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
He is a foot taller than me now. And at least 50 pounds heavier. 😳I knew the day would come when he was bigger and stronger than me, but he is way bigger than me and way stronger too! Thankfully he is a gentle giant and isn’t violent. Thankfully. But he does know he’s bigger and stronger and knows how to use his strength. 😩His latest and greatest behavior is dropping to the ground and refusing to get up. I’m talking he won’t get up for sometimes close to 45 min or longer! He’s always used this tactic but sometimes it fades away or he stops doing it for a while (of course he replaces it with an equally annoying behavior 🤦🏻♀️)Well, he’s rediscovered its success and has started to use it as his go to when he is anxious or doesn’t want to comply. It’s awesome. Especially when I’m by myself and he’s on the front lawn and refuses to stand up. Super awesome. Erika and I have started to implement a program of trying to get him to stand up randomly throughout the day- hoping that he will get practice with the stand up “demand” in situations that he isn’t anxious or upset. With the hope that it will transfer over when I’m in a pickle and really need him to stand up. We will see. 🤷🏻♀️You never know what will work with this guy! This has always been an issue with Kyle and we’ve had to work with him throughout-it was easier when he was younger AND smaller, because Ideally we don’t ever want him to touch the ground thus gaining (unintentional on our part) reinforcement. So if he was about to drop whoever was with him would immedia grab him before he fell to the ground or immediately pick him up and to his feet. BUT he’s a giant now so we have to improvise! Cuz he is way to heavy and strong to pick him up! Kyle getting bigger and stronger was inevitable. And here we are. Now…we adjust. This is my life! THIS is autism! #autismawarenesspost #autism #fragilex #kyleisagiant