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

FOURTH ANNIVERSARY LISTS III: CHOOSING YOUR BATTLES

Dear Persons,

We only have so much energy in life. In my last post, THE FULL BUCKET, I wrote about what happens when that energy is all used up. Choosing your battles is one way to ensure you avoid getting so drained that you are no longer able to function well...

This year, I will give two simple examples from the Full Spectrums: Armpits versus Teeth, and Grades versus Manners.

Choosing your battles doesn’t mean you abdicate any discussion of or efforts toward other areas of life – it just means you reserve your mightiest strength for those areas that seem most deeply important for yourself and/or your loved ones.

Here are two choices I’ve made for us:

            1. ARMPITS VERSUS TEETH

Middle schoolers stink. Even with deodorant. Especially if you start with the crunchy granola natural stuff. We are on the Old Spice Ultra-Chem Turbo Level by this point but it only gets applied, shall we say, intermittently. You see, my G has very, very little interest in hygiene. So if I want to be sure he is doing something hygiene-related, I have to supervise.

I stopped brushing teeth with G about a year ago, trusting that he would take responsibility for this important matter. We found out the hard way last fall – when he had to go under general anesthesia to have a tooth pulled --  that he was not ready to brush his teeth alone. Now we brush our teeth together again, with him leading. Ten brushes in each spot. This is non-negotiable.

Sure, I ask G to put on deodorant and ask him if he has done so...but with my limited time and energy, sometimes deodorant doesn’t happen. Tooth brushing does.

Always.

            2. GRADES VERSUS MANNERS

How many talks do your children really want to listen to? Z is one of those people who is able to excel at anything she cares to excel in...So her consistently getting all threes (“meets grade level expectations”) on her report card is...unexpected. Sure, I’ve talked with her about this – quite a bit.

But I reserve my most heated, heartfelt talks for the area of what I call “real manners” (i.e. the manners that are about kindness and respect, not the right fork). Because Z has grappled with an attachment disorder since she came home, she’s always had issues with feeling she doesn’t have enough, and with control. These factors come into play frequently when it comes to sharing and treating others with basic respect.

I know Z is a tough cookie who will always make her way successfully in the world, so I don’t lecture too, too much on grades and hard work. But for her to feel good inside -- and for others to feel comfortable around her -- she needs to learn to act with “real manners” in heart and mind. This, like tooth brushing, is non-negotiable, so I save my heartiest lectures for this subject.

Because I am not at her all the time about certain other stuff (grades, etc.), we are both able to be more fully present in this important, healing arena.

We are all works in progress. It matters that we take a little time to see where our efforts can be most effective – and to ponder what we most value.  This can vary, of course -- the key is to take a step back and determine which battle you will choose.

The next and final anniversary post will be the most popular, putrid  post of the year: THE COMPLAINT DEPARTMENT!!! We at FSM are a leetle behind this year on account of because life, so there’s still time to get your COMPLAINTS in!

Thanks and love,

Full Spectrum Mama

KID KOAN II

How do you get your child to successfully complete their homework with minimum damage to family life?

To ponder:

On the Mystery of Not-Knowing:

What do you do when your bright child can understand and is assigned advanced math and science but still doesn’t spell, punctuate, space words properly, write on lines, focus, care, keep track of work, or have any detectible executive function OR discipline? When, in addition, s/he gets increasingly angry or tearful when you merely try to get him/her to do homework?

To ponder:

On the Virtue of “Helping:”

My friend over at Runaway Mama cracked me up with this one: The Homework Hokey Pokey:

I read, relating, laughing, crying, and commented as follows:

Homework right now, it's fair to say, is almost ruining my relationship with my son. That dance [her “homework hokey pokey”] is entirely too familiar. The balance is so much harder and feels more crucial when your child has learning and neurological differences...He'd be failing without oversight (MAJOR oversight) and yet is highly intelligent. I try to make sure he DOES and HANDS IN his homework, without ever doing it FOR HIM. If that makes sense...That alone is practically a full time job...

Yuck.

To ponder:

On Validation, as a Sort of Loving-Kindness (Metta) Meditation, from the Asperger Experts (a duo of young gentlemen on the spectrum who tell it like it is {from their points of view} and advise families):

What we want is for our support systems to step in and actually support us by validating our struggles... INSTEAD of always trying to "fix" the situation.

How do you validate someone?

You listen to them.

You hear them.

You take them where they're at instead of asking them to be somewhere or something they're not.

You stop what you're doing and become available for them.

This does not mean offering advice. This means simply listening. 

Period. The end.

I LOOOVE me some Asperger Experts. But this homework situation unquestionably needs “fixing.” When they advise parents – AKA “support systems” -- to listen deeply, to validate, and we do so...Do we then get to do the “homework hokey pokey”? I will keep listening, but how will that get my son to begin to take some initiative with his homework and not fail eighth grade? Surely he is validated by now; in fact, I sometimes think an overabundance of self-esteem is part of the problem.

To ponder:

On the Universal Nature of Universal Design:

Is it possible that Universal Design is not as universal as it is intended to be? This question comes up in my own teaching: which “malfunctions” in the homework department stem from learning differences per se, which are a result of executive function challenges, and which arise from sheer triflingness? And how on earth do we distinguish between these, as students, as parents, as teachers????

To ponder:

On the Practice of Email:

When you are emailing about homework with your son’s case manager [Thank you, C, you are an angel!], at length, more than once, on a Saturday night, is it too much?

Deep, Responsive Thought:

Yes.

Was that scary enough for Halloween? If you’d prefer, you can read about and even justify holiday candy consumption here.

Love,

Full Spectrum Mama

SPD, ASD, ABC, DEFD....

Please note: this post is part of the Sensory Blog Hop, which is sponsored by the fabulous Jenny (what a great name!) over at The Sensory Spectrum and The Jenny Evolution. I accepted the invitation to participate as a way to get more exposure for FSM, but it has become a wonderful, inclusive, helpful community for all us SPD Blog Hoppers. Please do click on the links below for fresh and inspiring perspectives and meet some very worthwhile new pals.

When my little fella started seventh grade this fall, I very nearly had a nervous breakdown. 

However, it seems to be going very well..socially...which is...a surprise.

And then there are his grades. Which are terrible.

You see, his ASD and SPD are a big part of his DEFD and this causes a decline in his ABCs.

Get it? No? Please allow me to break it down:

ASD officially stands for Autism Spectrum Disorder. I don’t like “Disorder,” so I end the phrase with Difference. G is on the Autism Spectrum. He’s autistic in the way that used to be officially called Asperger’s.

Among other things, this means G has challenges in the social realm.

SPD officially stands for Sensory Processing Disorder. I do the same here, calling it Sensory Processing Differences. G has sensory processing differences, as most people on the spectrum do, as many people in his biological family – including me – do…

Among other things, this means that G is extraordinarily neurologically and sensorially sensitive in certain ways, while in other ways he may seem “undersensitive.” Put another way, the systems of people with SPD tend to pay more or less attention to feelings and sensory input than is “normal.”

Each person with SPD is different. (Sometimes when one area seems “undersensitive” it is because an individual with SPD is already overwhelmed from “oversensitivity” in another area!)

DEFD stands for Determinants of Executive Function and Dysfunction. Executive Function – the ability to process and enact a series of thoughts and actions in an effective way -  has never been a strong point for G. This fall, his already low levels of EF took a major dive.

So did his grades – his ABCs, if you will.

The way I see it, these acronyms and what they represent in my G (and others) are all intimately connected: Each person has a given amount of energy. When it takes More energy just to function socially, resources available for other aspects diminish.

I figure there’s only so much G to go around, and, currently, it’s almost entirely being utilized in this area of Social Skills -- which has been a lifelong challenge for him.

                       Figure I – Allocation of Energy Pie Chart                

He's enjoying seventh grade (?!)  – and “extremely popular.” I should note that from what I can see and from what G tells me (limited!) this all seems to be happening on G’s terms, that is to say he is popular and liked For Himself, the quirky and brave kid that he is [sniff!].  Given this turn of events, I pooh-pooh EF and the desire for As (…and Bs…).

For now.

Love,

Full Spectrum Mama

An InLinkz Link-up

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

CONFERENCE I: THREES

If you’ve been following this blog at ALL, you know that Z is a superhero-genius, with a conservatively-estimated IQ of 923. All parents are soooo objective, but most especially parents of children who were adopted, because that latter event basically frees us up to brag in an unfettered way by virtue of not sharing genetics. Naturally, Z being the next Curie/Vos Savant/Sandberg, I was expecting a pre-tty fabulous report card this spring.

Alas.

She received threes, meaning “Meets grade level expectations,” across the board. Several pages of threes. Out of  **50** possible grades, only three were not threes! She got a two, or “making progress toward meeting grade level expectations,” in the area of “demonstrates self control.” The ONLY fours she received were both on reading speed, during timed tests.

Z’s teacher is one of the best in the state, so I knew these grades were more related to Z than a failing on her teacher’s part. Still, I hoped her teacher could help with ideas about improving both her work and her grades.

During our parent-teacher conference, Z’s very kind, very experienced, very gifted teacher admitted she’s not at all sure how to get her to do better. She told me that Z finishes everything ahead of all the other students. Then, rather than polishing her work or doing a little extra, she socializes, which, depending on who is next to her, can often be a problem for that neighboring student. She has been offered the opportunity to work on an optional special project of her own, like other gifted students in her class – something for which her teacher gives up her own limited free time --  but has opted not to do so. Rather than focusing on learning, Z’s focus is often on “side conversations.” Because she is quick, she manages to “meet grade level expectations” – but only in a perfunctory fashion.

It’s the same thing with her homework. She has reading homework every day for twenty minutes? She reads for twenty minutes. She is asked to write a sentence using a vocabulary word? She writes the shortest sentence possible. Not working hard feels so alien to me, the quintessential OVER-tryer, despite having been schooled on this subject by many brilliant friends who were underachievers in school…Something about “If everything is easy for you, why ever make an effort”??

There is also the possibility that I am/we are putting too much pressure on her, that we are having overly high expectations. Perhaps she’s not quite as exceptionally smart as I have always thought. Her teacher and I were obviously on the same page in feeling that Z is not even close to living up to her academic potential, but maybe we were basing our assessment of Z’s potential academic intelligence on her apparently immense emotional intelligence. Or maybe her approach to schoolwork is a survival thing, sort of a “do what you need to do to get by” scenario? Nonetheless, it’s evident that Z needs to up her game a bit; and that we adults need to somehow inculcate an attitude of pleasurable effort to replace the getting-away-with-the-minimum stance she’s exhibited thus far.

The parent-teacher conference was a few weeks ago. The other day, Z and I had mama-daughter time while G was in drama club and as we walked I lectured her extensively (yes! I am fun!) on doing her best, taking initiative, etc. After talking at her for some time, I realized what I was doing and asked her why she is only doing the minimum. She finally confessed she “just want[s] to get it finished!” She is proud to finish before the others in her class, and simply not will to do more, unless it is clearly required.

I asked her if she thinks she’s as smart as other kids in her class, and she said “smarter.” I explained to her that the kids who are really smart are the ones who are learning as much as they possibly can, adding that you can be the smartest person on the planet but if you don’t work hard no one will ever know – and you’ll accomplish little.

I turned at this point to a beloved longtime educator friend, who also happens to be the Dad of many sons, to see if he had any suggestions. He offered the idea of giving Z extra projects. In his family, African history was the subject of choice. I decided to have Z study Chinese history. I had her get all her Chinese history and culture books together. I asked her to begin reading a chapter of the top book in the pile that afternoon. Afterwards, she would be expected to write a report.

I was doing the dishes -- with dinner on the stove – when, a few minutes later, she called out: “Hey, Mom…does this count as doing my reading homework?”

“Sure!” Scrub, scrub scrub...wait a minute! “…NO!!!! Come on, [Z], that’s my WHOLE POINT!”

I don’t have enough brain-space for this malarkey. Available doing-dishes brain-space is utilized pondering the truly important things, such as: do we actually have more nose hair as we get older? If so, is that why boogers seem to hang down in there more? And if both of these are true, is that FAIR? (My vote? No.)

But back to the matter at hand: after this interaction I logically must conclude that Z is a genius after all.

Next: CONFERENCE II: FOURS AND TWOS

Love,

Full Spectrum Mama