Life with Sensory Processing Disorder

Friday, February 28, 2014

Movie Review

The other day I watched a movie called Perfect Sense. I saw a preview for it and knew I had to see it since the subject matter is a disease in which you lose your senses. It was an interesting concept, one in which I have to say caused me much wishful thinking.

As I’ve mentioned before the sense that causes me the biggest amount of grief is the sense of smell. In the movie it is how the disease first starts out. Since memory and smell are linked closely together, people start experiencing overwhelming grief as they recall moments of sadness and loss; death, end of friendships, wrongful doings. Then their sense of smell is completely gone. They call it S.O.S. – Severe Olfactory Syndrome. Then it progresses to other emotions followed by the loss of other senses; taste, hearing, sight. Meanwhile the main characters meet and fall in love. The movie follows their story as the world is falling apart. How I wish I had their problem, especially the loss of sense of smell. Loss of taste wouldn’t be so bad either, as I enjoy the taste of food way too much and could stand to lose some weight. Hearing, sight, and touch would truly be a loss because even though they may cause me problems, they are a gift much of the time.

I found this to be a truly thought provoking movie that really hit home and made me wonder what it would be like to not have the sensory issues I do, how the loss of other senses would affect life, how I appreciate my (other) senses. While I don’t generally care for the two main actors; Ewan McGregor and Eva Green, I thought they acted very well and were believable. The film takes place in Glasgow, Scotland though the disease spreads all over the world. Ewan plays a chef and Eva a scientist. Many of the camera angles were shot in an artful way which I always notice and appreciate.

Wednesday, February 12, 2014

Happy Birthday Colin!!

Yesterday evening someone in one of my Asperger's online groups posted this STORY. I also read this STORY about him. This young boy was diagnosed with Sensory Processing Disorder and is hypersensitive to lights and sounds and has a disorder similar to Asperger's. He will be 11yrs old March 9th. His mom mentioned having a birthday party and he said, "there would be no point in throwing a birthday party because all of the kids at school don't like me and make fun of me." So she posted a FACEBOOK PAGE so family and friends could post birthday wishes and send him birthday cards. His story has been spreading like wildfire and even made the national news, I believe on GMA this morning. How cool that she has been receiving cards for him from all over the world! If you'd like to send him a birthday card, you can do so at:
PO box 756
Richland, MI 49083-0756  USA

Tuesday, February 11, 2014

Bleach as a Treatment!?

I just read the most sad and horrifying thing last night. Apparently some parents and groups are advocating that not only should Autism be cured, but they are promoting giving bleach enemas, baths, and supplements to autistic children every 2 hours for 72 hours or longer, then upping the dose when vomiting and diarrhea cease. WTF!?

I’m sure being a parent to an autistic child who is non-verbal and uncontrollable is difficult, but really, you think giving them bleach, or MMS – the Miracle Mineral Solution as they’re calling the homemade industrial strength bleach, is the solution?  HERE is the FDA's safety alert on it.
What about me, I may only have High Functioning Autism, but do I need to be cured? I tell people I have been blessed with Asperger’s/ASD/ HFA (I have higher than normal intelligence, am very creative & artistic, think differently, and consider myself gifted in many ways because of Asperger’s) and cursed with SPD. I can live with my form of Autism - the SPD I’d like to do without & have a cure for as it can be truly debilitating.

Anyway, these are children; human beings with feelings, thoughts, hopes, dreams, life and you want to give them bleach? What is this world coming to? I say an eye for an eye; give bleach to the parents and see how they like it and see if it cures their idiocy!
Many groups advocate treatment of some sort for all types of Autism. I find this quite offensive. I like being different, thinking differently. Most people suck, why would I want to be like everyone else? I am intelligent, considerate, polite, quiet, artistic, thoughtful, and many other things. Just because I am viewed as unsocial and like to be alone or with few loved ones does not mean I want to learn how to be or be more social! I am not hurting anyone by being me, so unless you can fix my SPD, I do not need to be treated! I’m sure many others with Autism Spectrum Disorders feel the same. Let us be and stop trying to fix us.

Monday, February 10, 2014

Misunderstood Again

So yesterday we ventured out into the sunshine; to get out, get into nature, take some nature photos, do some shopping, have lunch. We head to the store first. Because it is winter and cold out (around 10F), they turn the heat up high so all the older women who shop there (large bead store) can be comfortable. I am prone to overheating and have reactions to being too hot; hives, flushing, shaking, hypoglycemia if I stress about it, feel generally sick, panic, fainting (well this has happened only once and hopefully never again!). So after 5 minutes inside I am already uncomfortable and feel hot. I start sweating, so I take off my jacket. I start shaking and feel like I am going to fall down. I can feel myself flush and am starting to panic, which only makes me hotter. I have my husband hold my jacket and my tray of goodies and tell him we are going to have to leave. He says I should step outside to cool down, I say no let’s just pay and go, I am really thirsty now and feel like I need to get out of there. So we head to the cash register, only one other in front of us already paying, thankfully. The lady at the cash register has to do some price checks on my selections – I am freaking out, afraid I will pass out. She comes back and apologizes for the wait. I smile and say no problem. Then the phone rings and she answers it, again says sorry for the wait. I’m freaking out, feeling sweat run down my head and back, my face hot and I’m sure red. I have 3 frequent beader cards that need to be consolidated & then punched and she again apologizes for taking so long. What is so frustrating is even though I try to be polite and smile, I’m sure I look mad or angry. I’m not though, just trying to manage, get through, not faint or shake so uncontrollably that I look like a freak. When I blow air on my face it isn’t me sighing or doing it out of irritation, I’m trying to cool myself down!

I’ve found some relief since learning about SPD & causes and how to manage, but it is so depressing that it will not go away, there is no cure, and I am so often misunderstood. It seems like my entire life is spent managing; managing my body, my reactions, my food, my environment, my stresses and hypersensitivities. I think because I look “normal” people just assume I am rude, bitchy, whatever and not that I am sick or there is anything wrong going on with me. I don’t look autistic or like I have a sensory disorder. I feel bad for the people I come into contact with that think I am being bitchy, I’m really not. I don’t mean to offend or seem rude. I’m just trying to manage and if you don’t know what I am dealing with and thinking and feeling inside, you have no idea. So once again…

Perhaps I need to get the above printed on a t-shirt and wear it everywhere I go.

On the bright side I got some really good treasures at the bead store, we went to the park and saw 5 deer. We witnessed a beautiful sunset and had a late lunch out.

Friday, February 7, 2014

Jewelry Design

One of my favorite hobbies is jewelry design in bead weaving. Something about the repetitive motion of weaving is very calming & meditative. I get in a zone and just keep going. I guess it is like stimming; self soothing. Good thing it is relaxing because usually one piece can take many hours over days and sometimes weeks to complete, working with so many tiny beads. Beading for me, like most things, is all about numbers. I find number combinations in everything. There is usually a pattern to be found and then it is a matter of counting once you figure out the number pattern. I like to look at a bead weaving stitch and work it like a puzzle. I love to figure things out; stitches, puzzles, Sudoku, recipes, brain teasers, formulas. I also love the feel of a bead woven piece in my hands - the beads are mostly smooth and cool, a larger piece is flexible and somehow comforting. To create something from a vision in your mind and to have it work out and look as imagined, is so rewarding. I’ve never taken a bead weaving class, and never will; I just don’t believe you can teach design and I don’t want to pick up anyone else’s influence in my work. So I enjoy the journey, learn from my mistakes, and try new things as patience allows.

I’ve tried creating many types of jewelry, have done plenty of stringing & wire work and enjoy it, but my heart is more into the design of truly one-of-a-kind, complicated, and asymmetrical jewelry designs in bead weaving and bead embroidery. I find when designing jewelry I rarely like things to be symmetrical. Many designers say a piece must have balance, I on the other hand love to push for something that can be attractive & cool but still not run of the mill with both sides being uneven and different. The rebel in me wants to break the rules.
I (think I) have been successful in my jewelry business, I have set out to do what I wanted to – get sales on and (preferably) off Etsy, get published, win & place in contests, and stay true to my creativity. My necklace Blue (pictured below) made it to the front page of Etsy France. I’ve also done jewelry repair, jewelry replacement, custom work, been invited to submit work to magazines & publishers, have been asked to be a bead ambassador for a commercial bead company (rejected proposal due to poor quality beads and findings, would have otherwise accepted but I won’t work with or represent cheap Chinese crap – ha there are my Asperger’s black & white ethics in play – could have received free beads & media, but my morals won’t let me work with something I don’t believe in no matter what is offered to me), and will begin a new journey in creating my own beads and cabochons soon. I choose not to participate in craft fairs, I'd rather do juried art shows if anything since my pieces involve much work, are higher priced, and I would never sell them for a low cost just to make a sale.

I am currently working on an asymmetrical necklace for one of my beading groups that does a monthly challenge. The theme is "Am I Blue". Ironically blue is not one of my favorite colors, but it seems I have done more jewelry in blues than any other color. I’m done embroidering and weaving and am now just sewing it together. I wove 4 different parts – 2 straps, 1 embroidered piece and a bezeled crystal. I am so close to being finished. So far it has taken at least 8 hours. Once finished, I will welcome the break. This is the first piece I’ll have completed in a year. I took some time off to buy a house, move, paint, adopt 2 rescue dogs, relax, and enjoy our home & yard. I will post my completed piece when all is done. Pictured here are other pieces of mine.

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