Seasons

Kyle goes through “seasons” of really hard and “seasons” of really good.  And it’s constantly changing. It’s usually when I think things are going great, when I think we have his medication combo perfect, when I think his anxiety is manageable, or when his behaviors seem to be at bay….he throws me a curve ball.  And the “season” changes. Sometimes I know why and sometimes I don’t. 

Right before this last school year ended he was doing awesome. I was confident with Erika transitioning out and me going into summer with not much support. I knew that starting high school was a big change but I was confident in my knowledge of how to approach the change with Kyle. I was confident that I would be able to power through the change. I prepared as best as I could and went in full of hope. Maybe I was too hopeful. 

Every morning I wake up with hope  that the morning will run smoothly. And every morning it is hard, but we make it through…barely. This morning was really hard, hard like that first day of school hard, I wasn’t sure we were going to make it. I was ready to say forget it again. I was ready to throw in the towel. If it wasn’t for the bus aide Janine who encouraged me to keep trying, I would have said forget the bus. Finally after 15 min (worse than the first day) we got him on the bus still screaming and shirtless. As the bus finally pulled away, I felt the hope leaving me just about the same time the tears started to flow. 

I began summer with my cup full of patience, hope, energy, positivity, and a teeny bit of excitement for the changes. My cup empties out a little bit more every day. Not only are school days hard but weekends seem to be even harder. With no end in sight. After this morning I feel like my cup spilled its last drop. I feel like I am running on empty. 

I have tried everything to relieve Kyle of the anxiety he is experiencing. Pictures of the tasks he has to do so he knows what to expect. He smells like a bottle of essential oil from all the oils I drench him in-I even purchased a teeny bottle people raved about for anxiety costing me $135 😬. I’ve tried doing joint therapy. I’ve tried bribery! All of this to no avail. Everyday is still hard. Hard on him. Hard on me. Emotionally I feel exhausted. I feel sad for him but at the same time I can’t help but feel so frustrated when he is screaming and crying and refusing to stand up to get on the bus. Every. Single. Day. Why can’t he just get on the bus?!

I’m trying to tell myself that things will get better with time. That this “season” will end. And that I will be stronger for it (ha.ha.) That there is purpose and some sort of lesson to be learned in this. I’m trying to remain hopeful. But I’m starting to doubt all of it. I know that things could be worse but I also know things could be better. Why can’t I have better? I just want a break. A break from hard. 


Prayers are welcome for me and this guy! 👆🏻we could use ’em. 💙

Pray…He is there.

Yesterday was probably one of the hardest days with Kyle.  Not because he puked. Not because he cried a lot. Not because he took his shirt of and wouldn’t let me put it back on. I would take all of that a million times over what I felt yesterday.  I felt helpless. I felt scared. I felt anxious. I felt weak. I felt sad.  I felt like I’d failed Kyle. 

Last night I finally got up out of my bed and washed my swollen face that had mascara smeared across it from all my tears, around 8:30. I was still crying as I washed my face. I couldn’t stop the pain I was feeling. I walked downstairs to a dark living room and sat on the couch and just prayed. I begged that I would have the strength to do this again tomorrow. I prayed that Kyle would be less anxious. I prayed that I would know how to comfort my poor boy. I prayed that things tomorrow would be easier for Kyle. I didn’t sleep much. But every time I woke up-pretty much every hour. I found myself praying. Please let tomorrow be easier for Kyle. Please give him the comfort he desperately needs. Please make it easier on him. I even remember at one point  asking if it was at all possible to let me take on extra anxiety if that meant he would be free from it. 

5:30 finally rolled around, it was a long night for me. I was physically and emotionally exhausted. But I woke up and kept telling myself I needed to stay strong for Kyle. I got dressed and walked into his room to wake him up not sure exactly how this would go. I opened his curtains like I normally do, and laid next to him and put my arm around him. I felt myself beginning to cry. I pulled it together and told him it was time to get up. He woke up and we had our normal back and forth conversation…he tells me “eat”and I tell him ok he has to go downstairs. So on and so forth. He didn’t seem like he did last night. He seemed much calmer. Keeping the normal routine was what I kept feeling I was supposed to do. 

He came down and we did the normal morning routine. He didn’t protest. Not even once. He was better than on a normal day! I found myself praying every step of the way. Please let him be ok. Please don’t let me cry if he isn’t ok. Please help me to be strong. 

As he always does after breakfast he walked over to his drawer, that has his pictures and some toys, and pulled out the bus picture and the picture of his new teachers. I didn’t want to acknowledge it…I was scared it would make him anxious or cause him to start a meltdown! But he didn’t. He pointed at all the teachers and I named them and he smiled. Then he pointed at the bus and smiled. I was shocked. 

After he was dressed, we walked over to the window and waited. We talked about the bus. Whitney was awake now so she was talking to him about school and the bus! He was excited and didn’t seem to be upset at all. The bus pulled up at 6:21 and Kyle skipped out to the bus ahead of me with his sideways grin! He was at the bus doors before they opened! The bus driver opened the doors and he was on the bus and in his seat before his bus aide had walked to the bus from her car! He let the bus driver buckle him in while I talked to Janine. He waved goodbye and the bus was off in less than 2 min from the time he hopped out our front door. 

I turned around and let out a sigh of relief and high fived James at the front door, that he didn’t even have to come out of! This was truly a miracle. I was on the verge of tears the entire morning and felt that if anything went south I was going to breakdown. But nothing went south. Nothing.

My prayers were heard. Every single one of them. Friends had text after I posted last night, saying they were praying for us. Those were heard too. Prayer is something I rely on daily to get me through my days. But last night, I was begging and pleading. And He heard. He knew I needed a tender mercy. And this morning was just that, a tender mercy. I am so grateful. 

Kyles teacher called me at the end of the day to let me know how the day went (how amazing and lucky to have a teacher who will do this? I’m telling you, special ed teachers are truly remarkable people). She said the morning was great but the afternoon was a little rough. He threw up. All over her! She laughed about it (bless her)! This was hard to hear but I was able to get through the conversation without crying! Another tender mercy. 

 I know that this is all part of Kyle getting used to a new routine with new people. I know that things will get better with time. I know that there will probably be more bad days in the near future.  But I also know that Kyle and I can do this….even though it’s so hard.  I know that my prayers are heard. And I know that I am given tender mercies as a way of telling me He’s listening. And I am so grateful.

The dreaded day…1st day of high school

I’m writing this as I lay in my bed my eyes wet, and my heart physically aching. Today was rough. I knew it would be hard. I prepared myself for it, I thought I did. I went into today with a positive but realistic attitude.  But like everything with Kyle…even with all the preparation in the world, it’s still hard. And my mama heart is hurting. 

I went to bed last night full of anxiety mixed in with a little excitement. I had Kyle’s lunch packed. A note to his teacher all ready to go. The pictures of the bus and the new teachers out and ready to prep Kyle. I didn’t sleep much knowing the morning would be rough. But I was ready to power through it! 

I woke Kyle up bright and early at 5:30! He wasn’t excited but didn’t protest. We went through the normal morning routine and he didn’t put up any more of a fight than usual. After he was dressed and ready to go, we sat on the couch looking out the window waiting and talking about the bus. He nervously laughed and seemed to be ok. He even signed “please” when I mentioned the bus! I tried to hide my nervousness the best I could do so Kyle wouldn’t feed off my emotions-which he often does! I did a dang good job! 

The bus arrived right on time-6:21. James and I walked Kyle out who immediately ran to the back of the bus and into the street! 🙈 James corralled him back to the bus doors where I was meeting his bus aide, Janine. She is a lady around my moms age who was extremely nice which gave me comfort! The bus driver, Jorge had a big smile and “hi” to greet his new student who was less than enthusiastic about getting on that big bus (which was empty-Kyle was the first pick up). We somehow got Kyle up and in, where he took his shirt off and threw it out of the bus. 🙄 It took several attempts and bribery of candy to get it back on. Then came the seatbelt-everytime we buckled it, he unbuckled it. Once again bribery came into play along with Janine having to hold onto his hands.

As we struggled through getting Kyle settled I was talking him through all the steps and reassuring him he was fine. He motioned for my hand and for me to sit next to him several times. My heart broke every time. The look of panic in his eyes was almost enough for me to say, “Forget it! Come back inside! You never have to go to school!” But I know I can’t do that. And I was being so strong! So when he was calm enough I walked out of the bus. He began to cry and the bus drove off. It was so hard. So hard. 

I got back in and was able to keep it together. I paced back and forth in my house thinking about my baby boy who’s world has been rocked again and was scared and anxious. All I wanted do was make it stop for him. But I can’t do that. 

Kyles sweet teacher text me updates throughout the day that he was doing fine. She sent me a picture even! I have a friend who also works in a different classroom that sent me a picture too and sweet reassuring texts throughout the day. As the day progressed, I was feeling much better! I even thought wow! That wasnt horrible! He didn’t even throw up! I was excited and looked forward to seeing him get off the bus with his cute sideways grin! 

At 2:00, whitney and I were out front to greet Kyle and the bus! He was so excited to see us, and hopped out of the bus and ran inside to get his iPad! I talked with the bus aide, Janine for a few minutes outside. She said the bus ride to school was rough but not awful. She said he had a few hiccups at school but overall a good day. She reassured me that things would get better when he got to know them. I agreed and we said our good byes. 

Kyle was happily on his iPad and asked to eat (normal-he eats a snack after school). He ate his snack and drank some juice. I was on cloud nine! Thinking today was hard and tomorrow might be a little harder but this was do-able for sure! 

About 3:30, Kyle started crying upstairs and spitting a lot. Which is code for he’s gonna puke. He wandered downstairs still whining  😩 I asked him if he needed to throw up and he immediately went to the sink and vomited. This was not extremely unusual…except he didn’t have anything to be anxious about. He was upstairs. No one was here. It was fairly quiet. My mind started thinking, is he sick? Did he get heat exhaustion on the bus? What the heck. 

This went on for the better part of an hour. I began to realize he was having an anxiety attack. Nothing I did would calm him down. He began to pace. He started looking out the window and saying bye (I’m assuming to the bus). He kept throwing up. He asked for a bath where he still threw up. His anxiety was almost palpable.  At this point I started to cry. I couldn’t help my son. I can usually calm him down. I can usually talk him down from throwing up in an anxiety ridden situation. I can usually fix things when it comes to Kyle. I couldn’t fix this. I felt helpless. 

After the bath I got him dressed in shorts,  closed his curtains so it was dark and we both laid on his bed. He watched the Bee movie while I silently sobbed. I tried to comfort him by rubbing his arm like I usually do as I sniffled, but he clearly wasn’t relaxing. My mom was dropping Cody off and came up and saw my swollen eyes and told me she’d take over. Thankfully Kyle liked that idea and snuggled up to grandma. 

I walked into my room and crawled into my bed and continued to cry.  And that leads us to right now. As I lay here I am sad. Sad that I can’t make Kyle not hurt. I’m sad that I can’t make kyles life easier. I’m sad that in order for Kyle to get used to this new school he has to continue to go which means he has to continue to suffer. I am sad that he can’t catch a break and everything is so much harder for him. I’m sad that I can’t take the anxiety of new situations away. I’m so sad that my baby boy is suffering. If I could go through it all for him I would in a heart beat. 

There are many times that I’m ok with how “unfair” things are for Kyle. For me. Today is really hard to be ok with how unfair it is for us. I just want to make the pain go away for both of us. But I know I can’t do that. So instead, I’m gonna go somewhere quiet and pray hard, harder than I have before,  that the pain will lessen and that Kyle and I will have the strength to do this again tomorrow. I have to be hopeful, right? 

I’m dreaming of a white sandy beach vacation….

​This is pretty much what everyday looks and sounds like in the summer for one reason or another and it’s usually more than once a day, today’s adventure (I’m choosing to call it that even though adventures are supposed to be fun-at least in my mind-and this isn’t fun 😳)…Kyle has discovered our neighbor has an above ground pool (from standing on our upstairs balcony and peering into their yard-he’s so nosey! 😂) and has become obsessed with wanting to go over there. This isn’t possible for several reasons. But he doesn’t care to hear any of the reasons. So this meltdown 👆🏻started because he pulled out his swimsuit and pointed next door to tell me he wanted to go in their pool.  When he was told no he immediately started into meltdown mode, which was small but escalated quickly when he realized his iPad ran out of battery (this is like THE worst thing that could possibly happen). I closed his door, after handing him the back up iPad (which is not his preferred-who knows why, they both do the same thing 🤷🏻‍♀️) to hopefully let him calm himself down-only to open his door a few minutes later to find he peed himself in protest 😩. Awesome. But at least it wasn’t puke. So into the bathroom we went to get him cleaned up,  where he stripped down naked and flopped to the floor and refused to get up.  He cried and hit himself several times. Finally after a good 5 minutes of me telling him over and over to get up (trying really hard not to lose my patience cuz then he will never stand up) he stood up and walked into his room, still crying. He protested the whole time while I struggled to get him wiped down and dressed in clean clothes (trying to dress a 130+pound 13 year old who is NOT helping is not my favorite)! After 10 minutes, I’m sweating and he’s still pissed cuz he wants the iPad that isn’t charged. 🤦🏻‍♀️

Seriously, this happens multiple times a day in the summer and for all different reasons! 👎🏼 And sometimes he doesn’t even know why he’s melting down so there is no solution-which is definitely the most frustrating for both of us!  I know I have voiced several times my fear and anxiety about Kyle starting high school but I’m becoming more excited and relieved that summer school starts for him in 3 short days! He needs a school routine back, and I need a break (or a vacation)! I sure hope we both make it til then! 🤞🏼😬 Have I told you I hate summer?! 😬

It’s A Cruel, (Cruel ), Cruel Summer!

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Summer.  I hate summer.  There, I said it.  I know, HATE is a strong word but I feel strongly about my dislike for summer.  I didn’t always hate summer.  In fact as a kid, it was my favorite time of year.  I remember we always had a family vacation planned, trips to the beach often and we made a family trip to Raging Waters (a water park) every year!  I remember long days of having friends over jumping on the trampoline and sleep overs and just over all fun!  So naturally when I became a mom I had future plans for FUN summers filled with vacations, beach trips and a house full of my kids and their friends.  Well, my summers are definitely not like anything I imagined…and sometimes (well, pretty much every day ;)) I have to dig deep to smile and appreciate the summer days despite how different they are from what I wanted them to be.

Our summers aren’t filled with beach trips, sleep overs, and definitely no vacations planned!  Our summers are mostly spent at home with lots of playing in the hose and made up games in the back yard!  With a little drive through McDonalds here and there and a whole lot of meltdowns!  We TRY to make a beach trip or 2 if we are lucky, but going to the beach with Kyle is a lot of work and he only lasts maybe 2 hours-where the other kids want to stay all day!  And driving 2 hours to only stay 2 hours and then drive home 2 hours never sounds like a great idea!   A couple of summers ago, I got brave and paid Erika to come along with us on a trip to big bear with my family for 3 days.  It went ok but on day 2, I ended up in tears after a long day of dealing with meltdowns.  I swore I’d never do a family vacation  again-and I am still in that mindset! haha  Having other kids here adds more noise and isn’t in Kyle’s routine, more often than not resulting  in extra meltdowns, so sleepovers are rare and having a house full of extra kids doesn’t happen often.  Soooooo, that leaves my kids with not many options but somehow we have managed to survive every summer…and I have a feeling we will continue to survive!  My kids are champs, I can’t say that enough.

Sometimes, I find myself looking at social media becoming envious of my family and friends, as I see their amazing pictures of summer vacations, lake trips and beach trips or just their daily outings that they are experiencing with their families.  When Kyle was diagnosed all those years ago, I went through a grieving process (another blog post for another day).  Because when your child is diagnosed, you realize there are things in your life that you have to give up.  Summer is something I lost when I became Kyle’s mom.  So every time summer rolls around I find myself in a bit of a slump and have to pull myself up.  And sometimes that means I have to pretend to smile when I wanna go upstairs and cry about the summer I wish I could give my kids.  But that’s not an option so instead I am going to try to make the best of another summer and appreciate what we DO get to do as a family.

 

 

 

 

 

I think I’m on the spectrum too! 

Kyle will start his high school journey in just a few short weeks. I have had so much anxiety and too many sleepless nights leading up to this big transition! I have tried to mentally prepare myself for this change the last couple of years, but how can one really *really* be prepared for that first day when the bus pulls up to your house and you send your big 13 year old non verbal, anxiety ridden, autistic son on his way to a big different school.  With a different classroom,  a different teacher and different “aides”, and different classmates. And a completely different schedule.   How do I prepare my heart for that first day, that I know will ache if he starts to meltdown because things are much different than he knows? I’m not sure…I just hope I’ve done enough to prepare us both.

He has been at the same elementary school since preschool…that’s 10 years of the same. We have been so lucky with all those who have been a part of Kyle’s elementary years. We have formed lasting friendships and I know they care deeply for Kyle and his success.  This last year Kyle’s teacher and the principal (both whom I consider friends) both walked (and talked 😉 me through the process of transitioning to high school. They both came with me to tour the high schools and gave me their honest opinions. Then when it came time for Kyle’s transitional IEP with the high school rep, Kyle’s teacher was there to give very specific notes on how Kyle works and thinks and processes. She knows Kyle probably as well as I do. After each step toward this change I have felt a little better.

I have said lots of prayers for comfort through this process and feel like every single time I have needed comfort it’s been there. I have been put in contact with the right people through this hard process and they have reassured me with the exact things I’ve needed to hear. The high school staff has been more than accommodating and has been so kind responding to all 500 of my emails voicing my concerns! His new teacher has even called me and text me to set up a time for her to meet Kyle and myself before he starts summer school (seriously? People who work in special ed are amazing)! A Facebook friend contacted me letting me know her husband would be working in Kyle’s class-they came by and met Kyle this last week so he would have another familiar face and so they could get to know Kyle!  I have learned that having people who can “hear” and understand the many “voices” of Kyle eases my anxiety and reassures Kyle as well. So I’m hoping when he walks through those different doors and sees some familiar faces it will help put his anxiety at ease.

As with anything new and different practicing *sometimes* helps Kyle…so we have been driving to the high school. We talk about the new school while we drive there. We talk about riding on the bus. We point to the new classroom. We plan on getting pictures of the teacher and other adults in the classroom to show him as well as a picture of the bus. So far he has reacted positively! And I’m hopeful with us practicing it will help relieve some of his anxiety come that first day.

If I have learned anything about Kyle it’s that people will fall in love with his goofy grin and his infectious laugh in no time. And it won’t be long before his new teachers are new friends! And I’m sure he will learn his new schedule quickly….and learn the ins and outs of his new school….and get to know the personalities of his new classmates. I know all this. Its just getting past those first few NEW days.

Sometimes I think I fall on the spectrum with my transitional anxiety and my fear of change (Poor James)! Kyle and I are quite the pair! I hope that I have prepared us both well enough that when that bus pulls up to the front of our house in a few short weeks, neither one of us has a melt down! Here’s to being hopeful! 😬💙

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So long 8th grade

Kyle graduated 8th grade today. It wasn’t like my 8th grade graduation-an auditorium filled with lots of parents and siblings and a graduating class of 200+. This was a graduation in a cafeteria filled with maybe 15 parents and siblings and a graduating class of 6. SIX. But it was by far the BEST 8th grade graduation I have ever attended. And maybe its because Kyle is mine, or maybe because I watched him beaming with pride on the stage. Or maybe because I am going to miss this school that took the time and put in the effort to put on a graduation ceremony for my special boy. Maybe its because as I listened to our principal (who I am honored to call a friend) speak about these kids, I could hear the pride and the love she had for them. Maybe its because I watched as Ms. Jan (one of his favorites) proudly stand next to her boy and let him grab her arm when he felt anxious (and even bite her). Or maybe it was watching Mr. Chris play with Kyle after the graduation and Kyle light up and laugh as they wrestled. Maybe its because I am so humbled to be able to experience and have my kids experience special moments like these for their special brother, that most people don’t. Maybe its because once again, through this graduation, I was reminded how truly lucky I am to be Kyle’s mom. Maybe its all these reasons that made it the best. But I will forever treasure the moment of pride I felt, as Kyle was helped across the stage to receive his 8th grade diploma.   ​