A WINTER PRAYER

Hate cannot drive out hate, only love can do that. 

Martin Luther King Jr. (from Strength to Love)

Dear Persons,

It’s easy to grow bitter. Sure, if you have a child with special needs, losing faith in this world is often tempting; but in this divisive political climate being human is an indicator for general angst. So yeah, we need help. Here is my Winter Prayer to the Universe, the One Song we all share: 

Dear Universe,

As the days grow colder and shorter,  may the extra darkness offer rich soil for growth. May the falling temperatures allow us to, um, appreciate the warmth betterer? 

May there be less wintry mix precipitation and black ice and more coziness and sparkle. 

How about no black ice.

May those entrusted with our children (Betsy DeVos, I'm talking to you!!!! [Oops, did I write that out loud?]) actually have their best interests at heart. 

Likewise, may those entrusted with our only home, Mother Earth, do the same, dear Universe. 

May we - in the waking hours we can muster this season - find the strength, energy, and time to be there for each other, and to find the resources we need to advocate for and nurture our differently-abled children, selves, family, and loved ones. 

May we learn to ask for help when we need it. 

Before we judge, may we consider the possibility of unseen struggles, mental health issues, “invisible disabilities”…

May we learn not to take things personally, even as we refuse to countenance injustice. 

Can those “All Lives Matter” people make a Black friend, please? 

Might we send a contingent of willing trans persons as ambassadors of queerhumanness to all places showing evidence of small-mindedness around gender? 

Let’s get some drag queens in there, too. They could bring cupcakes from Scott Cakes! And warm coats!

Please sprinkle in some other people with differences that differ from the “norm” in these places (in whatever ways: religion, ethnicity, citizenship status, ability, sexual orientation…), bearing, perhaps, free kids’ books about diversity and inclusion, in order for peoples’ definitions of people to expand. 

Actually, can we have all of these individuals bring their families — whether of origin and/or orientation — as part of their delegations? Can we? And then partner each family with a local family, have them plan and cook a meal together,  and give them a discussion agenda that includes favorite funny movies, animal heroism stories, and, I dunno, high and low life moments? 

Thanks! Because it seems to me that when people see people as PEOPLE it becomes nigh impossible to hate. 

And, just a thought, can we get some people on the spectrum on this whole tax reform thing? Because some of us are pretty good with numbers and our “literal,” “black and white thinking” around, you know, the math aspect might be a strength for the future of U.S. civilization in this particular context. Do you want to know whether a particular change to the tax code will benefit the economically disadvantaged or the middle class? We can actually tell you. 

Come to think of it, may there be progress, however incremental, in people being fairly paid.

Also? The men in charge right now…could they be immersed in a crash course in menstruation, harassment, gender discrimination, childbirth, and motherhood? Also also, working and single motherhood? Thanks. REALLY - thanks. 

Bonus: In fighting injustice and working to empower others, may we never degrade or forget the humanity of all concerned. (That’s a hard one sometimes - healthy anger fuels change while destructive, vengeful rage destroys lives.)

See, because either we are engaging or we are withering. Bitter. And you know what? Bitter people are often cruel. I know this all too well too.

May we hold our loved ones close, knowing that life can be all too fleeting. May we make every day count, even the *&^$ ones. 

Dear Universe, we all cry the same salt tears. May we also have the mental and emotional space to see the beauty, joy, courage, and kindness that coexist with the hard stuff. 

May we retain our hope and faith. May we regain our hope and faith. 

May we find strength through love. 

Love,

Full Spectrum Mama

P.S. What are your prayers, dear reader? Feel free to share them in the comments below, or email me at jineffable@gmail.com.

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

HEY, YOU!

For Ozzie

Hey, you - you, who just got a label after years of searching for answers about yourself.

Hey, you - whose child or loved one just got a diagnosis.

Hey, you - who just gave birth to a child with a difference and/or disability.

Hey, you - who suddenly feel like it’s all too much, who don’t have it in you to cheerfully be different today. 

Are you spiraling? Of course you are. Do you feel like your life is being eclipsed? I’ll bet you do. 

Can you breathe? Just stop, take a moment - one moment! - and breathe. Between you and me and the fencepost, let’s face it: even one moment can be a lot to find what with all this diagnosis/labeling/disability/difference navigation business! But I am here to tell you that it is possible…Just the one. Try just that one moment of pausing to breathe.

(I was a Yoga teacher for a long time and one thing I learned was to teach only what you yourself practice. All that self-care stuff sounds great to me but…really? Who has the time and/or money? I know, though, that if I can find one moment to breathe you can too!)

Here’s the thing: there’s nothing wrong with you/your child/your loved one. It’s no one’s “fault.” Yes, the world wasn’t really designed for some of us - and there IS something wrong with people who discriminate, IMHO. But you (your child/loved one)? Perfectly imperfect just as you/he/she/they are. 

Sure, in time you/your child/loved one may benefit from certain interventions - whether medical (surgery, medication…), therapeutic (physical, psychiatric…), educational (IEP, tutoring…), etc. - but so much of that is designed to help us “fit in” to the world as it is, not necessarily as we are. No judgment!  Every individual and family must make their own choices! However, please never feel that these things “fix” you/your child/loved one; instead, they help us to function better in a certain, particular type of context. 

Here’s an example: students with ADHD can thrive without any medication or behavioral finagling in a variety of learning environments, many nature-based, but typically not including a standard classroom environment. Yet the standard classroom environment is what they usually encounter, which may lead to any number of challenges, including issues with self-esteem…

One of my best college friends and I were a tiny bit tipsy-ish one night and thought it would be really funny to call out to passersby with the hilarious words, “Hey, you with the internal organs!”  (Good come on, right?) 

This particular friend has had her challenges in her parenting journey, I can assure you, but her humor and accepting attitude have served her well.

Because hey, by the way, even if you DON’T have internal organs, those of us who have suffered for our differences and/or those of our loved ones tend to know and live true inclusion and thus we respect, accept, and honor you with no judgment regarding your internal organ status.

See, we’re all in this together - something I think those of us who’ve had to fight for our own inclusion or that of our loved ones realize early on. The fact that not all people see things this way is sad both for us and for those who don’t see this truth. 

So hey, you, you reading this post - either with your eyes or another organ, through being read to, or an assistive device - you are stronger than you know. And you are not alone. Wait till you meet some of these characters who get it, who’ve been there. 

Deep breath in, deep breath out...Welcome!

Love,

Full Spectrum Mama

P.S. The Bloggers in this Blog Hop might be a good place to start: 

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

THE MATURE HARD TIMES ALTERNATOR

I recently became aware of an extension to an earlier hypothesis around the distribution and amelioration of Hard Times. This revelation came about during a moment where it was all I could do to keep my sanity because waaaaaaaaaaay too much stuff was going down. In the presence of my children, I had a major – and, apparently, noticeable --  lapse of my usual Momveneer* of steady competence and cheer – and Guess What!

The kids could actually handle it.

G, usually happily – to his mother, scarily - devoid of Executive Function and Mundane Practical Concerns/Attention, became suddenly attuned to things he’d never seemed to even register before: “Mom, don’t you need to put your turn signal on here?” he asked, to my utter astonishment (filtered through a murky haze of despair). “You seem like you are not focusing,” he told me a few minutes later. “Do you need to take a break?”

Meanwhile Z, who is not known for being forthcoming about her intentions or actions, became crystal clear, meticulous and solicitous: “May I get a glass of water?” (My reaction, percolated via a thick fog of dejection: HUH???) “May I get you a glass of water too?” “How are you doing, Mama?”

It gradually dawned on me that what I was experiencing was a manifestation of The MATURE Hard Times Alternator. I had been well aware of the machinations of The Hard Times Alternator (THTA) in my children, but did not know that it was also potentially a major player in any Full family dynamic. Adults are usually a peripheral factor in the HTA equation. I hadn’t realized grownups sometimes – however momentarily - merit this sort of ethereal (yet, when necessary, child-incorporating) intervention!

Figure I – The Mature Hard Times Alternator in Action, utilizing the

    “Poorly Behaved” Model of  Poor Behavior

This flare-up of The Mature Hard Times Alternator is not something I would want to incur too often. I like to let my kids be kids, and I think some of their response was out of anxiety. Plus, that sort of disastrophe pile-up is not something I’d like to endure with any frequency. It was nonetheless liberating and reassuring in the way it revealed the junior Full Spectrums’ potential capabilities -- and to see them step up when called for by TMHTA.

This holiday season, may your HTA in be in good working order; and may your MHTA be at the ready…should that by any chance become necessary.

Love,

Full Spectrum Mama

*Veneer! I said veneer!

CONFERENCE II: FOURS AND TWOS

Whereas Z’s report card consisted almost entirely of threes (“meets grade level expectations”), G’s report card was pretty evenly split between twos (“making progress toward meeting grade level expectations”) and fours (“exceeds grade level expectations”).

Always with the Full Spectrum, eh?

But this was a familiar report card: G is excelling in certain areas, and struggling in others.  Although my report cards tended more toward fours because of my strengths in executive function, I knew G was doing his best and I celebrated the quantified results of that effort.

G’s conference wasn’t spent talking about ways to get him to work harder. His teacher and I both know he is working his fanny off. Even for those twos, he is working. His conference was spent on other concerns. Conferring about how he’s mostly with adults on the playground – and how he says, “Thank you for hanging out with me” to them. How he sits with his teachers on the bus – and thanks them for letting him sit next to them. How, during winter sports, he, again, stayed back with the grownups and told them, always, “Thank you for playing with me.” [I’m thinking, please, no, I DO NOT WANT TO HEAR THIS YOU ARE KILLING ME! I thought he was playing with other kids! He said he was!]  That combination of pathetic and clueless and kind and grateful and well-mannered is also very familiar.….

What do you say to your child about this sort of news? “G, you need to be less thankful and also not go near adults?” Clearly, he’s making these choices for reasons that make sense to him. For one thing, according to his teacher the preteen girl posse he’d been rolling with since the start of school was still somewhat friendly and protective, but now they were more teens than pre- -- with the attendant changes and concerns that come with that shift. For another thing: sixth grade/sixth graders. Blech – who can understand it/them?

Then his teacher explained how he has a hard time working with groups: first, he gets very upset if people don’t do exactly what they are assigned to do in the group or what they say they are going to do; second, others try to do his work for him to “help” him because of his slow processing, which is insulting. Group work is big these days – so it’s a big issue for kids for whom it’s not a natural fit.

Feeling a wave of despair at this point, I wondered if this was all just too much for G, and if he would be better off in a different setting, perhaps a specialized classroom. His teacher replied – quite vehemently – that he would not. She admitted that he does struggle in the mainstream classroom setting, but that she is certain that it’s the best environment for him, just as I have always believed.

There’s a child in G’s class who is more obviously “autistic” than G. This child receives a lot of attention and is doted on by many of the girls in the class. I’ve already had to explain to G that the reason all the girls “like” this other boy is because they want to help him and take care of him. I asked him if he wants people to “feel sorry for him” in that way and he replied with a very strong “No!” In his teacher’s words, G “is not quite different enough to be a mascot and don’t want him to be!” Yet he’s still “different” in ways that set him apart, for example: “He still hugs me – sixth graders do NOT hug teachers!” Well, his teacher is pretty durn wonderful…

Again, what does one say in this situation, as a parent? “No hugging!”????

G is trying to integrate sixth grade social rules…at his own pace! For one thing, as I mentioned at the end of the conference, he studiously and elaborately avoids me at All School Sings. Except – one time, when we were singing “You are my Sunshine,” he looked over at me (because he knows he is my sunshine) and I was **sobbing** and that was the end of even looking at Mom during such events.  

And rightly so! I am so embarrassing. No, I am. Thank you, dear reader, for reading this, for playing with me, for sitting with us on the Full Spectrum bus.

Love,

Full Spectrum Mama