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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Functioning Label Rant

Posted by on Nov 7, 2016 in Autism | 1 comment

Illustration of two people: one standing on a low platform, the other standing on a high platform.A few months ago,on another blog, I was talking with other autistic women about functioning labels: high-functioning and low-functioning. Mostly about how much we hate them and why.

Today, a neurotypical woman commented on why we were all wrong about functioning labels. She understands the autistic experience because her fiancee is a high-functioning autistic man whose mother heads an autism charity. Though she really hopes she doesn’t offend anyone, she thinks the labels are good; finds them very helpful in dealing with the autistic kids she encounters when helping out at her future MIL’s charity.

As you might imagine, this was not well-received. A few others replied to her with obvious anger, so I thought I would try to calmly explain to her why her comment was offensive. I tried really super extra hard to keep the anger out of my tone. I’ll let you be the judge of how I did on that front (Hint: I don’t think I did very well at all):

I think I understand what you’re trying to say. Part of the problem is that “low-functioning” is a meaningless and derogatory term. It didn’t actually help you in either of the situations you describe because it didn’t tell you that the first kid didn’t react well to being approached or that the second set of kids would miss the nuances of your political discussion. Therein lies the issue with those two labels. They basically say, “over here are the low-functioning autistics, the ones you need to avoid talking to or aggravating or maybe just avoid period, while, over here, you have the high-functioning group of autistics, aka the good autistics, who are really normal but have some quirks. Don’t we all have quirks?”

Think about your fiancee for a minute. You say you didn’t know he was autistic for several years because he’s high-functioning and you, as a normal person, didn’t notice his issues. Those issues are that he can’t talk to people in shops, can’t pay the bill, has secret panic attacks, and needs time to process information before he replies. Do you think that his panic attacks affect him less than literal thinking affects the kids who can’t pick up nuance in a conversation? How would you label an articulate, brilliant autistic writer who is non-verbal? Or someone who can talk to people and pay restaurant bills, but can’t live alone without support?

High-functioning/low-functioning are labels neurotypical people put on autistic people for their own benefit, not for the benefit of the autistic person they’re discussing without even consulting him/her. I’ve been guilty of it. When my oldest son started school and I told the teacher he was autistic, she frowned and I was quick to add that he’s high-functioning. Meaning that he wouldn’t be any trouble in her class, because that’s what it’s code for. I was afraid she would label him as low-functioning, not realizing I was doing him a disservice. In doing that, I was soothing the teacher instead of helping my child navigate school. Because even though he looks like he’s doing fine, he’s not. Yes, he’s articulate and crazy smart about dinosaurs and history in general, but he can’t make a diorama or write a book report.

Image or a woman's feet wearing one dress shoe and one tennis shoe.

We really all wear both.

We’re all capable in some areas and need varying degrees of support in others. And you can’t tell how much support or in what areas we need it by looking at us. I bet your fiancee doesn’t feel so high-functioning during a panic attack.

As women on the spectrum, most of us are told over and over that we’re not autistic. People who can’t possibly know what goes on inside our bodies and minds tell us that we’re not autistic when what they mean is that we don’t fit into their preconceived notion of what autism looks like, which is based on white, male children. So, your comment, no matter how well-intentioned, hurts us because you’re saying we’re wrong about our experiences as neuro-atypical people.

Basically, you are like a man claiming to know everything about menstrual cycles because you are engaged to a woman who has them. And that we should not take offense at your statements because you’re just trying to explain that it’s helpful for men to know when we’re on the rag so they can patronize us so as to not incur our wrath.

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Posted by on Oct 31, 2016 in Anxiety, Autism, Musings | 1 comment

Illustration of a boy shrugging his shoulders.

Last week’s post about things I’d like to take a break from has me thinking about excuses. Excuse used to mean a reason. Like an excused absence in school meant that you had a verified reason for being gone, usually that you were sick. It seems to me that it’s become something else entirely in today’s vernacular. Now I feel like it means an illegitimate reason; a way to get out of something you should do, but you just don’t want to. A justification.

It’s really always been both. I know that. I guess I’m saying it feels like the latter has overtaken the former.

Last summer, I got a summons to serve on a jury at the end of August. I had served on two juries in the previous 18-months, the first county and the second federal, so I could legally be called for county jury duty again. I could have served, as I’d done before, by arranging after-school care for the boys and canceling their therapy appointments I wouldn’t be available to drive them to. But I knew that Zookeeper would need all the support we could muster to make this a good school year from the first moment and convince him things would be completely different from the horrors of last year.

So, there was a legitimate reason I couldn’t serve at the end of August. I could defer my service, as I’d done when I was called for service in December last year, starting on the first day of winter vacation, but I didn’t want to. I wanted to be excused. While it’s true that I didn’t know how the year would go or when I could expect things to settle down enough to leave Zookeeper in after-school care and skip therapy sessions, it didn’t feel like a legitimate excuse not to serve. It still doesn’t, though that may be due to the fact that this school year has gone so much better than anticipated.

Still, I went online and asked to be excused because my autistic son was recovering from a traumatic school year and I didn’t feel it would be healthy for him to miss a single session with his psychotherapist, the only person he’s completely comfortable being honest about his feelings with, because I couldn’t take him. I felt like they would tell me to get real; that everybody has problems and I would just have to figure it out.

But they didn’t. I was excused almost immediately, without any follow-up questions. And I feel as if I’ve gotten away with something.

On the other hand…

When I first started talking about my own autism diagnosis, a friend made a comment about probably also being on the spectrum, but refusing confirmation for fear of using it as an excuse not to go to the gym. Presumably due to sensory issues and coordination. That really got to me and I became adamant that autism is not an excuse. You may need accommodations to go to the gym, but that’s not an excuse. It’s a need. And it’s okay to have needs. It’s imperative to have needs and seek to have them met. Every living thing in the universe has needs. It’s the nature of life. But I find it embarrassing. I don’t want to have needs. I’m happy meeting the needs of others, I just don’t want to have any myself. And I think that’s somehow selfish.

That paragraph went somewhere I wasn’t expecting. My intent was to point out that autism is not an illegitimate reason; that it’s okay to accept that something is outside your capabilities or that you need help to achieve it. But I went inside my own psyche instead. I went to one of my deepest fears: to have a need I cannot fill on my own.

Maybe showing that fear is appropriate for Halloween.
Illustration of a boy dressed as a superhero posing with thumbs up behind a sign that says, "The Perfect Kid."

The final example I planned to share involves a conversation with my mother-in-law. She visited us the summer before she passed away. She and I were sitting at the kitchen table together one afternoon talking about the boys. She complimented them on something and I immediately began my “yes, but…” refrain. My intent, as I discussed in the Break post, was to be open about the struggles we’ve been through to achieve whatever it was she was praising the boys for and about how far we still have to go. Well, to be honest, my intent was probably more to make sure she understood than to be open about it. I have a need for people to know that. I also have a need for people to know how wonderful our boys are. Which version of things you get depends on where I think you’re coming from. Since she hadn’t born witness to the struggles, I assumed my mother-in-law was coming from the “look how easy it is” camp.

Her reaction surprised me. She said, “Well, I think my grandchildren are perfect,” and walked away from the conversation.

I think they’re perfect, too. I resented her rejection of my need to show the struggle for a long time. Until after her death, really.

But now I think that maybe she understood that there was struggle and that there was nothing she could do about it, so she wanted to focus on the good. Maybe she feared for them because I seemed not to see their beauty.  Maybe we were saying the same thing, but approaching it from opposite directions.

I like to think we understand each other now; that we both see their beauty and love them unconditionally, no excuses necessary.


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Posted by on Oct 24, 2016 in Autism | 3 comments

Sparky and I generally have excellent communication skills. Not always with other people, I mean, between the two of us. When it breaks down, it breaks way the hell down. Like on Friday, when he was trying to do something nice for me, but our wires got crossed and we ended up fighting instead.

When I was alone and had time to think, I realized I was frustrated before we’d even started talking and I didn’t know it until after he had left for work. I texted him to tell him that and apologize. He texted back telling me  he’d sent me an email with his own apology about his pre-frustration.

Silhouette of a woman sitting under a tree reading a book with her lunch sitting next to her. So, we’re fine. When I looked at his email, I saw that he had been trying to figure out how to give me a small break from the kids – like a lunch on my own – because he’d read the article I posted that morning about the exhaustion that autism brings.

While I do often dream about the luxury of a lunch all alone when I’m supposed to be with the kids, I don’t think that’s the kind of break the author was talking about; at least that’s not how I read it. It’s not a break from the boys, but a break from autism.

Time when you’re not justifying good behavior. When you can just take a freakin’ compliment instead of feeling the need to mention all the ways he is not doing well. And feeling guilty about it. 

Time when you’re not mitigating poor behavior. When you can accept whatever the behavior is instead of feeling the need to mention all the ways he is doing great. And feeling guilty about it. 

Time when you’re not anticipating the next obstacle and how to avoid it. When you can be present in the moment instead of worrying what the next will bring. And feeling guilty about it. 

Time when you’re not worrying that you’re doing too much for him. When you can stand back and let him struggle with something, knowing he’ll ask for help if he needs it, not just give up. And feeling guilty about not trusting him to grow.

Time when you’re not worrying that you’re doing too little for him. When you can stand back and let him struggle with something, hoping he’s not traumatized by the struggle during the five minutes you took to finish the paragraph you were writing. And feeling guilty for taking a moment for yourself. 

Time when you’re not limited to three restaurants if you want to go out to eat. When you can try someplace new on a whim without triggering a meltdown. I don’t actually feel guilty about wanting that.

Time when I don’t have to cut off whatever I’m writing to go help BamBam process whatever it is he’s crying about outside. When he can lose a game without melting down in front of his friends. That day is not today. 

It’s not necessarily time away from the kids that I want, it’s time away from autism, but you can’t separate the two. I don’t really want to, as autism is part of who they are and I wouldn’t change them for anything in the world. I’d just like an autism pause button every once in awhile. 

Do they make a remote for that?

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