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Friday, June 26, 2015

How One Adult With SPD Wants to Explain This Condition to Your Sensory Child

As a delayed-diagnosis sensory adult with SPD, one of my greatest pleasures is helping newly diagnosed children with the same condition - whether this means championing their parents or explaining sensory issues from the inside. We SPD adults and teens have the words to convey how it feels to be mid-meltdown with traffic barreling down on us or mid-bite as we desperately hunt for input, and so we're not unlike camp counselors or big siblings: we must protect even the tiniest member of our community by speaking up on their behalf.

Recently, a parent emailed me to ask how I'd explain SPD to her nine-year-old daughter, and I thought this was such a great exercise that this blog post was born. Again, this is what I'd say to your child, and not necessarily what every single adult in the community would say. Our experiences, although similar, are unique and vary.

*****

Hi New Friend,

Let me ask you something - how do you feel when things are very bright, loud, smelly, strong-tasting, crunchy, moving, or touching your skin? Do you feel happy and want more? Do you feel scared and want to run away? Do you not even notice these things? Well, guess what, these things are not in your imagination! You're not dreaming how you feel and you're not making it up, even if you're the only one in the room going "eeew, my hands are dirty!" when everyone else also has dirty hands.

Grossness!

Many people, even grown-ups like me, feel the same way as you. And guess what? The way you're feeling has a name! It's a big name, we call it Sensory Processing Disorder, but you can call it SPD, like Silly Penguin Doctors. 

Paging Dr. Penguin


Know how some people are tall and some are short? And some have brown eyes and some have blue eyes? And some have big feet and some have small feet? Well, people have different brains too. Some brains are built in a way that make us especially sensitive to things that make you sensitive - like when the light is too bright at school or you can't stop hugging your mom for even a single second. Guess what? My brain is just like yours! We could be twins, you and I. Don't we look exactly the same?

It's totally okay to be different. Different doesn't mean good or bad, it just means that there's no one way for things to be in this world. How boring would life be if we were all the same? What if everything around you was the color green? Green people, green sky, green eggs and ham (I'm okay with that last one - haha) But really, it would be so boring. Different people with different experiences bring fun new ideas into our lives and keep things interesting. I like to think that people with SPD bring lots of wonderful things to the world. Because we're so sensitive, we sometimes see things that people don't even notice. Have you ever noticed that a friend was sad before they started to cry? Or did you ever think that someone needed you to help them before they asked? Many people with SPD are like little sink sponges - we drink up information about things around us, including people's feelings. 

Slurrrrrp *burp*

We notice some of the smallest details about our world that other people don't stop to notice - even if these things feel uncomfortable in our bodies. It's no fun to be uncomfortable, I know. I hate it too. Our brains don't always tell us the truth about sounds, sights, tastes, touches, smells, movements - and sometimes we get more scared than we need to be because our different brains are telling us to worry. The good news is that we are safe in our bodies, even when our bodies are telling us that we're not safe. You are safe in this world in your skin. Promise!

Hopefully, you are starting occupational therapy, which is so much fun. There, you'll get to play some games and learn how to feel better when you're at school, at home, and everywhere in between. When you grow up, you'll think about occupational therapy and smile. 

Know that you are not alone, my little friend. Think of me as your big, sensitive sister. I know how yucky it feels when your body and the world around you feel so strange, but I also know how great you can feel when you're doing the things that you love. It's okay to have SPD. Remember, you're like me (you're my twin, right?!) and I'm okay out here as a grown-up in the world. You will be too.

Lots of love,

Rachel



Thursday, June 18, 2015

The More You Know and Other Updates

As most of you know, I started this blog in 2010 to help me explain my own novel experiences to myself. It was the best place for me to rest my eyes when I was feeling alone and misunderstood about my SPD, and I'd write and re-read as if I were two different people seeking company across the chasm of the internet. I came up with words and phrases to meet the situations I was encountering - it was where handler came into my own personal nomenclature, as well as hit the deck (because drop to the ground when I feel overwhelmed and overstimulated felt just a bit too long). Sometimes, our community lacks terms for the things we do and the things we experience, and sometimes I'm just unfamiliar with the more popular term. This is what happened with my term neuroism.

Recently, after my last post, I heard the word ableism for the first time ever. Ableism is the discrimination in favor of able-bodied people, and it is said to include physical, mental, developmental, emotional, and psychiatric disabilities. I was very happy to learn that there's a broad term to describe the sorts of prejudice I'd experienced in my life with SPD, but I had mixed feelings about the term - mostly because of its all-encompassing reach, but also because I don't always consider SPD to be a disability (remember my post on differences, disorder, and disability?) - nor do I think it necessarily falls into the categories of physical, mental, etc. above, but rather spans some sometimes. I think in time, we should come up with our own variation on the term to hone in on the unique neurological, psychological, physical, differences, disorder, disability melting pot that is a life with SPD.

Nonetheless, I am still learning about my sensory life just like all of you. My SPD awareness is nearly five years old, and much like other five-year-olds, sometimes it just wants to sprawl on the floor, pop its thumb in its mouth, and watch Chuggington for the thousandth time. I didn't start out as a voice of the community, I started out as just a voice in need of hearing. I am so thrilled to be heard, and I am even more thrilled to continue my sensory education.

Thanks for being a part of my journey!

PROJECT UPDATES:

My next piece for Sensory Focus Magazine will be out this fall, so stay tuned.

I am also thrilled to be Dr. Sharon Heller's first case study in her next printing of Uptight and Off Center coming out later this summer. I wrote my own case study of myself, which was a very special challenge, so not only am I the leading case, I am the author of the leading case. Thanks again to Sharon for this unique opportunity!

Thursday, June 11, 2015

"Neuroism": It's Alive and Well

It always starts the same way, like the road to hell, paved with good intentions:

-Let's go to the Botanical Gardens next weekend! a close friend or extended family member says, there's a new exhibit and a group of us are already going.

-Oh thanks, I invariably reply, but it's going to be too challenging for me. Enjoy and have fun!

-Why?! they always respond. I must note here that the WHY of my struggles has been repeated endless times ad nauseam. I've shown them my blog, my articles, my book contract. I've illustrated my SPD in great depth - painted full-length visual portraits of my vision and hearing during a sensory shutdown, of the death-like detachment. I've sung sonnets of what it feels like to be eaten alive from the most tender inner flesh by ceaseless sensory information. I've presented the science, detailed groundbreaking studies, pointed at the faulty white matter on the page and back at my own head.

They already know why.

-It's too tough for me with my sensory issues, but truly, go and enjoy! My reply is always the same - upbeat, hesitant to keep anyone from experiencing something that they deem "fun" even if it's something that I'd deem "miserable," especially if the proposed activity will unnecessarily tax my uber-sensitive senses and not engage the ones I need to seek.

-But it's going to be quiet, they insist.

My skin begins to boil. I don't have the patience to explain my SPD yet again to someone who has heard about it for years. It's not just about noise level. For me, it's about sound and visuals and movement and how my body feels in space. It's about how sound travels and is contained, and how it's then processed by me. It's about the temperature. It's about seeing an accessible exit and feeling safe both within my body and with those around me. It's about acceptance and understanding and the most basic levels of human decency. It's about telling someone something pivotal about myself, and them making the effort to understand. It isn't new to them, and yet by making this simple statement, it's going to be quiet, it is clear that they haven't learned a single thing about my SPD. They don't know me from Adam.

-It's not simply about the noise level, I begin, agitated, violated, misunderstood. And then I stop, because for someone like this, someone so clearly oblivious and unwilling to flex their mind around someone else's differences, nothing I can say will save them from their lack of understanding.

-Okayyyy . . . they respond. We chat a bit more about nothing important before we hang up.

I am left each time with a haunting feeling of shame and guilt. The ghosts of old internal negative talk whisper in my ear. What's wrong with you? they intone over and over. Why aren't you normal, why can't you be who everyone wants you to be? Why aren't you someone different? I secretly cry at my own shortcomings. There is nothing more painful than being belittled for who you are, especially for something you can improve only to a certain extent, but cannot change.

I have chosen to call this experience "neuroism," for lack of knowing a better term - the opposite of one of my favorite newer terms, neurodiversity. In my opinion, "Neuroism" is the prejudice, discrimination, and antagonism of a person with neurological differences by someone who thinks that their personal neurology is superior. I should never have to feel ashamed of something about me that I have and cannot simply drop. Much as I can't change the color of my skin, I can't change my neurological makeup. I shouldn't be pressured to do so or shamed by anyone for how I am wired and for my related experiences.

Ignorance is no excuse, especially when someone is repeatedly presented with information geared to help them understand. If someone was educated over and over about their racist or anti-Semitic behaviors and then continued with their unacceptable approach, would they not still be racist and anti-Semitic? Ignorance towards any group that is seen by someone as "different" doesn't make the words they choose and their approach acceptable. Aww, they're just being ignorant is a phrase you will never hear. Ignorance that lasts beyond a period of education is especially not admissible. This is something that makes me particularly angry. I am standing here, arms open wide, ready to answer any and all questions to help bolster your understanding of SPD and sensory issues in general. Am I not the raw, open advocate who blogs about even her most touchy subjects? Do I not encourage everyone - strangers, friends, family - to email me with even the smallest question? Do I not write articles for unnamed faces across the internet exploring the depths of this condition, explaining everything that I can? I have done all that I am able to educate people about sensory issues. At some point, the onus falls away from me and I have done all that I can do.

I will not tolerate intolerance - as intolerant a statement as that is. I will not tolerate "neuroism"going forward. I will no longer feel ashamed for my makeup, for the way that I am biologically and neurologically formed. I am proud to be different, to experience the sensory world in a unique way that allows me to take a stand and be the voice of so many like me. It is my life's calling and my life's greatest burden. Antagonizing me about something I cannot change will no longer make me feel guilty and broken. I take that power away from the ignorant and I leave them with these words. Until we all learn to understand, accept, and embrace the complex differences that make us so beautiful - whether these are differences in race, religion, gender, sexuality, or neurology - we will never reach our full potential. We will continue to miss out on the true extent of the human experience.

Wednesday, June 3, 2015

The Inside View on SPD - Episode 2 - Adolescence

I'm happy to present the second episode of The Inside View on Sensory Processing Disorder, a question and answer video series by yours truly, in partnership with my friends at the SPD Foundation. This month, I tackled the complex topic of adolescence - something that I could talk about at length. As you may know, my SPD came to light when I was fourteen, although it was disguised as intense, seemingly inexplicable anxiety, so I am always interested in considering the experience of sensory teens.

Click on the video below or click here to learn more on the inside view on SPD in adolescence.You can find the series of videos on the SPD Foundation's website on their videos/resources page.

If you have a question you'd like me to answer about life with SPD, you can email it to info@spdfoundation.net with the title The Inside View on SPD. I can't get to them all, but I'll try to answer as many as I can over time!


Another wonderful pause-face moment.
Also, pardon my clear inability to film myself!