I tried to find a good quote to sum up my thoughts. But I can’t find one that perfectly describes my feelings today. So I guess I’ll try to explain although I’m not even sure I’ll be able to adequately express my thoughts so it might just turn into a vent sesh! 🤷🏻♀️This morning was rough. Like really rough. I’m not even sure how in the world james got him on the bus. Other than it was a miracle. Kyle started out ok-he walked out to the bus and made his usual stop at the bus doors. But as soon as he felt the pressure to hurry up, he started to melt down. My usual threats didnt work. And he was progressively getting louder in his crying. Which is always Awesome. This kid is so limber and flexible and uses that to his advantage. He twists and turns and turns and locks his arms and legs into nooks-which makes it near impossible to squeeze him up and around and finally into his seat. Ugh. This morning he almost didn’t make it on. Like i said, it was a miracle. The amount of anxiety and stress that comes with being Kyle’s mom mostly stems from not knowing what kind of day it will be. Everyday i wake up and hope for the best. He can have two days in a row that are great and then a really crappy day. And most of the time nothing has changed In the routine. This morning could have gone great-even with the mid week day off. But for reasons only Kyle knows, it didn’t. It’s so hard to see progress come so so slowly and sometimes not at all. It’s hard to wake up every morning and have no idea what kind of morning it will be-despite telling myself every morning “today will be a good day”! I’m still learning to not let my discouragement of how a day goes with Kyle, dictate my mood or how I deal with my day. But it’s hard. Some days harder than others. This morning was rough and he had an early out day and the bus showed up late which meant I was late picking up cody (and my friends daughter who needed a ride 😬). But I was determined not to let today’s losses control my attitude. So instead of letting my anxiety take over about how Kyle will be tomorrow-Janine is gone and another aide is riding with Kyle 🤞🏻😬😳😬🤞🏻I decided a mid week date with my husband was a good idea! Cuz why not?! Being Kyle’s mom is the hardest thing I’ve ever done. It’s a roller coaster ride for sure. One that I ride blindfolded most of the time and have no idea when the next drop will be. Today, I guess I’m choosing to throw my hands in the air and try to smile through the anxiety. Tomorrow might be a different story! 😉Still learning! This is my life. This is autism.
Non student day. What the heck is that? And who thought it was a good idea to have it mid week? So dumb. To add insult to injury, I had no clue there was no school today until yesterday. 😏 Not that advance notice would make it any better. So no school for Kyle meant I had to adjust my schedule and enlist the help of James (who is the best and always adjusts his schedule to help me any time I need him). It was my turn this week to drive to prek…so that meant James had to drop off and pick up. Minor adjustments, but adjustments. Kyle spent most of the day asking to eat. No, I’m serious. He asked to eat RIGHT AFTER he finished eating. Every time. It was a long day of me saying “you just ate, it’s not time to eat again”. And a long day of him getting upset because I didn’t let him have free rein in the pantry. My good friend Johanna knew I was stuck at home and decided to drop by with a surprise lunch! Kyle of course doesn’t love surprises. He tried to close the door, throw things out the door, then successfully took his shirt off and made that out the door. 😏 one question I am definitely asking when we get up to heaven is “why the stripping when you were anxious, Kyle?” But here we are it’s 6:45 and he’s laying next to me-pulling my hair and rubbing his hands all over my face as he tries to settle down. We made it another day, we made it through another day off from school! Crossing my fingers this break in the schedule doesn’t make tomorrow’s bus experience awful. 🤞🏻This is my life. This is autism. #autismawarenessmonth #autism #fragilex
This happened today and it made me smile. We have lots of stories about my boys trying to get Kyle back in the house when he “escapes” that they don’t tell me about until later, when we can all laugh! And we do! The boys are very aware now when Kyle goes into the backyard that the dog poop better be picked up! Justin was still at practice and it was his job to pick it up this week! Cody wasn’t about to take it on for him so he did what he had to, to get Kyle back in the house! 😂It worked out for him today! I should have recorded the bragging cody did afterward! It went something like “and that’s how you get him in”! As if it’s always that easy! Silly boy!
Kyle got off the bus today and Janine said he had a great day! Yay! She said for the last few weeks he has thrown up on their walk 🙄 in the exact same spot (the teachers parking lot 😂 he does have a sense of humor). Today she was determined to get him through the walk puke free. She said she kept reminding him that if he didn’t throw up he’d get Cheetos (his favorite)! She said it over and over! Especially when they got to his usually spot! She was so proud as she reported back to me that they made it through the entire walk with no throwing up! 👏🏻 Today was a good day! Celebrating a walk that did not include throwing up-I’ll take it!🤦🏻♀️This is my life! This is autism! #autismawarenessmonth #autism #fragilex #nopooptoday #thankgoodness
This morning at 6:05am I got a phone call from transportation. Never a good call. The man on the other end explained that Kyle’s driver called in sick and that they didn’t have a replacement. And probably wouldn’t have a replacement able to pick him up til after 8:30am. What. The. Crap. We ended up taking him to school. I’m hoping, like REALLY hoping this doesn’t screw the whole week up with the bus. One small adjustment to the routine can set us back weeks…unfortunately. Then at 2:35 I got a text from shanda. 🤦🏻♀️ I cant even believe I’m sharing this. But in my quest to share our autism journey I’m going to share despite social norms. And i already shared about the dog poop… what the heck! 🤷🏻♀️Her text read:”Good day for Kyle until the end- he played in his pooped and smeared it.
He also is sunburn 🥵on his arms . Not sure if he had it from the weekend or if it was from eating lunch outside.” What. The. Crap. Kyle. 🤦🏻♀️ Why the obsession with poop?! Why can’t you find sensory satisfaction in something less gross?! 😩 As soon as I read it I went into guilt mode. Guilty that his poor teachers had to clean that up! So gross. 🤢 I apologized profusely and proclaimed her spot in heaven…to which she quickly responded with, it’s not a problem just wanted to give you a heads up to maybe get the shower ready! For the record, I still think they are all going straight to heaven. THIS is not what I ever wanted my life to look like. THIS is never what I imagined having a teenage boy would be like. THIS isn’t what motherhood looked like when I dreamed of it as a little girl. But somehow here we are! And THIS is my life. And THIS is autism. #autismawarenessmonth #autism #fragilex #hewentstraightintotheshower
The first weekend of every month Kyle and Cody spend with their dad. It’s something Kyle gets excited for and he usually knows when it’s time! He will start saying dad over and over! So we talk about when he gets to see his dad, which more often than not results in Kyles big sideways grin! This weekend Kyle spent with his dad. It was a welcomed break for me! This weekend once a month gets me just as excited! It is the only time I can truly feel the weight of autism and fragile x lifted. James once told me that as soon as Kyle gets into his dads car he can visibly see my anxiety and stress leave. And it’s true because I can feel it leave. I guess the weight is never fully gone, but when he is with his dad, I feel a considerable difference in the weight I carry on a daily basis. I am lighter. My anxiety is lighter. Being Kyle’s mom and dealing with the added or extra weight that comes with that responsibility is sometimes unbearable (or at least it feels that way). Being able to have a small break where the weight is lifted is a huge blessing that I am so grateful I get. And the fact that Kyle gets so excited to see his dad makes it all the sweeter. Today when I picked him up he had his big grin like he usually does when he sees me. He hugged me and got in! We drove off and reached a part in our drive where the road dips. It must have tickled his tummy cuz he started to laugh. It made me smile. As much as I love the break every month I’m always glad when he comes home-even if it means I carry a little more weight. This is my life. THIS is autism. #autismawarenesspost #autism #fragilex #hebettergetonthwbustomorrowtho
Marie came again today. Which is probably part of the reason for this meltdown. He’s testing her. On top of added anxiety. He ran into my room to escape a task. He escalated quickly probably partly because she is still learning how he ticks and what works and doesn’t work with him. The other part was him seeing if she’d follow through. After a few minutes of hearing him cry, I walked upstairs to help out. I asked him to stand up several times or he’d lose his iPad. Marie did the same. He kept telling me no and hitting himself. So he lost the iPad. It’s hard to know if I’m making the right decisions when a behavior or meltdown is happening. I have to think fast-what is the function of this behavior? So i can have the right response. Is it his anxiety or is it attention seeking? So I’m sure it’s tougher for Marie who barely knows him. Having someone new is so much work. I’m basically training her while she’s here. I miss the days of Erika being here everyday. 😢Marie went out of sight and Kyle was able to calm himself down. It was dinner time at this point, which got him downstairs. I told him he could have his iPad back after he ate dinner and took a bath. Both of which probably would have been easier had Marie not been there. But I’m trying to look long term. We have to get past the getting to know you stage. We can do it. He took forever to eat but finally made it upstairs only to sit on his floor and refuse to get in the bath. 🙄He sat for another 10 minutes. I waited it out in the hallway while Marie waited out of sight. I would go in every couple of minutes asking if he was ready to take a bath and then get his iPad. He finally got up and into the bath. Then it was smooth. He got his pajamas on and waited nicely on his bed where Marie was able to end on a good note and hand him his iPad to which he smiled big and said bye to her about 10x! He was done with her! 😂most things get easier-but with this, I’m sure it will get harder before it gets easier. But I’m strong and Kyle is too. We will push through.💪🏻 I debated on sharing this video because it’s kind of hard to watch. But this is my life. This is Kyle. And This is AUTISM. #autismawarenesspost
Communication. Something we continue to struggle with. And for completely understandable reasons-causes Kyle so much frustration. I can’t imagine being inside his mind, not being able to communicate his wants and needs. Sometimes I look back in wonder-how have we gotten through 15 years together, and survived, with minimal conventional communication? Patience and love, i guess (mostly on his part, I’m still working on my patience)🤷🏻♀️Sure, he knows a few signs. But he can’t sign a full sentence. Sure he can point at pictures. But sometimes there’s not a picture to show me exactly what he wants to tell me. Sure, he can point and bring me to something he wants or needs, but sometimes he can’t cuz It’s just not possible. How extremely frustrating that has to be. I know on some level the frustration he experiences because I feel it when I can’t understand what he’s trying so hard to tell me. And he does try so hard to tell me. Sometimes it isn’t frustration i feel but sadness. Through his 15 years we have been able to teach him a few signs that he uses daily which helps. He has his pictures of different shows he watches on his iPad-he will bring that to me and point to what he wants and I’ll type into the YouTube search bar. And he can say a handful of words (mom, dad, pad-for ipad, eat, drink, Cody 😀, baby (for Whitney), car and he attempts to say Gooding-which is pretty cute). And of course those of us who know him well know when he wants certain things by him making a hand motion or a made up sign. That’s it. That’s Kyle’s communication. What I wouldn’t give for him to speak. To be able to tell me he feels anxious (mostly why he won’t get on the bus still 🙄)To be able to tell me he’s hungry. To tell me exactly what he wants or needs What I would give to hear him say I love you, mom! This is my life. THIS is autism. #autismawarenesspost #autism #fragilex