seasons of grief, I am able to live everyday with the knowledge that someday Kyle will wrap his arms around me and SAY the words, “I love you, mom”.  I know all that I experience being Kyles mom is preparing me for that very moment. And boy do I look forward to that moment, cuz I know it will be worth the wait. Until then I will allow myself to grieve when I need to grieve.💙