GAMING FOR PARENTS

Dear Persons,

Let's play a game, and in that game the rule is, everything I say is annoying and wrong. 

This game is called…The Teenager Game. 

Here’s a brief round from just the other morning:

FSAM* [cheerful and encouraging]: G,  if you have to stay the whole period for your test but are done,  why not use that time as a chance to bring up your grades? You know, work longer on the test after giving your brain a little break. Or ask your teacher what other work you can do! 

G [ultra-sullen/condescending]:…Do you have to talk to me? 

FSAM [caring, thoughtful, respectful]: Z, The writing program ends in April, right? How is your writing going?  

Z [side eye]: We will send it in in April. 

FSAM [confused and/or correct]: Well…doesn’t that mean it’s over?

Z: [shrug].

The Teenager Game is pretty exhausting. Like any parent with teens, I often wonder how to get through to them. Almost everything I say to them is, quite typically, met with disgust and dismissal. 

By the way, how did they get this “grownup,” anyway? 

When I was pregnant and had begun the long process of worry that is a big part of parenthood, an experienced mother of three grown boys told me something that really helped me through my first few years as a parent: “The odds are with them.” 

It was such a simple phrase, but it truly carried me through some rough moments. One kid would get croup and I’d be up at 3am holding him or her, listening to what sounded like a death rattle in a steamy bathroom and I’d be scared out of my wits. Then  I’d think, “Jill told me the odds are with them! How many babies have croup right now? Lots! S/he’s gonna live!” With each wee bit of independence or separation, too, I would start to spiral. Then I would remember: “The odds are with them!” It was such a comfort. 

But there’s a catch now. The things is, with autistic kids — my son, G, is on the spectrum — the odds aren't with them. Without getting into the precise (very daunting) statistics, people on the spectrum are significantly less likely to achieve all sorts of things that typical people mostly take for granted, like independence, employment, academic accomplishments, romantic relationships, parenthood, health. And kids with behavioral and emotional issues, like those my daughter has struggled with due to her attachment disorder, do so much better in the long term when those issues are addressed in their younger years. 

So in this “game” of teenage disaffection, the stakes feel higher in the Full Spectrum household, as they would in any household with differences and disabilities. I have to get through to my teens, since the things most people take for granted will eventually happen for their kids - independence, mental health - are not a given. I have to tread a fine line between accepting that my children are beastly teens, while remaining alert for any signs of impending disastrophes. At the same time, I have to not have a nervous breakdown?! 

So how do we improve the odds? Ideally, while not having nervous breakdowns, not breaking the kids, without the kids breaking themselves, and while presuming competence for all, we will also be able to encourage them and help them flourish as the unique, irreplaceable, precious beings they are. 

And this isn't a zero-sum game. The more our loved ones with differences are uplifted, the more they succeed, the more progress, acceptance, and awareness for all, right? After all, that’s the whole point of this here blog. 

Stay tuned/bear with me as I approach this transition phase, along with my Meeting Friend, and a few other loving yet terrified parents of teens. I will share input from parents and guardians and individuals who have been there as well. 

Love,

Full Spectrum Mama

* Full Spectrum ANNOYING Mama

P.S. FSM has received some good press and stuff lately, and readership continues to climb (at 175,000+ as I write!). I was interviewed, about, among other things, activism, advocacy, and parenting a neurodiverse child as a neurodiverse parent here, at this great site that recommends asking real live autistic people about how they feel and what they want in their lives. Also, I am so honored and excited to have been named a "Top Autism Blog for 2018" - Oooh, I just have to share: "Full Spectrum Mama writes in a refreshingly honest style with beautiful rainbow illustrations that accompany her posts. It’s one of the most unique autism blogs on our list."

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!

An InLinkz Link-up

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!

An InLinkz Link-up

WHAT IS PROGRESS?

I read a lot (a LOT) of posts – whether in adoption communities or neurodiverse ones - about how people’s children are “making progress.” Progress with sensory differences is one major theme, and uplifting, inspirational posts can be found in abundance. I find a lot of news around “progress” with a range of challenges in autism as well.  Since I tend to only follow writers who start with the basic assumption of accepting their diverse selves (and the diversity of their children) unconditionally, as they are, I typically enjoy such posts, and think they give us all hope.

I've read and learned a lotlotlot about adoption and attachment disorders, too; and I'm grateful to have done so since it felt like we were desperate and failing as a family until we gained some context and strategies for my daughter's behaviors. For Z, who was adopted and has struggled with an attachment disorder, progress means healing - gradually - enough to let go of attachment disordered feelings (distrust, panic), and the habits and actions that come with those feelings. Progress, in Z's part of the Full Spectrum, is a unilaterally good and necessary thing. 

I think a lot (a LOT LOT) about how much I do for my son, who is on the autism spectrum and has motor and executive function challenges, compounded by raging teen hormone fog (that’s a medical term). I wonder how much my “help” is actually enabling him -- in a codependent, non-helpful way -- to not learn how to do things, take responsibilities, etc. I try to remember that, but for safety concerns, it’s generally best for him to learn to take responsibility for himself and do his own stuff (dishes, cleaning, “organizing”...) even though he may actually make a much bigger mess doing so...

He’ll never learn to live even partially on his own if I keep waiting on him hand and foot – something I do basically because it’s easier for me. As G takes on more day-to-day tasks, that is PROGRESS – and it’s a good thing.

He’s also made huge strides socially, verbally, in athletics...His momentum in all these areas is a testament to his hard work and efforts.

As a neurodiverse adult, however, I sometimes question a narrow view of the necessity and function of progress. I also I see myself making so much less “progress” than my son does…

Big breath.

I wonder if, for me, it’s at this point more about acceptance, whereas for him he’s still growing so, so much.  While his presence during this period of great growth certainly benefits those around him in increased awareness and good company, it’s primarily about him. Teaching people is not his job, being his best G is his job.

My job, as his mother, is to help him become the most content, competent person he can be, while respecting his unique wonderfulness. I would also like him to “progress” in self-advocacy: both in learning what he needs to succeed socially, academically, and so forth, and in being able to express those needs in order to grow into who he wants to be. In any case, much as he has never, ever been interested in even the slightest efforts at “passing,” he wins most people over with his exuberance and huge heart and humor.

Me, I’m still growing inside to some extent, but my PROGRESS is really more about learning about neurodiversity and spreading that awareness, as well as advocacy in general -- and for my son and me.

In images, I think it might go something like so:

Figure I – Progress for G and Z

Figure II – Progress for Mama

Like so many phenomena, progress may be viewed as a Spectrum: for my daughter, it's a straightforward positive; for my son and me, it's more complicated. We need to make sure that our attempts at progress are in line with our inclusive values, rather than succumbing to the biased standards of a neurotypically-inclined mainstream. Ideally, my efforts at public advocacy, along with those of others in this blog hop and beyond, expand the possibilities for defining -- and celebrating  -- our own progress, goals, and selves.

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