The New List

Posted by on Nov 5, 2018 in Autism, Depression, Musings, The List | 0 comments

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.

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Posted by on Jul 3, 2015 in Depression | 4 comments

Image is a woman holding a box of popcorn, watching a movie, and wiping tears from her eyes.

Image is a woman holding a box of popcorn, watching a movie, and wiping tears from her eyes.

Went to see the sensory friendly showing of Inside Out on Saturday. One minute I was laughing hysterically at this clown bit and the next I was crying uncontrollably. Over nothing in particular. Ever since then, I’ve been choked up. All. The. Time. Seriously, every single minute.

I’m a walking exposed nerve.

Every time I speak, there’s a good chance I will burst into tears. I can feel them in my throat. I don’t even have to actually speak out loud – sometimes I just thinking and BOOM!

Some of it is about Book Club Maven, or some altercation between Annie and the boys, but a significant amount is over nothing.

Well, not nothing*, but anything that’s remotely touching. Or righteous, especially if it’s overdue. Not a good weekend to learn about federal gay marriage. I cried three times just writing that sentence.

" up: Walking on Sunshine." Image is a crying woman in car with her hands over her face.

“…next up: Walking on Sunshine.”
Image is a crying woman in car with her hands over her face.

*Not long after I wrote this, I was driving the boys somewhere and started crying at the song on the radio. It was Twist and Shout. I’m officially crying over nothing.

I hate this. Not the crying itself, but not being able to control it.

Last night, Sparky and I watched the episode of The West Wing where they nominate Mendoza for the Supreme Court. We were half-way through when I realized the foolishness of watching anything Sorkin in my emotional state. Particularly Sorkin where Rob Lowe pontificates about the right to privacy. Two words: Water. Works.

I paused the television and remarked to Sparky on my ill-fated show choice. He offered to stop and watch something else, but it wouldn’t have made a difference at that point. The idea of what was coming had left the station and there was no way to stop that train. It was going to happen either way, so I might as well enjoy the beautifully crafted speeches, right?

Sparky also told me it was okay to cry – especially at home with just my hubby and dog to notice. That’s when it occurred to me that I’m not embarrassed. I mean, I was pretty embarrassed at the movies on Saturday, but embarrassment is not why I hate feeling this way. Has nothing to do with it, really.

After all, I throw my uncensored thought up here all the time for anyone to read. Embarrassment is essentially a speck in my rear view mirror.

I hate the feeling of being defenseless against my own emotions.

I have defense mechanisms, humor first and foremost, that work exceptionally well for me. I’m like Wonder Woman and humor is my golden bracelet. I’m really more a Marvel girl, but WW seems like the best analogy here. Anyway, I was okay with taking the bracelet off to cry for BCM last week, but now it’s like I can’t find it, no matter how hard I look, and I’m under constant attack.

I’m used to being strong and in control, but now it’s like all of my defenses have shorted out and I don’t know when, or if, they are coming back online.

I need to pull myself together, but I don’t have a clue where to start. I’m venting, not asking for help. But, because I love the irony, I’d like to recognize that BCM would be the first person to read this post and tell me exactly where to look for that damn bracelet.

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How The Vampire Diaries Helped Me Cry

Posted by on Jun 19, 2015 in Depression | 1 comment

If you had asked me yesterday, I would have said my current state of depression was triggered by the sustained overstimulation I experienced throughout the month of May. I had no idea it had anything to do with BC Maven until I was on the floor sobbing.

I’ve been mainlining The Vampire Diaries on Netflix the past few weeks. That’s why I haven’t posted; I have done almost nothing other than watch this show. Seriously. I’ve gone through five full seasons in two weeks.

My favorite thing about the show is Damon. I’m not usually one to go for the bad boy, even one with eyes like Ian Somerhalder’s. Damon does horrible things and everyone hates him, but he totally owns it and I like that. He is totally himself and doesn’t care what anyone thinks about him. Plus, good snark will get me every time.

Eventually Damon has friends, even an epic love, but he doesn’t change his essential self. He still does bad things, people know this about him, but they love him anyway. I think it comes down to his motivation: love. He will literally do anything for the very, very small circle of people he loves.

Which brings me to Alaric. The friendship between Damon and Alaric is my favorite relationship on the show. Damon has lied to Alaric. He killed Alaric’s wife as he watched (though Damon didn’t know he was there). Hell, Damon even killed Alaric a couple of times. But they got past all that and formed a deep bond.

When Alaric died for real (oops, spoiler, but he does show up again), and everyone gathered to remember the dead, Damon refused to participate. Instead, he went to Alaric’s grave and mocked the others aloud. And pointed out the birthdate on the headstone was wrong. But Alaric knew what he meant. His response, though Damon couldn’t hear it, was, “I miss you, too, buddy.”

Damon doesn’t show his emotions. I don’t mean the general, everyday emotions, I’m talking about the deeper ones. In the world of the show, vampires can actually turn off their emotions, so most of the time Damon pretends he doesn’t have any. He does and he knows it, but he doesn’t want other people to know it.

I can turn off my emotions. I’ve done it so long and pushed them so deep that I used to think I didn’t have any. At the same time, I would wish I didn’t care so much what people thought of me. I know those two statements are diametrically opposed, that they cancel each other out, but that doesn’t make them any less true.

I don’t know if that’s an autism trait or a me trait. Or maybe it’s how everyone is and I just think too much. The therapist who diagnosed me mentioned this wavering between feeling nothing and feeling too much is common among autistic women. I looked for research on that, but couldn’t find anything. Either I just haven’t hit on the right string of search words or I now have a topic for a dissertation I have no intention of writing.

I have a couple of things to talk to BC Maven’s husband about. Have had for months, but I’ve been dragging my feet. I thought it was because I was busy and overwhelmed. I am, but that’s not the reason. I think about her a lot. Things we talked about or things I would talk to her about now. But I don’t think about her death. I’m not in denial; I know she’s dead. I just don’t think about the fact that she’s dead. Her husband is a great guy and I really want to support him in dealing with life after her, but contacting him is not something I did when she was alive: I talked to her.

Contacting him instead means that I can’t contact her, which makes me think about why I can’t contact her and I’ve already said I don’t want to do that.

And then I couldn’t not think about it anymore.

Since I’ve watched five seasons of The Vampire Diaries in two+ weeks, I knew I was depressed. Yesterday I got a text from an old friend I haven’t seen in years. She was in town for the night and wanted to meet to catch up. The thought of talking about what’s going on in my life and of listening to what’s going on in hers filled me with dread. Not because I don’t want to see her. I’d love nothing more than to hang out with my friend. But I’m not in a place where I can hang out with anyone really, especially not if I need to be engaged. So I told her that I wish I could, which is the absolute truth. Sparky pointed out that I could have told her why and she would have understood. I have no doubt about that, but it would have required me to say more in explanation and I just couldn’t.

The text made me think about the fact that I haven’t shared certain things in my life lately with anyone beyond Sparky. I’ve thought about posting to one of the Facebook groups I talk to about such things, but I haven’t. I think I would have if I had been able to share them with BC Maven first. I teared up at that thought. I walked a few feet, telling myself that I wasn’t going to cry; I haven’t since she’s been gone. But I couldn’t seem to hold it back anymore and crumbled to the floor and let loose.

I’m not sure how long I sat there sobbing. What I do know is that my mind was divided. The part controlling my body had gone off the deep end and there was no way to stop until it was finished. There was another part, though, that was detached, but not fully because it was taunting the crying part of me. “Stop it,” it said. “There’s nobody here, so just cut out the show. You’re not fooling anyone.”

I couldn’t allow myself to admit that my emotions were real, apparently, but at least I allowed myself a release. Watching the relationship between Damon and Alaric allowed me to do that much.

I still talk to BC Maven. Not making fun of her mourners or about my feelings; mainly snarky asides. She knows what I mean.


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Emotional Surprises

Posted by on Apr 24, 2015 in Depression | 3 comments

BamBam had a cough and fever the week before spring break. He stayed home from school beginning Wednesday of that week. Then we had spring break. Then, the week following spring break, Zoo Keeper came down with the same thing BamBam had, only he didn’t tell me he was feeling bad until we were getting in the car to go to his occupational therapy appointment on Friday. I made the appropriate phone calls and took him home. Sure enough, he had a fever; even maintained it through the weekend and stayed home Monday.

It’s now Tuesday and he’s home again because his temp, which was fine most of the day, went up to 100.3°F late yesterday afternoon. That’s only 0.3° over the official cutoff for his school, but there was the coughing, too. So he’s home with me again today. His temperature had not gone over 97.9° all morning, but at around 1:30 this afternoon it was 99.0°. I suddenly thought why the hell do I keep taking his temperature? and stopped.  Because he is absolutely going to school tomorrow.

It’s not that I don’t have sympathy for him. I’ve told him I’m sorry about his cough so many times he’s begun to roll his eyes. Well, he actually just gives me an annoyed look, but he would roll his eyes if he knew how. Aside from the cough, though, he’s not sick.

We introverts need time and space to ourselves. That’s one of the many reasons I had such a difficult time in college: roommates. At present, I haven’t had that time and space consistently since the end of March. I need it to function, which is why I’m not functioning very well right now.

Also because I spent the afternoon writing an email about my experiences with death. Only it turns out the email isn’t just about death. It never is, is it? No, because death brings loss and that can take you to a very dark place. I had gotten to the place in my email where I was talking about visiting my father a few months before he died. I had just typed, “I thought okay, so he was capable of and wanted a close father-daughter relationship, just not with me.” I found I couldn’t type anymore after that, which was fine because it was time to pick BamBam up from school.

Image is of a woman in a turquoise shirt covering her ears with her hands and grimacing.  This was totally me today, except I can't wear that color.

Image is of a woman in a turquoise shirt covering her ears with her hands and grimacing.
This was totally me today. Except I can’t wear that color.

BamBam, as it turns out, is in one of his moods where he’s upset and crying, but can’t tell you why. Today I feel like a terrible mother because I don’t even care why; I just want him to stop. Still, he stomps around the house, wailing and whining, lamenting…something. Normally I would try to help him process his emotions, but today I just sit on the couch waiting for the storm to pass and wishing I was somewhere quiet and free of other people.

Sometimes when he’s this upset, BamBam stops using words, reverting to communicating through grunts and gestures. If you ask him about his words, he tells you he’s forgotten how to speak them. Luckily, he didn’t get there this afternoon. He eventually told me he was upset because projects make him bring home too much paper and he can’t carry that much paper up to his room. This is an ongoing battle for us. When the boys come home from school, they’re supposed to take all the papers out of their backpacks, sort them, give me anything destined for parents, recycle anything they don’t want to keep, and take the rest to their rooms. Lately, if BamBam has more than one or two papers he wants to keep, he claims he can’t possibly carry all of those papers to his room. I don’t know where he gets his dramatic tendencies.

I felt drained at that point, so I decided to read. I’ve been looking for the next book I want to read, but nothing has appealed to me since I finished my last book, which was a comfort food book I’ve read at least 20 times. I picked up Speak and was interested right away. It’s the story of an incoming high school freshman who has become an outcast because she broke up a summer party by calling the police. I already know that she was sexually assaulted, but she’s not talking about it in the book. She’s talking about her former friends and how out of place she feels. I got up to get something right after a friend is trying to get her to set goals for the year and she (the main character) thinks about how she used to be like that.

As I stood up, I wondered why I felt so…I don’t know the word for it. Sad just doesn’t seem to cover it. But I was wondering why, so I thought back over my day. Oh, yeah. No alone time followed by super emotional email followed by crying child followed by emotionally laden reading material. Surprise! You have emotions that are affected by things going on around you and inside your head.

I tend to forget that.

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Can School Just Start Already?

Posted by on Aug 22, 2014 in Anxiety, Autism, Depression, Sensory | 7 comments

School here starts the day after Labor Day, September 2nd this year. Why Washington chooses to torture me in this way, I have no idea. I put the boys in camp for most of the summer, but that’s over now. This week is the first of two where they have nothing to do. Not nothing, they still have various therapies, but there’s this gaping hole in the schedule where school should be.

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When the Running Stops

Posted by on Aug 15, 2014 in Depression | 3 comments

**Trigger warning: Discussion of depression and suicide.**

I’ve battled depression on and off for most of my adult life. My first episode of major depression was at 19 as a freshman in college. It was pretty much all I could do to get out of bed once a day and go to my boyfriend’s car, which he would drive around late into the night as I rested my head against the passenger window and slept some more. I don’t know how it started or why I eventually felt better, though I can say that boyfriend was not altogether pleased when he realized drowsily acquiescent is not my natural personality.

You’d think after all these years I would have learned how to ward it off better, but that’s not how depression works. It sneaks up on you and it’s done it again to me these past few weeks.

I started this post almost four years ago. I had written a paragraph about my weight (this was during the Program) and then this:

BamBam thinks he’s cute over there in his chair making cooing sounds at me. He thinks it makes up for all the screaming and fit throwing he’s been doing today. He’s wrong…and extremely lucky I’m a pacifist.

Where was I? Oh yes, the rough week. Honestly, it’s been a tough year. Not all bad, but a lot has happened. I’ve already told you about the boys and sensory processing disorder as well as Sparky and me doing the intensive weight-loss program. (Zoo Keeper) started preschool and has had at least three, sometimes as many as five, separate therapy appointments per week in addition to school.

I love that I wrote that about BamBam. He’s equally adorable today, but there’s more talking and less melting down, which is awesome. We often forget that he didn’t use words until he was three, so it’s a good reminder.

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