Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Monday, December 26, 2011

On Sensory Processing Differences

So, for those who do not know, there is an idea specifically addressing those "weird" behaviors that we see in Autism Spectrum Disorder (ASD) people - Sensory Processing Disorder (SPD).  Personally I think the "D" in both would be better filled with the word "difference" instead of "disorder", but I don't get to vote on what the American Medical Association Diagnostic Manual (AMA-DM) uses as vocabulary.  So the idea is that the senses of a person on the [autistic] spectrum just function totally differently - that what the body is telling the brain is not like what a "neuro-typical" person receives/ processes. 
There is some debate on the validity of this idea, and even more on whether a person has to be ASD to have SPD, or whether a person can be SPD without being ASD.   The occupational therapist (OT) at the public school we have been attending believes the whole SPD idea to be hogwash, and from what I am reading on other parent support sites, it seems that getting those "sensory needs" addressed and managed is a great hurdle to MANY parents.  For anyone who is remotely familiar with ASD kids (or SPD kids) none of this is earth shattering news, they are living with it.
For me, I have found that the SPD vocabulary is a GREAT tool for understanding and discussing and managing my Aspie's behaviors, and my own.  I tend to think that probably EVERYONE has a Sensory Processing Difference - after all you are a distinctly unique combination of your body & soul, so shouldn't you be totally and completely different that everyone else?  I am betting that the "laws of physics" for biology are not the same "laws of physics" for the soul/ spirit, so it's not hard to believe that we will see many different expressions of the combination of the two [genetics is all about how many different combinations come from two].  In the back of my heart, though, I still find the verbiage somewhat deflating.  It takes the amazing, miraculous being of "ME" and reduces it to scientific vocabulary that sees me as a balance (or mis-balance) of mechanical "input".
Further explanation:  SPD proposes the regular 5 senses (that Kindergarteners study), and adds two more: vestibular (a sense of balance, associated with the inner ear, and with sensations of weightlessness) and propioceptive (the sense of... motion? place?... the idea that the joints tell the brain where the body is - associated with coordination and motor control).  SPD proposes that a person is either over-sensitive or under-sensitive in each of these 7 sense "spectrums" - and that a person can be over in some and under in others. 

Let's look at taste - an overly sensitive taster would seek bland foods, would "feel" the heat of spice as "hotter" (crunch doesn't count here - that's propioception). So instead of my dad's love for Thai food being a personality trait, it is now defined as his under-sensitivity to taste - he needs "more" to even register the sensation. My diagnosed Aspie seeks strong foods - ate a packet of wasabi (hardly teared), loves seafood, curry and Latin foods.  My younger kid only wants rice - plain by itself, sometimes fried rice, and seeks candy.  So does this indicate that different spots of the tongue are operating differently?  One seeks salt, the other sweet?  I myself prefer bitter - dill pickles, cranberries, vinegar sauces, coffee, dark chocolate, but apparently my sweet doesn't work very well - all fruits and veggies taste the same to me... like fresh cut grass smells.  Do these differences in taste constitute a disorder? Or are these the natural differentiation of individuality?  Is it worth getting treated for veggies tasting bland to me?  There are those that might argue so, looking for a therapy to make "healthy" foods taste "better" – after all, we are holding McDonald's responsible for our food choices...

Let's look at vision - an overly sensitive visual receptor would seek milder colors, less pattern, less clutter (clearer visual distinction), maybe even less contrast.  Some would argue that the lack of clutter is an obsessive compulsive disorder (OCD) thing - like my grandmother who needs everything geometrically balanced in wall hangings, or my friend who needs the desk tools placed in a specific location. I for one have NO issue with clutter, and come from a long line of hoarders.  Got the plaque that says "the gift of disorganization is that you always make new discoveries".   The L.A. Times reported that one of the "hidden adults" with autism it found is a magician with his materials everywhere - his significant other said he "needed everything out where he could see it" - that describes me EXACTLY.  We got rid of all the chest-of-drawers in our house - clothes are stored on shelves, in cubbies or clear baskets.  Then there's the case of my other grandmother's house: every piece of furniture in a room is a different patterned fabric, with every one a different shade of her 3 base colors (red, green and blue).  Now it is not that she has incredibly bad or eclectic taste, it is that she is under-sensitive to visual input (I recognized this when she complemented the strongly contrasting oversize plaid pants that my son was wearing 3 times in one hour).  It really just proves that beauty IS in the eye of the beholder, and she saw that riot of color and pattern as comforting, pretty, attractive - like the flaming orange kitchen she had when my dad was little (neighbors called the fire department twice because of the glow in the basement window). 
My bet is that further definition/ research/ introspection of minutia will show how this is related to reading - like with dyslexia or photographic memory. I have worn reading glasses since high school because we figured out that I have a ghost double image of words, but I am still an avid reader. Some with ASD have found vision therapy very helpful. 

Let's look at touch - this is where we get into the "itchy tags" on clothes - the one that therapists treat often with "brushing techniques" - and it effects the whole body.  For my Aspie kid, we saw it when we put a jelly-consistency silly-putty in the hand - gagged IMMEDIATELY.  It was very odd.  My Apsie diagnosed kid does not like to wear clothes, we have finally convinced that one that clothes must be worn to exit the house or when people visit [other people are modest, and it needs to be respected]. When there are clothes: no jeans - too hard - everything is sweat pants.  The younger one is almost never naked - dresses head to toe as soon as out of the shower, have to fight to get "less dressed" in swim suits.  Touch is supposed to affect eating - like being able to force down super smooth yogurt, or not being able to swallow the powdery/ crumby crackers.  My younger one's speech impediment is defined as an over-sensitive gag-reflex - can't make the letter "G" sound, or a hard "K".  I've read more than one blog of an ASD adult describing how the sensations of different textures scream inside their heads. 
So now my fabric habit (and yes, it is a bad habit for me - I have bolts and bolts of fabric) can be reduced to a clinical sensation - no longer my hobby, my interest.  But I have better vocabulary for why I prefer long haired dogs, and flannel sheets.

Take a look at hearing - well, really I don't know what to say on that one. I like lots of different kids of music, because they illicit different reactions from me, and drown out the voices in my head - let me concentrate. (the ADHD tie in - needing lots of sensory input in order to make one come into focus by contrast).  I know that I heard more when I was a kid and can cognitively process more than one conversation at a time.  I am definitely an auditory learner, and my Aspie relates what was heard before what was seen or felt in a situation.  My youngest has been labeled with Auditory Processing Disorder - and I think it affects not only that child's speech but also the ability to carry a tune, and the level of sassiness we see in conversations.  It can affect social cues (hearing the "punch-line" or the "sarcasm").  Could it define a preference for loud or soft music? For a strong beat or a flowing melody? I don't know.  Some ASD/ SPD people have reported a sensitivity to high-pitched electronic whines - like florescent lights.

I'm not getting into smell too much. It is so strongly tied to taste (spices, etc.)  I will say that the place I wish I had known this SPD vocabulary was in potty training.  ASD/ SPD kids are notoriously hard to potty train.  This is explained by their "inability" to register sensations of full bladders or bowel pressure.  It also seems to take so long 'cuz this is where those "sensory seekers" like to play with poop.  My gross-threshold expanded EXPONENTIALLY as we potty trained my Aspie.  I read a tip about a year ago (too late for me) that letting them play in used coffee grounds keeps them out of their own crap - I WISH I HAD KNOWN. I hope that other parents take that one to the bank! - but it clearly implies that smell is a driving motivator in that behavior.

So how about vestibular sense?  Well, this is supposed to be what we see in that kid who loves to swing.  My Aspie is apparently vestibularly over-sensitive - saw it in how swings were conquered.  It took over a year. Every time we went to the park the child would spend hours walking around them, looking at them.  After 6 months + the child finally laid across it, and swung with feet on the ground. After several more months, the feet were lifted - just once.  Each time we went to the park after that, a couple more swings with feet up were added. Now we have reached sitting in the swing, but those feet drag every time they get close to the ground.  As an infant we saw it on the carousel - a TOTALLY freak-out experience for that infant (and the grandmother who insisted on taking him on it).  My younger - not so!  That one swings self right off the swing - often - hangs upside down on bed, prefers merry-go-rounds.  It's quite amusing to watch them side-by-side on swings at the park.  This is the sense that equestrian therapy is supposed to help so much.  The idea is that for those who are unable to walk "normally", the gait of a horse provides natural rhythm that the brain is unconsciously seeking, that makes the brain "re-coordinate" itself. 
As I watched a neighbor ride their horse once, I thought about how the vestibular sense was being engaged so continuously.  If some people are born seeking/ craving that kind of input, would that mean that they have a natural propensity for horse riding, or sea faring (rocking boat)?  Would we be able to see patterns of that in families that have those histories?  If this is a genetic coding thing, would "natural selection" strengthen these traits in, for instance, landed-gentry (moneyed enough to own horses) or maritime communities?  And what about that one kid in the sailing family how has uncontrollable sea-sickness? Or the "gentleman" who prefers to walk, or the "lady" who prefers to ride?  Are those SPD issues, or personality descriptors?

And propioception - THAT is a hard one to wrap your head around.  Basically we are saying that all klutzes lack propioception; they "lose" their bodies "in space" and just cannot make the body do what the head envisions.  One physical therapist (PT) told me once that my Aspie would just have been called "uncoordinated" in an earlier time.  This is a particular concern with parents, I think.  The playground picking-on often stems from being an un-talented athlete - the last kid picked, because they are not an asset to the team.  PT and OT are supposed to work together to improve this sense.  For many it is seen in writing - the hand just does not create legible words - like a doctor's signature.  There are many "academics" who have this issue, often unable to read even their own writing.  The OT's working with my Aspie say it effects how hard the pencil pushes, the amount of friction the implement has with the paper can overwhelm, the fingers and wrist cannot twist to create shapes.  The most common "accommodation" made in schools is to let ASD/ SPD kids type instead.  [Ummm, it's pretty much the same skills to me - but I am a "hunt-and-peck" typer 'cuz I can’t get the coordination down right - and a fast one too, though lots of mistakes.] 
Another place we see this is in hugging.  My Aspie is a propioceptive seeker - he is constantly leaning on things ["melting" is the term one OT used].  Swaddling was VERY important as an infant, sleeps under many quilts and heavy blankets, pushes heavy boxes around the library, constantly asking us to wrestle ("tickle-fight"), has even asked the sibling to sit upon self.  My mother even saw it as an infant, said my Aspie was "more cuddly" than most babies.  My younger kid - not so much.  Asks for hugs, but stops them quickly, wrestles/ tickles with us, but not for long.  This is supposed to be the sense that makes kids bang their heads, seek crunchy foods, play "too hard" or "too rough". 
I am thinking that it is what makes football players play football instead of the crazy fast ping-pong of Asia.  Is this the reason boxers box? They don't "feel" the hit?  Is it why my family is full of competitive shooters, because they "seek"/ enjoy the recoil from the gun?  Can propioceptive sensitivity explain why many couples have difficulty with the one who is a cuddle sleeper and the one who spends all night elbowing for more space?

So are the peculiarities that define "ME" just a list of symptoms from my senses?  It just makes me feel... cheap... to think that I am not a magical mix of what makes me feel happy or sad, but only a compilation of electric exchange between cells.  There is a GREAT deal of value, to me, in being able to use this vocabulary with myself and my family - to say that I am having a auditorily sensitive day and the screaming has to stop, or that when my Aspie is literally bouncing off the walls, we need to do a propioceptive activity like trampoline, or when the youngest swings for hours, it's because that one needs it, or when I need my husband to remember something, it has to be written down (visual). 
Of course, I could just keep doing what I am already doing - telling my kids that God creates each and every person different and special, because each has a job that only they are designed to do - and our job is to respect and honor those differences, in ourselves and each other, because God creates everyone and everything for His reasons, not ours.  Difference is divine.

Wednesday, December 21, 2011

Why Dragons?

In today's age of corporate logos, highlight reels, and headline flashing, my husband argued with me vehemenently that I shouldn't have to explain how I came up with a name.  But one thing I have learned to embrace as a mother of a high-functioning autistic child is to embrace my instincts.  I have a sense of identify with this name, and here's why:

BIG
Ok, well I am not small.  My Wii Mii is as round as they can make it.  My child has taken to describing to me lately how much bigger I am than other adults around (nothing like the honesty of Asperger's!).  But my Wii Age is still younger than my actual age, so I am moving around pretty well for a big girl.  In truth, I need to be better about exercising and eating habits for a lot of reasons (and don't for a lot of reasons too) but I have also been the same weight for 14 years, through 2 pregnancies... I consider my size God's destiny.
But "Big" doesn't just describe my body.  I am very loud... in almost every sense of that word.  I have very good volume.  They have never given me a whistle on the playground.  My dad is a retired cop.  I have learned to be "present" from a young age (some take that as confidence, others as arrogance).  I wear my heart on my sleeve (I have always said that is fairest to everyone else so they know when to leave me alone).  I feel that it is my God-given responsibility to speak up when things can be improved, to "right the wrongs", to "call it as I see it".  I love deeply, loyally, passionately... whether it's taking care of my family, or teaching swim lessons, or picking up Appalachian Trail Hikers... I do my best to act lovingly to everyone.  If I were to die today, I want people to say, "That woman had a Big Heart."
There are other reasons to choose "Big".  My best friend in high school told me when we parted for college that her friendship with me taught her the true meaning of "depth of character".  The moniker I have earned as a camp staff member as an adult includes "Big".  I am deeply reflective, and pretty knowledgeable on a good number of things.  Lord knows I have often been accused of thinking too big!  I know that I am a "forest" thinker - a big picture thinker, sometimes so much so that I lose the "trees" (like punctuation).  Like Luke Skywalker, I get so caught up in seeing the possibilities that I lose hold of where I really am.
So, I am Big.

DRAGON
Well, I have had a preoccupation with dragons since I can remember.  Yes, I read too many fantasy novels (because I love how they have "big picture" plots!), so I have read many interpretations about what a dragon could be.  The universal attribute of dragons is power, whether for good or evil, a dragon's power is MUCH larger than it's actual size.  In many stories dragons possess the power of change... whether they change themselves or the world, they are usually described as being able to portray themselves in a way that makes them an integral member of the community they exert power in even though they are also outside of it, "above" it.  I am guessing this all appeals to me because I am probably Asperger's myself and have had a hard time finding a way to place myself in society... but I'll get into that later.
To me, dragons are beings of wisdom as well.  They always know more about the history and the context and the underlying circumstances.  Their minds and hearts are "big", full of knowledge. As beings of wisdom, they are Teachers, instructors that help to guide all the lives and events into the Great Web of Life, into that Divine Plan.  They are often guides to world around them, by their own ourposes or the purposes of others.  When the characters in a fantasy novel don't know who else to turn to, when they have exhausted all the libraries and wizards and sages, they seek dragons.
Then I became a parent.  Even before my children were born, I knew that I wanted them to know, have the power of dragons. I decorated the nursery with dragons (and you would be surprised!  There are LOTS of childish dragons out there!  It is sooooo cool!) based on a triptych of prints (I found at the Renaissance Festival) of a dragon growing up with a teddy bear.  I hope they will be able to see their own power and development mirrored in those pictures. (Of course the back of my head also thought - great! now we don't have to redecorate for every stage - a theme they can grow with = less painting.)
Then we started the process of "being" autistic - getting a diagnosis, accepting a diagnosis, finding treatments, negotiating with the schools, giving him room to BE himself.  My child is "high functioning", and has many skills more profoundly "autistic" people don't, but that doesn't change the fact that that one’s head just works in an alien manner, and the body is not always a friend.  My child needs to know the power of a dragon that lives inside the self... the power that lets one own your differences and release innate abilities.  In an article of a mother of a child with a terminal illness she described herself as a "dragon parent" - spewing the flaming hard truth of changed priorities when you know from the outset that your child never needs to be trained to be an adult.  While it is probable that my children will live that long, there is no guarantee they will function as an adult.  As the "people-first" language says, disabled is the only minority that ANYONE could join, at ANY time in their lives (car accidents, illness, sporting accidents, etc.).  That passionately honest piece of me wants to be the "dragon parent" that sees and speaks the hard truths, that values the Right Now because tomorrow is not guaranteed.  I need to find a way to worry less about eth future so I can relish the zest if the present.  I have joined the ranks of what the L.A. Times called the Warrior Parents - found my own dragon powers to fight, protect and nurture my great treasures.
So, I am a Dragon.

MAMA
Well, obvious at this point, I am a mom.  The truth is that it is all I ever wanted to be.  I come from a looooong line of teachers, so there is some innate "mothering" behaviors that I have always displayed (whether emulated or instinctive).  Even in middle school I recognized those mothering behaviors in myself (with the help of my smothered best friend).  I have considered (and still do) parenting to be a sacred duty, the pinnacle of vocation, for my self and others.  Granted my perceptions and expectations of what a parent "should" be doing have changed as we have lived with autism, I still believe in the holiness of parenting.
And I still mother every body.  It is also a part of my camp moniker: "Mama", and not only because I answer to it! ;)  I am constantly reminding people to use the bathroom.  I kiss boo boos and offer advice, and I have high expectations of integrity for everyone while trying to genuinely love them, find where I can best help them, nurture them.  I share food, give lots of hugs, and bestow what insights I can. 
I am Mama.

So there you go.  That is the best explanation I have for BigDragonMama right now.  My bet is that it will get even more defined and clearer as I continue to grow into it.  I'll keep you posted! ;)

You know - I just read my "About Me" just under my name and found a summary:
I am a Connector - Big - my "what"
I am a Teacher - Dragon - my "how"
I am a Mother - Mama - my "why"