Summer’s End…


It’s been a busy summer. We’re still in the process of going to specialist appointments for the Philosopher, and then things became even more complicated when the Professor hit his head over a month ago. He just stood up underneath the corner of a cabinet (proprioception is a common problem in autism), and initially we were told it was only a “mild” concussion. Unfortunately, he developed “Post Concussive Syndrome,” which means if he exerts himself at all he ends up with severe pain in his head and nausea, while he’s dealing with variable rates of head pain pretty much constantly. “Exertion” can mean anything from sitting up too long to just thinking too hard — something that is really hard for an autistic to avoid. His OCD has been a lot worse as well which, ironically enough, also leads to “exertion”. Needless to say, it has been a very difficult month, and we really have no way of knowing how much longer it will last – 3 to 6 months is common, and even longer than that is not unheard of… Our poor Professor is bored out of his mind, and I’ll admit I’m afraid he’s pushing his current boundaries too hard, which might be slowing down his healing process. I just can’t figure out how to keep an 18-year-old autistic young man “calm” for weeks on end!  He’s miserable! They think the reason that his brain isn’t healing “properly” is simply because his autistic brain isn’t handling the trauma like a neurotypical brain would… whatever the reason, it has made day to day life decidedly “unfun” for him. Even translating his thoughts from pictures into words has become much harder – so communication hasn’t been easy – and his memory which he’s used to having work perfectly, is unreliable. He repeats himself and loses thoughts in the middle of speaking them, which frustrates him. He misses playing music, programming, and learning languages… just to name a few things. Thanks to our genetic collagen disorder, all the laying down he’s having to do is causing him to have a lot of muscle and joint pain as well, on top of everything else. Please keep the Professor in prayer — this is just so hard.

On a happy note, the Philosopher worked so intensely in physical therapy that he’s managed to avoid surgery for now. :)  We have to monitor his tethered spinal cord and keep an eye on his symptoms… hopefully we can avoid the surgery indefinitely. We’ll see. For now he’s on a strict physical therapy regimen and we’re taking things one day at a time.  His pain levels aren’t great, and he’s struggling every once in awhile with depression a bit, but he’s hanging in there. The kid is definitely keeping himself busy! Not only is he staying on top of all his “lessons” – he’s begun a youtube channel, and keeping up with his friends from around the world. I’m proud of the way he’s managed to develop friendships with others, despite his autism and health limitations. Thanks to the internet the Philosopher is probably one of the most socially active autistic kids around. :)

I finished the web design class that I was initially so excited about. Thank goodness. I’m done with college for now. I just can’t force myself to do something that makes me miserable (no matter how much I want to like it), and costs sooooo much money!!! The financial hit is crazy, and while I might be able to excuse the money for the hope of a long term benefit, I just can’t force myself to do something that takes up so much time and bores me to death when it’s costing me so much. Even the classes that I really find interesting lose their appeal after the first 4 weeks or so. I need to be able to move on when I’ve finished learning a topic or I just end up miserable.

The reality is, I might be the only 4.0 student who hates “school,” but I do. I love to learn — but I hate the way “school” is set up as an institution. I hated it as a kid despite how “good” I was at it (which is why I loved finally being homeschooled), and I still hate it — there’s just no getting around it. I’m officially a sophomore now, but barring a miracle, I’m not wasting any more of my money on “college”. I’m going to focus on my birth doula and death doula studies, and enjoy my life. If there’s one thing my hospice work has taught me, it’s the reality of how brief our lives really are — I don’t want to waste my time here being miserable when it isn’t necessary. The ability to learn is a blessing that I want to take advantage of without the boundaries of  professors and boring assignments. Only school can make something like web design boring! It’s not the teacher’s fault either – it’s just the system – it’s set up with a power structure that drives me crazy. I’m done.

One of the big pluses of being able to focus on my doula work now is that I’ll be done with my birth doula studies by the time my new nephew’s birth comes around. I’m already feeling much more prepared to offer practical support to my sister than I felt at her last birth, and I didn’t do too shabby of a job then! :) I’m actually really impressed with how well this particular program has been put together. It’s the first birth doula certification I’ve found that emphasizes the influence of every aspect of a woman’s life on her birth — including her spiritual life. When I began, I was hopeful that it would be what I was looking for, but it has surpassed my expectations — and being able to go at my own pace, despite what life throws at me, has been really helpful lately.

There is the possibility that we will have more going on this Fall as well, but it’s a bit “up-in-the-air” – we’ll see what the next few months bring. Life is definitely an adventure around here, and I’m learning not to take any of it for granted. So much drives me to my knees…

but that’s Grace too.

It’s all Grace…




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