Wednesday, February 26, 2014

OH! THE ____ SCHOOL?


Pardner is a chef and recently texted me during dinner service about a nice family that was at the restaurant. He said he’d been observing them, from his open kitchen, and he thought the teenage son was “very lovable” and “probably had asperger’s.” He mentioned that the kid had told the server that he wanted to come back and visit the chef after dinner, and was hoping that was okay with Chef. Pardner being a cheery and accommodating fellow, it certainly was.

An hour or so later, Pardner texted me again. This time he told me that the father of the teenager had turned out to be “a jerk.” When he came home (late – argh), he told me more about what had happened. Apparently, this Dad hadn’t let his son visit with Chef, and had been short with the server. Somehow over the course of the meal, his personality had changed.

I was really surprised, but I was also sleepy.

In the morning, I asked for more detail. It turns out that the server, a well-meaning and sweet person who has some experience with children, had engaged this family in friendly conversation. When she found out they were not local, she’d asked why they were in the area and they’d said they were looking at schools.

“Oh!” she said. “The ____ School?”

The ___ School is a school for children with special needs.

“Well, there you go,” I said, feeling a little sick to my stomach for that family.

“What?” retorted Pardner, completely dumbfounded and baffled.

“You don’t even get it, do you?” I replied, nicely.

Shut the Front Door.

Imagine you are a family. Maybe you have a child who is “different”…but you want that child to have every opportunity. So you take them out to a fancy restaurant. Part of you, hypothetically, is praying that your child is not disruptive in any way. Another part of you feels that your child has as much right to be in a restaurant as anyone else. Part of you, again, hypothetically speaking, celebrates your child EXACTLY AS HE OR SHE IS; another part (probably much smaller but still there, okay?) desperately wants your child to fit in, to be accepted, to be able to “pass.”

So you are eating your dinner. Maybe it’s been an intense day with interviews, maybe with wondering if your child is “too different” or “less different” than other kids at the potential school. Maybe you just want to eat some ding dang dinner in peace. And your chipper, cute, 20-something server just – out of the blue, basically; trying to be “compassionate,” or “knowledgeable,” or whatever  - busts out with her “understanding” information.

Because, obviously, your child needs to go to the “Special” school, right????


“Really?” Pardner asked, after I explained this to him through my tears. I felt so bad for that poor father, and the kid, who’d been pigeonholed, albeit by someone with nothing but good intentions. “Hmm. He didn’t leave a very good tip.”

“See?” That was the final proof for me. Even though that server had done her best vis-à-vis her actual job, and probably deserved the great tip she usually would’ve gotten, her presumption had not served anybody well.

Love,
Full Spectrum Mama



P.S. The ____ School is a fantabulous school. That's not the point.

P.P.S. Please also see "ON WRITING" for an update on this post!


Wednesday, February 19, 2014

THE HARD TIMES ALTERNATOR

From time to time, Full Spectrum Mama feels inclined to posit the existence of heretofore undiscovered mechanisms of being, such as the Extrapolator-Catastrophizer Gland (a.k.a. the ECG -- http://fullspectrummama.blogspot.com/2013/05/the-incident-of-overactive-extrapolator.html).

I’ve noticed over the years that, when one child is seriously – really seriously -- full of beans, the other will often back off from any of their usual “issyews” because, well, I used to think it was they could tell that MAMA CAN’T TAKE IT ANYMORE and if ONE. MORE.THING. HAPPENS…She’s gonna BLOW.

However. I’ve recently come to believe in the existence of a previously unknown ethereal apparatus that I am going to dub The Hard Times Alternator (THTA). This nifty device, when in good working order, is what makes one child stand in slack-jawed awe of another child’s tantrum, rather than joining in or – egads – cooking up their own simultaneous insidious activity. (Please see Figure I, below.) Then, it’s what makes Ms. or Mr. Slack-Jawed bust out a classic drive-u-nutz move once their Loco sibling has subsided. This is known as "The THTA Switcheroo." And then you eat the candy. A lot of candy.


                                     Figure I – Hypothetical Examples of THTA Activity

THTA is what makes you get several new part time jobs when you lose the one you had; or get a really great magazine in the mail right when you get sick. It drops the good thing in on either side of the less-good thing. So that you can live?

THTA is Not to be confused with the classic “We only get [or ‘God only gives us’] what we can handle.” Which – just – no.*

Indeed, ideally, THTA should be a fair manifestation of macro-order justice and balance, proportionately bringing ease where needed and modulating struggle.

Do you feel slammed? Maybe your Hard Times Alternator is jammed. Unjam that slam with some [insert clever, applicable rhyme here].

Love,
Full Spectrum Mama


* This insipid and presumptuous saying is a perennial favorite COMPLAINT of THE COMPLAINT DEPARTMENT.


Thursday, February 6, 2014

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 32nd of Nevruary.

Sincerely,
Partial/incomplete Monochrome Persona
Factotum, THE COMPLAINT DEPARTMENT
Guest writer/Troubleshooter @ Full Spectrum Mama