My Mom Is an Autism Expert and I Don’t Trust Her to Take Care of My Autistic Child (reblog)

Interesting read.

This brings us to the third point which is that she cares about observational behavior, or how similar to neurotypical it is, and ignores health. Because focusing on observational behavior in the moment and ignoring energy levels and a long term perspective on health means that my kid’s health will suffer.

As a consequence of not paying attention to health, she doesn’t acknowledge symptoms of stress, and instead she’s prone to explaining most problems with a lack of motivation. When an autistic kid is dead tired on a Monday morning and crying because the demand of brushing teeth and putting on clothes is too high, she explains this with that he or she (no other genders exist to her) isn’t being challenged enough. No matter how much information I’ve given her that explains that this can happen when the weekend has been too energy consuming, she doesn’t really believe me.

Source: My Mom Is an Autism Expert and I Don’t Trust Her to Take Care of My Autistic Child

Sleepy time?

When I got home from the hospital ten years ago, I told my parents I wanted something natural to help me sleep. They spoke with their trusted pharmacist, a lady who often fully urges her customer base to try these methods first. She recommended they buy a product containing l-tryptophan, melatonin, valerian root and chamomile. They did, and I took this each night the rest of that summer. It worked. 

Off and on for a few years I would buy a bottle of valerian root pills and they worked. As I sunk further into alcoholism and alcohol began to significantly worsen my insomnia, I began buying both valerian root pills and melatonin pills and taking them together to sleep every night. It worked for some time and kept my nightly drinking down to a just somewhat more than moderate amount. After some time I found myself needing more melatonin and valerian to do this. And after some more time it got to where only drinking until I had no choice but to go to bed “worked”. Even after this level was reached, for a long time it was still such that if I stepped back from drinking for a short period of even a few days things like valerian would begin working again.

However somewhere in the last year it got to a point where even stepping back from alcohol would not allow valerian and/or melatonin to work in me. I decided recently to give up drinking for good and am well approaching a week without thus far, but I had been fretting wondering how long it would be before I could figure out what would help me sleep/valerian could work again. 

Last night my friend I’m staying with got home from the grocery store and among his purchases was a bag of whole valerian root. Now I had had the pills and the valerian-containing teas, but I had never even seen the whole root itself. Well when I went to bed last night I broke off a small piece of the root to chew. 

I was amazed how well chewing the root worked at making my mind calm down and making me sleepy. I drifted off to sleep. This morning I am amazed and pleased with how soundly I slept and what a low level of anxiety I awoke with. Hello, valerian, my old friend. I may never go back to the capsules/tea again. 

why i #BoycottAutismSpeaks (reblog)

why i #BoycottAutismSpeaks (reblog)

Powerful.

a diary of a mom

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{image is a photo of me at a lectern, addressing the crowd at an Autism Speaks dinner in Hartford, CT. I believe it was 2009.}

I thought that I was doing right by my child.

(I didn’t know yet how radically I wasn’t.)

I thought that I was fighting for her.

(I was fighting HER.)

I raised money.

(A lot of it.)

I gave speeches.

(To get other people to give money too.)

I thought that helping my daughter meant finding a cure for who she is.

(Think about that.)

I brought my daughter to places in which she — in all of her beautiful, glorious, tangled Brookeness — was being called a tragedy, a scourge, a casualty of a brutal epidemic.

(I am so sorry, baby. So, so sorry.)

And then I started to get it.

To understand the damage being done to autistic people in the name of helping…

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Peripheral umbrella. 

From a young age my mom would have me help her fold the laundry. When it came to anything that might have a stray string sticking to it, she would have to get rid of the string before giving me the item. She did this after so many times of seeing me shriek at the string and run from the room. I had the same reactions to bunched up yarn (for example the hair of a Cabbage Patch doll).

My reaction to string and yarn has mostly calmed down, though it still happens when I’m overly surprised by the appearance of them. What has never calmed down is my reaction to evergreen trees as I pass them. 

I love nature. Time in the woods invigorates me. However if I am surprised by an evergreen tree or if I catch it in my peripheral in passing, I have an even stronger reaction than I ever have to string and yarn. 

This really complicates things at times when I haven’t had a car. Sometimes the only plausible route walking to a place involves passing one or more evergreens. Last fall I figured out something I can do. 

I was staying with a friend, and from his place to Walmart involved a stretch with pine trees on each side and after a brief respite from that a seeming wall of huge cedars that angled toward the road on one side. By this time in life I had gotten pretty good at using my hand to block my peripheral but somehow I didn’t do it right one night. I wound up falling off the sidewalk and straining my ankle. As I laid there waiting to be able to stand up, I thought I have to figure out a better workaround. 

I made it back to my friend’s place and after some thought I decided to carry an umbrella everywhere I go. So now if I see evergreen trees ahead when walking somewhere, I open my umbrella and get ready. The umbrella makes an excellent total peripheral block. It makes some drivers shout odd things at me, but they can shout all they like. My umbrella and I get along just fine.  

Wallflower memories.

Looking back at a blog I wrote briefly my senior year of high school, I found a poem I wrote right after reading The Perks of Being a Wallflower. 

Here it is, circa February 2003:

(untitled)
incessant drumming of rain
the pulse of the ocean
the ocean of emptiness
ocean enclosed
ocean of souls
souls joined yet seperated
in these encasements of flesh
in this ocean, there’s no ledge to stand on
and no way out of the hopelessness
so i put on these rose-colored glasses
and pretend away the pain, but
who am i really saving?
myself?
or anyone else who might
feel empathy at my despair?
i can’t afford to blindfold myself anymore
i’ve done too much of that
and now my eyes are weary
and my head aches, but
i’ve got to take the time
to learn why
every time it storms i want to cry

There goes missy woodsman and her Voyant cat.

Edith Cataria is a pseudonym. I don’t hide behind it. Most folks I know in real life know of this name, friends and family alike. If someone from my life came upon any of my online presence, here or otherwise, I would be recognizable. 

For me, pseudonyms  (and I’ve had a few in my life) are important in identification. You may have seen me mention how an obsession with Kurt Cobain once saved my life. For years my pseudonym was Aqua Seafoam, which you may recognize as coming from the lyrics of Nirvana’s “All Apologies”. 

At another time my pseudonym was Voyant Cat. This was to honor the memory of a cat I had named Voyant. Voyant and I had a very transcendent bond. He was a woods cat at my mamaw’s house at first, showing up shortly before I went off to college. We connected instantly and I named him Voyant, as in clairvoyant. 

Our bond stayed as strong even when I’d be away at college for months. I’d come home and arrive at mamaw’s and let out a long whistle, shouting “Voy boy!” Maybe 3-5 minutes later he would come barreling up out of the woods and crash into my legs. Mamaw was fond of saying, “There goes missy woodsman and her Voyant cat!”

When I graduated college, after getting through the aftermath of my night in the hospital and getting a room in a house, I took Voyant to live with me. He wandered off, presumably to die, in 2009. I dreamt of him many times thereafter. 

Now for Edith Cataria, and I think this one will probably stick a long time if not for life. A dear friend (with whom I’d say I have the same kind of transcendent bond I had with Voyant) once told me the story of how his last name came from his great grandma Edith. He told me Edith was not her birth name, but a name she assumed after escaping an abusive situation. The name struck me. I didn’t begin using it right away, not until a couple years later. 

One day, I think in 2014, around when I had begun to fully claim at least to myself that I am autistic I set about to create a Live Journal and Voyant Cat didn’t feel right anymore. Edith Cataria came formed in my head at once. Cataria is simply part of the scientific name for catnip (nepeta cataria). I do espouse the medicinal benefits of catnip, but I can talk of that another time.

My real name is one I honor and love, and it is me. But each pseudonym is also me and they are loved by me as well. Edith Cataria, however, feels like home. 

I believe that it is okay, and even makes quite a bit of sense, to have many names over the course of a lifetime. After all we are not stagnant beings, spiritually or otherwise.