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.