I haven’t had time to write on the blog for a while so wanted to start off with some positive notes and hopefully heartwarming thoughts on this Memorial Day Weekend.
As you may know, my 12yr old daughter has autism. She is non-verbal, still in diapers, and so unique and smart that she amazes me on a daily basis. She also has a condition called Pica. (definition adapted from Wikipedia for your understanding) ((Pica (pyka) is characterized by an appetite for substances largely non-nutritive, such as ice, clay, chalk, dirt, or sand. According to DSM-IV criteria, for these actions to be considered pica, they must persist for more than one month at an age where eating such objects is considered developmentally inappropriate, not part of culturally sanctioned practice and sufficiently severe to warrant clinical attention.)) I have the same disorder and it affects our weight along with other issues. For my daughter, the substances vary depending on texture and availability. The texture chewing is a side effect of her autism.
She developed lately, the need to chew on her own hair. You hear all the older stories of “you will get bugs chewing on your own hair”, or how it ruins the hair. She had hair past her backside, and it was thicker than anything I have seen other than a horse mane. (but softer). Ben and I alternated washing it only on odd days because it would gather dirt and oil that fast.
The concern is that she would chew small chunks off, tie them into chewable knots, chew and swallow her own hair. It usually cleared the digestive tract completely, but it frightened me and increased my issues with anxiety. What if she ate too much, what if she actually did get bugs from it. What if the hair didn’t clear the tract and I had to rush her to the emergency room for surgery because her stomach or bowels were blocked? How would I explain that telling her no, icky, wrong in this case didn’t work. I am as supermom as I can be, but I am still only a mom and not always able to make her understand.
The simple solution, find a way to make it fun to cut her hair and for a good reason. There is a family acquaintance that cuts hair. We made a trip of it where she got to walk over there and while girls were getting their hair done for a wedding, Jordan was treated as the guest of honor. They cut her bangs out of her eyes (after we washed it an hour before). The hair was placed in a ponytail at shoulder top and cut in one huge chunk. It was braided after and measured for length. The ponytail is fatter than a common soda can and 12 inches long. We donated it for kids with cancer who need wigs made. Now, she has a cute haircut that reminds me of the 16th century carriage boys with their paige type hairstyle. We can shape itm mousse it, and she can shake her fingers through it without bringing any of it to her mouth.
The thought of the line that Autistic child donates hair to children with cancer, makes me feel good. One of the few fantastic thoughts this holiday.
May is a hard month for me. My mothers passing is still raw, Her birthday comes up the first week of June. Memorial day hits hard as I remember my father who served in the army pre-vietnam, who also died in May almost two dozen years ago. Although I have some remote family, they do not like nor approve of me, which leaves Ben and Jordan. I remembered to tell Ben thank you for his service, as he spent 8 years in the army and national guard, and trained as a sniper. The topics of flowers on graves, or attending services throws my depression and anxiety off kilter and I am unable to relate well.
My island of writing-
As some of you may know, I started volunteering for various aspects of a local convention coming in July. It needed some help, I had time to help, I wanted to do an event during the con, and got bamboozled into more. I sent over 1k emails in a week and ended up delaying my beta readers schedule because things were not done that needed to be.
Unfortunately, I came to the realization that maybe I am just not meant to help community events in general. I ran into parallels in this society that I did in my writing, and it made me build a solid trench of which to defend my little island I am on in the writing world. I am trying to reach out, but if it is always this difficult I do not know how sturdy I can be.
For the convention, much like my writing, everyone is interested in helping out, but seems to be concerned about the wrong things. I had plenty of offers to help with my writing, but nobody had the time to really help. We have plenty of committee members to do things, yet the communication gets lost in translation sometimes.
I watch the writing communities argue in social media about who is politically correct, are we including things, so and so is a racist, so and so is a misogynist, or these people said this about writing how dare they?
I watch people in the various organizations, celebrity, and media for conventions locally get offended about the strangest topics, only focus on what is in it for them, only interested in the one person they can relate to going- who cares about the rest. Who did the rules, how can I work around them, Why are things not happening like I want them to be
There is too much blame game in both worlds, when there should only be team efforts and results.
In writing, who cares what is or isn’t represented in it? It is a story, in a genre that hopefully gives a reader, somewhere, some entertainment. Anything beyond that purpose and joy of getting to share what is in my head with the world, is reaching too far.
I hope someday my stories can help people laugh, cry, worry, stimulate and explore. If you have another agenda in reading or writing, I feel a measure of pity as it is not a platform, it is a work of art.
In the convention community, who gives a flying frack who did what for how many cookies? As long as it got done and everyone enjoyed themselves? Your worries should not include what agendas are covered, what political views are made, if you contacted so and so through the right people, or if its “above your station” to deal with. The only concern should be that people show up, people enjoy themselves, and are able to connect as fans of the same topic that represents the conference.
I watched a community of writers rally behind Robison Wells this week to recognize mental illness in writing and our genre. They helped raise money not only to assist Wells with the pitfalls of having mental illness, but to raise awareness and assist others as well. It broke my heart that I had nothing to donate money wise, and that I am not someone known well enough to contribute work that would boost the fundraiser.
I did what I could. I spread the word to every social media I could. Each time a famous author posted about it, added a new perk, raised awareness – I retweeted it to my 300 followers and others. I copied the news articles about it and cheered them on from the sidelines.
As I can attest, writing with mental illness can kill in its own way. I am thankful that someone helped him. I hope someday to be as lucky to do the same, or be able to share my writing with the world despite mental illness. Not everyone has a community around them, and I am happy Robison Wells does. He is a very deserving individual with a brave voice.
So I start this weekend off telling the conference to kiss my dust of trying to edit, work with my three beta readers I was able to find, and let them realize their own issues before I help again next week. The other feelings will hopefully fall away in the cloud fury of typing.