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!



Monday, March 21, 2016

FOURTH ANNIVERSARY LISTS III: CHOOSING YOUR BATTLES

Dear Persons,

We only have so much energy in life. In my last post, THE FULL BUCKET, I wrote about what happens when that energy is all used up. Choosing your battles is one way to ensure you avoid getting so drained that you are no longer able to function well...

This year, I will give two simple examples from the Full Spectrums: Armpits versus Teeth, and Grades versus Manners.

Choosing your battles doesn’t mean you abdicate any discussion of or efforts toward other areas of life – it just means you reserve your mightiest strength for those areas that seem most deeply important for yourself and/or your loved ones.

Here are two choices I’ve made for us:

            1. ARMPITS VERSUS TEETH
Middle schoolers stink. Even with deodorant. Especially if you start with the crunchy granola natural stuff. We are on the Old Spice Ultra-Chem Turbo Level by this point but it only gets applied, shall we say, intermittently. You see, my G has very, very little interest in hygiene. So if I want to be sure he is doing something hygiene-related, I have to supervise.

I stopped brushing teeth with G about a year ago, trusting that he would take responsibility for this important matter. We found out the hard way last fall – when he had to go under general anesthesia to have a tooth pulled --  that he was not ready to brush his teeth alone. Now we brush our teeth together again, with him leading. Ten brushes in each spot. This is non-negotiable.

Sure, I ask G to put on deodorant and ask him if he has done so...but with my limited time and energy, sometimes deodorant doesn’t happen. Tooth brushing does.

Always.

            2. GRADES VERSUS MANNERS
How many talks do your children really want to listen to? Z is one of those people who is able to excel at anything she cares to excel in...So her consistently getting all threes (“meets grade level expectations”) on her report card is...unexpected. Sure, I’ve talked with her about this – quite a bit.

But I reserve my most heated, heartfelt talks for the area of what I call “real manners” (i.e. the manners that are about kindness and respect, not the right fork). Because Z has grappled with an attachment disorder since she came home, she’s always had issues with feeling she doesn’t have enough, and with control. These factors come into play frequently when it comes to sharing and treating others with basic respect.

I know Z is a tough cookie who will always make her way successfully in the world, so I don’t lecture too, too much on grades and hard work. But for her to feel good inside -- and for others to feel comfortable around her -- she needs to learn to act with “real manners” in heart and mind. This, like tooth brushing, is non-negotiable, so I save my heartiest lectures for this subject.

Because I am not at her all the time about certain other stuff (grades, etc.), we are both able to be more fully present in this important, healing arena.


We are all works in progress. It matters that we take a little time to see where our efforts can be most effective – and to ponder what we most value.  This can vary, of course -- the key is to take a step back and determine which battle you will choose.

The next and final anniversary post will be the most popular, putrid  post of the year: THE COMPLAINT DEPARTMENT!!! We at FSM are a leetle behind this year on account of because life, so there’s still time to get your COMPLAINTS in!

Thanks and love,
Full Spectrum Mama





Tuesday, March 8, 2016

THE FULL BUCKET




 I’ve seen a bucket metaphor here and there, used in different ways, across neurodiverse  communities. I recently shared it, in its OVERLOAD/OVERWHELM form (there’s also a form that’s related to goodness, happiness, and loving/kind acts), with Full Spectrum Grandmother, who found it very useful, so I thought I would share it here, too. It’s by no means original with me, but it’s been super-helpful in a variety of contexts.

When your SENSORY (as always, I include emotions and other mental states here as well, as feelings) BUCKET is full, you feel on edge, about to spill over.

You can’t take on more (tasks, responsibilities, activities), or even take in more (information, stimulus, social cues) effectively; in fact, more, in just about any form – even positive – is simply too much.

I think of my toughest years in graduate school, when I was reading super-dense materials at all times – and reading trashy mysteries the rest of the time. I didn’t have the brain space for anything more demanding.

Now that I have a family and work, my bucket is more Full than ever. One of the top bucket fillers is my smartphone! Back in the day, emails and phone calls were limited to very particular times, and texting didn’t even exist. Now we are on – and presumably accessible -  24/7. Dealing with “special needs” bureaucracy, family and personal health issues, finances, running a household, and teaching a high needs population at the community college where students face huge challenges every day just to get an education...I know you all have your lists, but that’s mine: what fills, and sometimes – often - overfills, my bucket.

This is important: it’s not just hard, bad, or stressful stuff that fills your SENSORY BUCKET – it’s anything that’s stimulating and absorbs (rather than rebuilds) your energy. This holds especially true for people with SPD (sensory processing differences). For me, these positive, yet absorbing bucket fillers include great times with my children and Pardner, cultural outings, fascinating classroom discussions, travel...

It’s genuinely helpful to be aware that my SENSORY BUCKET gets Full, and to have a visual for this concept, because when my bucket is Full I tend to feel hopeless, desperate. I melt down internally, by feeling useless and getting profoundly overwhelmed and unsure how to do the next thing, and the next...

I know what I need to make room in my bucket: long walks, yoga practice, lengthy bouts of gardening, meditation practice, reading time, creative time, above all, time alone. Oh! And regular (weekly? {monthly?? [yearly???]} massages! Haha.

But let’s look at a more realistic scenario: my son G. G tends to shut down when his bucket is Full. This is his own expression of meltdown. He will stop listening, stop getting anything done, retreat. After a very Full day of school and activities, my sensory-sensitive son needs, from what I can see: extended time alone sorting through his Pokemon cards, And he gets it. And it really soothes and balances him, makes room in his SENSORY BUCKET for the next day’s interactions and experiences.

People with sensory challenges often need to rest their brains.  We also need to feed our hearts and souls. What do you and/or your loved ones need to create room in your SENSORY BUCKETS? Are there little things you can do, step by step?

For example, realizing that every day I would tell myself I would practice yoga at home before school pickup “after I got everything done,” and that every day I would never be left with any time to do so, I have just started (on the days when that’s possible) taking a quick walk after school drop-off when I get to wherever I will be for that day - before I “get everything done.” It’s not yoga, it’s improvised...yet that little bit of self-care makes a bit more room in my bucket so the “everything” seems more manageable. A week or so of these walks has created enough spaciousness to enable me to write and draw this post – which would not have been possible last week, trust me!

What can YOU do for yourself and/or your loved one(s)? A breath? A break? A tiny shift or change? Recognizing and acknowledging a Full SENSORY BUCKET is a great first step!

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!




An InLinkz Link-up