HIGH SCHOOL PRAYERS

Dear Persons,

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!

An InLinkz Link-up

TEAM FRIENDLY FACE AT HIGH SCHOOL ORIENTATION

Dear Persons,

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

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?