Tuesday, August 5, 2014

THE BURNING BRAIN

As a variation on the theme of the Sensory-Processing-Differences-induced Full Brain, I offer The Burning Brain:


     


                                                                Figure I – The Burning Brain

And just one little Burning Brain story among many: There was a family-welcome, community-building meeting for our local Autism Spectrum Disorders group a few weeks ago. I’d never been before because I always have the kids with me at night, but thought I would go since kids were welcome this time.

En route to the meeting, we stopped by our town’s First Friday celebration where there is art and music and stuff. That was our first mistake. Two events? What was I thinking?

I began to get a headache.

We arrived at the meeting and there was a ceiling fan! And bright lights! You can see where this is heading…And there were a bunch of very, very nice people, mostly educators and paraprofessionals, at whom I could not look. No other kids, but hey, my kids are a lotta kids.

By this point I could barely see or hear. I could feel the inflammation inside my skull (see above), and my head felt like it was about to explode. Just throbbing with pain. The fans, the lights, the conversation, the nice, nice people? Unbearable.

I drove home trying not to vomit, got home, vomited from pain…

One single burning thing I was able to think during this episode: I can only imagine how a child would handle this!

This is Sensory Processing Disorder: a relative overabundance of stimuli (whether of activities or sensory input) causes migraines for some people. This same overabundance can also cause some of us to feel overwhelmed with despair, or anxiety, or anger and - especially before we are aware of Sensory Processing Differences - to not know why we feel this way. Kmarie Audrey has written wonderfully about this subject here

Again, imagine how this process of Sensory challenges leading to emotional/social/physical pain and/or overload would affect a child! A huge meltdown or tantrum seems almost – dare I say it? -- ”under-reactive” in this context!

My son, who also has Sensory Processing Differences, tends to shut down, or get more flappy and loud than usual when in Overload Mode. I talk to him about it, and hope he will have the words and wherewithal to deal with it as he grows up.

Me? I mostly get Burning Brain these days. Once I am in that state (and by this point medications do not help) my migraine will amplify any sensory input so as to make the smallest thing (lights, sounds, smells, movement) literally agonizing.

On the most basic level, I get why a clothing tag might make someone scream, why swinging on a swing soothes some and dysregulates others, why seeing a bright color could cause nausea or even vomiting…

There is a great deal of skepticism around Sensory Processing Disorder (SPD), so I write this for those who cannot put their experiences into words as well as I can (at least in writing), and/or who do not have an audience. As an adult, I have a certain legitimacy, where a young child might not. I am able to be articulate in ways that a non-verbal or less verbal person might not be...As a college professor and an individual with some level of “success” in life I implicitly have the credibility that those who are even more profoundly affected by Sensory Differences might not be freely given by others.

SPD is not an “excuse” for me – I have a good life! – but it is very real and very challenging and as a label it does explain some of my lived experience. For some of us, including many children and people with autism/autistic people, SPD – while it may have its positive aspects (about which I have written before and will write again) – can make life quite difficult.

We may need help. We may need accommodations. We may need creative solutions and adaptations. We will need understanding.

Please believe us.

Love,
Full Spectrum Mama




21 comments:

  1. You describe the experience of SPD so very well - I often say that there's some sort of undefinable pain somewhere deep within my head. I love the call to action at the end, especially encouraging adults with SPD to be the voice for our children. Quite a full spectrum family, indeed :)

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    1. Thank you so much, GreenEyedRach -- now if we can just all unite qui-et-ly...;)
      Love,
      FSM

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  2. I totally get it! I get so overwhelmed when there's too much commotion in a room, and I KNOW my little guy with ASD does. Nice to know we're not alone.

    Thanks for sharing!

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    1. Thank YOU! We are sooooo not alone - which is one of the most wonderful new things I am learning here and with you all.
      Thanks and love,
      FSM

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  3. I agree that SDP causes challenges. I'm not diagnosed with it, but I have sensory sensitivities. I can't imagine how much worse it is for kids like my son with full-blown SPD. And I agree that we don't use it as an "excuse". But we try to accommodate when needed.

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    1. Exactly! Thank you for your comment, Robyn. I do think our kiddos can benefit from our shared sensitivities whether exactly the same or not...
      Love,
      FSM

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  4. Thank you for providing your perspective on this topic, Full Sensory Mama. I think it's important to hear about sensory processing difficulties from an adult's point of view because not only does it, as you say, add legitimacy to a very real disorder, but it provides us parents with an account from a true, qualified expert on the subject. Because who is better qualified to speak on the topic than someone going through it herself? I also liked your point about how each person reacts differently to the onslaught of sensory stimuli. I think too often we overgeneralize, and it's important to understand that each person has a unique reaction to our sensory world.

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    1. Dear Jessica -
      Thank you for your comment! Although you seem to imply that SPD may be new or alien to you, you are clearly very sensitive and wise about your child. Thanks for reading!
      Love,
      FSM

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  5. Thank you for sharing. It is nice to get an idea of what might be happening inside of our children.

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    1. Thanks for reading! I know SPD Blog Hop readers are a caring bunch...
      Love,
      FSM

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  6. This was a very timely and educational post for me. Although I don't suffer the physical symptoms, I do exhibit a touch of all three categories of meltdowns. I have a dear friend who needed my attention last week, and the multitude of efforts he put into reaching me fomented a meltdown. Several daily texts,email and voicemail messages overwhelmed me. Those requests layered on top of two sports injuries and three other dear friends who wanted my attention were all too much. I had to stop answering their contacts and quiet myself. I could see one friend, but only on my terms of a short period of time, with time to recover afterwards. I frequently feel pressed to overextend myself. And though I have grown to a place where I can specify what I need (downtime, quiet time, me time alone), it is rare that a "normally-functioning" person hears and respects what I am asking for. Just go to one more event, see me in between your other two meetings, take one more call, three more texts... I have typed too much and been too selfish, here. But thank you for writing on this subject and providing links to the other materials which I will read in depth. Wishing you calm, cool brain, sweet air to breathe and time for yourself, FSM. <3

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    1. Dear Anonymous,
      Thank you for your comment. It reminded me of some of the best advice I ever got, from my friend Rachel Cohen-Rottenberg (more of interest to look up - she's a big blogger and Very wise): the first time we were to meet she had to find a day without other social commitments. She told me she limits such things or gets very worn out. This was a revelation for me and I've tried to do so since. It sounds like you have a lot of friends so this might be hard. But! If they are real friends why not explain how your brain works a bit?
      Thanks and love,
      FSM
      Oh - and maybe One media is better for you than others and try to focus on that? Like, I don't do phone. No.

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  7. I get migraines too - often from overstimulation. I honestly have never thought of it as a sensory issue, but now that my son is getting them too, it makes perfect sense. Thank you so much for sharing your perspective. It helps me a great deal.

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    1. I hope it will mean less migraines!!! Thanks for your comment.
      Love,
      FSM

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  8. Burning brain is a new one for me. I'm very much used to it with the boys and am learning how to recognize my own sensory needs (vs. my "automatic" coping mechanisms), too. I still remember explaining to the speech therapist, "Brushing your teeth does hurt." The way they looked at me, just... "Doesn't it?"

    My migraines making me sensitive to sights and sounds. Never thought to connect migraines to sensory processing...yet, being in a theater or a concert almost always triggers migraines, so it might be.

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    1. Also, brushing hair? OUCH!
      Oh I absolutely connect migraines to sensory processing tho in some instances I see myself as a "canary in a coal mine" (box store cleaning product aisle? INSTANT MIGRAINE). AS I imagine you and your boys as well.
      Here's to more living than just coping as we figure this stuff out bit by bit...
      Love,
      FSM

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    2. Yes, the bit by bit part is hard.

      I refuse to go down the detergent aisle (which is also the candle and incense aisle!) of the grocery store unless absolutely necessary. (The carry the cleaning gloves I like.) For some reason, Target's is better, but Wal-Mart's is just as bad as the grocery store, which may be why I prefer target. I mean, is it just me, or do they puncture those containers to make sure they're nice and overwhelmingly smelly!?

      Besides, the boys and I both do better if we have the totally free detergents, otherwise clothes are even more itchy than they have to be. I would dress us all in silks, satins, and cashmeres if I could afford it, but of course I can't. And the boys think satin is too tickly, even though I'm the one wearing it. I don't know about silks. It's been a long time since I had anything that delicate.

      I also do best if I only skirt the edges of the flowers section. I like flowers. I like a bouquet of flowers now and then. But lots and lots of all different kinds of flowers is too much of a good thing.

      Bit by bit, I learn what's good for me and what's good for each of them. And the more we learn, the better we do. For example, part of the reason I love Netflix is because it makes the movie theater a moot issue most of the time. ;)

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    3. OOF! I felt uncomfortable just Reading about the stores! But - good advice. I think I DO find target easier, though I think it's largely that their lighting is a tad "classier" (*ie less in-your-face fluorescent).
      Another great point is the "too much of a good thing" angle - I loooooove flowers but you are right - it can get overwhelming...
      Love,
      FSM

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    4. The lighting is a good point. I also don't like the whoosh of air and overwhelming noise when you first enter a Wal-Mart.

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    5. Oh, and you'll notice the air often has a scent - if not of some enticing artificial buying-encourager, it's the aforementioned cleaning products.
      Where we are, there's not a lot of other places to get certain things...so we know it well.
      Meh.

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    6. When I do my shopping late, there are two choices: a grocery store and Wal-Mart. I prefer the grocery store, but they don't always have what I need. Besides, the only brand of crackers Alex will eat is sold at Wal-Mart and only Wal-Mart. :(

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