HOPE

Dear Persons,

Last week, I took my daughter Z on a mother-daughter trip to Emily Dickinson’s home. Since Pardner is a chef, we have lots and lots of time together, but are almost always with her brother, G. The outing — happily anticipated by me —  involved a lot of side eye and bored resignation on Z’s part. Parsing which aspects of her attitude belong to rote teen sullenness, which are characterological, and which are attachment disordered is pretty much impossible, so I will just say that she was not terribly impressed. (She was “sort of ok” with the parts of our “adventure” that involved food…)

We were able to have this delightful alone time because, this spring, G got into a federal college prep program for underprivileged and/or underrepresented teens that provides several residential weeks of classes and other enrichment in the summer. 

I sobbed for days when G got accepted into this program. It’s not that I’ve never had allies. There have been lots of angels along our path (and some less-helpful people as well, to put it mildly…), especially certain teachers and helpers in his schools. But this program is comprehensive, and year-round, and it explicitly aims to get kids into college who might not otherwise go. 

I’ve always seen G — with his amazing ideas and creativity and interesting, interested mind —  as someone who’d have a wonderful, inspiring time in college; but I’ve also known it would be a huge stretch, given his learning differences and our income. I’ve been sad about that pretty much since G’s diagnoses.

For the first time, I felt like  a group of people who could really HELP G also really GOT and SAW him. After so many years struggling to get school staff to follow his IEP, or see him as more than just a label, these people were going to spend hours and days and weeks working with G and other teens to build the exact skills needed to get into and attend college!

The program was also going to help…well…ME. This enterprise of advocating for a child with learning and social and physical differences and challenges can be all-consuming. There have been many, many times when I have felt like other people were talking about a different kid when discussing G — and that they basically had never even met the child I knew…

Knowing that this program was going to help me did two major things: it allowed me to finally admit how much I NEEDED that help, and it gave me HOPE. 

Seriously, dear readers, it was a revelation to me how lonely and afraid  I’d felt in this endeavor — so much so that I couldn’t even acknowledge those feelings until there was something to alleviate them. I mention this because you may be in the same boat and I hope you, too, can find that thing or those things that uplift you and yours.  

In the weeks leading up to his first departure, I was increasingly worried as G failed (as always) to brush his teeth unless supervised or shower unless coerced, evinced literally no executive function whatsoever, and had an end-of-semester 9th grade experience in which both his grades and behavior (at home and school) could have been more than a scootch better.

In his first week at the program, self-regulation issues got the better of him. I was barraged with emails with innocuous yet terrifying headlines like “Update,” and “Checking in.” My Meeting Friend — having endured such periods of uncertainty and fear herself when her child was on tenuous ground in various programs — helped me survive. She gave me hope. 

Together, G and I and the staff of the program came up with strategies (including having no phone whatsoever) to assist G to fully participate. We gave me hope. He’s in the third week of the program and so far says it’s “fun” (his highest compliment). 

And Z? She’s doing her own camp, where she can be surrounded by other sour teens. I am pretty sure she’s having “fun” too!

Figure I - “Lego Construction Representing Unity and Difference” (when G saw I was working on this blog post he made this for me, saying, “Everybody expects Lego stuff to be square and this is not - it’s different. And the black and white together represent unity.”)

(Figure II - “The Usual Square Lego Form”)

It’s a little bit of a vulnerable thing, to allow oneself to hope. There have so far been ups and downs, but I’ll take it. 

I shall leave you with this poem, by a woman many people speculate may have been on the autism spectrum — and who certainly was both extremely “different” and successful in her own ways. 

         “Hope” is the thing with feathers 

         By Emily Dickinson

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.

Love,

Full Spectrum Mama

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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SHOULD I HAVE SAID SOMETHING?

“Speak your mind, even if your voice shakes.”

- Maggie Kuhn

Late October. I am on a walk with my puppy, who has just been diagnosed with Lyme. I stop to chat with an elderly neighbor, and we get on to the topic of tick “prevention” meds, veterinary care in general…She knows I am a writer and editor and tells me I “should have been a vet - what with the cost of tick medicine…” She says her granddaughter wanted to be a vet but “instead works with autistic children,” and, “What a mistake! It would’ve been easier to work with animals!” As I often am in such situations, I am, briefly, paralyzed. I wonder if I should say something. And I choose not to do so. 

For one thing, my neighbor is elderly and I don’t want to seem confrontational. For another, I sometimes get tired of always having to explain things and advocate; I save that energy for where it really matters: primarily for school, family and close community, and for thinking about and researching G’s future options… 

Later I realize it seemed like it would have been an “easier” choice if she had said “women” or “Chinese people” instead of “autistic.” But it’s NOT. In some ways, there’s a big difference between a casual statement by a neighbor and bullying or discrimination…But in a very real way these are all on the same continuum. 

Dear Persons, I can think of so, so many similar instances when I have said something about injustice or discrimination or stereotyping and some where I have not . Times when I have been angry and said angry things. Times when I have been bullied for standing up for my child. Times when I have been articulate, convincing, empathy-inducing. Times when I  have been speechless, like when someone yelled a racist slur at my daughter, or just plain confused. It can be scary to speak up, and, although I usually don’t lack the courage, per se, my sensory processing differences (SPD) can mean that when I feel scared I can’t also process a coherent thought/response until after the moment has passed…

And then…the election. Even my readers abroad know which one I am talking about. 

This is a moment in history when it is important to be very clear and so I want to say something here. Here is one place I speak up, always. I cannot separate out whether my stance comes from having one child on the spectrum and one child who is a person of color (and many family members and close friends of color and/or of non-hetero orientation/identification and/or on the spectrum and/or of non-Christian religious affiliation…), but my stance and our stance as a family is very simple:

The Full Spectrum family stands with all people of color and the Black Lives Matter movement. We stand with the First Nations of the world in their struggles for recognition, sovereignty, and protection of lands. We stand with our brothers and sisters on the spectrum, our disabled brothers and sisters, our differently-abled brothers and sisters, our diffabled brothers and sisters. We stand with our immigrant brothers and sisters. We stand with our Muslim brothers and sisters. We stand with our Jewish brothers and sisters. We stand with all women, as well as with LGBTQIA communities, with all people who believe in equality and the right to choose who we love, who we want, what happens to our own bodies  - and, further, we believe in equality and the right to choose even for those who don’t agree with us. 

We stand with all oppressed peoples, as well as with all people with financial, white, or other privileges who believe in equality and use their privilege(s) for good. 

This goes beyond wearing a safety pin, attending protests, and writing postcards as part of the Local Love Brigade, to being willing to open our home and beyond. When they come for you, when you need solidarity, call us to your side.  

Would we hide you? Yes. 

This is one time our black and white thinking serves us: there’s no room for equivocation here.

We families who have significant differences from “the norm” are used to standing up for ourselves - and, often, others. We might sometimes be tired, but we are experienced advocates, sometimes to our own surprise. These skills are especially important now, as we see hate crimes and discrimination on the rise, and ignorance being celebrated.  Sure, many will not listen or truly hear us, but some people will, and that makes our efforts worthwhile.

Figure I - Not Saying Something vs. Saying Something

Should I have said something? Yes. Next time I will, even if it’s hard, even if I’m worn out, even if my voice shakes. 

I hope you will, too.

Love,

Full Spectrum Mama

P.S. Coming up in my next post: ways to say something!

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

IS IT SHOWING?

Dear Persons,

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!

An InLinkz Link-up

FOURTH ANNIVERSARY LISTS I: ADVOCACY

Dear Persons,

Every year, this time of year, I get to indulge in a series of posts that use my most beloved mode of thinking and organizing: LISTS.  The first in the series has always been on ADVOCACY, a subject central to most everything I believe, ponder, and do, as a mother and as a writer.

I’ll be heading into both three-year IEP evaluation meetings and high school transition meetings in a few weeks. Considering the week I have just had, where I

1. noticed on page 27 of a 40 page IEP informational packet that G’s services were being cut from 24 hours per week to 11 for this fall when he starts high school;

2. noticed that G was once again failing several classes and had to engage intensively with him and his teachers and paraprofessionals and case manager* to get him back on track, mostly around executive function matters; and

3. travelled 45 minutes to an away basketball game to watch G play, having attempted a four-tiered system to help him remember his gear (for the record: written list, email, lecture at breakfast, and quiz in car) only to find that he’d forgotten his shorts.**

            ...this was a great time for me to review my advocacy lists and get prepared for what’s to come! As my Meeting Friend can attest, this sort of schedule of minor disastrophes is all too typical for we atypicals, so any time can be a good time to sharpen our advocacy skills.

Here are my previous anniversary posts on advocacy, chock full of tips for success (and some choice “don’ts”) in delightful list form:

Links:

http://fullspectrummama.blogspot.com/2013/01/first-anniversary-lists-i-advocacy.html

http://fullspectrummama.blogspot.com/2014/01/second-anniversary-lists-i-advocacy.html

http://fullspectrummama.blogspot.com/2015/01/third-anniversary-lists-i-advocacy.html

You can also use the “search” function at right to find more posts pertaining to this important subject.

Since I’ve been blogging awhile now, I’ve more and more had the privilege of being asked for advice and support from near and far around advocacy. It’s probably the thing I get the most queries and referrals about, and I am pretty sure that’s because we all get intimidated as well as confused by powerful, sometimes-inflexible, institutional systems that are larger and more complex than us, and full of people who have their own agendas, not to mention the need to become well-versed, quickly, in completely new subjects...All the while dealing as individuals and/or parents with navigating a world that is not always welcoming of difference.

I’ve come up with this handy-dandy three point list to summarize the key aspects of advocacy as I see them, after almost a decade of advocacy:

1. INSIST!

2. PERSIST!

3. EXIST!

...And now for a little elaboration:

1. By INSIST, I mean, to go with what you know is right, whether anti-bullying or pro-services and –adaptations(–accommodations), whether at school, at work, in the larger world...Oftentimes you might not even know what the law or rule or adaptation/accommodation or service or policy is...but you know in your heart that you or your child deserves better. Is your or your child’s neurology, sensory profile, or other difference significantly impacting or impacted by your/their school (or work, or...) experience? Then something needs to change. Part of this step is finding out what can be done – finding a way to make things better – and then INSISTING upon it.

2. By PERSIST, I mean: don’t give up.  Sometimes our efforts at advocacy are flat-out exhausting. Sometimes they don’t help us or our children but they help others down the road (laws, do I have examples of this). If possible, keep trying: sometimes it might just take one more call, or google search, or email to another parent or a friend to push things over the line to full or partial success. Yes, there are a lot of things working against progress (on both smaller and larger scales), but there are good guys out there, and rules and laws that are meant to support equality and fairness...we as individuals can make a difference in the creation of and changing of attitudes and laws, too, but it takes time. PERSIST, dear reader, and find these people and these policies (or be/create them!) and let’s level the playing field!

3. By EXIST, I mean: you are a person! Yes, you! Take care of yourself. I don’t do this. None of us do. But we should. Especially when the world needs MORE from us, and we feel we’ve Nothing left. Sleep. Good, nourishing food. Taking a break sometimes and just reading or going for a walk...Am I ringing a bell here?

Life can sometimes feel like a roller coaster, all the more so when you and/or your child has/have atypical learning styles and/or neurology and/or abilities. When I contacted G’s case manager* to review his grades from the depths of a reasonable yet debilitating funk, she responded on that subject and then, later, sent me this:

I forgot to write it in my last email but...I have been meaning to let you know how amazing [G] was during his Socratic Circle in English class with [teacher]. He related the poem 'Kindness' to his negative experiences in [pre-move, reason-we-moved, elementary] school with bullying and was able to speak to how it made him understand kindness more. He also said that because of this experience he has become a more compassionate person. I was so impressed and moved by his thoughtful input. He was serious and thoughtful. It was just wonderful!

...This email kind of made up for the other disastrophes that week, my point being: take joy/comfort/light where you can...you may need it! Seeking out and really listening to those who recognize/acknowledge/celebrate your or you loved ones’ real gifts are a part of self-care and feeding of the soul.

You know – roller coaster alert - I had mixed feelings when this (very kind and hard-working) case manager* subsequently told me that “[G] could be in an advanced language arts class if not for his issues with organization and writing.” I mean...what’s not happening for him at school that you are not helping him enough with these very issues (learning differences [a.k.a. disabilities – the language we choose is part of advocacy!]) to realize his potential??? Wait...It’s time to advocate...Ciao!

Next Anniversary List: FOURTH ANNIVERSARY LISTS II: ATTACHMENT DISORDERS.

Love,

Full Spectrum Mama

* Ok, “Case manager” makes my son sound like a “case.” Yuck. Note to self: another advocacy goal for when things slow down....??

**The fact that G is on the basketball team is a subject for at least seven or eight future posts, which I will likewise write when the proverbial things slow down...

IS DEVELOPING THIS SKILL: BALANCE(S) EDITION

Dear Persons,

The fall semester brings my favorite season and also, this year, an unexpected bout of teaching Intro Phil, which class only enrolled after registration closed so I was rather unprepared, the class that is by far the hardest class I teach because there’s no room whatsoever for winging it and I have to think “deep thoughts” and understand them, at least momentarily, so it takes a ton of prep, which is hard since I did not think I was teaching and took on other work, and even I don’t know where this sentence is going.

Frankly – and perhaps the above is indicative of this, hmm? -- my life generally feels out of balance, especially because of the difficulty of earning a living in a rural area while raising two high-needs kids. I’ve taken some steps to try to remedy this, but the biggest one was going to be firmly establishing a new, wildly lucrative line of work (Ramp up the editing? Finish book proposal and become publishing sensation? Teacher coaching???) this semester while I wasn’t teaching.

Oh well.

My Laotong (old same, best friend) recently shared some thoughts on balance. She said one of her wise teachers once told her that stable, even balance is a myth. That to really accomplish something you need to pour everything into that bucket, rather than trying to just dribble a little so your other bucket(s) stay(s) evenly filled. Except. If I pour any more energy into my career there just won’t be anything left for my family...and meanwhile my career is a hodgepodge that’s confusing even to me.

It’s also time for G’s three year evaluation. At times like this -- with multiple daily emails, calls, written correspondences, meetings... -- parenting my older child alone feels like another full-time job. Our last three-year eval was a Battle Royale about which I wrote in PROCESS, REPRESENT, TOOT, so grueling I am loathe to even recall it. But recall – and strategize - I must. His current school is proposing more testing, including adding testing for ADHD, which I thought was ruled out by/folded into his autism diagnosis years ago. Their explanation is that with more results they will be able to develop more tools for helping G succeed as he heads into high school next year.*

But I have to balance the school’s need for testing, documentation, and tools with how much G hates testing, how vulnerable he is to feeling singled-out, how much time this barrage of testing will take away from his much-needed academics. And we also must, at the same time, make sure their assessments reflect how G really behaves in real life contexts (he’s great at social skills in a two or three person small group environment, for example; outside of that, not so much; there’s a similar disparity for academics).

I need to try to get the right balance between the labels/tools/testing bucket and the acceptance bucket. And it’s hard to even know how to find that balance when I am facing piles like that in Figure I in addition to my work piles (not pictured).

Figure I -

The Behavior Rating Inventory of Executive Functioning

The Social and Atypical Behavior Questionnaire

The NICHQ Vanderbilt Assessment Scale

The Behavior Assessment System for Children, Second Edition

Figure II –

Closeup, Random

When you see such a plethora of tests you cannot help but think as to how this is your child's LIFE! The answers to these questions will be used to evaluate a human being, your beloved child.

You want them to be accepted and celebrated as they are, as well as situated in school so as to best Learn. You wonder how the oversimplifications of what feels like millions of multiple choice or scaled (always-often-sometimes-never, and so on, see Figure II) questions  can possibly reflect your child, and pray the testing will somehow be helpful.

You never, ever, ever want your child to read these generalized forms that aim to identify, problematize (so as to receive services), and label (ditto) and feel bad about him or herself, or judged, or reduced to a standardized series of questions and answers.

You have to go to the bathroom many times while filling them out.

Or maybe that’s just me?

Consider that while I try to find balance in testing and school in general for my son, the time this effort takes shifts the aforementioned balance I am trying to find in work...and the balance I am trying to find with my zooming into teen-land-three-years-early (she just turned 10!) daughter...

I need less in the bucket that holds stuff like me crying in the bathroom for an hour because I suddenly find out there’s a random, last-minute half-day and my schedule is so precariously micro-scheduled that this puts me over the edge. That’s a balance that’s too delicate!

When I look around me, I see that I am not alone in feeling unbalanced. Perhaps that’s because I now know – thankfully! – a lot of other families and people who fill a Full Spectrum of their own. But it’s not just them. As my fall 2015 Intro Phil students say, this system is hard.  It’s impossible for most of us to do as Aristotle advised and become a “happy philosopher,” spending your time reasoning and pondering...

But we get up every day and go after that elusive balance, don’t we? Perhaps that’s what balance is in the real world? 

Love,

Full Spectrum Mama

*What?