Equipment Update

     We have two pieces of equipment, but several things that serve as adaptive gear for Leo. I'm still learning the definitions. Or why is it important to make a distinction, haha? This is an update on the adaptive things that Leo has been having a harder time with that we hope to incorporate more into daily life in the future. 

    Stander: pretty self-explanatory. We've had it for almost two years, I think. When we first got it, I was under the impression that I'd be putting Leo in it for meals regularly so that he could be held up while he ate without me having to do it every time. Well, not quite how it worked. 

    Leo's body's natural way of moving is into an extension. His head turns to the right and he almost tries to push it further (to looking behind him). His one arm extends, the other bends. His hips thrust forward and his legs go straight, like with crazy strength. And his feet point and turn in. This is a little weird to describe. He's not in that position constantly, but when he is excited or aggravated or just expressing his body moves into that position. It's very unnatural movement. I say it's his natural because the way that the brain damage rewired his brain led to this being his reflex. 

    Anyways, I'm describing this to hopefully illustrate that Leo does not like equipment. Anything that holds his hips in place--especially in a seated position--feels very not natural to him. And boy has this been a journey. Initially, putting Leo in his equipment meant 10-15 minutes of painfully trying to distract a boy who was grunting, grinding his teeth, pushing into his extension with crazy strength, screaming, and kind of soaking himself in sweat. I'm definitely describing the most dramatic it was. But it's not far off from the truth. It was very hard to have him in the equipment when he would regularly drench himself in sweat trying to get out, or expressing that he wanted to get out. One of his therapist would distinguish between "unhappy" and "losing his mind." 

    I've probably talked about this stuff on the blog before. But just in case you missed that post (I don't remember what I said) and just to give a full picture in this update :D

    So when we first received the equipment, it was recommended to me to have Leo in the stander an hour a day (do that two times if possible) and then an hour in the stroller. OH, also go to all of your appointments, feed him, take care of pukes, try and keep him from puking, do therapies, have a social life, get enough sleep, eat well, and don't crumble. Again, I exaggerate a little. But this was when we were much more in crisis/survival mode and it was all pretty overwhelming. 

    Equipment time just happened when it could. I would go through phases of having goals for the stander and/or goals for the stroller. In general, my goal was to get him in one of them a day. What also came along with the equipment for me was the really hard question of "What can Leo control?" I felt constantly conflicted while he was in the equipment with "is this his body doing what his body does or is this him expressing that he doesn't want to do this? And if it is behavioral then how the heck to I address it? And then, what if I say it's behavioral but it's actually not? What if I get it wrong?" And in that train of thought, my little brain would then go to "what do people from the outside see?" and that's just a train of thought that no one needs to go down. 

    Through all of that, equipment very much was on the back burner for me. Towards the beginning of this time Leo was still failure to thrive. So that was our priority when it was around. Mostly trying to work toward one of them a day. 

    Another big factor for me as to why Leo's equipment was difficult to balance was because I took it as a value statement about myself. I was hesitant to set a goal and say "3x a week in the stander and 2x in the stroller" because when I didn't keep to this goal perfectly I would feel so bad about myself. Hard thing to balance, 

that whole set a goal and don't make excuses and practice discipline and also give grace and know when you are not perfect and don't attach your value as a person to the success or failure of this goal.

    I know that some people relate to that and some don't. I also know that this feel can apply to a lot of areas of life. 

    Fast forward through all of this to about 3 months ago. I was talking with one of Leo's physical therapists about constipation management. Regular time in the stander really helps with constipation. We had talked about this before. But I think I was in a different place mentally this time. And we were really looking for constipation management that had less to do with medicine. So however God aligned the factors that day, I started aiming for more stander time with Leo. The goal was to put him in the stander once a day. It could be for 5 minutes. It could be for 45 minutes. 20 minutes was about normal at that point. And the days that we didn't get it in, it was ok. Life got in the way, or laziness, or rest. So stander time became more of a daily thing. 

    Around this time I was also stepping away from screens more. This meant that when Leo was in the stander we had more focused time. He wasn't doing something by himself and I wasn't half paying attention to him. He got 100% of my attention. We played a game or with a toy or whatever. So stander time was looking different for him and for me. I also realized that compared with when we first got the equipment, I know Leo a lot better. I understand his body more than I used to.

    And that is important because that question of what Leo can control vs. not control is a little quieter in my brain. It's still there. It's not a black and white thing. There's a lot that skews my perception of how to push Leo and there's a lot that gives me a really clear perception of how to push him. Our time in the stander has gotten less stressful and more fun. Leo's also getting a bit more independent in it. Getting more accustomed to putting him in the stander led me to trying a meal in the stander. And then I tried putting him the stander so that he could hang out with me in the kitchen and we had a blast. 

    I feel like my approach to the stander has completely changed. I don't question what he controls as much. And I don't question his comprehension of what I'm telling him. I know that I don't do it perfectly, but that's not what it's about. I'm thankful that I can view the stander as help in constipation and not 'this is what keeps his body from developing in a way that I don't want it to.'

    A note about that. So that's a fear that gets into my head. The stander is good for strengthening Leo's core, giving his bones and hips the opportunity to bear weight, and holding his feet in weight bearing position and not turned in. Time in it is really, really good for his body. I just hate facing the fear of what his development could look like, and the voice of "if I had done something different maybe I could've stopped __ from happening to his body."

    All of that to say :) Leo is spending a lot more time in his stander these days. We are enjoying getting to play with him in that position. He's enjoying experiencing seeing the world from that perspective. Communication is ever growing between him and us and it's just really exciting. And on the days that we don't get into the stander, mentally I'm not stressing. I'm taking notes about how his digestion is the next day. And we're just going on from there!

    As far as the stroller, Leo's been getting bigger and it has necessitated the use of the stroller more. So, we've been using the wonderfold for about a year. It was seriously given Leo and I a YEAR of mobility. We could go out of the house together and he wasn't scream and my back wasn't screaming. But in the past couple of months, Leo has been noticeably pushing against the front of back of it with his head and feet. The boy is long (and I don't know where he gets that from)! We've done some walks with him in his stroller. And we started taking it places. The biggest switch mentally for me was reminding myself that he didn't have to stay in the stroller the whole time. We go out to eat. He can be in the stroller from the car into the restaurant. Once he is losing his mind in the restaurant, then we take him out and he sits with one of us. He can sit in the stroller from the restaurant to the car again. It was changing my expectation of going out and about in the stroller to not putting a time expectation on it. And, again, the more time he is in the stroller, the better understanding we are getting of what he is communicating and how to address the tantrums that can come with the stroller. 

    It is totally fine that Leo does not like the stander and the stroller. And it is such a gift that he can communicate that to us. It is stretching for Brad and me to handle the behavioral aspects of how to address equipment time. I know that every kid is different so you never have a blueprint of how to do it. But Brad and I just never pictured parenting looking like this so it's a lot of thinking through what we thought and thinking about it differently if that makes sense. 

    Some bigger milestones for the stroller have been that I was able to do a trip into Philly on the train with Leo in the stroller. He has sat in the stroller for an hour when distracted. We are taking it regularly to church. And overall Leo is enjoying it more. He can see the world better in his stroller than from laying down in the wonderfold. 

    The biggest thing that has surprised me in all of this stuff about equipment has been the work that God has done in Brad and I and our mental approach to these things. God's been teaching us how to be parents. He's been teaching us about what Leo needs and who He wants us to be. It's just been the coolest thing to experience the difference that my mental approach to things can make in parenting. 

    A little p.s. of sorts: I say "I" a lot in this. When it comes to the day-to-day stuff with Leo, I initiate a lot of conversations about this sort of thing. I process things individually and then bring it to Brad, or bring it to him when he is not working. My perspective on things concerning Leo and care is different because I am with him the majority of the time. But Brad is engaged in these conversations, initiates some of them, and knows Leo's needs just as well as I do. I just mean to say that it is very much a team effort, but I have a different perspective being with Leo full time. 

    Peace out. Happy Christmas time <3