At the beginning of each year I reevaluate where I am with this blog and what I want to do with it. I'm quite happy to not be "required" to write something daily (or monthly, let's be honest), but just by having it I have feel this weird obligation to keep it up? Idk, the internet is a weird place.
Anyway, today is Milo's half birthday and subsequently it marks 6 months since he started therapy and I've had a lot of people ask how he's/we're doing so I'll do my best to summarize the last few months.
Milo is doing ABA therapy at a clinic up in Lehi, three days a week. He's also going to a special preschool in Orem twice a week, and we just added more speech therapy for him on Thursday mornings. It is a LOT but we wouldn't be doing this if it didn't benefit him. Honestly, Milo's progress has been incredible. We really had no idea what to expect as far as improvements go for him but we've been so, so happy with how he's doing.
At the beginning of the month we felt that Milo could benefit from more speech therapy but with his current schedule and our family's schedule we didn't know how to make that work. So I simply Googled "speech pathologist in Utah County" and scrolled the page looking for a title that sounded good I guess? Idk I wasn't that logical about the whole thing but I clicked on the third result down and that's how we found Mrs. Paige and she's been a real answer to prayers. An hour before I called, her Thursday morning client had concluded his final session with her so that time slot opened up. No one on her 6-month waitlist could make that time work and that was quite literally the only time we had in our schedule for speech therapy. I have no doubt that this was a little miracle handcrafted for Milo.
Through Mrs. Paige we've learned a lot about how to best communicate with him and it's felt like we've been given a few keys to help unlock the doors in his brain. I've learned I can't simply ask him, "What did you do today?" because the concept of "doing" is too abstract for him. I have to get really, really specific and say, "Who did you talk to today?" or "What did you play with today?" to get straight answers from him. Kids with autism have a much harder time with abstract concepts so narrowing questions down to contain more concrete elements is incredibly helpful. Mrs. Paige suggested keeping a daily journal for Milo by asking these kinds of specific questions and I legit sobbed the first time we did it. I got more detail about Milo's day during that exercise than I ever have. It's been hard to accept that Milo is out of the house more than he isn't; I thought I'd have more time with him before he was gone this much and adjusting to those expectations has been difficult. That coupled with how little he communicates forces me to rely heavily on his therapists and teachers to know what he's doing throughout the day, and even though they're awesome about giving me that information, I still don't know if Milo had a "bad day" or how something made him feel or who he played with and if he even likes those people or not.
Milo is starting to make friends which sounds like a "no big deal" sentence but I can't write that out without crying (apparently I've been crying a lot lately). For as long as he can remember, Livvy has been his only real friend. She's been right by his side through all of this transition and even today she's the only person he engages in imaginative play with. Livvy has always seen past Milo's verbal capacities to play and love him anyway and we've been so grateful for that gift of hers. However, we've also known that Milo would really benefit from having friends outside of Livvy and we're thrilled to see that slowly happening. There's a few kids at therapy and his therapists that he likes to tell me about. Every night in his prayers he says he's "grateful for Miss Chelseigh and Miss Jordyn and Ollie and Emma".
Milo's starting to really get the hang of pronouns and emotional cues. The whole concept of gender has finally clicked with him. He's actually trying to use the fact that he's a boy to get out of a few things. "I'm a boy mom! I can't wash my hair!" "I can't clean up! I'm a boy!" It's pretty funny for the most part, though I still make him wash his hair ;) Last week we watched a Bible video about the nativity story and it showed Mary crying at Christ's Crucifixion and he turned to me and said, "Mary's baby is dying and she's sad" and man, that turned me into a puddle. One thing I've learned with Milo is that he's very black and white so the emotional gray areas are still hard for him. We were at Coconut Cove (an indoor playplace) and as I walked around to check on all the kids I heard Milo repeating "please stop!" and getting louder each time. When I rounded the corner I found some older kid throwing balls at Milo's head, and Milo looking around for me, his eyes starting to glisten. His eyes connected with mine and I just saw so much confusion in them. The older kid ran as soon as he saw me, but for the rest of the day Milo said, "But mom, I told him please stop. Why didn't he stop?" How do you teach that sometimes people are just mean and don't listen to us? Especially to someone who has a hard time grasping those social nuances?
ABA therapy has helped us a lot at home. We've been able to use many of their tricks, like priming, and if-then statements to help establish good behavior. Milo's memory is unparalleled and frankly disconcerting. I don't get away with the occasional white lies or distracting techniques that I thought I'd be able to with toddlers! If I've told Milo he gets a sticker on his chart, he will remind me a full 4 days later if we haven't done that yet. Right now we've got a sticker chart going to help reinforce that we need to go to school and come home calm and happy. It's done wonders for those transitions and eventually I hope to use the same idea for other behaviors; in fact, I started using a sticker chart for Livvy for her morning routine and both of them were quite thrilled to "match" each other. Maybe all kids just love stickers.
A few other examples of Milo's progress:
He technically wasn't wrong!
In Milo's six month progress report we were happy to see that he has progressed in all areas. Some more or less than others, but quantifiable progress in everything! It was a huge relief to me because I think this last month or so I've just hit some sort of wall. I live in my car and it is oddly exhausting. I think my "chauffeur" schedule would make mouths fall open. I rarely have a free afternoon with nothing penciled in, which is frustrating because my pre-kid self wanted to make sure I didn't overschedule my kids - for their sakes and mine. I don't intend for this to come off as complaining but just understand if I've pulled back or not connected with you for a bit, it's because I've had to be incredibly intentional with my time lately.
We have no idea what's in store for Milo. We don't know when or if we'll reach a point where we discontinue therapy or if Milo will be able to go into a "normal" 1st grade class, or how long he'll need speech or any of that. To be perfectly honest I try very hard not to think too far into the future because all of those unknowns are uncomfortable for me to process. All I know is that as of today Milo is lightyears ahead of where he used to be and we are profoundly grateful. There's been so many little miracles that have happened on this path that's made it obvious to us that we're doing what we need to for him. I never anticipated how hard it would be to trust that Heavenly Father knows what's best for you kids even better than you do. I've accepted that fact in my own life, but as a parent it's been hard to watch Milo struggle and continue to have that faith. These little tender mercies have been very faith-building for me and I doubt I would be as strong today without having been through all of this.
We've been astounded by how many people have rallied around Milo and just loved him to pieces especially post-diagnosis. I was so nervous that people would treat him different or be uncomfortable around him but we've experienced nothing but support and love and it's been humbling to watch so a huge thank you to all those who love our boy! We're so proud of him and are stoked to see him progress more and more.
Anyway, today is Milo's half birthday and subsequently it marks 6 months since he started therapy and I've had a lot of people ask how he's/we're doing so I'll do my best to summarize the last few months.
Milo is doing ABA therapy at a clinic up in Lehi, three days a week. He's also going to a special preschool in Orem twice a week, and we just added more speech therapy for him on Thursday mornings. It is a LOT but we wouldn't be doing this if it didn't benefit him. Honestly, Milo's progress has been incredible. We really had no idea what to expect as far as improvements go for him but we've been so, so happy with how he's doing.
At the beginning of the month we felt that Milo could benefit from more speech therapy but with his current schedule and our family's schedule we didn't know how to make that work. So I simply Googled "speech pathologist in Utah County" and scrolled the page looking for a title that sounded good I guess? Idk I wasn't that logical about the whole thing but I clicked on the third result down and that's how we found Mrs. Paige and she's been a real answer to prayers. An hour before I called, her Thursday morning client had concluded his final session with her so that time slot opened up. No one on her 6-month waitlist could make that time work and that was quite literally the only time we had in our schedule for speech therapy. I have no doubt that this was a little miracle handcrafted for Milo.
Through Mrs. Paige we've learned a lot about how to best communicate with him and it's felt like we've been given a few keys to help unlock the doors in his brain. I've learned I can't simply ask him, "What did you do today?" because the concept of "doing" is too abstract for him. I have to get really, really specific and say, "Who did you talk to today?" or "What did you play with today?" to get straight answers from him. Kids with autism have a much harder time with abstract concepts so narrowing questions down to contain more concrete elements is incredibly helpful. Mrs. Paige suggested keeping a daily journal for Milo by asking these kinds of specific questions and I legit sobbed the first time we did it. I got more detail about Milo's day during that exercise than I ever have. It's been hard to accept that Milo is out of the house more than he isn't; I thought I'd have more time with him before he was gone this much and adjusting to those expectations has been difficult. That coupled with how little he communicates forces me to rely heavily on his therapists and teachers to know what he's doing throughout the day, and even though they're awesome about giving me that information, I still don't know if Milo had a "bad day" or how something made him feel or who he played with and if he even likes those people or not.
Milo is starting to make friends which sounds like a "no big deal" sentence but I can't write that out without crying (apparently I've been crying a lot lately). For as long as he can remember, Livvy has been his only real friend. She's been right by his side through all of this transition and even today she's the only person he engages in imaginative play with. Livvy has always seen past Milo's verbal capacities to play and love him anyway and we've been so grateful for that gift of hers. However, we've also known that Milo would really benefit from having friends outside of Livvy and we're thrilled to see that slowly happening. There's a few kids at therapy and his therapists that he likes to tell me about. Every night in his prayers he says he's "grateful for Miss Chelseigh and Miss Jordyn and Ollie and Emma".
Milo's starting to really get the hang of pronouns and emotional cues. The whole concept of gender has finally clicked with him. He's actually trying to use the fact that he's a boy to get out of a few things. "I'm a boy mom! I can't wash my hair!" "I can't clean up! I'm a boy!" It's pretty funny for the most part, though I still make him wash his hair ;) Last week we watched a Bible video about the nativity story and it showed Mary crying at Christ's Crucifixion and he turned to me and said, "Mary's baby is dying and she's sad" and man, that turned me into a puddle. One thing I've learned with Milo is that he's very black and white so the emotional gray areas are still hard for him. We were at Coconut Cove (an indoor playplace) and as I walked around to check on all the kids I heard Milo repeating "please stop!" and getting louder each time. When I rounded the corner I found some older kid throwing balls at Milo's head, and Milo looking around for me, his eyes starting to glisten. His eyes connected with mine and I just saw so much confusion in them. The older kid ran as soon as he saw me, but for the rest of the day Milo said, "But mom, I told him please stop. Why didn't he stop?" How do you teach that sometimes people are just mean and don't listen to us? Especially to someone who has a hard time grasping those social nuances?
ABA therapy has helped us a lot at home. We've been able to use many of their tricks, like priming, and if-then statements to help establish good behavior. Milo's memory is unparalleled and frankly disconcerting. I don't get away with the occasional white lies or distracting techniques that I thought I'd be able to with toddlers! If I've told Milo he gets a sticker on his chart, he will remind me a full 4 days later if we haven't done that yet. Right now we've got a sticker chart going to help reinforce that we need to go to school and come home calm and happy. It's done wonders for those transitions and eventually I hope to use the same idea for other behaviors; in fact, I started using a sticker chart for Livvy for her morning routine and both of them were quite thrilled to "match" each other. Maybe all kids just love stickers.
A few other examples of Milo's progress:
- He named his stuffed dog "Roger" (he's never named anything - that imaginative play thing again).
- He's starting to make up stories to go with the pages in the book (again, imaginative play).
- Saying, "I" or "me" instead of speaking in 3rd person.
- Being able to talk himself out of a tantrum ("no Milo, use calm words to talk!").
- Flipping if-then statements back to me. I was telling him if he got his pj's on, then we could watch a show and he slyly said, "If I watch a show, then I'll put pj's on!"
- He's staring to really nail down prepositions, though we have to make sure we're really specific with them. A few months ago Kyle asked Milo to put the paper towels back under the sink and this is what we got:
In Milo's six month progress report we were happy to see that he has progressed in all areas. Some more or less than others, but quantifiable progress in everything! It was a huge relief to me because I think this last month or so I've just hit some sort of wall. I live in my car and it is oddly exhausting. I think my "chauffeur" schedule would make mouths fall open. I rarely have a free afternoon with nothing penciled in, which is frustrating because my pre-kid self wanted to make sure I didn't overschedule my kids - for their sakes and mine. I don't intend for this to come off as complaining but just understand if I've pulled back or not connected with you for a bit, it's because I've had to be incredibly intentional with my time lately.
We have no idea what's in store for Milo. We don't know when or if we'll reach a point where we discontinue therapy or if Milo will be able to go into a "normal" 1st grade class, or how long he'll need speech or any of that. To be perfectly honest I try very hard not to think too far into the future because all of those unknowns are uncomfortable for me to process. All I know is that as of today Milo is lightyears ahead of where he used to be and we are profoundly grateful. There's been so many little miracles that have happened on this path that's made it obvious to us that we're doing what we need to for him. I never anticipated how hard it would be to trust that Heavenly Father knows what's best for you kids even better than you do. I've accepted that fact in my own life, but as a parent it's been hard to watch Milo struggle and continue to have that faith. These little tender mercies have been very faith-building for me and I doubt I would be as strong today without having been through all of this.
We've been astounded by how many people have rallied around Milo and just loved him to pieces especially post-diagnosis. I was so nervous that people would treat him different or be uncomfortable around him but we've experienced nothing but support and love and it's been humbling to watch so a huge thank you to all those who love our boy! We're so proud of him and are stoked to see him progress more and more.
Jessica I loved this post. You are doing an incredible job!!! He is doing so well and we do love him to pieces. Just wish you were closer so I could help with the driving!! Love to all of you.
ReplyDeleteG'ma D
!