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

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

WINTER LIGHT: ALL IS CALM, ALL IS BRIGHT

As the days lengthen, though many of us are in the deepest part of winter, may we all seek to spread a Full Spectrum of acceptance.

May we celebrate and embrace our differences, advocate for ourselves and others, and live our lives as superheroes - vanquishing intolerance, ignorance, oppression...any force or person or group who tries to keep their fellow beings down or hinders their shine!

May we glow with engaged, empathetic love.

May we wisely understand that in light, ALL colors are contained – just as all shapes, sizes, abilities, neurologies, sexualities, ethnicities...make up the whole of our world.  

Oh, and may we each and every one be blessed with a heaping dose of perspective.

Wishing you warmth and health in the New Year, with much love,

Full Spectrum Mama

IS IT TOUCHING?

Dear persons,

I just finished reading Little Women to G and Z. That book is way longer than I remembered - and – seriously?! - emotionally grueling. As had happened throughout Little Women, but on an even more snot-filled, ugly-crying level, I began to lose it as I tried to read those last pages aloud. The closing bit, where Marmee says, even after all the poverty and hardship, and even though her daughter Beth died (sorry if I am giving anything away here), “Oh, my girls, however long you may live, I can never wish you a greater happiness than this!” And she says this simply because they are all together...I can’t even type it without sobbing.

As I read to her, as she often does, Z observed my emotional reaction and asked, “Mom, is it touching?”

Honey, to me, just about EVERYTHING is touching.

You can just look at my red, blotchy, slimy face – or your brother’s: Yes. It’s touching. When a bird lets another bird go ahead of it at the birdfeeder? Touching. Something on the radio about helping people? We will probably at a minimum get misty-eyed. When there’s a video of a baby seal? Touching. Human interest piece in People magazine at the dentist? All those interspecies friendship books? Elderly people holding hands? Yes. Anything to do with animals, life, death, romance, family, and so forth is fair game for being touching.

At the same time, on my own, I’ve been dipping into The Highly Sensitive Person, in which I was *stunned* to read that 42% of people describe themselves as “not sensitive at all.” And here I’d always thought everybody was just better at managing their feelings and reactions than I was – because there was something wrong with me. Something weak, or ignorant, or lame; a lack in me which rendered me less adept than the majority of people...People who didn’t seem to cry or laugh quite as readily, people for whom interacting with others, for example, seemed to be much more clear cut, less laden with strong, overwhelming feelings, and MUCH less daunting...

I’d assumed everybody was “like me” and that it was my “fault” for being unable to “master” my feelings and reactions. Now I see another healing, liberating spectrum! I wouldn’t quite put my Z in the “not sensitive at all” category, but on a sensitivity spectrum we clearly occupy different spaces. And this holds true for her sensory processing as well: she’s impervious to hunger, noise, lack of sleep, etc. in a way that’s inconceivable to the SPD-ers* in the family.

In Figure I, I’ve charted approximations of our family sensitivity levels relative to one another (P=Pardner, Z=my daughter, G=my son, F=me). This is obviously simplifying and generalizing, but it also clearly indicates a Full Spectrum of sensitivities just within one family.

Figure I – Touching Chart: From Squishing-Touching to Not Touching

Knowing that others have different sorts and levels of sensitivity, doesn’t mean we ourselves necessarily should attempt to change our own feelings and reactions – even if we are able (?). But that knowledge opens our eyes to possibilities of different perspectives - and perspective, as I tell my philosophy students, is the key to a lot. It’s marvelous to see how we all shine in different ways. It’s intriguing for me to imagine the experience of not sobbing at the drop of a hat; for Z, learning about things that are “touching” is inspiring her to find her own tender spots.

Guess the Full Spectrums will keep learning from each other.

We just started By the Shores of Silver Lake. You know, the Laura Ingalls Wilder where Mary goes blind and Jack, their loyal, loving dog dies? It’s going to be you-know-what.

Love,

Full Spectrum Mama

* SPD-ers: people with sensory processing differences

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

POSITIVE PARENTING: FUN!

Just a little example of PP from the Full Spectrums:

Pardner used to be a dawg. Not literally, but – let’s just say he spent his twenties, most of his thirties (there was that...brief first marriage), his forties...even the first part of his fifties, as a single, hunky, zest-for-life-filled, man-about-town chef who had a great appreciation for female beauty of all sorts.

And I do mean all.

When we first started dating, I asked him this highly original question: “What is the most important quality you value in a woman?”

“Fun,” was his simple answer.

Well, I felt very superior when he said that. How trite, I thought. How superficial! And how hard can it be to have fun with no kids, a thriving/rewarding/creative business, excellent health, and that special freedom of the non-married to extricate oneself from any less-fun relationship? A person who thinks fun is the most important thing must be pretty durn trifling, no?

Then I got to thinking about it. Here I was, newly-divorced and unemployed as yet, with two young high-needs kids (neither had labels yet, but the high-needs part was Not Subtle). I was shattered, really, at the time. And yet there he was...into me in a big and, to him, very new way.

Maybe he meant something different by “fun” than I thought.

As we got to know each other, I began to see how fun actually encompasses everything I truly value in life. It dawned on me that a most precious sort of fun was our finding a way to laugh together while courting despite my being in precarious mental, physical and fiscal health.

Fun isn’t just everything always being easy, lighthearted, and effortlessly sparkly all the time; sometimes fun is finding the sparkle in the (heavyhearted, hard, crusty, messy) mud, my friends. It’s choosing to giggle when you get to that giggle/sob crossroad (or at least to gigglesob). As well, fun is exercising our innate capacity to recognize and appreciate that sparkle, that giggle...

Now, we Full Spectrums hold FUN as our High and Sacred Family Virtue. Fun is finding a way to ENJOY each other’s company – even just for a few minutes, even after a crapola day.  Fun is being GRATEFUL for the kids you have and the family you make, whoever and however they are.

Yeah, this isn’t easy all the time; heck, it’s not even happening most of the time. But when it is? That’s fun. Thanks, Pardner!

Positive parentingly,

Love,

Full Spectrum Mama

#Positiveparentingday is the brainchild of the Introverted Matriarch. <3

THANKS, MOM/THANKS, SON!

This was written for the “I Don’t Need a Cure Autism Flash Blog.” 

For those who “tweet,” please use these hashtags throughout the day on 4/2:

#idontneedacure, #WAAD

Here is a true story that illustrates how I am trying to raise my son to accept himself just as he is, and to make his own choices about how he might want to grow as a person. I was particularly moved to join the “I Don’t Need a Cure” gang because of having used these very words to my son (before hearing about the blog) just a few weeks ago:

My son G and I were hiking up a local, kid-friendly mountain with the rest of the Full Spectrums -- my Pardner and Z, my daughter. I noticed G’s extremely rosy red cheeks and I knew he was feeling drained.

I remembered having those same red cheeks. I remembered how, as a child, everything seemed harder for me – not just the social stuff (!), but physical stuff like biking or running. I would get very red and work very hard when other people just coasted along or put in a reasonable (non-grueling, -agonizing) effort...

I would try to tell grown-ups how hard I was trying, but they thought I was lazy or out of shape. I had what I now know was low muscle tone, and sensory processing differences that made it super-challenging for me to follow team play. I know it NOW because MY normal course of development resulted in higher, more “normal” muscle tone later in life, and I am now able to see very clearly that I truly was experiencing challenges on a different level than others. I think I am generally a “fit” person now, though team sports have remained out of my purview (perhaps that can be attributed to a complete lack of interest on my part).

I know many activities feel harder to my son than they do to most. While my nine-year old daughter virtually runs up the mountain without breaking a sweat, my 13 year-old son is as red as a beet, even though his general levels of fitness and activity are basically the same.

Perhaps the hardest thing for me as a child was feeling misunderstood. I’ve always accepted difference, even (mostly) in myself, but I’ve never been able to learn to countenance injustice. So I wanted to validate G’s experience, and help him feel understood, in part by sharing with him how he is “sometimes a lot like me as a kid.”

I told him that “Everything was harder for me, when I used to go on family bike rides or runs, or when – this was the worst! – my family would make me join in soccer games.”

I remembered how agonizing those times were – how exhausted I would be, how misunderstood and alien I would feel because I didn’t enjoy the “enjoyable” activities my family shared, and because I felt like they judged me for how I felt, both physically and emotionally…

“I would get super red cheeks, just like you do! I was kinda soft, and floppier and ganglier than I am now. I got stronger and stronger as I grew up. I think you will too.

“Growing up is a process, and everybody does it in their own way. I suspect that for you, like for me, it’ll take a little bit longer for some parts of your brain and body to get in their best shape.”

I explained that my red cheeks and difficulty keeping up came from low muscle tone, a physical difference sometimes associated with neurological differences that made all my muscles have to work harder. I added that it was tough for me growing up neurodivergent in a way that I don’t think it is for him because the people around him and understand and completely, unconditionally accept him.

I thought about how watching my child encounter similar experiences in a very different context has been healing for me, and how grateful I am to be able to show him some aspects of life as a happy, healthy, self-accepting (all relative terms of course!) neurodiverse adult.

We walked a little further in silence.

“Thanks for giving me asperger’s and low tone, mom,” he said, sounding sarcastic and resigned.

I took a deep breath. “Buddy…don’t you like me? Because I like myself. And I like you too – a lot! It’s not that I want you to be just like me, you are absolutely your own person. But the things that make me a little bit different make me who I am and it’s the same for you. You’ll grow up at your own pace.”

“Of course I like you, Mom,” he replied. “But I want to be strong.”

“If that’s what YOU want, you’ll have to work hard to be strong, maybe harder than other people. But you’ll get there,” I assured him. “I promise. You can do anything you set your mind to!

“And once you do get strong, you will never forget how it felt to try that hard and succeed. You’ll always feel compassion for people who are having a hard time and accept and understand people who are different. Those are really good things!

“I like us both just the way we are. We can grow, when we want to. We don’t need to be cured.”

Love,

Full Spectrum Mama

THE COMPLAINT DEPARTMENT

It's that time of year when some of us lucky chums begin to feel more complainous.

What's that you say? Any time of year is a good time to feel complainous? Why, that's why Partial/incomplete Monochrome Persona (PiMP) and Full Spectrum Mama (FSM) have teamed up to create that handy dandy button over there on the right so that any time can be a complaint time.  

However, the “holiday season” can be quite grim. Knowing that your COMPLAINTS will be complained in a timely fashion for our annual COMPLAINT DEPARTMENT anniversary guest post -- with all the flair of PiMP! -- might be Just The Thing to ease your holiday woes.

This year, we at TCD continue to accept Junior Complaints, Short Complaints and Long Complaints, all to be suitably complained. Acceptable COMPLAINTS may be funny, whiny and/or dire. Please send all COMPLAINTS to jineffable@gmail.com.  

All this is not to say, as per usual, that TCD is open.  Yet somewhere…far, far away…lies the always-accepting, ever-enduring, firmly-shut COMPLAINT DEPARTMENT. You may be assured of that, alrighty.

Sincerely,

Partial/incomplete Monochrome Persona

Factotum, THE COMPLAINT DEPARTMENT

Guest writer/Troubleshooter @ Full Spectrum Mama

DIFFERENT

I recently read a book review by a person with sensory processing differences bemoaning a new compilation of essays by people on the spectrum as basically all stuff she’d heard before. It’s true: so many blogs and books are about similar things. Still, as a teacher (of yoga as well as academics), I know full well that it can take a lot of repetition for things to get through to people.

Another point in favor of repetition: Sometimes hearing things slightly differently, or from a different source, makes all the difference. I still remember the first time I really heard a yoga teacher say, “breathe deeply,” despite the fact that I’d probably been instructed to do so a bajillion times before. A particular iteration just might be the one that - finally, truly - gets through to someone.

As well, I applaud the normalization of the conversation itself! Another post about why someone needs earplugs or a weighted blanket or a sensory break?…Sigh? Or be glad that these adaptations are being integrated into the realm of “whatever” (as opposed to “weirdo-land”)?

In that vein, I offer my take on families and friends learning about difference:

A friend posted this question on facebook:

 ·

Hey friends, I'd like to know how you talk to your kids about people with intellectual and developmental disabilities. I'm finding the "difference" language, which I generally like and feel is empowering, to be somehow problematic.

[Her son]  knows that there are lots of ways people can be different, that some people are born different and some people look or act different because of something that happens in life (like veterans who use prosthetics). If I know someone's diagnosis (like Down's Syndrome), I use that in a matter-of-fact way, explaining what it is and how it happens.

The issue is when I don't know what someone's difference is diagnosed as, but I want to talk about that person with [son], so he can be sensitive to them. I want him to know it's okay to ask me any questions he might have. I don't see how he can stand up to any bullying of kids who are different if he thinks it's something so shameful we don't talk openly about it.

Thoughts? Advice?

Here’s what I said [combined and slightly edited for clarity]:

Great question and obviously one we deal with for a variety of reasons and in a variety of ways in our family. I do agree that a matter-of fact attitude is so important in most observation of others. Anything from "Oh, so and so sometimes shouts," to “Yup, looks like that kid has only one arm…” to “Yes, some people think it is important to wear clothing with a brand name on it,” can be shared in a neutral and implicitly inclusive way. There might be some judgment or question appended – “Does that hurt your ears?” “Do you think brand names are important?” “How do you think she feels if people stare at her?” –  that is likewise implicitly inclusive in that it does not intentionally refer to the “normalcy” of the observed trait.

One major caveat when it comes specifically to “disability:” Many people one might label as disabled might disagree with that label. They might feel they are differently-abled, or even superiorly-abled, or completely normal in their own way….

Because there are two key underlying things here:

how people see themselves

and  

how they are seen by others.

Obviously you want [your son] to know that all beings are worthy of kindness and respect (I hate "tolerance" [although I know it's meant well in theory, I find it condescending in practice]) including himself (who, as a male of color, will have his work cut out for him in some arenas...). This kindness and respect model encompasses both how he sees himself and how he sees others, and naturally integrates how others themselves might want to be seen, right?

What I try to convey is that Everybody is different...and everybody is equally worthy of kindness and respect. Having an autistic kid and a kid of color that's already been kind of an inevitable issue and we have our teachable moments at home as well as on the town. Sometimes they are painful. (And, by the way, there are those rare exceptions to these ideals of neutral observation and kindness and respect for all: those sorry-as$ people who do not treat us or others with kindness and respect [because they are “hurting in their hearts”] need to be treated with kindness and respect from a very long distance…)

I guess this is a long-winded way of saying:

if Everybody is different,

then "different in the way her mind [body, etc] works" or "from a different

culture" (or whatEVER)

becomes simply one difference among an infinite realm of possibility.

It’s a pretty ordinary point for those of us accustomed to daily life with “extraordinary” differences in our midst. But the implications are grand: with everybody being different, there is no homogeneous “normal” against which we all must be judged.

Love,

Full Spectrum Mama

Second Anniversary Lists IV: The Complaint Department

*** Trigger warnings: dark humor, sad and hard stuff, all mixed together ***

Dear Readers,

Thank you for having me, Partial/incomplete Monochrome Persona (PiMP), back for this post! Having, via my Guest Writing, complained her main COMPLAINTS last year (http://fullspectrummama.blogspot.com/2013/01/first-anniversary-lists-iv-complaint.html), Full Spectrum Mama was in an expansive mood for 2014. Except -- she still wanted to COMPLAIN that the wrinkles, plus pimples, plus hair loss, plus, admittedly, the very occasional, minor, miniscule mood swings of The Peri (our cutesy nickname for perimenopause) are no fair.

This line of reasoning might be summed up in a more general COMPLAINT, one deemed eminently acceptable by THE COMPLAINT DEPARTMENT (TCD): Some things are just No Fair. Is this fair? No.

In any case, this year TCD opened briefly in order to accept a multitude of READER COMPLAINTS gathered on behalf of PiMP by Full Spectrum Mama. Thanks, everybody, for so generously sharing your woes, irritants, protestations, and objections, as well as your grievances, grumbles and grouses; also: your cavils and quibbles, not to mention your jeremiads, beefs and whinges!

The COMPLAINTS are addressed in two formats: first, a list of shorter COMPLAINTS that are self-explanatory and simply needed to be complained; second, a more in-depth series of COMPLAINTS and RESPONSES from TCD. PiMP had originally intended to separate the funny ones and the sad ones, but the uniquely enticing combination of pathos and snorts won out. In the latter section, readers will find the more serious COMPLAINTS clustered toward the end.

I. Acceptable Complaints, Hereby Justifiably Complained

Having to wait for other people to finish eating before having dessert*

The girl I like doesn’t like me*

Magic tricks are not one of my talents*

That teeth are not white*

People who say, “You only get what you can handle”

When you start working on something that either a. you've been looking forward to doing for a while or b. needs to be done quickly, and your child finds you at that exact moment and asks, "Can I help?"

Cancer

Fleece

Recurring patterns

Grownups with very small hands

Dull knives

Teenage hormones

Disability porn [google it – definitely an acceptable COMPLAINT!]

Cold doorknobs, cold floors, cold steering wheels

Thanksgiving

Your child barfs on another kid’s lap. In a full minivan. At the beginning of an hour drive home from a school ski trip.

My husband groans and sighs constantly.  He says he isn't upset, sad or in pain, but that he needs to sigh and groan...

My cats do not get along (they want to kill each other). Don't even think this is trivial.

I have to eat every 2-3 hrs.

Intolerant people

People with rightness disease

That Republicans have so much power

Stirring natural peanut butter and getting oil everywhere, then, the next day, spreading it straight from the refrigerator and it’s hard as a rock

Moving

When pets die

Mean kids

When people who don’t have to earn a living open hobby businesses that take customers away from those who do need money

Getting full before you are done eating

When people treat my kid like a pet

Oh and I did get SEVERAL complaints from New Englanders about snow: borderline unacceptable. But we get it.

* Junior Complaints (from children)

II. Acceptable Complaints, Hereby Complained and Investigated

Complaint:             Why are men such babies?

Response:             PiMP does not have The Answers. At TCD, we accept (sometimes) and process (when deemed necessary) THE COMPLAINTS. PiMP also finds PiMPself a little vulnerable on this one.

C:             Dear PiMP: If my dog continues to bark I will twist his head off like a bottle cap. You mean like that?

R:             Why yes, I do. Please don’t, though. PiMP believes in Animal Rights, except for beagles – in that case, you’ll get a special dispensation.

And, in a similar vein:

C:        Dear complaint department,

I really love my two little dogs. They are like fuzzy children to me. But they bark so much at my poor innocent neighbors that I regularly want to rip their vocal chords out (the dogs, not the lovely neighbors). This is a serious complaint and I would like for you to help. Thank you in advance.

Sincerely, Barky and Barky's Mom

R:        Are these dogs beagles?

C:        Dear PiMP,

I got some complaints.  My chief complaint today is:

I’m working so hard (complaint #1) that I’m burning extra calories.  My Lean Cuisine luncheon is not keeping me going (complaint #2).  And no one is bringing Chinese dumplings to my office (complaint #3).

R:        PiMP shares your concern, but does not have The Answer. PiMP suspects that eating just one dumpling is better than consuming MANY, MANY Lean Cuisines; therefore, using an unusual kind of circular logic, PiMP concludes that the best solution may well be to eat MANY, MANY dumplings.

C:        Why do some people get all the luck?

R:        And some guys get all the pain. Right? And some do nothing but complain? Sure, it’s a song (Rod Stewart: https://www.youtube.com/watch?v=VuYvKLZXKhI) – but it’s true, too. And when PiMP starts to think this way, PiMP tries to remember that for every disastrophe, there must be something equally, balancing-ly wonderful.

Yeah, that works sometimes.

C:        Today, my complaints are:  1) I am not drunk; 2) I am not drunk in Spanish Wells [idyllic Bahamian island]; 3) I am neither drunk in Spanish Wells, nor with the people I find most endearing, amusing, fun, capable and awesome. 

R:        Please send airline tickets c/o TCD

C:        Dearest Complaint Department

Today at work i wore a new Asian inspired jacket with cranes on it. My mother gave it to me for Christmas and i think its cute, unique and looks good. Not a single person complimented it or even mentioned it today. Is it more likely that the jacket sucks or that all of my co-workers had other things to focus on today?  Or, perhaps my co-workers suck. In any case, i believe something sucks and can’t figure out which one.

Thank you kindly.

R:        What a faaaaaabulous jacket! There, now do you feel better? Back to work.

C:        Why oh why oh why, I am stuck in this hovel-fest donkey-cart town with absolutely no mobile phone network, my friendships here (such as they are) are all in tatters, I am surrounded on a daily basis by the most revolting fashion disasters, too tight, clashing colours, painful attempts at matching and generally just wrong.

I need style, grace and something nice to look at - no wonder I have become totally addicted to Downton - such a lovely century and a tasteful, rule bound and class based society. Now I must venture forth into the horrid road outside my office (of course my office is a veritable bastion of good taste and visual delight - replete as it is with lovely plants and tasteful black and white photographs) as I need something to nibble following insane running and gym activities early this morning - but I will have to endure day glo nylon plastic yuck. And I ask, as Miranda from The Devil Wears Prada would, why can’t it all just go away?

R:        It can.

C:        Non-driving Driving COMPLAINTS:

1.

Parents who stand in the open door of the school bus chatting with the driver for 10 minutes, completely oblivious to the 100 or so cars that are backed up in both directions. This has gotten to be a common occurrence around here and I don't know who started it, but I would love to know how these people find this to be acceptable behavior. Typically their child is already standing there with them looking like they'd rather be watching Pokemon [yay pokemon!] than hearing the latest school bus gossip, so it doesn't appear to be that their child is taking a long time to "de-bus." Argh....

            2.

            One might have to annihilate the majority of NH pickup truck owners north of the state Capitol.  It's fun to sit parked, waiting for the two yin & yang oriented trucks to end their conversation about cordwood inventory, who bagged the finer bear or what Bob's wife has been up to (except when you're tryna get to work).  On the one hand, I can appreciate this as charming - that they care enough to stop, inquire & flagrantly disregard the conventions of traffic flow.  On the other, it is absurdly self-involved!  Maybe each of us should invest in one of those dashboard-mounted emergency lights. The proper response to obstructive talkers may well be impersonating a police officer.

R:        PiMP respectfully suggests [censored].

C:             OMGerd...Complaints… I have so many, but my son just turned 39, so...I think most complaints of mine are outdated. My most basic problem these days is...since he's an adult who lives on his own (mostly, a program checks on him 1-2 times a week and gets him to Dr visits, etc), he can tell me easily: "Mom, I don't want to talk about it." And there is SO much to talk about. He left better services because he's fairly high functioning and didn't like being lumped in with seriously handicapped individuals (pardon my language...this is the language I learned and have not kept up with whatever the new vernacular is these days).

When young, he had about 20 'labels'...some of which fit, some of which seriously did not. He spent all of his school years in 'Special Ed'...some of which was abominable and demeaning. He graduated high-school at 21...but was not at all ready to go out into the work-world. Take 'Horticulture' for example; instead of the usual 200 or so Latin words a kid had to learn in this class...their idea of fitting the class to him was to have him learn just 40 Latin words! Of course, he flunked the class.

While he reads the paper and sports magazines and can talk some about current events that he reads, he has troubles with 'getting things right' (not making mistakes); OCD (big time), smells & bodily functions will make him gag & vomit (there goes his job as janitor), wanting so much to be liked he'll do things to make another laugh (over and over), staying on task (but does well with a supportive buddy who works WITH him), and on and on. He's not worked in several many years (hell, engineers are out of work!), and is furious that where he was just forced to move has BEDBUGS and COCKROACHES, but changes bed-sheets about 3-4 times a year! [sigh] Oh, and he was loaded up on so many drugs 'to help him' that he resented feeling weird all the time and now refuses to take any that might actually help now.

MY complaint is: HOW can I learn to talk with him in a way where he doesn't feel 'less than'? He clearly needs help, but hates that he does. Neither of us has the vocabulary...and too many 'old' words were used in the past. As a kid he had teacher's send him back to his 'special' class with a note: "I don't have time for him today"...a bruised hand print on his butt from a male PE teacher, being made to stand in a corner for soiling his pants or for 'projectile vomiting' on purpose (just before the household came down with the flu).

Crud, I could go on and on. But HOW to let him keep what independence he does have and HELP him learn more about his 'disability' (as we've grown up calling it)? Recently he was switched from Medicaid to Medicare (I have no reason why), but perhaps that will give him a therapist who will talk to me, too. GRRRRRRRRRRRRRrrrrrrrrrrrrr...

R:        Oh dear Mama, even TCD wishes it could solve this one, and turned to FSM for her thoughts:

I just had to let out a huge breath as I had been holding it the whole time I re-read your COMPLAINT.

It’s funny, I often think those words, “less than,” when I think of my son. NOT because he is in any way so, but because he is often erroneously perceived as such. I never want him to hear that in my voice or sense it in my attitude and so I so get what you mean.

We had a rough weekend this weekend where I was trying to explain to him that he is going to have to work so hard to live on his own if that’s what he wants and he is still mad at me. I tried to explain that everybody has stuff they have to work on – that his sister has to work on being kind, that I have to work on healing myself from hard stuff in the past…

I talk so much with the few people I know who have similar children: the ones who are “high functioning,” academically gifted, etc. but who struggle daily with social interactions and common sense stuff like hygiene and transitions and finding things and places (some of this sounds familiar for ME, too ;) ). The uneven skill sets that sometimes come with disabilities – great strengths, great challenges – make life hard in this neurotypical world. We worry, like you, how our beloved children will make it out there. They are just on that line where they won’t necessarily need daily help or supervision but they will need some. And I think the worst part for most of us is: what about when we are gone?

I feel sick when I read about the stuff that happened to your dear son in school. I wish I could say that sounds completely out of the question now, but I do feel we parents are still fighting for accommodation and integration in ways that fully respect the needs of our children. Right now my son is in a new school that is a much better fit for him, but I have friends whose children are being treated in ways that are quite disturbing. And they are having to fight and fight and fight!

You must be tired. I know they are and sometimes I am, more than I can say...

And then there are those very basic things too, like low expectations. Research shows that low expectations generally lead to low learning/achievement. That’s another thing we fight for – that our children be encouraged to reach high: 200 Latin words not 40!!!

At the same time, those of us with children on the spectrum often feel pressure if our children are not “savants” in some area – equally ridiculous!

I know you love your son above all. I know you don’t see him as less-than; I know that for sure. That must come through in your voice and in your actions. Without the amazing love and support you have shown him where would he be now? (This is true for all children, but even more so here!)

As a philosophy teacher I often find myself celebrating questions (stuff we have objective/definite answers for is called “science”). I think you are asking the questions that will lead to adequate and sometimes even happy answers for you both. Language evolves and I think we do now have more tools in that toolbox. See if you can talk with your son about what language feels right for him. Does he have an email address? Sometimes written is easier to process than spoken.

If you DO find any answers, please let us know.

Love,

FSM

C:        As far as hard stuff or questions. One of the hardest things for me is when my amazingly wonderful unique and mostly HAPPY boy gets so frustrated with his struggles in certain areas, that he feels he should not have been born and states it to me like that. Could kill me right there as you can imagine....  Then he calms down, but in those moments -- not easy for both of us!!!!  That may have been more than you bargained for or not in the direction you had in mind, but telling it like it is....

R:             PiMP’s icy heart breaks at these words. In fact, this concern was shared by several parents in a sentence or two but this really expresses this painful, devastating scenario. So many of our children (and ourselves) are completely daunted by a world that sometimes seems not to understand or include them as equals.

            Children are exposed to the knowledge of suicide so young these days. Add to that the challenges and differences some (most) of them face and it’s almost inevitable that in moments of duress that terrible thought might enter their minds.

Perhaps the best parenting advice PiMP ever heard was this: “The odds are with them,” a phrase which sustained PiMP through many a high fever or croup and might offer an infinitesimal glimmer of hope in those low points.  We have to use every tool in our arsenals to strengthen those odds, to support our loved ones so that they are armed to face those particular challenges with which they contend.

And then there’s the world at large.  Part of our job as parents is to offer a longer-range perspective on that world.

When they feel sad, Full Spectrum Mama always tells G and Z that things will get better – as they get older, as the world becomes a more open and all-embracing place.

PiMP is also a teacher, and sometimes PiMP asks PiMP’s students whether things actually are getting better  - more inclusive, less bullying-prone --  and sometimes, usually,  people say they are. Here’s hoping that’s true.

C:        So I am tired of the seeming inability of people to understand that my son communicates differently. He does not understand nuance. He does not understand non-direct language. Word problems are going to flummox him. If you overreact to discussions of body parts two things are going to happen: he will be ashamed of his body AND he's going to talk about these things MORE. Negative social interaction is social interaction....That's just a start...

R:        What good is this idea that there are traits that some on the spectrum might share such as this one if no one takes them into account in interactions???? Okay, maybe not the FIRST interaction, we all need to learn about others, and differences, etc -- but once it has become clear??!!!!!!! In the last few weeks alone, PiMP has heard from friends on the spectrum and/or with children on the spectrum about family, friends and - especially, sadly - teachers sharing the inability you mention. Step up, people. 

C:        Here's what slays me:  the well-intentioned relative, who truly does mean well, but whose remarks just sting beyond their imagination. Most recently, my brother told me that my son can't "blend" or "pass for normal," so it might be kindest not to keep sending him to the school for normal kids where he struggles to fit in. 

Ouch. Seriously, ouch.

R:            OUCH!

And in another family vein:

C:        My Mother does not understand (believe?) that my son has autism. I am not sure why this is, exactly. My son was officially diagnosed when he was 4. His cousin (6 mos younger) was diagnosed in 1st grade. At which time my Mom tried to explain to me what Asperger's was. I said, "I know. My son has it. I've been explaining that to for 3 yrs." Her response, "Not like this." Which is true in the sense that every child is unique and manifests it differently, but she meant it that my son didn't *really* have it or had it to a much lesser degree. *sigh* In the end, it doesn't really matter because we live far away, so I let it go...even though I have to remind her like 3 times a year that he has autism. Over a recent trip down to Fl, the cousins spent many hours together. Safe in an understanding of each other that was simply beautiful. Truth be told, my sister-in-law (his Mom) and my sister(his aunt) noticed just haw similar they were to each other..but then my sister (a teacher) and my sister-in-law both have a deeper understanding of what's at play.All this is preface to the Mom story, my complaint:

When we arrived, I set down the rules/limits very clearly to my son and explained what we were doing in advance. This was to lessen his anxiety and to give him parameters to work in. Almost immediately she began with, "just let him do it. It's alright. He's okay"...etc. Implying I was too strict and overriding my rules. By the 2nd day, when he asked me something and I said no, he looked to her to overrule me. Not understanding nuance, without always rules...there are no rules... Anyway, by the 3rd day, he fully expected her to overrule me anytime I set a rule. (This makes complete logical sense btw). She was driving back from my Sister's and he kept asking why we were driving the way we were back home. (It was admittedly not a direct route but my Mother has her peculiarities) I told him it was okay, but he kept asking because a) he was nervous and worried we were lost and b) he expected Grandma to say 'let him be'. But she didn't because to her this was questioning her authority and she got angry. Which escalated his anxiety.

And started him asking "Are you mad" every couple of minutes. Once back, while he was eating dinner, he started asking questions again...and she flipped. Yelling crazily at him. He burst into confused tears and I had to comfort him. She asked me...something..I don't remember...and I answered "He doesn't understand"

Her response was, "well I don't understand why he won't mind."

It took ALL my strength not to yell back, "Because you spent the last three days teaching him that while at Grandma's he doesn't have to listen to Mom. And he's in an unfamiliar place. And he has high anxiety. And you have set him up to fail."

 I gave a calm(er) explanation...insufficient...but it boils down to:

She doesn't see my son as disabled but he functions well in *certain* situations. She has decided my nephew's particular issues are the true disability...and therefore any issues of my son are willful. Also, she sees fear as a kind of sin (her words) so a high level of clinical anxiety makes no sense to her. I just...am glad we're home...

R:        PiMP feels very sorry that your Mother is clearly out of touch with Reality. Nothing is more frustrating and disjunctive than when another person – especially one with whom we “ought” to be in tune --  has a completely different perspective than the one which is reflected in objective facts, such as, ohhh, I dunno,  the diagnosis of a pediatric neurologist, the educated opinions of educators and, oh yes, parental experience.

            PiMP applauds your healthy and effective parenting efforts and apologizes for Motherly non-compliance and undercutting of your hard work. PiMP suggests you take strength where you can -- from home, from community, and from the deep bond you clearly share with your son.

PiMP would like to remind readers of an important phrase PiMP read somewhere, the source of which PiMP cannot find, but the sentiment of which PiMP heartily endorses: “Blood means nothing. Family is who we love.” Here’s a link that discusses this most beautifully: http://toluidowu.blogspot.com/2012/12/blood-makes-you-related-loyalty-makes.html.

Now that TCD has brought you this cathartic and responsive-ish list, TCD is, once again, closed. As with last year, TCD will re-open on the 32^nd of Nevruary.

Sincerely,

Partial/incomplete Monochrome Persona

Factotum, THE COMPLAINT DEPARTMENT

Guest writer/Troubleshooter @ Full Spectrum Mama