I started this blog almost nine years ago with a list of things I planned to accomplish by my next birthday. I had gotten the idea – of the list, not the blog – from a book I’d read about a woman who took over another woman’s list of big goals and it changed her life. The things on my list had nothing to do with the every day activities of my life at the time and I think that was part of the point. My life was changing in ways that, for the first time in my life, I had absolutely no control over.
Before I had kids, my life sometimes felt out of my control, but it never really was. Of course I had moments when someone else exerted control over me or their choices affected me in ways that made me feel powerless, but the way I moved on from those moments was always up to me. I got to choose the general direction of my life. When I didn’t like jobs or boyfriends or friends or living situations I could choose to leave them behind. I was even lucky enough to be able to choose to stay home with my first child. I had been consistently employed from the age of 16 to 37, but leaving that behind was still my choice. How I handled being a mom to our first baby and then to our second was still under my control.
But nine years ago I first heard the term pervasive developmental delay and my life was suddenly no longer under my control. I was standing in this room, back when it was a spare bedroom rather than my office, on the phone with Dr. G when the world dropped out from under me. I was suddenly propelled into a world of occupational therapy and speech therapy and decisions about evaluations and whose advice to take because nobody seemed certain about anything anymore. I was faced with choices I didn’t know how to make with repercussions I couldn’t fathom, let alone process and understand.
So, looking back, I’m not surprised that I made a list of goals that I could accomplish. It was my way of reconnecting with a familiar world where I had control over outcomes. I made a list of five goals and started a blog I named Destination 140, though it might have been called Desperation 140. I accomplished almost everything on the list by my deadline, too.
- I read 20+ books that I already owned.
- I learned how to knit and made a placemat and half a scarf. I haven’t knit a stitch since, but I think about picking it up again sometimes.
- I wrote a book with a beginning, middle, and end, though it is still unfinished nearly a decade later and I’m STILL working on a version of it almost a decade later.
- I ran a 5k with BC Maven’s help. God, I miss her. Cancer killed another good friend a few weeks ago, one day shy of her 34th birthday. BCM was 35. Fuck cancer.
- I lost 80 pounds from my peak pregnancy weight. I was supposed to lose 100, but decided that I got close enough to count.
- I fit into the purple dress…and started the climb back to my peak pregnancy weight where I currently sit.
None of those achievements changed my life, but this blog did. Writing this blog helped me sort out my feelings about autism. It helped me improve my writing in ways that still surprise me when I look back. It revealed things about myself that I didn’t know until they poured out on the page. It helped me connect to people, even my husband, in ways I’m not capable of in the moment. In person. I even had a friend tell me recently that she knew my blog before we met.
This blog helped me find my authentic voice.
Then the 2016 election happened and I was so appalled by the outcome and the subsequent attitudes of people I had considered friends that I stopped posting here. In truth, I stopped writing altogether. I still have trouble stomaching where we are as a country, as a society, really.
I think I would have eventually come back to this blog, though, had it not been for the school situation. I had blogged about the bullying situation Zoo Keeper experienced in the 2015-2016 school year, discussing the advocate a little bit, though not as much as I thought I had. I put a summary in the post Rock Bottom. In Climbing Out, I wrote:
“Our happy, smiley, silly boy had turned sulky, scowling, and snappish. And angry. His anger was always just below the surface, ready to pounce. His OTs, psychologist, and I all talked to him about figuring out what his body feels like while he’s getting angry so he can learn to do some self soothing before he starts screaming. Or growling. He maintains that it happens too fast to do anything about it, which I think means it’s still too close to the surface all the time.”
We hoped the 2016-2017 school year would be better, but it wasn’t. By the end of that school year, he was home with me much of the time and we pulled him out of public school in desperation after a particularly combative IEP meeting. We put him in a private school that takes special care with traumatized kids for the 2017-2018 school year. Though he liked the school and the teachers there, he refused to go most of the time due to PTSD from the public school situation. He spent most of the year at home with me. His brother also requested to be moved to this private school and by the end of the school year they were both home with me most of the time.
After winter break that year, Zoo Keeper refused to go to school for two solid weeks. He had daily panic attacks, sometimes lasting hours, and the only way I could talk him down was by discussing suing the school district. By the time I got him to go back to the school building, I was convinced that’s what we needed to do, so I went looking for a special education lawyer. Once the lawyer got involved, the school district decided to find an appropriate placement for Zoo Keeper to start in the fall.
I had signed both boys up for summer camps, but BamBam’s depression had already come to a point where he was missing lots of school, so I shouldn’t have been surprised that he refused to attend summer camp more than one day a week. Once again I had a kid at home with me almost all the time.
We had also gotten a dog that was supposed to have been trained as a sensory companion. As it turned out, that meant he needed me to meet his sensory needs. With our other dog and the boys home most of the time, it was like I suddenly had four preschoolers home with me. One of them likes to bark a lot.
Basically, I’ve been running on empty for a long time.
But fall of 2018 brought some relief to our family. The new placement for Zoo Keeper is going really well. He is almost back to the sweet, funny, happy kid he was before third grade happened. It’s wonderful to see him happy again. BamBam is there, too, and he likes it, though he’s not making friends as fast as he’d like. We had tried some depression and anxiety meds for him that didn’t work, so we had a genetic test done that verified those particular meds were not good for him. He’s been on a new one the test recommended for a couple of weeks now. Can’t tell if it’s working yet, but at least it hasn’t made him more depressed like the other two did.
There are still issues for both of them, but I think the dark days are behind us. For now, at least.
I was able to get away for two whole weeks by myself in October. My mom came to stay with Sparky and the boys – Thanks Mom!
I’ve found myself ready to get back to blogging. I’m ready for a new list. But, unlike the one that kicked off this blog, the new list isn’t about finding my way in a new normal. This one’s about reestablishing myself now that I have a little bit of time to focus. I guess it’s about reintroducing focus into my life. Hello, Focus, I’ve missed you.
Where the previous list was about taking some control back, the new one is about focusing my energy to achieve my goals. I think I need a new blog for that. As this blog grew far beyond the list I made at its inception, I’m sure the new blog will grow beyond its list. I’m hoping to be more of a resource for families with special needs at the new blog, but I’m sure there will be plenty of introspection, too. I can’t seem to help myself in that area.
So, this will be my final post here on Life with the Quirky Boys. I hope you will join me in my new digs over at Mockingbird Jane. Please come subscribe – it’s kind of lonely over there right now. Plus, I wrote a children’s book that I’m about to publish (EEP!) and I want to tell you all about it.