Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Friday, January 27, 2017
Wow. New Blog Post.
I haven't posted in more than a year. And our 2016 Christmas Letter (Valentine's Letter?) is still unfinished and we didn't send Christmas letters the previous two years so some of my readers are probably wondering if I dropped off of the edge of the Earth. (Which is silly because the Earth is round so it has no edges, but still.) Here's a quick review of our prominent stressors:
1. My father-in-law's health started deteriorating during the 2015 Christmas season and never recovered. My mother-in-law was able to care for him at home until July when he moved to the hospital and thence to hospice. He died August 25, 2016. He suffered from multiple disabilities but it was metastastizing cancer that finished him in the end. My husband, his sister and his mother prepared a beautiful memorial which you can actually watch here, if you so choose.
I had a complicated relationship with him. Years before, when he was healthier, we spent a lot of time together and had some really fun times. But as his disabilities took over more and more of his life, he was harder to be with because he really wasn't the same person as before. And processing grief is an uneven, unexpected experience, especially when my besetting sin is anger. And I was very angry. We spent 15 years watching him die by inches and that is a horrible experience. It batters your heart constantly until you are past exhaustion and just want it all to end. Now, 5 months later, it's easier to miss him and not be so infuriated by the helpless feeling that permeated our relationship for years. He was a remarkable man, nonetheless, and life is a little more mundane without him.
2. Alex started at Archway Lower School in late January, 2016, and it took a while for him to feel comfortable in their program. Now, after a year, we feel secure and happy with his teachers and school structure. And, since they have an indoor pool at the Lower School, I'm not sure he'll ever want to move up to the Upper School. Maybe. One year at a time. This is only 7th grade. But he loves his teachers, is coping better with his non-preferred activities (cooking class and gym!), and has a BFF. And we're going to try piano lessons next week; I give it 50/50 chance of success. And since we get to keep our district Case Managers that we've known so long until the end of 8th grade, we're golden until 9th. Our district feeds into a regional HS so we'll get a new case manager then. Hopefully, they won't quibble at the cost for Archway, because they will have to pay for it. I don't see us changing his placement any time soon; he's thriving now and I wouldn't upset that for anything.
3. Third grade was really tough for Miranda. She became the target of several groups of bullies and spent so much of her time feeling awful. The school personnel really tried to protect her but some bullies are particularly good at waiting until the teacher's back is turned and striking then. And 9 year old girls can be particularly unkind to each other; that hasn't changed because I remember that. But her academic and emotional supports were strengthened in her IEP and we all weathered the storm. 4th grade so far has been a lot more positive at school in terms of classroom interactions, but she has started adolescence and as her body is changing and growing, the hormones bathing her brain can make her grumpy and her mood swings violent. But, at least Alex is stable, so we can cope better with Miranda's growing pains.
4. I did not have a good 2016. I tend to sublimate my stress so deeply that my health breaks down, so I had lots of mystery fevers and periods that wouldn't end. This is in addition to my chronic, treatment-resistant depression. I have a good doctor, I have a good counselor, but we tried 3 different meds in 2016 to help me cope. My current cocktail seems to be working better especially as many of the stressors are lessening, but the long dark of the winter is hard. It helps to be on a regular schedule of Bible study, Youth Group and occasional MOPS Next meetings. And weekly dinners with my parents, and time alone with my husband (thanks to my parents). But I'm pretty much dug in until spring, reading lots of books (I love Goodreads) and watching tennis and Premier League Soccer. I am currently 4 days behind on watching the Australian Open so don't tell me who won!
5. Last Monday, 4 days ago, my husband started a new job, changing from a place of employment where'd he'd been working for nearly 13 years. Big change. He is tremendously happier because the commute is a quarter of the previous driving time, local, work from home is encouraged, and he's working now in cloud computing and he loves to stay up with what the technology industry is doing right now. He's also working with his bestest friend from 15 years ago, which cheers him to no end. He left his previous employer on good terms and wished them well, but left happily with the promise of new challenges.
Now, as a family rife with ASD, we hate change, even change for the better. We are beginning to adjust (seeing Daddy a lot more is always cool) but it will be way different when he's working in a home office that he will carve out of the living room. But if Daddy is happier, everyone can be happier. I will just have to plan to cook a meal. Or three. Per day. That will be weird.
6. Marshall's mother is adjusting as best she can. There was a lot of cleaning to be done in the office and basement and she's making good progress on that. We help her as we are able, as does the rest of the family. But it is a big change.
7. One good week we spent last March was in San Antonio with dear friends. I am taking the kids back this year, but Marshall will not have earned enough vacation yet with the new job to come with us. Still, we're good at flying now and looking forward to the time away. It will be warmer there; we might need swim suits.
And there you go, 2016 in brief. If you don't read Anne Kennedy's blog, you should. Buy her book, too, assuming you've already purchased my mother's book. And here's Kelly.
Posted by Sarah Boyle Webber at 4:16 PM
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