Monday, December 31, 2018

Brain Fog

Brain fog is a general term for dysfunctions in focus, learning, 
and memory that can create brief episodes of confusion, disorientation 
and frustration. Brain fog is a source of anxiety for many patients.
--random Google quote; true, though

2018 did not go as planned.

I know, tell me something you don't already know.

I had plans. Specifically, I had blog plans. I was all ready to retire this particular blog and start a new one (I hope I have it saved somewhere because I cannot even remember the title). I was all set to post photos and poetry (not my own) to bring our far away friends and family up to date (somehow, it's become too hard to write Christmas letters anymore--too many feelings, too little rest) and then 2018 came screaming into being as the year of the adolescent girl in the house who is terribly unstable.

Everyone who has experienced adolescence with autism has warned us that it's like life is turned up to 11. And they are right. And our poor girl got my genes which means puberty = instant clinical depression. Lifelong. Just a wee bit discouraging. So we spent the winter and spring trying to rebalance Miranda with meds and counseling and additional supports at school. And we made some headway. But then summer came and all the things that were fun last summer that we planned to do again, she hated. And then September came and we needed to readjust her meds again since she'd grown several inches and ran smack into two more medical crises. Which we are still trying to recover from. If I never have to take her to another doctor's appointment, it'll be too soon.

Our poor boy's body decided not to start adolescence on it's own, so we're using medication to jump start his system and consequently waiting for his next shoe to explode.

In June, I was diagnosed with chronic Epstein Barr, which means I tend to run a low grade fever almost all of the time and thus have limited energy and wear short sleeved shirts if the temperature is above 40 degrees F. I got a lot of reading done this year because I spent so much of it flat on my back.

So here I am, at the end of 2018, trying to scrape through the constant brain fog (an actual side effect from the anti-depressant that allows me get out of bed in the morning), wondering what was the year for?

The famous Eugene Peterson quote, "A Long Obedience in the Same Direction."
One of the advantages of having classified children with IEP's is that you work with teachers and case managers who are required to keep creating new goals for your children once they've achieved the previous ones. You keep moving forward, regardless of how many tries it takes to make that next step. You keep in touch with the teachers frequently so you're all steering in the same direction.

Find Ways to Start Over
I had a particularly bad day with Miranda recently. By noon, everything had gone wrong and she was sick, again, and then threw up the antibiotic. So, I took a tranq, took a nap, and started over at 4 pm. I have to keep remembering she is not the same as I am and doesn't do things my way. I can't force her to do much anymore, so my persuasive skills and patience have to be what I reach for first.

Remember Significant Achievements
Alex started the Work Study program at Archway in the fall of 2017. They have a successful program of training kids with his kinds of abilities to work in the outside world. We were enthusiastic; he was not. For more than 6 months, it was the worst part of his week and he resisted all attempts to make it anything but personal torture. But his teachers persisted, and it slowly got better. And then it got better at home. He can (almost) clean his room without assistance. He does the trash, the recycling, the mail without complaint. His sister whines for days about taking 5 minutes to empty the dishwasher while he just carries on and gets his stuff done.

Say Goodbye to (Most) Chocolate
I am a chocoholic. I started binging on chocolate candy when Miranda would spend so much time screaming and refusing to be comforted (years 2 and 3 were pretty painful). My body doesn't tolerate alcohol very well and my current anti-depressant hates it, so a glass of wine is a difficult thing for me to swing. So dark chocolate Reeses peanut butter cups and York peppermint patties became my best friends. But when I was diagnosed with Epstein Barr, I realized the large amount of refined sugar I was eating every day was not helping my immune system. So I went through a typical 30 day withdrawal period (seriously not fun) and survived it and feel better on the other side. The holidays are difficult, as they are for many of us, but I still feel better.

Aside: I have been complaining, in recent weeks, of the overwhelming amount of sweets that are everywhere at holiday parties and celebrations. And yet, with my parents' help, we gave out several dozen plates of fudge to all the teachers, therapists, case managers and bus drivers that my children have accumulated this year. Hypocrisy much? We give fudge because it's economical to do in large piles to the large numbers of people we want to thank. And it's a family Christmas thing. Sigh. Again the classic American problem where healthy food is expensive and refined sugar treats are cheap.

Looking forward
I expect 2019 will be as complex medically as 2018 was. Thankfully, I have amassed a pile of good doctors and therapists to help us through. I am starting to rearrange my life to accommodate my decreased energy and am thankful for the many others who are picking up the slack. I am thankful for my church and the many ways I am encouraged by my involvement there. I look forward to seeing my extended family in San Diego in March as we celebrate the life of my paternal grandmother who passed earlier this month. And, if you stalk me on Goodreads, you know my TBR pile never gets smaller. Now if I can just find the time to go see Aquaman.