"MOTHER APPEARS DISHEVELED"

Dear Persons,

I was listening to NPR not long ago and ended up sobbing in the car. Again. The segment that got me this time was on voting rights (read it, and possibly weep, here), and how in many states persons who have appointed guardians do not have the right to vote. Whether to apply for guardianship of my son is probably the question I struggle most with on a day to day basis (followed closely by even more terrifying questions about what will happen to him when I am gone). The thought of my brilliant, politically-engaged son being unable to vote was one more tally in the non-guardianship column. I want to always err on the side of presuming competence, yet I always want my child to be able to, you know, live...sometimes despite himself.

I mention this not because this matter is resolved, but to point out that for parents with atypical children, and for people of difference in general, the world out there (your basic radio show, and so on) can be a bit of a minefield.

I have many friends – who I still speak to! – who like to say “Oh, it’s hard being the parent of any kid.” Sure, I will give you that. And I will gladly agree we most of us love our kids the same agonizing, rapturous, heart-expanding amount. But I am not Full Spectrum Mama for nothing: I have one typically-developing child and one who is developmentally and neurologically atypical and I can assure you it is not the same kind of hard! When your child develops differently there may be taken-for-granted, essential life skills that he or she may develop late...or never.

The idea that G will “grow out of it” – whatever “it” is – is thus often meaningless and certainly not reassuring.  For example, all his life G – despite assiduous and almost-constant attempts on my part to change this - has used his clothing as a combination napkin/tablecloth while eating. And that’s when he notices he has food on his face or hands...which he usually doesn’t. In the scheme of things, I’d like to think of this as minor – I mean, G is extraordinarily KIND and FUNNY and SMART – yet how will this be viewed by a potential employer? Or partner? (And no, I do not mean typical sloppiness, my “all kids have challenges/all boys are slobs” friends.)

Or perhaps your child is or you are (as am I) at the other end of the noticing/reacting spectrum and barely able to function because of obsessive compulsive (OCD) needs and/or sensory overload from crumbs and the like?

Maybe G’s table manners will improve someday. Maybe someday I will be able to ignore a single crumb on my finger. But sensory processing differences (SPD) and other neurological differences are often integral to who we are, part of our very biology. Neurodiverse and differently-abled persons may develop neurological, practical, and/or emotional strategies to function in a world that was not designed for them – and sometimes doesn’t make sense - but there is much we will never “grow out” of...

My conservative yet highly clinical estimate is that I worry about G a million, billion, gazillion times more than Z, my typically-developing, typically-abled daughter, even though she has had her issues as all children do...

I usually write more from the perspective of a child advocate, or in efforts to spread awareness and acceptance of difference. This time, I wanted to write about what the parents I know who have children with extraordinary challenges feel like a lot of the time, both to acknowledge and honor them (us) and to spread awareness on this front.

I am not complaining – my child brings me extraordinary wonder and joy every minute of every day – I am explaining.

Those of us with who are different, or have children with differences – or both! – have to navigate more-complicated, often “inappropriate*” (to us!) environments and interactions – environments and interactions that may feel overwhelming, cruel, arbitrary, opaque -- almost all the time. In a very real sense, the “problem” is the world, not our kids/us.

My Meeting Friend became my dearest and most-cherished support-network-of-one when mutual friends who knew our children kept suggesting we connect, and then our paths kept crossing en route to and from Meetings, therapies, etc. etc. My Meeting Friend was once at a Meeting – of which one has exponentially more with an atypical child (and yes I know this from personal Full Spectrum experience) – and glanced over at what one of the “professionals” there to evaluate and assess her son had written on a pad and read, “Mother appears disheveled.”

Now this is a mother who has willingly and bravely made changes and sacrifices for her child beyond what most could even imagine. That very day alone I am positive she had already cooked several different healthy breakfasts taking all individual food allergies into account, carefully planned out ways for both of her children to have their own kinds of successes (including – egads! – athletic successes!!!!) and learning experiences, gone to great lengths to ensure social interactions and a beneficial sensory diet for her son, written several emails regarding grades, social situations, IEP, 504,etc.,  made sure her other child felt “just as important,” oh - and worked at her job...** With a smile on her face.

I am impressed she even had clothes on after what she has been through. But there that note was -- amidst, I am sure, other stuff (such as “EXCELLENT parenting!” and “Kid is PERFECT, just a WEENSY bit unsuited to the average boring old, sensory-/social-nightmare classroom”)  --  ...”Mother appears disheveled.”

Figure I – Disheveled Mother

...Ya think? And I wasn’t there at that particular Meeting, but I do know that she has had the grace to laugh about it ever since.

My friends, do you appear disheveled or know someone who does? From crying in the car, maybe? Are you disheveled on the inside even if you appear “heveled” on the outside? You are in good company.

Much Love,

Full Spectrum Mama

* “Inappropriate” is such a trigger word for many on the spectrum. There are a lot of “normal” things we find “inappropriate,” believe me (and there is no monolithic “we” in either neurodiverse or neurotypical contexts!). Nonetheless our children are often told, especially in school, that X, Y, or Z is “inappropriate”...One hopes that some consideration is given to the possibility that people who perceive and process differently may have different standards – and not always assume that neurotypical standards are the correct and appropriate ones. 

** How do I know these things? Because I know my Meeting Friend. But also because I and most other parents I know who have children with differences do these types of things Every Day. I just wrote a letter to G’s teachers and “learning specialist” while I wrote this footnote.

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

WHISTLE NOSE...and other Sensory Processing Differences

Are you an Easy Whistle-Noser? A Vicious Whistle-Noser? Not sure? Read on to find out where you and yours might fit -- or have a fit -- in our corner of the Sensory Spectrum.

For some of the Full Spectrums, Sensory Processing Differences mean that sometimes we simply cannot process the whole package of sensory input in a given context -- or that we process it very, very slowly --  because one element is (or a few other elements are) overwhelming. In other words, the processing (registering, digesting, understanding) of one impression among a multitude – whether visual, auditory, aural, proprioceptive… -- utilizes all the energy we have available for that function in a given moment.

Sensory Processing Differences sometimes force or inspire us to get totally lost in the experience of what we are sensing. In some instances this can be to the detriment of “successful” interactions with the “normal” world; in some instances (sometimes the very same instances), this can result in extraordinary creativity and emotional bliss.

With Sensory Processing Differences, when we do (or taste or smell or see or feel…) certain things (or do/taste/smell/see/feel…too much of even non-triggering things) we get anxious, irritable, dazed, even sick (helloooo, migraines) because our neurology cannot prioritize or cope with sensory input in such a way that it is manageable. Further, we may not even NOTICE that we are anxious, irritable, dazed, sick…because we are processing something else.

Processing one or a few aspects of our sensory environment -- say, the presence of people, or people plus sounds – can preclude effective simultaneous processing of most other aspects, such as:

what we are thinking or feeling,

what we are learning,

what we see,

what we smell,

where our bodies are in space (proprioception, vestibular function),

what those people are saying or expressing in social cues…

Later, we can sometimes put it together, in a sort of delayed processing process, if you will. In the moment? Too much.

Here are some examples of SPD in daily Full Spectrum life:

WHISTLE NOSE

Some of the Full Spectrums are Ultra-Norms in the sensory department: both Z and Pardner are neurotypical. This means, among other things, that they manage and process the sensory experiences of daily life with ease and aplomb – thoughtlessly, effortlessly... (It might be worth noting that all parties mentioned herein with Sensory Processing Differences (G, myself, Full Spectrum Grandmother) are biologically-related – and all those without SPDs are not.)

I once literally shocked Pardner by mentioning – casually, because to me this was obvious  – that sometimes in the night when I wake up I cannot go back to sleep because of the whistling sound my nose makes when slightly stuffed up. Rationally, I know it’s just a small noise that is coming from my breathing and that I should ignore it, but – trust me on this- I cannot, even as I know full well I am losing precious, precious sleep.

                                                             Figure I – Whistle Nose

“Whistle Nose” was the name we’d made up long ago for this phenomenon…a phenomenon which apparently had profoundly divergent meanings on the Sensory Processing Spectrum embodied between us. We were both totally surprised to discover after all these years that we’d each had very different feelings about Whistle Nose!

To Pardner, someone with “normal” sensory capabilities, Whistle Nose was simply something funny that happens sometimes. For me? Sure, there was potentially a somewhat humorous aspect to it, at least during designated waking hours. But, mostly, to this Highly Sensitive Person, Whistle Nose is a mild but pernicious form of torture that can actually adversely affect my quality of life.

SCHOOL

Where can I even begin with School? Even at its most pared down, there is just way, way too much going on in the classroom for my son G’s learning/academic brain to function anywhere close to optimally. How this manifests is in increased dysgraphia (writing issues, simplistically speaking) and dyspraxia (coordination challenges, ditto), decreased organization and intellectual progress, and highly awkward social interactions on his end.

Getting the “right” things to be background so that the important thing(s) can be in the foreground for healthy, efficient processing is a complicated and ongoing endeavor.

His Team and I have long agreed that the benefits of being in the classroom outweigh the negatives (another post…), but it bears inclusion in this post because pretty much anyone with SPD is going to find any institutional setting – such as a store, or an office, not to mention school – challenging. Knowing this, we can at least investigate ways to improve and/or modify such common yet impactful situations.

SMALL WINDOW OF COMFORT

Full Spectrum Grandmother uses this phrase to describe herself, and it resonates for G and me as well. Before we learned about SPDs it was a helpful, slightly jokey way to convey to others that she – like certain other Full Spectrums – is intensely affected by her environment. One area of sensitivity has always been temperature, and Full Spectrum Grandmother has been known to alternate air conditioning with extra socks and sweaters in her ongoing attempt to find her “just right” temperature. Just last weekend, she told me she was having a challenging time figuring out where to stand in the back yard:  “In the sun, it’s too hot; in the shade-too cold!”

We get it. We are the ones trying to get comfortable over here while you move back and forth in the grass, Full Spectrum Grandmother. Really, for many of we Full Spectrums, any number of sensory impressions can preoccupy, consume, even injure, us. (See: G with visuals and auditory; Mama with, oh, just about anything, but especially light and artificial scents…)

Textures and tightness are another Window of Comfort concern for Full Spectrum Grandmother. Things that are too tight can make it hard to focus; things that are too loose can be dysregulating as well. Rough textures can, in effect, abrade the brain; soft can feel disconcertingly – and distractingly -  slimy…

                                             Figure II – Small Window of Comfort Spectrum

Trivial? Maybe to someone whose brain doesn’t red-alert things like temperature, texture and fit so that they occupy the neural vanguard of one’s existence to the exclusion of much else!

ALEXITHYMIA

In our particular Autism Spectrum chunk live two people with extremely advanced verbal skills and the verbal processing ability of two hunks of cheese. Alexithymia is defined as difficulties in perceiving, defining and expressing emotions; and although we may not exactly fit some of the clinical definition (impaired creativity? Au contraire.), it’s in many ways a good name for what we experience.

Whoohoo! There is a word for this!

For some, alexithymia is permanent; for us, it is mostly situational and sometimes temporary – but always a challenge. For example, both G and I are extremely sensitive and are prone to having a feeling. When we get that feeling maybe we will be shaking or crying or angry – but we cannot explain what the feeling is and/or why we are having it at that moment. One very important repercussion: we cannot “justify” that feeling to others, especially the person (or persons) associated therewith. This can feel very destabilizing and unfair. We know we are having an emotion, but that emotion PLUS OTHER STUFF (people, words…) equals far too much to make sense of at once, never mind hold our own in interaction.

One problem with this scenario is that people often will want to talk about things as they occur -- which is not generally something that we would be able to do with clarity in that moment!

After we have plenty of time and space to PROCESS what happened, we can usually (not always) give a cogent explanation both of what the feeling was and why we were having that feeling in that context. If people are willing to wait, this is when we might be able to explain ourselves and our reactions…for me, preferably in writing.

G is being raised in a family where it’s totally fine to cry, even when you don’t know why you are crying. I was raised in a WASPY family where nobody talked about their feelings. It took me a long time to realize that I was actually unable (vs. disinclined) to talk about my feelings because they were too strong to understand in real time. There’s a big difference. WASPS may choose not to talk about feelings; alexithymia removes that choice.

This relates on a very basic level to SPD. Think of it like this: If I am listening to you -- and actually hearing and understanding you -- I am probably not looking at you (or at least truly seeing you). If I have a big feeling about our interaction while I am listening to you, unless the understanding of this feeling is given the neurological front seat (which is not under my control in that moment, and so unlikely), it may just look like I am dazed…or barely holding my own in conversation…I may seem very upset (possibly for unclear reasons) or I may seem just fine. I will probably remember every word you said because of a different neurological quirk (eidetic memory) – and that’s good, because the real impact/import of our interaction will for me only emerge over time. 

G and I – not always but a lot of the time and most assuredly when feelings are strong – do not essentially “know” what we are feeling until after the fact.  For us, alexithymia is inextricably linked to SPD. G and his generation, as people growing up with more awareness around SPDs, will have a lot more in their toolboxes to develop self-awareness, moderation and expression than older generations. At the same time, this growing awareness has – I hope -- enabled many of us to feel more comfortable saying stuff like, “I can’t fully process this right now. I will get back to you about it later.”

Is that enough input? Probably! Just one last bit: Learning about Sensory Processing has brought us some relief, particularly through the use of Sensory Diets and Sensory Breaks. More good news: using these techniques and insights will probably bring subtle but pervasive benefits to your lives, not just your, you know, senses and processing. Once you know you are experiencing Sensory Processing Differences, there are a lot of general resources online, so I have just shared some of our sometimes-quirky personal solutions below.

1.      A Sensory Diet can be therapeutic and formal, or it can be a way of being more conscious and evaluative about how we move through our days. Regulating and actively engaging with what you and/or your child consume/experience through your environment, even just a fraction of the time, can be super helpful. This may mean small steps like avoiding the cleaning products aisle at big box stores – or avoiding big box stores (the lights! aaaaaaaack!) altogether when possible. It may mean finding new ways to introduce your child or yourself to new textures and tastes -- or it may mean finding ways to get the nutrition you need without exposing yourself or your child to edible agony. It may – may! - even ultimately mean transcending food-related sensory challenges by being really smart and lucky about your overall sensory diet over time! It may manifest as it does for us in planning plenty of down time on the weekends – and being emotionally prepared for those frequent days when we cannot avoid doing too much.

Setting boundaries on what you do and where you go can feel burdensome, but it feels less so when you realize that you are actually able to enjoy, process and integrate what you do do.

2.      There is little a real Sensory Break cannot soothe, if one is available. The key is having the wherewithal (a small patch of uncluttered mental space?!) to REMEMBER to take that Sensory Break – or to offer one to your child or someone else you know who needs one! (My dear friend Rachel Cohen-Rottenberg introduced me to this concept and I will forever be grateful.) Many schools now have Sensory Break Rooms. Some kids might need intense movement or “arousing” activities, others, complete silence and darkness or “calming” activities…I’m not crazy about labels like “under-reactive,” over-reactive,” etc., but you can figure out what works for you and yours with creative experimentation.

For adults and children, that key ingredient of a good Sensory Diet – the Sensory Break -- can be as simple as going to the nearest bathroom (or even closet), closing the door, covering your eyes and ears with your fingers and taking deep breaths. Please, in the name of all that is holy, let there not be an air freshener in the bathroom. And, thank you in advance, dear universe, if it is not too much to ask, no Whistle Nose.

Love,

Full Spectrum Mama

An InLinkz Link-up

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

INTERLUDE: THE COMPLAINT DEPARTMENT

Because FSM has gotten a teeeensy bit behind in her List Writing, there’s still time to submit your COMPLAINTS of any stripe. They can be funny or sincere or sad or…Please email them to me at jineffable@gmail.com.

And as a special treat, here is a COMPLAINT from moi-self:

COMPLAINT: Why is autism often used as a casual literary device to signify something one does not want? Then it jumps out at you unexpectedly when you are reading to try to chill out?? And, thus, you are no longer chillaxin’???

Examples from the last few weeks alone:

In Anna Quindlen’s memoir, Lots of Candles, Plenty of Cake, right there on page 119, with no warning: “I remember the profound, almost physical relief sense of relief I felt when I understood that our sons and daughter did not have colic, were not autistic, showed no signs of adolescent mental illness.”

In Claire Messud’s novel, The Woman Upstairs, all nonchalant, about someone with unacknowledged, un-wiped soup on his chin: “Or maybe he’s from outer space or like a person with autism” (p. 120).

In the 11/18/13 New Yorker (yes, I am always 6-8 weeks behind), in Jeffrey Eugenides’ short story, “Find the Bad Guy:” ”You’re old. Your sperm are old. Baby might come out autistic” (p. 74).

SUBCOMPLAINT: It’s used casually to “sell, sell, sell” as well. Yesterday, I saw this on the ad side of my facebook page:

Chartered

Asperger Experts

Why is it so hard for people with Asperger's to succeed in life? http://www.aspergerexper...

I don’t want to think about that sometimes-true statement while I am using one of my four free minutes a day to ogle my best friend’s new baby pix. Why can’t I just get your simple “Lose weight kwik” and “Ever get that not-so-fresh feeling” ads? ”Learn a New Career”/”Triple Your Income in Three Days”-type solicitations? Or even “Experiencing Erectile Dysfunction?”

Please, world, let us relax, read and ogle in peace. Spare us the gratuitous references. Try to sell us only things we want to foolishly spend our money on to feel happy, fit, rich and virile all the time. And calm!

Thanks!

Love,

Full Spectrum Mama