First Anniversary Lists IV: The Complaint Department

Our Guest Writer, Partial/incomplete Monochrome Persona from The Complaint Department, has been working hard to bring you this list.  Warning: Partial/incomplete Monochrome Persona, or PiMP for short, has compiled and macro-infested the bitterest and snarkiest elements of Full Spectrum Mama’s first year, many of which Full Spectrum Mama might not even have noticed, saintly as she is.

1.     The Make-Your-Own-Problems Division.

We make most of our own problems. The Complaint Department suggests you unmake – or contend gracefully with – such self-created problems.

Therefore, The Complaint Department maintains a strict non-acceptance policy in its Make-Your-Own-Problems Division.

2.     Bullies.

Yuck.

Can you believe bullies are real? Grown-up bullies, too! Solo-style, as well as Group Models, including Mean (Old) Girls (and Boys), Institutional and Family-Pak…

Children who bully often learn to do so at home. Watch out for their parents.

Those in the school-disability-“special education” worlds who bully often do so from budget and staff frustrations. See if you can get through the armor to the love of children that brought them there in the first place. Bonne chance!

But, okay, sure. Complaints about bullies are acceptable during regular business hours.

3.     Sorry.

Say you’re sorry. No, PiMP does not care what happened OR whose fault it is and don’t Make The Complaint Department have to Pull This Car Over.

Oops! Sorry, wrong medium.

4.     Help.

If you have a partner, if you have a babysitter once a week, if you have a choice between working and not working (vs. those who must work), do not complain about not having any help. The Complaint Department knows far too many struggling single working parents to accept complaints in this area.

      a. Have some perspective, people.

5.     Snacks.

There is a required ten-minute minimum time-lapse between the asking for of the snacks.

Furthermore: If, sequentially, you have asked for and received, a banana, a cheese stick, a clementine, a yogurt squeezer, a bowl of cheddar bunnies, a granola bar, baby carrots and hummus, and raisins and nuts and an apple, that is enough.

6.     Money.

If you have never spent weeks worrying over running out of toothpaste, or had to choose between

a.     raiding those expired bags and cans at the back of the cupboard and paying for heat, or

b.     going grocery shopping,

do not complain about money.

Except, perhaps, to others of your ilk - but definitely check their ilk to be sure.

Yes, we at The Complaint Department know that you say things like, “We’re all struggling right now” to express a sense of, “Wow, I get it,” but that’s just trifling.

You know who gets it? PiMP and her friend over here who both just bought one bag of cotton candy even though we each have two children because those bad boys cost FOUR DOLLARS.

Please see 4.a.

                  The Complaint Department will only accept complaints about money from those with a  
                  generously allotted income limit of $30,000 and below. (F.Y.I.: it is remarkably easy to
                  join this select group, albeit exponentially harder to leave.) Most other complaints about
                  money will be deemed to fall under Rule 1, above.

7.     Children.

                  If you have mentally and physically healthy, neurotypical children, do not complain about them under most circumstances.

In particular, you shall not complain about them to people who have no children, whether by choice or via “the slings and arrows of outrageous fortune."

Nor shall you complain about them to people who have children who have issues of health, learning differences, disabilities, sensory or social issues or other significant differences or impairments…

If you must complain, then kindly preface your complaint with, “Praise the universe, I am very lucky to have such an easy life compared to the lives of those with harder lives” (which will probably be answered with “Praise the universe, I am very lucky to have the child/life etc. that I have…” BUT the preface should still be uttered as a preventative measure).

And please see 4.a.

8.    Speculation and Normalcy.

The Complaint Department thinks everyone is REAL SPECIAL. How did they get that way? We do not know. How should you act around them? Ditto.

Our affiliate, Rachel Cohen-Rottenberg has formulated some great models around dealing with people. Here’s one: http://www.disabilityandrepresentation.com/2013/01/28/how-to-talk-to-normal-people-a-guide-for-the-rest-of-us/

9.     Special Dispensations. 

True Friends, Wise Ones, Elders, Those Who Get It, Family Members from Group A,* and, generally, people who don’t take themselves all that seriously or are seriously cute (such as some children) are not subject to the above Complaint Department Guidelines.

Now that The Complaint Department has brought you this exhaustive list, The Complaint Department is closed. The Complaint Department will re-open on the 32^nd of Nevruary.**

Sincerely,

Partial/incomplete Monochrome Persona

* Family Group A is a generic term for certain members of all families and consists of non-offensive family members.

** Thanks to Uncle G. Fullalove (Family Group A+) for introducing the Full Spectrum family to this convenient date.

First Anniversary Lists III: Choosing your Battles

One initially formative idea for Full Spectrum Mama was that if something worked in our household it might be useful across a wide range of circumstances (consistent boundaries come to mind). Or, at least, our mistakes might prove instructive (diarrhea [still working on that one]).

But surety in these complicated times has never been a strong suit of our household. Readers have been more likely to laugh or cry with us than to follow my commands.

The first thing that comes to mind when I think “parenting solutions” is, um, drinking…For those who are not struggling with substance abuse issues, may I suggest a moderate portion of your preferred mood altering substance? FSM never cottoned overmuch to vino until single motherhood hit. Now, if she can remember, a glass of wine or beer definitely eases dinner and bedtime transitions [note to self: make note to remind self to drink wine].

And then there is the “solution” – much needed in a Full household - of picking which issues and behaviors to address and which to drop. In the matter of choosing battles, the grandmama of all battle-choosing advice comes to mind. Sure, it’s a cliché. On account of because it’s super wise:

The Serenity Prayer 

God, grant me the serenity to accept the things I cannot change,

The courage to change the things I can,

And the wisdom to know the difference.

Or, for those who are not religious or do not feel that serenity comes from “God,” here is a version from The Serene Atheist (http://sereneatheist.blogspot.com/2009/10/secular-serenity-prayer.html):

Through my efforts, I gain the serenity to accept the things I cannot change; 

courage to change the things I can; 

and the wisdom to know the difference.

 

Years ago, during an unrelated family mental health scenario, I learned that some traits are known as ‘characterological.” This term refers to aspects of personality and behavior that are neither strictly psychological nor neurological; instead, they are character traits – good and bad – that can be remarkably hard to change. Such traits are not reflections of mental illness or neurodiversity per se but have to do with the will and desires and tendencies of any individual. Thus, one might be characterologically prone to greed or generosity, kindness or cruelty; one might be shy or bursting with flair, honest, sneaky, sunny- or surly-natured…

Character can be worked with, its better aspects supported and its lesser elements healed and diminished; but it cannot really be eradicated.

It’s useful to try to get a handle on what’s what in this area, and to know which behaviors are

unhealthy, pathological or reflections of disorder

or

functions of disability or developmentally appropriate

and which are

basic, natural self-expression.

This can bring some insight as to whether or not – and possibly how – behaviors can be ameliorated.

It’s also imperative to know as much as possible about your unique circumstances so that you don’t lament OR excuse inappropriate things, or confuse character with a difference, disorder or disability.

For example, it’s hard to say how much of G’s generosity comes from his character and how much from his Aspergian non-attachment to most material goods. Part of my job is to help him develop enough common sense to distinguish between generous and reckless giving. Z’s giant hambone consists of one part attachment disorder and one part inborn characterological star quality. She needs to learn how to balance and channel that energy, but she will always be a VIP.

Figure I – A FULL Spectrum: from (foreground) Z’s jumping into front of the camera-field “Hi, Look at ME: I am fabulous! All The Time!!! Hey! Did you look away? Hi!” to (background) G’s looking-away expression of “Stripes. Stripes. Striiiiiiipes.” Not to stereotype, but this is…typical. (At the Sol Lewitt exhibit at Mass MOCA.)

The camera lens has captured Z in full form, oozing pizzazz. I cannot imagine telling her to back off or tone it down.

G’s absorption in art here seems part poetic, part flakey, part characterological, part Aspie. What should I do to get him to look at the camera for once, shout at him? I could say, “Pay attention!”

Nah.

Everybody’s got their stuff, right? Whether you (or your child or someone else) are attachment disordered, on the autism spectrum, wonderful in 99 out of 100 categories, mentally ill, spoiled, temporarily or permanently sweet or grumpy or cranky…having a solid perspective on what can (can’t) be changed and what should (shouldn’t) be addressed and healed can be immeasurably valuable in the day-to-day. Knowing what’s what – insofar as that is possible - can help you choose your battles!

Choosing Your Battles List

1.     Safety issues are non-negotiable.

2.     Public humiliation issues are at the discretion of the individuals involved. Only YOU can gauge the unbearable, loathsome edge of your acceptable-humiliation zone.

3.     Is X expressing his/her character or his/her pain/disability/disorder?

4.     Is Y able to change his behavior him or herself or does s/he need help from you?

5.     Are you able at this time to offer that help???

And…

6.     The Ultimate Battle Choosing Question: Can my child (or I, or those involved) learn, benefit, grow or heal from this situation, or should I just let go/accept it?

I have turned this information into a Flow Chart:

                                            Figure I – Choosing Your Battles Flow Chart

This handy, dandy flow chart may help channel typical concerns into decision-making success. As a bonus, options for simple suggestion as well as actual intervention are included in each branch. Whenever I am mired in a real-life situation I always make time to refer to a list or flow-chart, which I naturally have at the ready.*

Next Week: my final anniversary list: "The Complaint Department."

Love,

Full Spectrum Mama

*…in my dreams.

First Anniversary Lists II: Attachment Disorders

An attachment disorder can be very isolating. Whether your experience is as a parent, as someone with an attachment disorder yourself, or in dealing with someone close to you, knowing others are in the same boat can help you feel less alone. Count us in on your AD boat, friend, and read on!

Here are some things I wish I had done and/or known earlier about Attachment Disorders:

Attachment Disorders

1. Get professional help. Healing attachment disorders is tricky and time-consuming and entails very specific directives rarely (if ever) arrived at through trial and error.

Most loving, engaged parents or caregivers will never come to therapeutic parenting by their own logic. Parenting an attachment disordered child can be counterintuitive and require you to do things that defy your culture and instincts in order to help your child heal. Caring closely/intimately for any person with this potentially debilitating disorder will entail similar adaptations.

2. Several readers came to FSM casually, only to suspect -- having learned more herein -- that they or a loved one might have an attachment disorder. While I am not a neurologist or psychiatrist (big disclaimer!), I am a pragmatist. I do hold that in some cases if a model of care works for you, professional diagnosis may be a secondary concern (disclaimer: of course, see #1!). 

3. Whether you are dealing with a child or an adult, a loved one or an unloved one, or yourself, know that disordered actions – however manipulative, cunning, cruel, sneaky, dishonest, controlling or aggressive -- come from deep pain and fear. If you are truly experiencing an attachment disorder, you will need this compassion in times to come.

4. In an attachment disordered context, therapeutic parenting means setting strong boundaries and following through on every. single. goshdang little thing in order to build feelings of safety and trust.  

We were able to see instant positive results in many areas when we shifted to this form of care. Tantrums, for example, have been a great field of progress for us (so long as I handle them as advised; every once in awhile I am all, “&&%$# it!” and then things can get ugly: once the tantrum train is in motion it is VERY hard to stop). Other aspects of our lives have progressed much more gradually, and some have seemingly not changed at all.

Take note of emotional and practical steps forward and remember them during difficult moments and times when being a boundary vigilante has you bushed.

5. That said, you will get tired. It will sometimes be hard to see your child’s (or another person’s, or your own)  heart through the oft-constant challenges and maneuvers. The more attached an attachment disordered person gets, the more they push – because they care, and are scared about that caring.

One thing that works for us is for me to get close to Z and really look at her, and into her eyes. Pausing that way, and letting the love rise to the surface – though not something I am always willing or able to do – almost always reminds me of the truth of our relationship. It reminds me that we should none of us be defined only by the manifestations of our pain.

Humor works, too. Actually being funny in those very special moments is Not Bloody Likely. So what about the absurd? “Oh yeah? You are going to tell me that you did not take this rotten food item that is hidden in your pillowcase? Well, I am going to tell you that I am going to Get in that SPACESHIP out there and fly to a planet where everybody wears pillowcases full of rotten food at all times. And if you Don’t wear your rottenfoodpillow you are very WEIRD. So I am out of here.”

Give yourself a break, and another chance. Same for others.

6. Get support. Find others who are faced with this unique challenge and lean on them for advice, mutual comfort, and commiseration, as well as for the sharing of hopes and progress.

You are not alone. Probably, you are doing your best.  Here’s to hope, love, humor, strength, patience and second (and third…) chances…

Next week: Anniversary List III.

Love,

Full Spectrum Mama

First Anniversary Lists I: Advocacy

When G was a colic-y newborn, I made a list for myself so that I could remember the main reasons he might be crying. Actually, I made a few copies of the same list, and placed them around my tiny East Village apartment in hopes that

a. I would somehow see them and then,

b. remember to read them and then,

c. Know What was Going On. The list read as follows:

  Is [G]:

Hungry?

Tired?

Poopy?

Wet?

…Did you think I was joking?

Nope.

Often, I couldn’t remember to look at this exhaustive list -- and so was frequently perplexed by G’s vigorous and frequent crying.

What, I continue to wonder, was quite so hard about having a healthy (if fussy) newborn?

Okay, sleep deprivation. Yes.  And, sure, complete re-evaluation of life plan and goals and appropriation of all time by baby. But: newborns can’t walk or go anywhere by themselves! They can’t even crawl. All the same, there I was, like every new parent, near-paralyzed with overwhelmitude.

Insofar as I can remember, though, when I did happen upon the list, it was quite helpful.

Eleven years later, one year ago this month, I was inducted into a very strict and demanding writing group. Having considered myself a writer all my life, this made sense. But for the last decade I had been writing in only the most limited fashion.

We had less than a month to produce something…and I had no idea what to write!

I sat down in front of the computer and found that I had but two thoughts in my head: one, “write what you love,” and two, “I love my kids.” I began to think about something that had been tickling at the edges of my brain for some time: the notion that my children -- both of whom are considered “special needs” and “high needs” -- sometimes benefited from very different, one might even say opposite, parenting styles and, other times, needed very similar treatment for very different reasons. I wondered if our travails might be humorous and/or inspiring and/or comforting for others. Having never even considered doing so before, I suddenly found myself starting a blog!

A year later, I have written dozens of posts, and they have been read by thousands of readers. The process has been tremendously rewarding, and I am deeply grateful for the support and wisdom that has come our way through public and private comments.

In my last post (http://fullspectrummama.blogspot.com/2012/12/process-represent-toot.html), I was struggling with a number of questions around education and services and things got pretty wordy. After posting, it occurred to me that it might be more helpful to offer what I learned from that situation in a more accessible format.

I’m still prone to making lists, and subject to forgetting to read them. The process of making them, though, has its own rewards, and, here, my purpose is practical: the possible sparing of even just one person some fraction of the ridiculousness and cluelessness that is abundantly available to us all. So, to celebrate the one-year anniversary of Full Spectrum Mama, I decided to condense a few of the things I have learned this year into lists, mini-manuals that I hope will be useful and won’t take too much of your precious time to wade through...

We are still working – often ineptly, generally without definitive answers -- on diet, the social piece, executive function, body awareness and a plethora of other good stuff. For my first celebratory list, I condensed my experience in the world of navigating school as the parent of a non-traditional learner. While this list is entitled, “School Advocacy,” it might also be applicable to other bureaucratic situations in which advocacy is required.

School Advocacy

1. Know your terms and your rights! I cannot stress this enough. You want to be taken seriously, and to present an aura of knowing both the facts around disability, learning differences, “special education” programs and schools AND your options and the protections and programs available to your child. If you are informed, you are able to present yourself as someone to be reckoned with, and thus, in a time of limited resources, your child is less likely to get lost in the system.

2. Wear something to important meetings that makes you feel powerful.

1. Remember to use a lint brush before you attend the meeting.*

3. Know that those you are dealing with are probably good people who got into education (and “special education”) because they wanted to serve and help children; know also that politics, budget concerns, and egos, too, will have a place at the table. Take names. And do everything you can to keep the focus on getting your child the help that he or she needs.

4. In case your child does not qualify for services in one area, know your areas of qualification in order to explore other possibilities for getting him or her the help he or she needs. In Vermont, the areas of adverse effect are Written Expression, Reading, Math and Orientation/Mobility. Sometimes a 504 will do when an IEP won’t – and vice versa. You may have to be extremely persistent or change tactics if one door closes…

5.  Review ALL documents very, very carefully.  Small errors (for example, one report stated that my son had a diagnosis of “Asperger’s disorder;” this morphed, as my correcting email crossed the paper trail, into - and I wish I was joking here - "asperberger's disorder") may have large consequences later on. If the materials are daunting (chances are they will be), try to find someone to review them with you. Every state has advocacy groups that are willing to assist you in this process. In Vermont, the Disability Law Project (http://www.vtlegalaid.org/our-projects/disability-law-project/) is a great resource. 

6. If you find yourself in a position where you need to advocate for your child, you may be surprised by your own ferocity. (From a private comment on my last post: “Back in my days as a grant writer I did some work with special-needs students' parents.  My God, [FSM], they were the fiercest advocates I've ever been around!”).  On so many levels, you and your child will need what that ferocity brings. Just make sure to keep your demeanor a step away from cray-cray. (Please see #1.)

Next Week: Things I wish I had known earlier about Attachment Disorders.

Love and thanks,

Full Spectrum Mama

* Big thanks to Thistle, who suggested this in a reader comment.

Process, Represent, Toot

The Meeting

Just before the holiday break, G, whose autism spectrum disorder presents with a variety of significant motor and neural challenges, lost his IEP status. Having access to an IEP (an Individualized Education Program [or Plan]), or what used to be known as “being in special ed.” is federally mandated through the Individuals with Disabilities Education Act, but is administered differently from state to state. In Vermont, the threshold for “adverse effect” is testing below the 15^th percentile.  At his three-year IEP evaluation, G tested slightly above this percentile on one measure (reading), and substantially above on another (math).  Several of the nine people assembled in that room thought this was terrific news.

The rest of us knew they had used the wrong measures.

Those of us with children in the IEP system periodically receive giant stacks of paperwork from which we are meant to glean both

1.     what is important in our child’s life and

2.     which areas are open to our active participation.

Had I read – somewhere in the latest bureaucratic morass of information packets and forms requiring my signature - the single sentence, “We will be testing G on math and reading,” I would have taken notice. Had I understood this one piece of information, I could have told them weeks in advance that he wouldn’t qualify and could have saved my son a whole mess of unnecessary testing.

Unfortunately, however, I – holder of an Ivy League Ph.D. who reads every word in these piles – was unable to discern this simple fact in time. I shudder to think how those parents who are unaccustomed to giant morasses of the written word variety process these packets.

Fortunately, I was tipped off the day before the meeting that G was about to lose his IEP status. I thus was able to PROCESS the feelings and ideas that would have squished me (on my slice of the spectrum big feelings of any sort cause shutdown), and thereby prevented me from any meaningful participation…had they been new to me at the start of the IEP meeting.

For maximum authority, I dressed in my teaching clothes -- grown-up style duds in my requisite Goth black. In Vermont, not wearing denim and fleece is a badge of sophistication and, possibly (I hoped), power. 

The district brought in the big guns, the Director of the district, to break this news to G’s “team.” I believe they expected G’s teacher and I to be cowed but we were not. 

G’s teacher was a fierce and compelling advocate, who came prepared with an arsenal of points in favor of G’s continuing on an IEP. He asserted that ALL of G’s teachers feel very strongly that he needs to be on an IEP; that indeed his Literature Circles teacher says he is “the one child out of 40-plus in his group who absolutely must be on an IEP.”

We were told that the Feelings of teachers don’t matter.

 We were told only “objective” measures can be used to justify (the funding of) a child’s (expensive) IEP status.

Dueling acronyms were bandied about, statistics parsed…

It emerged that it doesn’t actually matter if someone has a diagnosed disability… so long as that disability doesn’t place him or her in the 15^th percentile or below.

“He’s sort of a victim of his own success,” one “team” member explained, making the universal hand gesture for “gettin’ real high up there.” “These scores show that G is getting higher and higher up the mountain of achievement.”

Except - he’s not.

Where he used to get “Super!” and “100%!” (with smiley faces in the zeros) on his spelling tests, now that he is in fifth grade my gifted child can barely write a sentence. The PROCESS of writing a single word is very, very different from that of writing a sentence or paragraph. In writing more than one word, G loses focus. Although he reads at almost adult level and has marvelous comprehension, he misspells 50% or more of words. Without reminders, he does not capitalize first words of sentences, nor does he punctuate.

I was furious, but manageably so, since I’d had time to PROCESS: “Here is a kid, I said with deadly calm, “who should be testing in the 80^th and 90^th percentiles based on his intelligence, but because of his disability is testing in the bottom third and there’s nothing we as a school community can do about it???”

“Well,” the district psychiatrist informed me, “that is a symptom of a larger societal problem.”

“All we are responsible for,” added the Director, in a tone I read as smug (but I am not such a good reader of tone), “is providing a basic ‘free and appropriate public education.’”

”Then what is our purpose here? If letting our children down is acceptable to you, why are you here?” I asked.

There was no response.

So I continued, calling on some of the many ideas that had been racing through my mind all night: “I would suggest, then, if you want to help G you ought to test him on the measures in which he is falling behind. Please tell me the other areas in which students can be found eligible and [teacher] and I will let you know which of those are a good fit.”

“’Written Expression’ and ‘Orientation/Mobility’,” said the Director, after a pause.

“Perfect.” Said I. “Those are the very areas in which he is struggling.”

Having had the opportunity to PROCESS, I was able to question and to REPRESENT my son’s interests: to bust out my big words and my for-once tangibly-useful doctorate and the statistics classes I took in graduate school. Once again, what do parents who haven’t had the privilege of extended education -- or who don’t have the skills or confidence to stand up to Important People – do under similar circumstances? I could never have effectively (confidently, somewhat skillfully) advocated for G if I hadn’t spent the entire night before thinking about what to ask and say in this meeting. Spending my entire life in academia probably helped too. 

Do IEPs help?…Sometimes.

I was told in this meeting, and it makes some sense, that “the three-year evaluation is intended to protect students from being dumped into the special ed. system and staying there even when they have progressed out of it.”

Ambivalence is as much a part of this process as advocacy! I certainly don’t want G to be subject to – or feel himself – the stigma that sadly remains associated with being on an IEP. So why on earth would I want him to receive services if they were not crucial to his survival as a student? IF it helps him – does it? – I want him to have all the helpful help that can be helped…

Without any services, without aid with transitions and organization, G might get lost, “fall through the cracks” -- or he might “rise to the occasion.” He might be “just another gifted kid not living up to his potential”…

As his teachers and I watch the gap widen between G’s intelligence and intentions, and his written expression and executive function, we wonder if we will be able to get him the services he needs. His teachers serve dozens of students and are at the mercy of the system for their livelihood. While G’s teachers are more than willing to advocate ardently for G, there is only so much they can do. The rest will be up to his family and community. And to him.

A.A. Gill’s wise recent article in Vanity Fair (http://www.vanityfair.com/society/2012/12/aa-gill-schools-ruining-our-kids

-- enjoy!) gives pause to the notion that school success is the sole predictor of life success. But if G struggles academically because of his disability he should have access to help if he, in all good faith, wants to succeed in school! 

In effect, the astonishingly low “adverse effect” threshold in VT, coupled with unsuitable testing has turned my son into an experiment.

Process, Represent, Toot

As rough as the social piece can be for G right now, and as challenging as some aspects of school can be for him as well, my deepest, darkest fear, the one in my mind almost constantly is: what will G do when I am gone? I know some of you other parents out there feel me on this. Maybe he will be just fine. I sure hope so! But he might need some help and -- as any parent would -- I hope that when he needs that help, the help will be there.

Will it?

Here, G may be losing his elementary school safety net. Since one might naturally assume that childhood is where the best safety nets would be found, this raises doubts about safety nets in general. What about the bigger safety net for people, including adults, who are not neurotypical or are differently-abled? What about the “larger societal problem” to which the district psychiatrist referred???

With the recent stigmatization of Aspergers and autism in the media (please see previous post: http://fullspectrummama.blogspot.com/2012/12/ignorance-ahoy.html), it seems a fabulous time to begin to tackle these problems. Chief among them are ignorance and limited resources in schools* and communities. Advocacy both for students and their parents (not all of whom know their rights!), as well as education and community efforts around disability might be some directions to take whatever talents and energy we have.

So long as I have a good chunk of PROCESSing time, meaning I know IN ADVANCE what issues and objections will be raised, I should be able to lend my voice to these efforts. This IEP meeting was a great lesson for me about how to optimize my ability to REPRESENT my own and my children’s best interests. Like G, apparently, I need time to internally PROCESS and then transition into external expression and interaction in any potentially intense context. In this post, I am TOOTING my own horn about how I handled the whole thing, because I just learned so dang much. 

I want to use that knowledge to foster G’s ability to PROCESS his sensory and intellectual and emotional intake, so that he can best REPRESENT himself in his endeavors, and TOOT his own horn – stand up for himself and be proud and, especially, self-advocate -- when appropriate.

Resolution

G’s remarkably operatic three-year IEP evaluation began with some serious acrimony, officiousness and righteousness. There occurred pounding of tables, raised voices, trembling (not even by me!).  Praise be, we all managed to stay in the room until some consensus was reached. Thanks to G’s teacher and me, the meeting ended up with the team’s agreeing that G was not well served by the testing that had taken place. He will now be tested in the other two areas of eligibility in Vermont, “Written Expression,’ and “Orientation/Mobility.” 

So G is about to endure another round of testing, this time in areas in which he actually does have significant adverse effect. We shall see if it meets the criteria. If so, may the help he gets be targeted to his real needs. May it be helpful.

This is the hope with which many of us left this meeting.

As I walked out of the school, feeling I had just, for once, made the best of a difficult situation – i.e. for once I had not been completely overwhelmed  – I looked down at my “professional” all-black outfit with a feeling of maturity and satisfaction.

I then noticed that I was completely covered in white cat hair. Glad I didn’t find THAT out at the beginning of the meeting.

Love,

Full Spectrum Mama

* I cannot imagine the Director of the district got into the field of education in order to deprive students of services due to limited resources (which inevitably must result in tighter testing standards). This must be one of the most difficult aspects of the job.

Ignorance Ahoy

In this time of pain and grief and uncertainty I'd like to say, Thanks, local paper, for perpetuating rampant stupidity:

Re: "Windham County schools helping students cope," by Howard Weiss-Tisman, 12/18/12

To the Editor,

As friends, parents of and/or persons with autism spectrum diagnoses, we would like to clarify some important and potentially damaging aspects of Weiss-Tisman's article. 

He wrote,  "...the alleged killer, had Asberger's [sic] syndrome or some other personality disorder, it was important not to draw conclusions, or make assumptions abut [sic] other children who suffer from mental illness."  (http://www.reformer.com/localnews/ci_22212875/local-educators-respond-conn-killings)

Aspergers syndrome, following the publication of DSM5a to be known as an autism spectrum disorder, is definitively neither a Personality Disorder nor a type of mental illness. 

Persons with autism are in no way more inclined to violence than the average population; in many cases and in our own experience they are among the most gentle and emotionally empathetic people we know. In fact, persons with autism are significantly more likely to be Victims of violence than to commit it.
We support The Reformer's and all efforts to increase school safety. Our thoughts are with those who were impacted by Friday's terrible events. Let us be sure not to add tragedy to tragedy by perpetuating negative stereotypes around mental illness or autism. 

We ask that you publish this letter so that people in our community will not be misled into harmful and erroneous ideas about autism.

Sincerely,

[FSM, friends, family]

MILCS

I recently spent a morning meandering and gabbing with a beloved friend. As we walked along a magical, secluded trail, she showed me some special spots where her children play together. “We are here a lot because we can’t be in public right now,” she confided. One of her children is going through a period of strong tantrums and the effort and strain of it in the social scene is just too much. She admitted how ashamed she feels when her child throws a public tantrum and how her fear of getting caught in that situation has vastly limited her social life. How isolating it can be…Having read some of my experiences here (and heard about them in person and seen them in real life), she added, “You know how it is!” Oh yes, Mama, I know how it is.

This conversation reminded me of some instances when I had no choice but to be out in the world while my children were going through changes. Bleak times filled with helplessness, anger, sadness and humiliation for all…Happily, what also came to mind were the times when someone – often a complete stranger – gave me love, peace and strength just when I needed it.

Everybody knows what a MILF is, right? Well, I want to talk about MILCS: Mothers I’d Like to Celebrate. I don’t even know if some of these people have children…But they are MOTHERS, for sure. See if you don’t agree.

Once, Z was having a ghastly tantrum and I had taken her outside to avoid disturbing G’s tae kwon do class.  People kept walking by and either totally avoiding us or looking pityingly at the poor, poor little girl.  Poor, poor little girl was so angry (no idea why, this was a daily occurrence at the time…) that nothing I knew of (not hugs, not threats of Consequences…) would stop the screams of rage. I was near tears.

As I stood there, trying to shrink as small as possible while still indicating that the tantruming child had someone watching her (for what that someone was worth), a woman came up to me and said, simply, “Mom, you are doing okay.” She wrapped me up in her arms and rocked me a little from side to side and then went on her way.

Hey you, lady who just hugged a pariah, you are doing more than ok.

Oh, here’s a good one. You know when someone thinks your child with an attachment disorder has autism and that your child with autism is neurotypical, or vice versa? Yeah, that happens to me sometimes.

I was at this fantastic storefront Aztec-Mexican restaurant in Norwalk, CT called Molcajetes (http://www.ctbites.com/home/2009/9/18/los-molcajetes-seriously-authentic-mexican-in-norwalk.html) with extended family when Z threw one of her most remarkable, powerful tantrums of all time. Full Spectrum Grandmother tried to intervene and got kicked for her troubles…Pardner tried joking her out of it with no luck…

Over the course of the next [period of time, I am not sure how long!] or so I spent with my rocking, growling, kicking, screaming daughter out on the stoop, not one but TWO women with autistic sons walked by at different times and commiserated with me over what they thought was a textbook autistic tantrum.

“Oh no,” I told each kind mother in turn. “The one with autism is sitting inside eating nicely!”

When Z was good and ready she pretty instantly stopped being upset and went inside and, with a big smile on her face, devoured enough food (fresh, garlicky guacamole and soft tacos and just-fried chips with that incredible slightly sweet cabbage salsa) to feed an army, which is kind of what she was. You need fuel for that kind of sally!

When Z was younger, I often felt as if people judged me as a mother for her behavior. I wished I could maybe wear a sign that said, “This is not a normal tantrum. I have tried everything you (or I, or anyone) could imagine to stop this tantrum and many others like it. Yes, my daughter was just hitting me and screaming as if I was hitting her but I was not, actually, hitting her…, as you can see right here with your own eyes. In fact, your staring at us might even fuel this little situation we got going on here. Now, please, I just have to sit here and wait it out so I would be so grateful if you would stop giving me dirty looks.”

Now that Z is a little older, people can tell her tantrums are not just run-of-the-mill. They can see that she is older than a “normal” age for tantrums, and that she is writhing and screaming, extensively, without any input. They seem somewhat less likely to be appalled -- and rather more likely to feel compassion for both the parent who stands helplessly witness to such an event and the child who cannot extricate herself from it – or let herself be extricated...

G has his moments too, whether from his really rare but quite memorable public tantrums to his more common general inappropriateness/cluelessness, not to mention flailing.

One time, after a hard day, I said to G as we were leaving a local co-op, “You have the most important thing, a kind and loving heart. Now you just need to pay attention to the world around you and work on your common sense.” (This is one version of my ad-nauseam-aforementioned Pay Attention to the World lectures.)

We had gotten into the car and had just begun to pull out of the parking lot when a woman with a silver bob wearing a striking purple jacket and lots of chunky silver jewelry waved me down, practically throwing herself in front of the car. Thinking maybe I had forgotten one of my organic, vegan, sustainable, equal-exchange, wallet-straining purchases, I stopped and rolled down my window.

 “That was one of the most inspiring things I have ever heard,” she told me. “It will echo inside me for a long time. Thank you.”

No, thank you, Ms. Silver-Purple Angel-Person. I will never forget you.

I tell these tales not to brag or make it seem like I am doing such a great job that was duly appreciated by these wise women (ha!), but to share that these women actually made it possible for me to Go On. Their simple acts of generosity have resonated in my life for months and years. They allowed me the space and peace in which I could settle my heart back into love for my children instead of fear. They made it possible for me to celebrate my children, just as they are, and so I celebrate them.

Just so, I hope when my friend who is stuck in the woods for now with her clan reads this she will know how truly I honor her finding a way to celebrate her children through it all. In addition, I hope she will encounter surprising (yet very welcome) love and acceptance when she does have to put herself and her family “out there,” just as I did with these MILCS: huge-hearted strangers, generous-spirited everyday angels who just

Went For It.

And guess what? We can all – in some way - do the same.

We all have the mental capacity to recognize opportunities to grow our hearts, to stretch a little or a lot. Sometimes it seems like we don’t have the emotional capacity to execute such acts of kindness and generosity, whether it’s due to emotive stinginess (high on the fear spectrum, no?) or the shyness of those on the awkward end of the social spectrum. It’s probably easier to be surprisingly kind to strangers, as these women were to me, but we encounter countless such opportunities of all sorts every day. And I am not talking about the somewhat trite “random acts of kindness” trope, because these acts are more than random. They are necessary.

You never know when your small action may make a real difference in someone’s life. Plus, I suspect our capacity to be generous and kind grows with the PRACTICE.  Be grateful for any everyday angel you meet…and pass it on!

Lest this seem preachy, I should add I’ve no idea what a generous spirit means to you in particular and no advice beyond the suggestion that choosing kindness at a given moment may resonate more than you’ll ever know.

Thanks and love forever, MILCS, and all you others trying to make sure your heart isn’t several sizes too small, and all y’all who are just plain trying,

Full Spectrum Mama