SITTING STILL

Dear Persons,

We recently went to my daughter’s middle school concert. To my amazement, my 18-year-old son sat through the entire concert without fidgeting, talking, or calling out unexpectedly to kids onstage. 

It was the first such event I’ve ever attended without breaking into a cold sweat from anxiety over his behavior. That includes, over the years, many, many concerts, movies, plays, musicals and other performances during which attendants are expected to be quiet and attentive. 

I’ve been a mostly solo (my partner, Pardner, is a chef/owner of a restaurant) or entirely single parent for most of my children’s lives. With a couple of notable exceptions, I’ve spent every weekend on my own with them for the past twelve years or so. 

It’s been really hard—and REALLY wonderful. 

Early on, I decided I wanted to be a person and do things, and so I’ve been dragging them along to events all these years. 

I hadn’t realized how much G’s restlessness affected me until the other night. 

There are so many little ways in which life can feel daunting. What we usually do is soldier on, right? 

But it’s amazing to consider all the possibilities that open up when you actually feel free to enjoy an event rather than keep most of your energy on someone sitting next to you. 

Sitting through that concert like that was kind of a big deal. 

And it got me to wondering: How much energy have I wasted on worry over these many years? 

I usually explain and justify my worries to myself as solution-seeking behavior. 

But no amount of anxiety could possibly have hastened G’s development into the amazing young man he is now. 

And, to be honest, my worries probably kept my brain too busy to come up with good work-arounds and ideas. 

Plus, ALL ALONG, G has been the happy, kind, funny, fun, loving person he is now. Just a bit more fidgety. (And, truth be told, he wasn’t always all that into much of the stuff I dragged him to…)

Yet I persisted in worrying much of the time about G’s fidgeting and behavior—and not only insofar as it affected him at the time! I also future-catastrophized about potential impacts on his career and how it  might alienate him from the “regular” social world. 

What good did/does all that worrying do? How many other useless ways do I spend my time anxiously mulling over and anticipating possible disastrophes? 

We all struggle with how to be in society. And knowledge around expectations and societal norms comes slowly to some. So do the sheer physical ability to settle down and key mental capacities, including emotional regulation. 

So why do I torture myself unnecessarily? 

I know I’m not the only parent (or guardian, or loved one) of a child with differences (or parent, period) who does this. 

Frankly, I wasn’t much of a worrier, pre-kids. Somehow the little worries of new parenthood mushroomed over the years—sometimes with good reason—into a constant stream of nervousness. 

Looking back, I wish I could’ve enjoyed myself more as a mom, instead of only now realizing all this. 

I’m going to work on finding a way to avoid breaking into a cold sweat when I go places with my children. 

More to the point, I’m going to take a close look at the ways worry has come to pervade so many areas of my life that it’s often depressing and sometimes even debilitating. 

Because I have a hunch that in all cases there’s a similar element of complete futility.

I’m going to try to be gentle with myself in the process: This worry has developed as a result of a lot of hard stuff. 

But I’m also going to be firm, because I’ve had enough!

Worry is my issue and I’m going to own it. 

I cannot “control” my kids anymore now that they’re teenagers. Nor can I make everything right for them!! In fact, I never could entirely do either. 

I can see now that G has moved on. 

Time for me to do the same.

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 Mommy 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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TOO TIRED

Dear Persons,

I’m tired this week, too tired to really even think up a good, snazzy blog post.

…But it occurred to me that it might make sense, for this month’s Voices of Special Needs Blog Hop, to acknowledge that parents (and caregivers) of people with special needs often get really, really tired. On top of all the “regular” parenting stuff that makes “regular” parents pooped (whatever “regular” means in both those contexts), there’s just more general day-to-day negotiation and oversight with bureaucracies like schools and agencies, not to mention the time spent investigating and dealing with therapists and treatments (and finding the money or resources for these??? Puhlease!), never mind additional efforts at home and in social contexts with our children themselves. 

Here’s a very small example: Does YOUR teen do this every day? 

(Not shown: all pockets bulging from giant pokemon decks. Why picture was taken originally: because when I told him he had to fix his socks - as I do almost every day -  he looked down - as he does almost every day - and said “They’re fiiiiine.” So I tried this new strategy…)

Guess what? He’s tired too.

It’s often exhausting to live in a world that seems to mostly operate by rules that don’t make intuitive sense to you - and that can even sometimes seem wrong or “dumb” (his word). Like the socks-outside-of-pants rule, and others that can be less benign, like the brushing-teeth rule or the sleep-at-night rule (this is a fun one vis-a-vis being tired, right? People with neurological differences, as well as a range of other disabilities, often struggle with sleep challenges), the following-directions rule, and so on… 

My daughter also has special needs. As with many people who have spent time in orphanages, she has an attachment disorder. We’ve worked really really hard  - on our own and with therapists, teachers, etc., - and she’s healed so much. But she still moves in the world with a heightened vigilance and a fundamental lack of trust that can sometimes come out in unhealthy ways.  

She’s tired too. 

And so, I bet, are you, sometimes. Too tired. Of course you are. 

And of COURSE we love our children with all our hearts. Duh. It’s just that this world is somewhere between a little bit and a lot harder every day when one has and/or ones children have differences from the “regular” (with the usual disclaimer for this word) people for whom the world seems designed. 

It’s hard being a parent. It’s hard being a parent of a special needs kid. It’s hard being a special needs kid. Heck, my Meeting Friend and I sometimes text each other “NN,” our abbreviation for “Night, Night,” at eight am.  

When Pardner says, casually, “He’s probably not going to be able to live on his own. Don’t you know that?” NN. 

When just getting to school in one piece is a miracle? NN. 

When you worry ceaselessly about your child (or your children) - not because there is something “wrong” with him/her/them but because the world is so much harder for him/her/them to navigate - and thus are moved almost to tears by pants tucked into socks, again? NN.

PLEASE don’t feel alone in being too tired sometimes. I recently texted a mildly-hysterical friend who has a non-sleeping toddler to tell her to remember that when we don’t get enough sleep we often feel way more negative about everything than we otherwise would. Then I thought, “Good one, FSM. Listen to your own words, why dontcha?” Being tired actually isn’t the same thing as being depressed, having an anxiety disorder, or having a too-hard life - but it sure can feel like it!

Can we be gentle with ourselves? 

Let’s try to prioritize getting more sleep for ourselves AND our families, however possible, and taking care of ourselves so we don’t get too tired and remain that way all. the. time.

NN!

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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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!

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SUGAR, DEAR

You do keep Dear Sugar in your bathroom, yes? So that when you wake up first thing in the morning and think “I can’t do this day,” or when you get that precious three minutes where you sit on the toilet ALONE pretending to poop, you can take the book in your hands and Sugar can be your oracle and give you exactly what you need to open the bathroom door and emerge human and more whole just by opening up the book and reading? 

If not Dear Sugar, what is your DEAR? What shows you TRUTH, on a bed of laughter, with a chiffonade of tears? HOPE, wrapped in brutal honesty, with a core of sweet, sweet love? PERSPECTIVE, nestled in a can of whoop-as$, with a side of I-get-it-though?

Ideally, everybody should have something like this, a tiny escape-comfort that is always there when needed. Maybe for you it’s music, or cooking, or...? Books have always been that thing for me, as they are for my son. Even at parties. 

I was recently invited by a Very Big Deal Agent to write a book proposal for her agency. I am still struggling with the requirements of the proposal, above all, the selling-of-self. But I think that very quality of being there for others in a very honest way makes this writing worthwhile, and makes a book a valid proposition for this blog. So I am doing my best to get it done.

At the same time, summer is looming. I see people posting on facebook about how they “can’t wait,” and I try to share their enthusiasm, and heaven knows I want my children to have those idyllic summers of which people speak, but—but...: I’ve never had a chance to not be working in the summer, which makes things sometimes quite rough. This year I at least had the foresight to coordinate what few camps the kids attend (hey, both kids in camp during the same week: my big insight from summer 2014!), so that I will have some time to work while both kids are having summer fun. (Have people noticed that camp often costs more than one can earn? What’s up with that?)

Like so many of us, I also hope that I too will get some glimpses of summer fun. That during the times when I am with my kids, I will actually be with my precious kids, rather than being physically present while mentally worrying constantly about keeping us afloat or getting other stuff done, such as The Proposal. I guess that would be a form of practicing mindfulness.

Ever wonder, though, why it’s so hard to remember to be mindful? Perhaps it’s because one’s mind is...full? In those full-brain and heavy-heart moments (big and small), I know Sugar will help. Mostly, she’ll remind me that it’s on me to make things right, to feed the good wolf, to see clearly and be present and not take things personally. Basically, you know, to be mindful. But she says it in a way that I can really hear, my dear, dear Sugar does.

Well, my friends, I am heading out now for the last-day/half-day* pickup rounds. Here’s wishing you plenty of whatever Sugar-esque entity feeds your soul this season and beyond. Summer...starts...NOW!

Love,

Full Spectrum Mama

* Wee tad of a rip-off there?

EXCUSES, EXCUSES…

Dear Readers,

The Full Spectrums are moving. Given that we are a gang with a lot of feelings, a lot of stuff (where did it all come from????), and sensory and behavioral differences, there is PLENTY of “writing material” here. However, time to actually write is nonexistent, not to mention my pronounced lack of the necessary mental and physical energy for anything beyond the basics of mothering, my work, and moving.

Please bear with me while I post much, much less than I would like…

In just over a week, I will be publishing a Sensory Blog Hope post about face-blindness.

After that, as soon as possible, I will be writing my next Third Anniversary Post, “Choosing Your Battles.”

Love,

Full Spectrum Mama

RIDDIKULUS!

G’s latest invention is a Lego Boggart game. Boggarts are a type of magical beast in the Harry Potter books known for taking the shape of your greatest fear. In The Prisoner of Azkaban, the students learn how to conquer boggarts by facing one who is kept temporarily in a wardrobe in the teachers’ lounge.

G attached a spinning tube to a play board. You spin the spinner around and something appears -- “like the boggart coming out of the wardrobe.”  G spun the “wardrobe” to reveal a headless Lego guy mounted on the back with a scrap of paper that said “[G]” on it.

“That’s your greatest fear, Mom: a headless or dead [G].”

GULP. Yes.

I love my children equally. But Z will trounce anyone or anything that gets in her way, while G has a more tender, awkward way in the world. So I don’t really worry about Z’s survival. Whereas G could trip over his own foot and fall off a cliff, and he’d be yelling “Love you, Mama!” as he fell, just for example, not that I am actually thinking of this scenario.

Then another spin: “This one is [Z’s] greatest fear: a dead Mama.”

Um, whoah. The label now reads “Mom.”

Right again! It’s becoming clear that G is a LOT more perceptive than he lets on, or than he – not being a verbal processor -- can express.

Z’s greatest fear may well be losing me, as she is a most devoted daughter despite some of the challenges of our relationship. I am struck lately by how little she resents me, in spite of my (attachment-disorder-dictated) extraordinarily strict boundaries and constant monitoring. I am all over her like white on rice (I guess in our household I should say brown on rice) to make sure she feels safe, stays within important boundaries, and does right. And – unlike many strangers and even loved ones who look askance at therapeutic parenting -- mini-girlfriend just gets it. She knows her Mama does this all for her. She knows she needs it, maybe even better than I do. And she loves and respects me above all.

“And here’s mine, Mom…Mom?”

I’m still speechless.

“Here, look!”

I dare to peek: his scrap reads, “pokemon never existed.”

                                                     Figure I – “pokemon never existed.”

“And don’t worry, Mom. I made the spell to fix everything!” says G. Then, as he learned to from the book, he declares, “Riddikulus!”

Another turn, and the clasp on the side of the tube holds a scrap with a funny face.

                                                                 Figure II – “Riddikulus!”

Harry and his friends know the trick with your greatest fears is to make them funny.

Apparently, so does my son.

Love,

Full Spectrum Mama