Tuesday, September 13, 2016

"MOTHER APPEARS DISHEVELED"

Dear Persons,

I was listening to NPR not long ago and ended up sobbing in the car. Again. The segment that got me this time was on voting rights (read it, and possibly weep, here), and how in many states persons who have appointed guardians do not have the right to vote. Whether to apply for guardianship of my son is probably the question I struggle most with on a day to day basis (followed closely by even more terrifying questions about what will happen to him when I am gone). The thought of my brilliant, politically-engaged son being unable to vote was one more tally in the non-guardianship column. I want to always err on the side of presuming competence, yet I always want my child to be able to, you know, live...sometimes despite himself.

I mention this not because this matter is resolved, but to point out that for parents with atypical children, and for people of difference in general, the world out there (your basic radio show, and so on) can be a bit of a minefield.

I have many friends – who I still speak to! – who like to say “Oh, it’s hard being the parent of any kid.” Sure, I will give you that. And I will gladly agree we most of us love our kids the same agonizing, rapturous, heart-expanding amount. But I am not Full Spectrum Mama for nothing: I have one typically-developing child and one who is developmentally and neurologically atypical and I can assure you it is not the same kind of hard! When your child develops differently there may be taken-for-granted, essential life skills that he or she may develop late...or never.

The idea that G will “grow out of it” – whatever “it” is – is thus often meaningless and certainly not reassuring.  For example, all his life G – despite assiduous and almost-constant attempts on my part to change this - has used his clothing as a combination napkin/tablecloth while eating. And that’s when he notices he has food on his face or hands...which he usually doesn’t. In the scheme of things, I’d like to think of this as minor – I mean, G is extraordinarily KIND and FUNNY and SMART – yet how will this be viewed by a potential employer? Or partner? (And no, I do not mean typical sloppiness, my “all kids have challenges/all boys are slobs” friends.)

Or perhaps your child is or you are (as am I) at the other end of the noticing/reacting spectrum and barely able to function because of obsessive compulsive (OCD) needs and/or sensory overload from crumbs and the like?

Maybe G’s table manners will improve someday. Maybe someday I will be able to ignore a single crumb on my finger. But sensory processing differences (SPD) and other neurological differences are often integral to who we are, part of our very biology. Neurodiverse and differently-abled persons may develop neurological, practical, and/or emotional strategies to function in a world that was not designed for them – and sometimes doesn’t make sense - but there is much we will never “grow out” of...

My conservative yet highly clinical estimate is that I worry about G a million, billion, gazillion times more than Z, my typically-developing, typically-abled daughter, even though she has had her issues as all children do...

I usually write more from the perspective of a child advocate, or in efforts to spread awareness and acceptance of difference. This time, I wanted to write about what the parents I know who have children with extraordinary challenges feel like a lot of the time, both to acknowledge and honor them (us) and to spread awareness on this front.

I am not complaining – my child brings me extraordinary wonder and joy every minute of every day – I am explaining.

Those of us with who are different, or have children with differences – or both! – have to navigate more-complicated, often “inappropriate*” (to us!) environments and interactions – environments and interactions that may feel overwhelming, cruel, arbitrary, opaque -- almost all the time. In a very real sense, the “problem” is the world, not our kids/us.

My Meeting Friend became my dearest and most-cherished support-network-of-one when mutual friends who knew our children kept suggesting we connect, and then our paths kept crossing en route to and from Meetings, therapies, etc. etc. My Meeting Friend was once at a Meeting – of which one has exponentially more with an atypical child (and yes I know this from personal Full Spectrum experience) – and glanced over at what one of the “professionals” there to evaluate and assess her son had written on a pad and read, “Mother appears disheveled.”

Now this is a mother who has willingly and bravely made changes and sacrifices for her child beyond what most could even imagine. That very day alone I am positive she had already cooked several different healthy breakfasts taking all individual food allergies into account, carefully planned out ways for both of her children to have their own kinds of successes (including – egads! – athletic successes!!!!) and learning experiences, gone to great lengths to ensure social interactions and a beneficial sensory diet for her son, written several emails regarding grades, social situations, IEP, 504,etc.,  made sure her other child felt “just as important,” oh - and worked at her job...** With a smile on her face.

I am impressed she even had clothes on after what she has been through. But there that note was -- amidst, I am sure, other stuff (such as “EXCELLENT parenting!” and “Kid is PERFECT, just a WEENSY bit unsuited to the average boring old, sensory-/social-nightmare classroom”)  --  ...”Mother appears disheveled.”




Figure I – Disheveled Mother


...Ya think? And I wasn’t there at that particular Meeting, but I do know that she has had the grace to laugh about it ever since.

My friends, do you appear disheveled or know someone who does? From crying in the car, maybe? Are you disheveled on the inside even if you appear “heveled” on the outside? You are in good company.

Much Love,
Full Spectrum Mama



* “Inappropriate” is such a trigger word for many on the spectrum. There are a lot of “normal” things we find “inappropriate,” believe me (and there is no monolithic “we” in either neurodiverse or neurotypical contexts!). Nonetheless our children are often told, especially in school, that X, Y, or Z is “inappropriate”...One hopes that some consideration is given to the possibility that people who perceive and process differently may have different standards – and not always assume that neurotypical standards are the correct and appropriate ones. 

** How do I know these things? Because I know my Meeting Friend. But also because I and most other parents I know who have children with differences do these types of things Every Day. I just wrote a letter to G’s teachers and “learning specialist” while I wrote this footnote.





Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!



Tuesday, August 9, 2016

HIGH SCHOOL PRAYERS


This post is a sequel to MIDDLE SCHOOL PRAYERS. I revisited that post while preparing this one, and found that it’s pretty much 100% still relevant.

Similarly, I would use the same disclaimer: basically: please feel free to substitute institutions (workplace? family? elementary school?), gender (I’ve occasionally written “he” because the child in question is my son, but I mean these prayers to be INCLUSIVE), labels, and language (God? Great Spirit? Goddess? People?) that feel right to you if you feel moved to share these prayers.




Dear Universe,

Thank you for my child’s safe passage through Middle School with our sanity relatively intact. If it’s not too greedy, I would like to add on to my Middle School Prayers list. Following, please find a number of additional Prayers more specific to High School:





1. May my child not get lost in a larger setting. 








2. May my child not get anybody pregnant (for biological                 girls, please substitute “get pregnant”).











3. May I dole out the RIGHT amount of freedom to                     my child.









4. May my child always know deep down how much he                   (she) is loved.






Pretty simple requests -- and all probably shared by most parents and guardians of High Schoolers-to-be, right?

Yet, as a parent of a child on the autism spectrum with sensory processing differences (SPD), each Prayer has multiple layers for my family, as they must for so many families with significant differences. Please, dear readers and dear Universe, allow me to elaborate –

1. About the not-getting-lost bit. My child is one of the deepest, smartest people I know. He can read ANYTHING. But write? Not so much. Focus? Similar, unless we are discussing a special interest. Dyspraxia, SPD, and a general lack of executive function make mainstream school environments and requirements highly challenging for my child.

Add in a major life transition, a much larger student body, and MUCH less in-class paraprofessional support, and we have what feels to me like a perfect recipe for my child getting lost, falling between the cracks, getting shunted through...

During the High School Transition Meeting, when his case manager kept saying, “We see that all the time” to concerns raised by his Middle School Team, it did feel reassuring, but it also felt like G was being stereotyped. Like any child, G is an individual and I hope for him to continue to be seen as one in High School. I’m not sure yet what “success” will look like for my G – will he reach his academic potential in this setting? will he want and/or be able to go to college? – but I want him to have the chance to reach for it. I want him to know he is known.

Dear Universe, may our children find their own healthy, rewarding ways of learning, growing, and interacting in High School. May they be treated fairly, and may they be accepted and cared about for who they truly are by staff, teachers, and their fellow students.


2. Re: pregnancy.You know how all teenagers have lots and lots of hormones and very, very little sense? Well, imagine all the hormones with way less sense than that, even. Kind of makes ya nervous, right?

Then, dear Universe, we are on the same page. May our children have the opportunity to continue being children just a while longer, please.


3. Freedom. The vast majority of parents fully expect their children to be independent at some point. A small minority know with certainty that their child will never live on his or her own. We are in-between, and it’s a tough place to be. I want to do right by my child, who is still in the very beginning stages of developing life skills like judgment, executive function, common sense, perseverance. I want to respect him – and he’s very worthy of that respect, with all his wonderfulness and brilliance and perfection (said his mom). But I also need to make sure he doesn’t make irredeemable mistakes while these life skills are still emerging. And I need to be vigilant for the long term should some of those skills never emerge.

The transition into High School feels like the first time I will really, finally need to begin to actually figure out how our family will tackle these weighty issues.

Will G ever drive? I’m not sure. Should he? Probably not, at least any time soon! (I didn’t drive until my late thirties...) Will he desperately want to? Probably.

Will G ever be able to live on his own? Probably not without some help, whether from a case manager or partner. But I am not sure! He’s surprised me before with huge developmental and personal growth. I know he envisions an independent life for himself, but I also know he has no idea what that would entail. I’ll need to begin looking into guardianship options fairly soon if it seems like he won’t live on his own.

There are significant financial resources for some people with some disabilities. Would G feel insulted by the suggestion that he cannot create his own success on neurotypical world terms or glad to be able to focus on his interests? The huge part of me that has enormous respect for G dreads even raising this matter with him. Yet...when he tells me things like “there’s no reason to cut toenails” or I watch him approximate his idea of how a chore really should be done – and he has many original ideas about regular stuff like this every day – I cannot imagine him keeping a job or household. If he doesn’t “get it,” he’s not interested – so I imagine the key in the long term will be for him to be invested in daily life in such a way that such things as cutting toenails (and other hygiene matters), paying bills, putting in time earning a living, etc. will make sense and feel compelling to him on a level where he can achieve these basic skills. Here’s hoping High School will instill some good habits in this regard.

And then there’s the question of what will happen to him after I am gone if he can’t live on his own post-High School and into adulthood, which is the deepest, most constant fear of all of us with children (including grown children) who can’t necessarily navigate the neurotypical world in typical ways.

Whew – I am glad High school is four years long!

Dear Universe, may my child always have a safe home – where he learns, where he lives - where he is free to be himself.


4. On Love: Recently, my behavior generally gets interpreted by my teen in one of two ways: I am either invasive and embarrassing (smothering) or I’m uncaring and have hurt his feelings (abandonment). I can’t win. This is developmentally appropriate (see above hormones, lack of sense, etc.), but the combination of extra social and academic challenges he will experience make his feeling consistently loved even more of a priority. This, even as his interpretations and perspective are inflected by different ways of interpreting/perceiving my intentions, feelings, and actions - and those of others around him. It remains to be seen how this dynamic will play out in High School.

Dear Universe, despite his developmentally-appropriate sour attitude and unique, quirky ways of processing interactions, may my child know he is loved – enormously – exactly as he is as he makes his way into and through High School.


Dear Universe, for all the children privileged to be going back to school, and for ALL children, I wish these good things and more.  


Love,
Full Spectrum Mama




Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!



Tuesday, June 14, 2016

INFANT MASSAGE CLASS: “EARLY SIGNS”

Articles and blog posts on the early signs of SPD (sensory processing disorder, which I call sensory processing differences) and autism fill me with a mixture of recognition (yes, much is familiar), trepidation (at this point I’ve reached a certain level of saturation and also seen many stereotypes and errors), annoyance (ditto, plus the occasional offensive or condescending bits can set me back for days), and, sometimes, gratitude (after all, some of this stuff could be very helpful to parents – and most writers mean well!).

I usually find that I am holding my breath as I read, waiting for the triggers...yet I am compelled to read, always hoping to learn more about our neurodiverse world.

My son G was diagnosed with SPD at three, autism at eight. Being a bit spectrumesque myself, I would never have thought there was anything about him that needed to be evaluated (his evaluations were always at the behest of his teachers) but in retrospect a few things stand out.

My earliest memory of being aware of G’s possible difference from his “normal” peers occurred in an infant massage class. We mothers – this was in the East Village, in New York City, but yup, all mothers – were told to sit in a circle. I don’t remember precisely how old the babies were – early parenthood is kind of a blur – but they were all quite young, a few months old at most. We had pads and brought blankets and placed our babies on their backs on those blankets. We were given diagrams of massage strokes and instructed in proper technique for stroking and soothing our babies.

Infant massage was meant to be a bonding exercise. To stimulate our babies’ brains and help with their digestion! To make them happy! Healthy!

Except - my baby didn’t seem to be with the program. While all the other babies enjoyed a free and loving massage – yeah, try getting that a few decades down the line, babies! - my darling G was having none of it.




Figure I – Infant Massage Class. Not Shown: Ashamed Mother.


As soon as I tried to massage him, heck, as soon as I lay him down on his back, the screaming would start. Sure, there was the occasional peep from another baby, but nothing like G’s agonized cries. I actually tried three sessions before giving up in despair.

Clearly, I was missing some important mothering skills. I blamed myself, of course.

When G was a baby, I thought of myself as someone who accepted all people, someone who would never discriminate on the basis of ethnicity, gender, sexual orientation...Someone who accepted and loved people of all sorts. Yet I knew little to nothing about neurodiversity!

It would have been helpful to me as a new mother to have a positive concept of other kinds of difference, an idea of the incredibly wide ranges of neurology, physiology, psychology, sensitivity, sensory processing etc. that make up human beings. Obviously, this would not have led to shifting blame to my baby! It just would have made things make sense.

It would have helped to know that my baby needed deep pressure, not fluttery strokes that probably felt like torture to him. It might have been best to keep him partly or fully wrapped so that he could locate his body safely in space, instead of flailing around. He never liked being moved; there might have been better ways to transition him.

Instead, all I knew - in that context, with the limited knowledge I had – was that something seemed wrong. Since I myself had also always been “different,” this initially added to my disorientation and self-blame.

These moments keep coming, but now they come cushioned with fundamental commitments to diversity, acceptance, and hope.

When you and/or your child live(s) with an invisible, complex difference, explanations and strategies can be elusive and imprecise. I still sometimes don’t know whether my child needs help; and when he does need help I don’t always know how to help him. Sometimes I try to help him in unhelpful, unwanted or unnecessary ways, as do others. Other times we miss the boat and G is on his own with his challenges when some wisdom or support is sorely needed.

When G was screaming in the otherwise serene and harmonious infant massage space, I knew he was deeply uncomfortable, but I didn’t know that he had SPD, or that he was autistic, and that his sensitivities would benefit from a very different approach. Parents who recognize their children in “early signs” lists will I hope have important tools at their disposal, not least the knowledge that all parties concerned are doing their best – and that that is just fine. For the Full Spectrums, the labels that apply to us are mostly useful in that regard.

There’s still so much I don’t know, but I do know our differences are not our “fault.” I know that what is “wrong” is not us but a world that is primarily designed for the “average,” “normal” person – whoever that is.  

I know that I accept and celebrate G exactly as he is.  Same for me. And you. And you, and you, and you...:

This blog is a safe space for people to recognize a full spectrum of human being, and to explore how we might make the world a more welcoming place for all. Parents and caregivers who are searching for ways to understand, connect with, and support their children, individuals who are exploring their own differences, early-signers and adult-figure-outers, you are all welcome here.

Please visit the other sites below for more informative and inclusive posts.

Love,
Full Spectrum Mama











Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!




Tuesday, May 10, 2016

CH-CH-CH-CH-CHANGES: A NEURO-IMMUNO-MOMENT


As I tell my students, there’s been a shift in the world of philosophy over the last few decades toward context and the particular. Philosophers and ethicists used to search for “the one answer;” now they tend to embrace a range of possibility in ethically/philosophically "appropriate" responses. Similarly, in the larger world, the presence and testimony of neurodiverse individuals and families have made room for a range of what is “normal,” as well as a diverse array of approaches to difference. Since SPD (sensory processing differences) and autism are a huge part of my family’s life, I’m curious about these shifts.

I’ve been seeing a lot in the press lately around the immunology and neurology of difference (my favorite article, which happens to be about schizophrenia - by the brilliant Siddhartha Mukherjee -  is here); I’ve also been seeing a nuanced view of “fixing” people that acknowledges the subtle, sometimes tragic losses our “fixing” can cause, along with potential positives (this slayed me [for the record: I was surprised that John Elder Robison chose this treatment, but that’s another post]).

I’ve been asking myself: if context and situation vary so enormously, how could there possibly be one answer to the sorts of questions we navigate when we and/or our loved one(s) are neurodiverse? Respectful disagreement, while not being super-well modeled by U.S. Politicians, IS possible! 

I’ll use the word “change” to represent a range of possibility, from “cure” to “heal” to “progress,” but want to be clear that I stand pretty firmly in the acceptance-as-is camp. However, I respect the rights of others to want and advocate for something different than what I want and advocate for...!

With all the current research into our immune and neurological systems, both of which are related to neurodiversity (as well as other differences), we are faced almost inevitably with the following questions:

Do you want to change?
Do you want your child to change?
Does your child want to change? (And, for non-verbal children and adults, how do we determine this?)
Or do you want society, community, family, institutions, and/or context to change?
Or BOTH?

We have limited time and energy (sometimes extremely limited!): where will you choose to put your energy? 
Into yourself? Your child(ren)? Community advocacy? General advocacy? Change? Acceptance? BOTH?

There are limited institutional, state, federal, international, and non-governmental/not-for-profit resources: Where do you think these resources should go? 
To funding a search for a cure? A cure for what (autism, SPD, ADHD, difference...?)? Therapies (Physical? Physiological? Psychological? Neurological? Immunological?)? Resources to support families? Resources for schools and other institutions? Advocacy for change in the direction of inclusion?

(And...Finally...Do you even have time to think about all this stuff?)



Figure I – Spectrum of “Appropriate” Possible Answers to Each Question
  

As I also say in my classes, complex questions may naturally elicit answers that are complex, even seemingly contradictory or inconsistent. Our immune systems and our neurologies are intricately intertwined with our ways of being ourselves. We have many, many layers in our approaches to and feelings about who we are – and who we want to be.

We all want to be healthy, function at our best, be accepted; yet these things can manifest very differently, and mean widely different things to different people. 

Acceptance and change can conflict, coexist, contradict, and/or complement each other...

The respect we offer individuals, presuming competence and sharing autonomy, demands that we honor the multifaceted array of possible answers in a multitude of contexts.

Love,
Full Spectrum Mama





Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!



Tuesday, April 12, 2016

SCHOOL TESTING


This spring, I received the voluminous results of a huge barrage of testing for my son G’s three-year evaluation for his IEP (Individualized Education Plan). Among many, many, many other outcomes, I was informed that G had scored under the first percentile in “Irony.”

Although we have had him on a strict Monty Python/Austin Powers program for some time, and the kid has a fantastic sense of humor, we realize that perhaps he may well be lacking in “Irony.” Like many individuals who don’t fit the typical “norms” or test “average” in many areas,   G excels (sometimes extraordinarily) in some areas and is less skilled (sometimes remarkably so) in others.

In my experience, these sorts of test results – lower than expected, very uneven - are actually “normal” for many people on the autism spectrum, people with ADHD, people with sensory processing differences, people who are neurodivergent and/or disabled and/or differently-abled and/or quirky and/or don’t care about testing...

Just once, though, I’d like to receive some test results along the following lines:


Dear Dr. Full Spectrum Mama,

Here are our test results for your accepted-just-as-he-is child.

G scored in the 70th percentile for “Telling Bad Jokes.” Although we found that his jokes were generally pretty lame, and noted, significantly, that he was almost always the only one laughing at said jokes, his score was slightly lower because he at times did in fact stop telling jokes, especially when asked to “stop repeating that joke which we have already heard seven times.” Still, this is a respectable “Telling Bad Jokes” score, and something he should feel good about.

We noted several areas of growth. G’s “Confidence in the Face of a Lot of Really Daunting Obstacles” outcome has improved by 50 percentage points – to the 88th percentile - since he was last evaluated in his former school where he was getting bullied. Also improved were his ratings in “Zipping Pants” (up by 20, to 61st percentile), “Blowing Nose Rather Than Just Letting Snot Drip Down” (up by 15, to 56th), and “Overall Executive Function” (up by 3, to 4th).

His “Amazing Metaphorical/Metaphysical Insights Not Necessarily Appreciated by Peers but Mind-Blowing for Adults” score remains very high (92nd percentile), as corroborated by many of his teachers in the narrative portion of the evaluation; while the closely-related “Willingness to Write It Down According to Assignment, Dangit” score remains alarmingly low (5th percentile).  

We would also like to raise some concerns around the fact that G’s “Remembering School Stuff” score of 8th percentile does not seem to match his remarkable achievements in the areas of “Remembering How Many Days I Have Been Dating ___ “ (98th percentile), or “Remembering the Tiniest Details About Every Pokemon, Ever” (99th percentile) -  even with a 10 percent margin of error.

His IEP should reflect the need for accommodation in the former area, yet also take into account the possibility that G may have an asymmetrical range of priorities specific to his own...priorities.

Some of his strongest scores were in “Wonderfulness” (85th percentile; this score was mitigated by “Teenage Rote Sullenness” [45th]); “Interest in Girls” (98th percentile; this test is administered according to self-reported sexual preference and controls for Trying-to-act-like-you-are-not-thinking-about-____-All.The.Time); and “Thinking About Pokemon” (90th percentile; down nine points from previous score - possibly offset by “Interest in Girls”). “Knowing the Names of Pixies, David Bowie, Nirvana, and Red Hot Chili Peppers Songs,” at 65th percentile, was also solidly above average. 

He should continue to build on these strengths.

Although he scored just above average in “Teenage Boy Flatulence” (58th %ile), when measured against the general population G’s gassiness was easily in the top 10%.

Most importantly, for being unfailingly kind and polite (even thankful!) to our extensive testing staff, and for countless other reasons, G scored off the charts (above the 99th %ile!) in “Being Himself.”

Congratulations,
The Testing People



Love,
Full Spectrum Mama





Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!