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

An InLinkz Link-up

Curriculum?…Whatever.

Many of our friends and family members are educators, and many care intensely about what is taught in our schools. I myself am a teacher. So I feel a bit disloyal and even heretical saying this: as far as my own kids go, I don’t care, like, even at all about curriculum.

Actually, I had always planned to homeschool my children, but circumstances conspired to bring me one child who doesn’t necessarily want but desperately needs all the socializing he can get and one who would probably go postal within three consecutive days spent with Mama and without major social activity. For Z, adult acolytes will do in a pinch, but peer adulation and goose-stepped errand-running is preferred; for E, the biggest school lessons are ones he doesn’t necessarily learn at home: that while everybody is different, most people judge others for being different; that we can’t spend all our time reading; that people change their minds and plans change; how to "read" unfamiliar situations effectively…

                                    Figure I – Usefulness of Curriculum Excellence Pie Chart

As this scientific pie chart demonstrates, most learners benefit enormously from a thoughtful, organized curriculum.  I contend that my children, along with certain others such as perhaps some gifted students, or some with significant delays or learning differences, do not. It’s not that curriculum excellence always impinges on these students or is a negative thing, it just does not matter as it would for other students. My learners gain most from teachers of exceptional character and eagle eyes. So I don’t particularly care if they spend a day chasing caterpillars in the meadow or making 3-D models of the Green Mountains.

In my ideal world, time spent on curriculum development (not to mention test-prep – another post!) might well be used to consider and research how to teach contentment or generosity or ways to encourage curiosity.

However, in this reality, teachers don’t have that kind of freedom, regardless of whether they would willingly toe the Full Spectrum line. So I care that -- insofar as possible -- my kids have shining morning faces and don’t get dragged down by awful beastly kids or dreadful, serving-time-until-retirement teachers. 

G spends most of his time at home reading and learning thereby. At school, this direct absorption of knowledge is somewhat compromised by wide-ranging sensory and emotional overload.* In other words, much of his actual intellectual progress probably occurs at home.

Z isn’t too interested in books…yet. But she could efficiently extract all the necessary knowledge for an astronomical level of success from two potatoes, a rotten log and a maraca.

So, if not book-larnin’ and curricula, what can teachers offer such children?

What I hope for from teachers is:

1.     that they be kind, and

2.     that they model empathy,

3.     good judgment, and

4.     integrity; and

5.     hold an atmosphere where bullying is simply and absolutely not a possibility either for potential perpetrators OR victims.

Why?

1.     Kindness: I hope it is not too much to hope that the logic behind requesting kindness of elementary school teachers is a no-brainer.

2.     Empathy: Some non-autistic people SAY that people with autism lack empathy. This has not been my experience at all. G is the most softhearted person I know. I will say it is sometimes a stretch for him to understand what other people are feeling when his senses and neurons are feeling assaulted, but once G knows what's up he cares and understands and acts on those feelings. That is, he empathizes, often too much (so that his feelings become painful and he finds it hard to function...).  Z sometimes lacks empathy because she is in survival mode.  Teachers with healthy instincts for and expressions of this emotion offer lessons in positive, pro-social empathy that students can carry throughout their entire lives.

3.     Good judgment: discernment, moderation, discipline and common sense are elusive for G, optional for Z; as much as possible, they need to see them in action.

4.     Integrity: I want my children to see their most esteemed role models as people who follow their consciences and follow through on their word. In a classroom setting, this could be as plain as setting clear rules and consequences. When G kicked his cat because his cat knocked over his beloved fish’s tank and killed the fish, he felt guilty. I told him, “That was a natural thing to do – your cat will forgive you and you’ll do better next time.” When he told his teacher – a former Buddhist monk – about this incident, his teacher (in the context of an appropriate lesson for the whole classroom, in which many students apparently thought kicking a cat was funny) vehemently scolded him. I like that his teacher did this: he wasn’t trying to make himself popular, nor was he taking the easy, lame approach; he was speaking the truth as he knew it.

5.     No Bullying: some kids, like G, are more vulnerable to being bullied or, like Z, to being bullies. Both kinds lose in a chaotic classroom. When teachers hold the classroom space as a safe one, everyone wins. This fall, I finally had an opportunity to enlist Z’s strengths in a positive fashion. A little boy from her preschool had enrolled in kindergarten and right off the bat was getting bullied on the playground by some fifth grade boys. Z hasn’t got a bit of “victim” on and I knew that by her patronage alone, this sweet little boy would be safe. As well, her kindest instincts would be called into play in caring for this wee friend. Now I just hope those fifth graders are ok.

I spend my advocacy, that tacit, somewhat-limited leeway every parent has, on the above qualities. As long as teachers are decent people and in charge of the classroom we’re good. We have done very well so far – after all, why do people choose to become teachers? (Hint: it’s not the lucrative salary.)  I figure the clan can always learn “the new math,” but if their hearts are hurting that’s a MUCH bigger issue. 

Love,

Full Spectrum Mama

* Here is an example. At the end of fourth grade, G’s class had an end-of-school open house to share the students’ Native American projects.  There were So! Many! people in that classroom, and so many sights, bright lights and sounds to take in, that I began to get a migraine. Consequently, at this event, I could barely see people and when I could they made me nervous as I couldn’t even fathom or read what they were thinking and feeling in that context.  I had a compelling urge to flee.

Adding to that urge was the fact that G was wandering around aimlessly, talking loudly and constantly to anyone nearby without even looking at his putative listener to see if he was being heard.

Having cornered them in a relatively quiet spot, I asked his teachers, “Is he always like this in the classroom?”

“Pretty much,” they told me, with love in their voices, “Yes.”

With all due respect to G’s WONDERFUL teachers, HOW, then, can he LEARN?  I mean, I know he learns some stuff but there must be so much that is lost in the process!

 On our walk home that day I shared that being in that classroom was very challenging for me.

“Is it challenging for you?” I wondered, casually.

“Yes.”

“Is that why you talk a lot sometimes, and in a loud voice?”

 “Yes.”

 Having been so profoundly overloaded, I was daunted to realize that this is what G and all students and their teachers deal with every day. I am sure many – most -- kids are able to navigate such environments quite well, but G is not one of them.

Barring private school or a “separate-but-‘equal’” classroom for those with sensory and other neurological and/or emotional differences, what can one do to mitigate such overwhelming environments, with so many people, visual and aural and other stimuli, social and academic expectations to be met…??? How can students with sensory integration issues be effectively integrated in the classroom? If help is needed in the classroom, how can we de-stigmatize that help?

?

At Home

I got A Dreaded Call the other day. We all know what those are for our particular family spectra, if sometimes only subconsciously. This was not The Dreaded Call but it was one I have been anticipating with trepidation since Z started kindergarten.

“Z has been taking food from the other children,” her teacher told me. “I have spoken with her and it hasn’t done any good. One time she said she was hungry and the other times she wouldn’t even answer me.”

“Taking.” What a nice word choice compared with “stealing.”

Filled with irrational shame, I mentally enumerated her lunchbox for the day (hard boiled egg, yoghurt, cheese stick, whole grain crackers, baby carrots, applesauce, clementine, small treat – all organic!). I then explained that Z (45 lbs.) gets the same lunch as her brother (95 lbs.) -- and that the hunger is emotional, not physical. I assured her teacher that I would look into solutions.

The next afternoon, Mrs. ___ happily told me that Z had a “good day.” I had given Z extra sweets in her lunchbox as a short-term solution to the “taking” of other kids’ food.  Mrs. ___ admitted that Z had tried to eat the sweets first thing in the morning, but had stopped when told to do so; then she “needed extra time at snack time because she wanted to first arrange the treats in an artistic pattern and then show everyone and then enjoy them very slowly…”

No, that was not a good day.

“Z needs to abide by the same rules as the rest of the class,” I explained. “When you give her special privileges she will feel that she is the one in control and will push – further and further.” This pushing promptly ensued.

In fact, Z’s behavior at school subsequently seemed to explode. I received calls or emails from the school nearly every day. Around the same time that a little girl was handcuffed in Florida  (http://www.latimes.com/news/nation/nationnow/la-na-nn-six-year-old-handcuffed-20120417,0,765665.story) I had to pick Z up in the classroom because she was very upset. I counted myself lucky to have been available. At another pick up, I found her hunched over her Hello Kitty backpack shoveling stolen candy into her mouth with one hand, a handful of crumpled wrappers in the other.  She kicked her best friend and when she finally calmed down announced the whole thing was best friend’s fault for “making me upset” and “making me do it.” She pushed other students, continued to take food, ignored her teacher, lied flagrantly, and so on; she continues to do so.

Another teacher, who has fostered children with attachment disorders, suggested that Z’s behaviors are escalating because she has come to feel comfortable in the classroom. This made sense: at home, she feels most attached to me and therefore needs to constantly test me. Her kindergarten teacher, however, had never dealt with a child with an attachment disorder and was – quite understandably -- bewildered and overwhelmed. I tried to explain some of the underlying factors, but we were and are struggling with how to actually reach Z and create positive change.

Grandmother* (a gerontologist) and Grandfather (an educator, currently teaching fourth grade in a public school in CT) recommended that we consider the possibility that she might need a paraprofessional.

“Ma! Two kids in one tiny elementary school with paras???” I sputtered. “That’s like 12% of the school’s budget! No!”

I imagined myself in a meeting at school wherein this two-for-two issue might arise: assuming the voice of a Borscht Belt comedian from the ‘50s, I’d say, “You think this is bad? You should see us at home!” Ba dum bum!

The truth is, though, that our current educational paradigm holds that public education is for all.  Mainstreaming students with most educational and/or emotional and/or physical special needs is our goal. Ergo: IEPs (Individualized Education Programs; which is what G has) and 504 plans (accommodations, not necessarily special education services; which is what Z may need).  Please see also: http://specialchildren.about.com/od/504s/f/504faq2.htm.

Also true: things are not necessarily harder at home. In G’s case, his schools came to me with concerns over his development and social interactions. Had life consisted of just G and me (or G and me and Timson Hill) I never would have noticed a thing (please see aspergers, genetic links with biological parents…or if there are any websites about people who just want to read all the time with cats on their laps and a nice bowl of pudding).  In Z’s case, struggles at home had always far outweighed those at school.

I envisioned a spectrum in which some people were equally comfortable at home and at school, some were more at ease at school, and some at home. I had come to think of Z as more “at home” at school whereas G seemed more “at home” at home.

Z’s first preschool, which she attended just a few mornings a week, was a sweet, in-home joint, run by a mild, affable woman. Z was – gently but firmly -- asked to leave that preschool for monopolizing all of her teacher’s time and energy.

Her second preschool (http://www.timsonhillpreschool.com/ -- may they live long and prosper) was one of the top-rated in the state and a most wonderful and accepting place. G had gone to Timson Hill in his final preschool year, and it was the one place where they never suggested he be evaluated (he had been evaluated by Essential Early Education [“Triple E”] services at his previous preschool, before we moved, and was subsequently evaluated in kindergarten).  G was relatively at ease in that utopian environment – and unconditionally loved. Likewise, the teachers at Timson Hill accepted his sister Z wholeheartedly and – I might add – effectively, as her behaviors improved in that context.

Sure, there were the several times I had to go get Z when she was “possibly catatonic” or “might be having a seizure of some sort” because she wouldn’t respond or speak to her teachers but once we were in the car she’d revive. Using her own words for what she was doing, I would ask, ”Were you just tricking your teachers?”  [Giggles…] “Yes.”

But they never minded! They were just glad to know she was okay! And, day-to-day, they celebrated her for Expressing Herself and Exploring her Power, just as they had celebrated G’s various quirks and peccadilloes as originality, pensiveness, brilliance…

Ah, would that the whole world were made of Timson Hill.

On the first day of kindergarten, Z -- alongside her big brother -- proudly walked into the school she’d been anticipating attending for years. Her pink Hello Kitty backpack was almost bigger than she was.  It was an exciting and happy event.

                                               Figure I – Backpack to Child Ratio: 4:5

 There were other idyllic moments, like when Pardner and I both elected to serve as “Mystery Readers” in the classroom. I bawled uncontrollably (though [I hope] subtly) throughout those simple and unspoiled occasions.  I had so much hope that Z would be able to self-regulate in positive ways at school.

Still, fairly early on, Z’s teacher had to move her cubby to a more visible place because of some sneaking behaviors. And she was having some dominance and conflict-resolution challenges too. Then again, Z could certainly be relied upon to “run circle time” if Mrs. ___ had a small group activity to attend to.  Overall, kindergarten seemed to be going relatively well.

One morning in November, after some small incident, we stopped to greet the principal at the front door. “Z is planning to be very well-behaved today,” I announced. Z’s face got flat and stormy. “Hey,” I told her as we walked into school, noticing her expression, “You need to behave – and we are all here to help you.”

On the way back out, I stopped again and said to the principal, “I hope that was okay…I just want to help Z do her best and her knowing that everybody is in on that seems like a good idea to me.”

“Oh, I wouldn’t worry too much,” he assured me. “She’s only been down in to see me a couple of times.”

Um. A couple of times? It was November. And she’s in KINDERGARTEN??? G has been to the principal’s office once in five years; I’d been once: in fifth grade, for kicking Jamie Chickaverry in the braces. (I’d been aiming lower.)

After a weekend from h-e-double-toothpicks, and the above-mentioned calls and concerns from Z’s teacher, I scheduled an emergency phone appointment with the attachment disorder therapist. While I was on the phone, Pardner ran into the woman who had referred us to that therapist in the first place in town. She has a son about Z’s age who was also adopted and has similar issues with anger, among other things. “How’s it going?” she asked Pard. He told her a little about recent events.

She got it. Wasn’t any kind of, “Oh that’s ‘normal’’’ – she got the whole threatening-to-kill-Mama (and everyone else), house-destroying aspect of the situation. Apparently, her son calls her a “F-ing B___” On the regular. Sigh. My people.

Pardner said she then uttered the words, “support group.”

“I don’t really think FSM is the type for that…” Pardner ventured.

“Yeah,” she said, “I wasn’t either. It’s just that you get nuggets of information. AND you meet people who get it.”

This is why sometimes I cannot talk to people: I mentioned a bit about some current behaviors to someone. “Mavbe Z was having a rough day at school,” this innocent person suggested.

No, innocent person, Z was not “having a rough day at school.” Z was possessed. By the exorcist? Or – I mean – she was possessed by whatever the girl in that movie is possessed by – that’s my daughter when she’s mad? Which is a lot of the time? The clinical term is “shame rages”?

So…About that support group?

Our therapist differentiated for us between shame and guilt. Guilt is a pro-social emotion, which makes learning and progress possible. When children feel guilt, they naturally want to do better. In time more pro-social behavior becomes ingrained. Shame is a dead end, and children with that feeling see themselves as helpless and hopeless. They have, therefore, nothing to lose. Shame is an anti-social emotion.

When Z clams up and refuses to respond to teachers and family it is with shame. Her “shame rages” are the tantrums of someone who believes all is already lost, which is the main reason they are so extreme.

Our therapist said one of the most important gifts one can give a child with an attachment disorder is to create the chance to “do a repair.” A repair can make a child feel more safe, more at home, wherever he or she is. It is not too much of a stretch to hope that a child who feels at home (whether in a place or a relationship) would lose the need to attempt to destroy their surroundings or companions.

When one has been dealing with relentless testing and pushing and tantrums all day where does that energy – the energy to not only come up with an idea for a repair but to then carry through -- come from?  What if the one who might be able to “do a repair” is a teacher with twenty other students to worry about?

Better go get some chocolate. It’s for the sake of my child.

Love,

Full Spectrum Mama

* I should note this is the same Grandmother who – despite being Liberal and by and large Left-leaning -- is convinced that Z must be descended from royalty due to her great beauty, intelligence and imperiousness.