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

Monday, February 29, 2016

FOURTH ANNIVERSARY LISTS II: ATTACHMENT DISORDERS


There are not as many advocates for attachment disorder awareness as there are for the other areas of advocacy I explore, such as adoption, autism, and sensory processing differences. For this reason, I regularly revisit this theme for this one-topic anniversary post.

Over the years, I’ve tended in this blog to focus more on autism awareness and advocacy because our experiences with attachment disorder feel somehow more private, more inflicted. Attachment disorders cause children (and adults) to act in ways that are often unhealthy, even anti-social, all because of negative childhood or early life situations that did not allow them to form healthy attachments, or prematurely severed such connections.  Unlike autism and other neurological differences, typically inborn states that do not fundamentally need to be “cured” (I write a great deal on this elsewhere), attachment disorders are a sometimes incapacitating psychological condition that can benefit from intensive treatment, primarily through therapeutic parenting or work with an experienced therapist.

I share our Full Spectrum family struggles with my daughter Z’s attachment disorder for two reasons. First, because families all or partly formed by adoption or fostering may be facing this condition unawares, and may be desperate for help; and, second, because one of the central reasons we are a Full spectrum is because my children are so divergent – and this is partly because of Z’s attachment disorder. 

I will offer a little background. As you read about my daughter, please do so bearing in mind that her condition was/is not her “fault” – and is therefore nothing to be ashamed of...

When Z came home she was furious - with good reason. She was ultra-demanding, starving, relentless.  As she got older she began to steal, hoard, and lie compulsively. She became controlling - and a master manipulator. Constant power struggles with a tiny person were exhausting for the whole family (including Z!). Her tantrums continued to disrupt almost any environment she found herself in, well into her ninth year.

Her acting out was most overt with me, her mother, because she trusted me the most -- and thus needed to constantly test me. Highly challenging attachment-disordered behaviors may well be reserved for the home environment, or particular individuals, such as a parent or teacher.

While she was small of stature, adorable, and enormously charming – traits which her therapist pointed out were actually a disadvantage to healing, because they masked the ugliness of her behavior – Z’s behavior much of the time was destructive in subtle and not-so-subtle ways.

If you have a child who is exhibiting such behaviors, GET HELP. Trust me, you’re going to need to learn to do things very differently than you might expect! For example, many families with children who were adopted attempt to make up for any pain caused by the loss and turmoil of the adoption process by being indulgent and extra-doting with their children. Conceding to a child’s every demand, even with loving intent, can be a recipe for disaster with a child who has an attachment disorder. Look for a therapist with expertise in this area, and read everything you can find. I’ve talked about some specific strategies here and here and here, as well as below.

Children (and adults) with attachment disorders desperately need to feel SAFE. To that end, they try to control the things and people around them.  It might sound counterintuitive, but – in a very real way – such attachment disordered behaviors emerge in a painful search for safe, strong attachments. Unfortunately, attachment disordered actions tend to result in forming primarily conflict- and need-based relationships, rather than healthy, loving ones.

TMI? Successful therapeutic parenting in one sentence? Yes:

Create an environment with
CLEAR and
CONSISTENT
RULES and
BOUNDARIES
          so that your child can feel safe
-- and so can channel his or her energy into healing and growth.


As unknown as they are, attachment disorders are very real. They can be debilitating for families; they are also sometimes almost completely curable. In our family, many years of consistent therapeutic parenting, at times under the care of a therapist who specializes in attachment disorders, have resulted in a child who is light years healthier and happier than she would have been without this specific mode of therapy.

As Z heals, her true character – brave, loyal, funny, quick, loving - begins to emerge, unhindered by a condition imposed upon her by chance through her birth circumstances. She’s strong, in her own words, “Tiny on the outside but HUGE on the inside!” She’s a wonderfully practical girl, sometimes a bit more blunt than she was raised to be...but these things are characterological, part of her disposition, not just a result of trauma. In fact, we see a myriad of traits, such as being an astute judge of character, that merge positive aspects of her natural self with lessons learned from living through an attachment disorder. Perhaps best of all, while she’s never going to be the world’s most sentimental person, she’s cuddly in a way I could not have dreamed of even a few years ago.  

She feels safe enough to relax in my arms...versus her previous inclination to demand that I carry her around at all times. The wonderfulness of this shift cannot be overestimated.

Children are terrifically resilient and, like plants, they just want to GROW. They just need the right conditions to do so in the healthiest way possible for their unique needs.

Love,
Full Spectrum Mama


Tuesday, February 16, 2016

IS IT SHOWING?


In IS IT TOUCHING?, I explored how the traditional view of sensitivity is limited --and somewhat discriminatory toward highly sensitive people and people with sensory processing differences (SPD).  I meant to put forth the idea that the way we perceive and process things should be recognized as a sort of neurological/physical/emotional/temperamental spectrum. Simply put, we have widely divergent levels of physical and emotional sensitivity. Furthermore, as self-advocates and advocates for our children and loved ones, it is up to us to decide whether our sensory (I include emotions as feelings here) processing differences are problematic, or glorious, or both, or neither...

This post was one of my most-read ever, and elicited many responses, both public and private.

One interesting theme that emerged from these conversations was that of EXPRESSION. I heard from people who have incredibly strong sensory and/or emotional feelings – but hardly express them at all. And I heard from people who feel they are “all over the place” in a sort of hot mess way and want to calm their actions, reactions and attitudes down (here is where some calming sensory activities might come in handy!). I heard from parents with super-sensitive, expressive children whom they are trying to understand...In short, it emerged that what we show (in those actions, reactions, and attitudes) is not just an exact reflection of what we feel.

So, this month, I’d like to bring your attention to the possibility that sensitivity does not correlate directly or evenly with expression or external reactivity. Some people develop coping mechanisms to hamper their reactions because of cultural or familial pressures. Some are naturally less expressive. Some people stuff their feelings. Others let it all hang out, sometimes in spades – intentionally, or because they cannot suppress the expression of their reactions.

Another manifestation of the sensitivity/expression interplay may be seen in those of us with sensory processing differences where certain stimuli that might seem minor to others (tags on clothing, bright lights, strong tastes or textures in food, temperature variations...) are interpreted by the brain as major. This may then result, expression-wise, in sensory overload or “acting out” or “shutting down” or...

At the extremes, you get people who may appear histrionic – your drama kings and queens who scream when stepping into a puddle of water (guilty) or a person gives them side eye; or your heartless stoics, who don’t even flinch when a finger is cut off or a loved one dies.

Notably, the histrionics and the stoicism may reflect/express SIMILAR levels of sensitivity, exteriorized in different ways. What we are experiencing inside is not always expressed in ways that exactly match our inner experience of intensity. People can be low on the sensitivity scale, but high on the expression scale; or they may feel deeply, yet not be expressive of that externally...

We may feel or express less – the proverbial “stone;” we may feel or express more, experiencing or acting explosively, like “fireworks.” These two things – what we feel and what we show - don’t usually occur in a matchy-matchy fashion.

What’s more, sensitivity itself can be emotional, physical, neurological...; while expression can be through actions, words, attitudes, moods...AND, as this scale shows, these factors can intersect in a Full Spectrum of ways!



Figure I – Showing Chart: Sensitivity and Expression: Stone to Fireworks, Squared

In addition, our attempts to modulate our expression are not always in line with our intentions.

As I wrote in IS IT TOUCHING?, I am a total sap and literally – embarrassingly! -  unable to not cry under a variety of circumstances, from funerals and other clearly sad occasions to anything touching (try this for a tear test), sentimental, or even joyous.

On the other hand, things that move me powerfully but are hurtful, complicated, or angering can overwhelm me and cause me to shut down and seem withdrawn or even cause a meltdown (internally!). And I am just one feeling/expressing person, a fraction of my Full Spectrum family. I am still trying to figure out my son, who sometimes can appear extremely insensitive as a reaction to sensory overload; my daughter, who seems impervious to all but a very few extremely, tremendously sensitive areas; and Pardner, who has the rare gift of being sensitive but non-reactive, observant and caring, yet as steady as can be. But Pardner has his areas of sensitivity, too: do not put your bike up against his car, nor, if you are a child with potential child gore on your hands, or a hairy cat in your arms, should you “touch the threads.”

So, finally, our sensitivities and expressions thereof can also vary from experience to experience, with different situations being more or less
Manageable/controllable,
moving/touching/intense,
and/or expressed
!

In the neurodiverse world, terms like “over-responder” and “under-responder” get thrown around, as if there is a mean level of response that is correct. Add on different ideas about social cues and behavior, reactions that may be judged “inappropriate,” or “unexpected”...Whew. I’m looking to expand our perspective on what’s a natural part of the range of human being, not criticize people. Human sensitivity and expression weave together in diverse, complex and fascinating ways, in a dynamic matrix represented here by a spectrum from stones to fireworks.  

What holds for all of us is that we want to be our healthiest selves. We have the privilege and responsibility of figuring out what that means - for our children, for ourselves, for our communities.


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!






Wednesday, February 10, 2016

KID KOANS III


When is helping not helping?

How can we tell when our conceptions of our children get in the way of clear perception of our children?

Protect or Trust?



Friday, January 29, 2016

TEAM FRIENDLY FACE AT HIGH SCHOOL ORIENTATION


Team Friendly Face (links: http://fullspectrummama.blogspot.com/2014/05/team-friendly-face.html and http://fullspectrummama.blogspot.com/2014/06/team-friendly-face-update.html), convened at the beginning of Middle School, was represented the other night by a few friendly faces as I walked apprehensively into the orientation for parents of incoming ninth graders.

The auditorium was significantly less full than I would have expected, given the size of the incoming class of first year high school students. To this casual observer, it emerged that there were basically two types of parents who chose to attend this event. Both sets looked keyed-up, nervous. But one set looked excited, too, whereas the others, my Friendly Face peeps, looked TERRIFIED. We know how hard transitions can be for our kids, both for individual reasons, such as anxiety around new things, executive function challenges, and so on, and for larger-scale reasons, such as the inevitable jostling and alienation that come with new social situations and groups. (Guess who’s usually targeted in high stress situations? People who are different? Yup.)

The future  AP parents, the ones who indeed legitimately signed the Honors English agreement that was in the million-page high school transition packet – the Honors English permission form that I’d signed because, why not? Hey, my kid is GIFTED, and...um...honorable – kept asking questions about things like “prerequisites for calculus.” The rest of us cringed, kept quiet. Sure, the school administration and teachers seemed welcoming and nice, but we all knew our kids might need a slightly different – probably more extensive - set of guidelines.

After the presentation, I felt shellshocked. Team Friendly Face member J came over to me, crying. I felt a migraine descending. We tried to prop each other up. Team Friendly Face members K and C reminded themselves and us that our future ninth graders have such a gift for finding the good in every situation. That our fears don’t always manifest – and often go blissfully unshared by our children...

Then my shy, sometimes uncertain, Team Friendly Face friend J walked up to the Special Education representative and, before my eyes, turned into an articulate, assertive Warrior. While I stood mutely by, gazing through narrowed eyes, trying not to sway or vomit (migraines are fun like that), she introduced herself (and me), asked some really smart, important questions, and just basically advocated her butt off for her son. I was so proud of her! And a bit ashamed that I’d just written a whole post on advocacy...But then sometimes we need to lean on others when it gets too much. I was super grateful for those Friendly Faces at this event! I know I will be getting plenty of chances to advocate in the next few months and, thanks to J, some of my questions have already been answered.
   
It was also a comfort to know I could jot down some reflections on this ordeal in my 300-page and growing Full Spectrum Mama draft file. I publish only a fraction of my writing, but somehow the luxury of writing things down, along with the opportunity to process this writing provides, and then – when appropriate, when I have the time to polish the writing, etc. -  I am grateful to be able to have a part in the wonderful blogosphere phenomenon of letting others know they are not alone.

That being said, I’ve always seen THE COMPLAINT DEPARTMENT as a place where ANYONE can share their experiences. I will be publishing a plethora of COMPLAINTS in the upcoming yearly post. Please email me your tisk-tisks, your triumphs, trials, tribulations, tales of woe and so forth at jineffable@gmail.com. 

Love,
Full Spectrum Mama