Second Anniversary Lists I: Advocacy

This time last year, we had just fought a grueling but successful battle to retain G’s IEP. He’d erroneously been tested for reading and math – his two best subjects – and been removed from eligibility because of the not-surprisingly good results of those tests…Meanwhile, he was barely able to write a word, a sentence, a paragraph…

We’d “won” that fight, with the help of his teachers and principal, following a lot of foot dragging from the district; what we still had to contend with a year ago was a relatively homogenous school environment and a child who struggled with expressing himself coherently in writing and felt bullied every day.

I shared what I learned from that intense experience in this post: http://fullspectrummama.blogspot.com/2013/01/first-anniversary-lists-i-advocacy.html. If you are looking for basic tips on advocacy, this post is the place to go. Please see the list toward the end for my pointers on dealing with bureaucracy, and IEP and 504 meetings, and addressing your child’s/children’s needs in institutional settings.

In retrospect, I can see that – much as I adore and respect the heck out of him -- beyond words!  Puh-lease!!!! -- on a subconscious level I was seeing G as in some small way a part of “The Problem.”  Now that he is in a more diverse environment, with students who are comfortable with a mix of people, and teachers and administrators who are accustomed to kids on the autism spectrum, a lot of things have eased up. 

As always, this is what worked for our family. In the balance, making the choice to move our entire existence was the right one for us. It was also a huge gamble, a chance not all families are able to make (and we have BARELY made it -- whew!) -- and one that I am happy to say paid off in our case. Autism was less common in G’s old school and this impacted every level of his experience, from institutional to educational to social. Obviously, G is still on the spectrum, but his present school is more of a spectrum too. For him, for us, this works.

And so, without further ado, my first second anniversary list:

School Advocacy II

1. Context matters. A tiny, cozy school where everybody knows everybody might be the right one for your child. Homeschooling might be the right choice for your family. Or perhaps your child will do best in a big school with lots of services and a wide-ranging student body. Maybe an alternative/private school might be your chosen option, if you can afford it, or are able to access scholarships or school district support. My point: the impact of environment can be more profound than one realizes.

2. Sometimes Change is necessary. To say that change and transitions can be challenging for our Full Spectrum would be a vast understatement. Sound familiar? If stuff isn’t workin’ out too well as it is, though, you might consider changing things up.

Little changes can matter too: does your child lose focus while doing homework in isolation (something you might’ve arranged to minimize distraction…)? Try using noise-canceling headphones in a more-busy area and crunchy carrot sticks (haha, I meant chips) to keep things lively.

Bigger changes, like moving and changing schools, obviously entail bigger risks – and possibly bigger benefits too.

Ease changes where you can with strategies such as advance notice, clear scheduling, and comfort measures – soothing (or stimulating) activities, food, objects…

           

3. Stay vigilant.  Isn’t that just great advice? Yeah, even when things seem fine: stay vigilant. Pfffft.

But -- wouldn’t you know it, as soon as I felt like the school had things well in hand I sorta…exhaled…and took a little breaky-poo? Next thing you know G is failing certain assignments and I am called in to a Meeting and then I am writing my Meeting Friend this text:

“[Censored]! I forgot about speaking up just nodded and said I will talk to [G] when in fact they did not do right by him or create an environment where success was possible. Help! Must regroup. But I am okay. Just entered brief complacent fugue state and now will triumph…somehow ;) p.s. Don’t worry. Am bemused but okay. Forgot [G] has disability.”

In this particular instance, G was failing a months-long writing project because he was overwhelmed by the combination of his classroom environment and learning new technologies and skills on the computer.  He’s at a point where he might be able to handle one of those things and still reach his potential, but not both.

So I wrote his teacher along these lines:

Dear [teacher],

Thanks for meeting with me yesterday.

I was really left with two different thoughts after our meeting: on the one hand, [G] does need to learn to buck up, get it together, ship shape, etc. but on the OTHER he does have a disability that we need to accommodate and work with to best bring out his potential.

I do feel that his failing this project because of new-computer frustration would be a shame. Clearly, he was overwhelmed by learning new skills in a busy environment, which is typical for him as well as many children on the autism spectrum.

I will work with him at home. Hope you can give us an extra week or so to whip it into shape in a low pressure-high achievement environment ;)

Thank you,

            [FSM]

His teacher allowed him to take some extra time and he ended up with a decent(-ish) grade on the assignment.

Yay vigilance!!! Just because a school gets a wide range of students doesn’t mean you won’t have to advocate from time to time…

4. Cycles: Know that there will be cycles of advocacy challenges. After a recent blessedly calm, several-week meeting-free stretch I witnessed with chagrin my Meeting Friend looking stricken while being collared by the principal at pick-up. I was unable to get to her before she rushed off with her child, so sent I her psychic and text support and planned to call her and inquire. A few minutes later, Pardner called me and said the school had called US because G had gotten “agitated” over a computer imbroglio (see above). Anyway, when I called my MF to check in, come to find out her child, too, had been “agitated” that day. Wheee.

            5. Services:

In this larger, more-inundated school, G no longer qualifies for many of the services he received at his last school. Part of this – in PT and OT -- is because of great past work by amazing physical and occupational therapists; some progress is G’s own hard work. But it’s also because the standards of qualification are more stringent. And I do worry that G will fall way, way behind again. His early motor skills and kinesthetic test scores were typically all at the very lowest end of low.  Now that he’s low-average, will he continue to grow and improve without help? Or at least not regress? Please see #3…

G no longer has a one-on-one either. This is because his classroom already has three embedded paraprofessionals in addition to a highly effective, gifted, funny, experienced teacher. Do these three have enough time to get to everyone who needs their attention? Again, see #3.

At the same time, G’s new school offers a lot of services, particularly in group-settings, that were unavailable at the small school he previously attended. I feel like G’s needs are being met in different ways, and that we are in a basic state of balance between services and mainstreaming. But I am also ready to put on my official clothes and use my lint brush and march in there at once if necessary. Luckily, the parties involved do what they do because they care about children and education, so I do feel we are all on the same page as to wanting the best for G.

If you do not feel this way, if you and/or your child/ren is/are in an environment where the powers that be do not share this best-wanting intention, and are reluctant to change, you may need to advocate more powerfully OR see #s 1 and 2.

6. Treats: I am going to write more about this in “Second Anniversary Lists III: Choosing your Battles,” but I am impressed by the power of treats.

a. Treats for Students: G’s new school uses sugar for almost everything and it works. I know, I know: sugar. Regular readers will be well-informed of our sugar aversion. I cringe every time G shows up after school with a neon-colored lollipop. But positive reinforcement – what does your child love/crave? Maybe it doesn’t have to be so ghastly? – can make the difference between a child who is functioning, even thriving, within school boundaries and one who is flailing and failing.

I know G’s lollipop represents his sitting in his seat, or not interrupting, or closing the bathroom door…and since sugar affects him less than it does me, I make the choice to allow it. I mention this in this here Advocacy piece because working with your school to put a system of treats in place for rewarding positive behaviors might really make a difference for all parties concerned.

If you can figure out what really might feel like a treat to your child (or yourself, or your student, or your roommate, or partner, or…) -- whether it’s praise, hugs, Pokémon cards, screen time, or something else, perhaps something unique (but it must be something

Clear, and

Consistent)

-- you can begin to assess whether that individual responds well to this sort of system.

            b. Treats for Advocates: sometimes necessary.

            c. Treats for All, for No Particular Reason: also sometimes necessary.

Regarding these treats prescriptions, remember: Full Spectrum Mama is a Doctor [of philosophy].

Strong and effective advocating to you,

Love,

Full Spectrum Mama

THE GLOBULAR SPECTRO-CONTINUUM

Someone posted this on my Facebook page:

         Figure I – ASPERGERS Acrostic Meme

A bunch of autistic people, people with autism, parents of autistic people and parents of people with autism (bear with me on these labels, just tryna make everyone happy!) responded.

At some point, early on, someone in my extended family commented as follows:

ummm.. Well I know it's uncool to say it, but those things apply on a LOT of levels to many people, even those not on the spectrum. Aren't we all on the spectrum to some degree? I mean that is what a spectrum is, from the smallest degree to the most challenged. We all fall on there somewhere.

Then, perhaps fearing the Wrath of the Autism Spectrum, that person removed the above comment before anyone had a chance to respond.

But I thought it might be a good inroad for an important and necessary conversation. So I saved it and thought about it and here’s my answer:

Short Version:

…Yes!

And…No!

Long Version:

Yes, by all means, I hope people DO feel included – in general and in this here Full Spectrum! I want neurotypical people and non-neurotypical people and everybody in-between to relate to each other with empathy and compassion. I hope very much that people relate their own “endless talking” or “rigidity” or “giftedness” to those qualities in others, and therefore become more open and accepting. I think that’s the kind part of the intention in this comment.

Finding out about Asperger's syndrome (now officially known as an autism spectrum disorder) through having a son with that diagnosis has certainly helped me with my own lifelong struggles with a different neurology (diagnosed only later in life). Based on what people have told me, this blog speaks to a variety of individuals who relate to our experiences, not just vis-à-vis autism but attachment disorders and family stuff and “human being” as well. In terms of specific differences, readers have told me they’ve recognized attachment-disordered traits in family members and themselves and that our experiences have helped them deal better; same for autism…

As for the actual person who made this comment, I would say that we are related and we share a lot of neurology. Many of these above traits, like being “sensitive to criticism” or having an “advanced vocabulary,” do run in families -- whether from culture or genetics or both.

Besides, things like a tendency to be “easily distressed” and being “socially challenged” are not restricted to people on the autism spectrum and their families. Nor are being “gifted” or “remiss” &c traits of only people in the special autism spectrum disorder/Asperger’s association.

BUT!

[Names of commenters on this post] and I, indeed all of us who are on the autism spectrum and/or are raising children who are, experience moderate to severe social challenges and neurological differences that affect all of our lives in significant ways. Some of us don’t just “relate” to the traits on this list, we are defined by them, especially by others – and most especially by the neurotypical world.

 Much as we hope to

help our children/ourselves accept and/or transcend disability and/or

celebrate their/our unique qualities and/or

work toward a culture where neuro- and other diversity is a given and all neurologies and disabilities and differences are

            VALUED

RESPECTED and

TAKEN INTO ACCOUNT,

our children (and sometimes we ourselves) experience challenges (and sometimes need services and accommodations) that most others, quite simply, don't.

We’ve had to fight hard for our kids and ourselves, at times just to hold steady at “okay” or “barely okay.” We’ve got IEPs,* 504s,* behavioral plans, stacks of test results…Most of us have daunting piles of (mostly unread) books on the trajectory from Sensory Processing Disorder onward…Sometimes we have to get babysitters for our teenagers (if we can afford it – my average is twice yearly).

We have to wade through mountains of labels and advice from specialists and experts, and consider (or not! [and then we have to deflect!]) “cures” directed – mostly well-meaningly – at ourselves, our parenting, our differences, our children, our families…

We frequently get asked to participate in unwanted meetings -- and then we have to wrangle for the meetings we do want.

We get called in to school when our kid is quacking in assembly; when the teacher wants to meet with our child’s class without our child present to explain why s/he is not “weird” but “different;” called in because our kid is ‘agitated” over a challenge a neurotypical kid would not even notice, such as a change in routine…

Do these things sound familiar? If not, then you and/or your child probably do not have autism or, for that matter, some other “special need.” I am not trying to say those on the spectrum are members of some exclusive club, I am trying to be clear on what is what:

Having autism/being autistic is NOT something everyone shares. There is an autism spectrum, and there is a spectrum that leads, in spectrum fashion, up to that spectrum, but it is not the same.

The same might be said of an attachment disorder spectrum. My other, non-autism-spectrum-y child does not have a Severe attachment disorder, wherein people are unable to form meaningful connections with others. On the attachment disorder spectrum, she falls on what’s known as the Mild to Moderate attachment disorder section, where attachments are possible but often fraught. Healthily-attached children without attachment disorders may share some traits that are deeply familiar to parents of children with attachment disorders (such as controlling behavior or hoarding), but that does not mean they have the clinically defined condition known as an attachment disorder! (More on this below…)

All behaviors occur in populations to varying degrees and in a myriad of combinations. When an individual is found to be “out of the ‘norm’” – by the schools and/or parent(s) or guardian(s) --  they usually get evaluated and labeled and their differences may then be addressed within that paradigm. This process alone can be deeply grueling.

It may also sometimes be rewarding, at least insofar as it may offer insights for interacting, processing, succeeding in a neurotypical (and/or relatively healthily-attached, and/or typically-abled) world. With that in mind, Full Spectrum Mama investigates daily life with a bunch of people who happen to embody some useful labels -- but are more than just these labels! -- in hopes of offering something worthwhile shining out of our Full Spectrum.

Respect for neurodiversity is a key theme for the Full Spectrum Project -- and I believe that’s a piece of where my erstwhile commentator was coming from, as well as the intent of the above acrostic.

One of the greatest things to come out of the neurodiverty movement(s) is this idea that the ideas and thought patterns of divergent neurologies may be equally valid and in some cases superior. Before, we might’ve been inclined to dismiss ourselves. Now, we are gradually coming to value different perspectives more – even if the wider world has a ways to go to catch up.

Divergent neurology is, apparently, becoming more and more common -- and as such one hopes it will be less and less marginalized, less often dismissed as “remiss.” I hope, though, that increasing acceptance and diversity never amount to attempted homogeneity!

I’ve always been openly against moral relativism – the idea that all moral views deserve equal respect and are equally valid - on this blog and as a longtime professor of ethics. But I do espouse “neural relativism:” the idea that all neurologies are worthy of respect and consideration. This is not to imply that they are all the same: commonalities do not necessarily mean shared identity, status or diagnosis. To suggest that they do, as my dear commentator seemed to be doing – however briefly – might seem to trivialize the very real struggles many of us face.

Here’s an example: if you have received a diagnosis of an autism spectrum disorder, you know that your neural processes are “not normal.” What does this mean, exactly? For many, it has historically meant reduced self-trust, a devaluation of one’s “wrong” thinking. This is changing. Today, many of us contend that knowing your thought processes, sensory processing and reactions might be different from the mainstream is useful information, but it doesn’t mean we should thus dismiss our concerns and conclusions based on that divergence!

The mainstream certainly keeps things somewhat on track, but it has also brought us witch hunts, slavery, centuries of marriage inequality, Britney Spears, Monsanto, “Black Friday,” the 1%, dodgeball, Flamin’ Hot Cheetos …

Knowledge is power. A self-evident and over-quoted phrase? Maybe to you (or maybe not!). Until I began to learn about my son’s and my non-typical neurology, until I began to address certain needs (such as sensory breaks) as needs, NOT preferences, I spent a lot of time feeling as if I was an alien being assaulted by humans and environments (tangent: animals were my salvation). Migraines were (and are) a major factor in life. Other people’s’ brains and actions were so opaque to me that I tended to doubt myself and give others credence when I should not have and thereby made myself vulnerable to exploitation, an experience many of my spectrum-y friends share. The incidence of exploitation and abuse is anecdotally higher among those on the autism spectrum. I do think and hope that this terrible pattern is changing with increased knowledge and awareness.

Learning about the neurodiverse brain has shown me, finally, how to set boundaries and how to trust in myself, and to teach my children to do the same. I hope G is learning these skills in time to spare him much suffering. I hope it can make him feel less alienated, less “socially challenged,” more connected.

Having a daughter who exhibits the mirror opposite of the “typically ‘autistic’” traits exhibited by my son (and, in many cases, by me) has given me a lot to chew on in this idea of connection. Learning about attachment disorders has also shown us how to set boundaries for Z and build her self-confidence and trust -- in us and in herself.

In short, we’ve seen how the tools affiliated with certain labels and diagnoses may be effective (or, plenty of times, not) in a wide range of contexts.

In this conversation about commonalities, meaning and context also play a huge role vis-à-vis appropriate tools, labels and analyses. When a healthily-attached child of four has a massive, age-appropriate tantrum, that’s healthy; when an eight year old with an attachment disorder does the same, it is an expression of a deeper pain. Or: when a healthily-attached child tests their evolving independence by being defiant, their parent may well view that behavior as natural and appropriate; whereas when a child with an attachment disorder acts defiant, it is typically because they feel unsafe and out of control inside – and untrusting. The latter child needs – in order to build trust, heal and feel safe – a very different response than does the former.

Therapeutic parenting, as defined by the therapist we have worked with, can look very different than your basic permissive vs. strict parenting spectrum. In my experience, therapeutic parenting of this flavor is not always looked upon kindly, particularly by the progressive parenting population. So, parents of children with attachment disorders may live with another difference that is challenging -- and that too may feel trivialized by those who try to say we are all the same.

To summarize, I’m first aiming to make clear distinctions within connection. Second, out of that clarity, I celebrate the incredible, perhaps more-broadly applicable, helpfulness of the tools we have been blessed to glean from learning about aspects of the labels that represent elements of the human beings in our family. Sometimes these tools are about healing and, yes, “curing” an attachment disorder; sometimes they are about understanding and creating space for divergent neurologies. They are always about growing in inclusion and peace. The whole Full Spectrum household has become happier now that we have these tools.

If reading about autism or attachment disorders or whatever (identifying with theASPERGERS acrostic, for example) helps you in some way, more power to you! Our journey in this wacky, divergent, polarizing, unifying enterprise was what got me started on this blog in the first place, because Full Spectrum Mama embraces connection within difference.

Learning more about autism has not convinced me that everyone has Asperger's or spectrum-y tendencies at all. In fact, I wish that were so, as children are not always particularly nice with those who are "different." G's differences from the general population are more than clear (along with his many wonderful qualities!!). He's faced far greater challenges socially and in general than the average kid, as I know the aforementioned facebook-commenting parents' children have.

Guess you could say I am not a parenting relativist either. I have personal, direct, experiential knowledge that parenting a child who has common sense and a reasonable level of social skills -- a child who I know with 100% certainty will be completely fine on his/her own as an adult --  is 37 bajillion times easier/less worrisome that parenting one who doesn’t share these life skills, though I wouldn’t trade or change the latter child for all the world.

Anyway, it’s not a contest. Of course all children and parents and people have challenges. The challenges of autism per se, though, are not really expressed by the fact that, sure, many people might share some of the qualities on this ASPERGERS acrostic list. At the same time, we want to be really careful to be sensitive around trumpeting the “difficulties” of autism in a time when fear-mongering around the “autism epidemic” is rampant.

This list is just a tool, I think, meant for people with asperger's syndrome and those who love 'em or want to to understand more about it. I can’t speak to the artist’s intention, but I can say with some confidence that s/he probably intended the list for a specifically asperger's-related purpose.

That being said, the whole point at Full Spectrum Mama – as I hope I have made clear, er…somewhat at length, herein -  is the connections between all of us. FSM engages the idea that we are all on a giant spectrum and that therefore the similarities and differences between us can be instructive - and funny. It entertains the idea that my two children, as PART of who they are, seem often to be truly on opposite areas of that giant spectrum. It explores these two vastly contrasting yet sometimes surprisingly connected areas of a Full Spectrum that happen to be known as autism and attachment disorder.

My intention is to be illuminative of one unique mix, to be inclusive, to describe our spectrum, where the tools that work for us might have a higher chance of working for others for the very fact that they are working (or not working, puh-lease!) for spectrum locations that seem poles apart. My daughter is not on the autism spectrum, my son is not on the attachment disorder spectrum, but they are both – as are we all – on the inclusive, colorful, beautiful FULL Spectrum.

When I started writing/drawing Full Spectrum Mama almost two years ago, I envisioned the Full Spectrum as a Line. Then it became a Circle. Now it’s time for a Globe!

Voilà – the Globular Spectro-Continuum!

    Figure II – The “3-D” Globular Spectro-Continuum

 Figure III – The Globular Spectro-Continuum: Cross-Section

Welcome.

Love,

Full Spectrum Mama

* Definitions – quoted verbatim from: http://www.washington.edu/doit/Stem/articles?52 :

IEP:

The Individualized Educational Plan (IEP) is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.

504 Plan:

The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.

A MEETING FRIEND

If you haven’t already got one, I suggest you find yourself a Meeting Friend. What I mean by this is we all need someone who is in a similar situation. You know, the other person who, like you, secretly wants to do the merengue at the water cooler at your conservative office, or the one who also thinks about global warming All The Time, or has to bring their own snacks to school because if they eat vending machine snacks they will be sick all over the common room. The other single parent. The one at the boozefest who’s also in AA.

Whatever your difference, it usually feels better when shared.  Who wants to feel “special?” Or be a martyr? Better to not be alone in differences and/or challenges, no?

For me, finding someone who, like me, was dealing with a surfeit of school meetings (both historically and currently) was a game changer. It made me, as the mother of a Full Spectrum of children, feel like I shared a challenging aspect of life with another human being. It gave me a chance to connect over meeting topics and strategies, rather than having to accept empathy/sympathy from someone who had no idea what I was dealing with or, more likely, choosing to simply keep my mouth shut.

Depending on your location this might not be easy – it took me eleven years - but it’s something worth seeking out if you haven’t already found that person or persons.

And so, without further ado, I present to you:

Ode to a Meeting Friend

For D

If you’re rushing and fleeting to get to a meeting

And you see a sad person who’s sad in their greeting

And you ask them what’s up and they say through a tissue

That the teacher or principal called with some issue

Ask, How many weeks in did it happen to you?

Wait…You’re on your way NOW to a dread meeting TOO??

It is then you will know he or she is The One

The person who’s having the same Special Fun

Say: I take it You got “the school call” today too?

I know how you feel and I know what to do!

Between two there are so many ways to face meetings!

Some sob fests …co-ranting…emotional eatings!

Between two the whole scene becomes funnier, normal…

You can bawl, laugh or BOTH now, without being formal.

So let’s sing the praises of the Meeting Friend

Who is there with the gluten-free agave cookies

Who is there cuz of knowing this stuff ain’t for rookies!

Without him or her your heart might not quite mend

I love you, I love you, my dear Meeting Friend.

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.

At Home

I got A Dreaded Call the other day. We all know what those are for our particular family spectra, if sometimes only subconsciously. This was not The Dreaded Call but it was one I have been anticipating with trepidation since Z started kindergarten.

“Z has been taking food from the other children,” her teacher told me. “I have spoken with her and it hasn’t done any good. One time she said she was hungry and the other times she wouldn’t even answer me.”

“Taking.” What a nice word choice compared with “stealing.”

Filled with irrational shame, I mentally enumerated her lunchbox for the day (hard boiled egg, yoghurt, cheese stick, whole grain crackers, baby carrots, applesauce, clementine, small treat – all organic!). I then explained that Z (45 lbs.) gets the same lunch as her brother (95 lbs.) -- and that the hunger is emotional, not physical. I assured her teacher that I would look into solutions.

The next afternoon, Mrs. ___ happily told me that Z had a “good day.” I had given Z extra sweets in her lunchbox as a short-term solution to the “taking” of other kids’ food.  Mrs. ___ admitted that Z had tried to eat the sweets first thing in the morning, but had stopped when told to do so; then she “needed extra time at snack time because she wanted to first arrange the treats in an artistic pattern and then show everyone and then enjoy them very slowly…”

No, that was not a good day.

“Z needs to abide by the same rules as the rest of the class,” I explained. “When you give her special privileges she will feel that she is the one in control and will push – further and further.” This pushing promptly ensued.

In fact, Z’s behavior at school subsequently seemed to explode. I received calls or emails from the school nearly every day. Around the same time that a little girl was handcuffed in Florida  (http://www.latimes.com/news/nation/nationnow/la-na-nn-six-year-old-handcuffed-20120417,0,765665.story) I had to pick Z up in the classroom because she was very upset. I counted myself lucky to have been available. At another pick up, I found her hunched over her Hello Kitty backpack shoveling stolen candy into her mouth with one hand, a handful of crumpled wrappers in the other.  She kicked her best friend and when she finally calmed down announced the whole thing was best friend’s fault for “making me upset” and “making me do it.” She pushed other students, continued to take food, ignored her teacher, lied flagrantly, and so on; she continues to do so.

Another teacher, who has fostered children with attachment disorders, suggested that Z’s behaviors are escalating because she has come to feel comfortable in the classroom. This made sense: at home, she feels most attached to me and therefore needs to constantly test me. Her kindergarten teacher, however, had never dealt with a child with an attachment disorder and was – quite understandably -- bewildered and overwhelmed. I tried to explain some of the underlying factors, but we were and are struggling with how to actually reach Z and create positive change.

Grandmother* (a gerontologist) and Grandfather (an educator, currently teaching fourth grade in a public school in CT) recommended that we consider the possibility that she might need a paraprofessional.

“Ma! Two kids in one tiny elementary school with paras???” I sputtered. “That’s like 12% of the school’s budget! No!”

I imagined myself in a meeting at school wherein this two-for-two issue might arise: assuming the voice of a Borscht Belt comedian from the ‘50s, I’d say, “You think this is bad? You should see us at home!” Ba dum bum!

The truth is, though, that our current educational paradigm holds that public education is for all.  Mainstreaming students with most educational and/or emotional and/or physical special needs is our goal. Ergo: IEPs (Individualized Education Programs; which is what G has) and 504 plans (accommodations, not necessarily special education services; which is what Z may need).  Please see also: http://specialchildren.about.com/od/504s/f/504faq2.htm.

Also true: things are not necessarily harder at home. In G’s case, his schools came to me with concerns over his development and social interactions. Had life consisted of just G and me (or G and me and Timson Hill) I never would have noticed a thing (please see aspergers, genetic links with biological parents…or if there are any websites about people who just want to read all the time with cats on their laps and a nice bowl of pudding).  In Z’s case, struggles at home had always far outweighed those at school.

I envisioned a spectrum in which some people were equally comfortable at home and at school, some were more at ease at school, and some at home. I had come to think of Z as more “at home” at school whereas G seemed more “at home” at home.

Z’s first preschool, which she attended just a few mornings a week, was a sweet, in-home joint, run by a mild, affable woman. Z was – gently but firmly -- asked to leave that preschool for monopolizing all of her teacher’s time and energy.

Her second preschool (http://www.timsonhillpreschool.com/ -- may they live long and prosper) was one of the top-rated in the state and a most wonderful and accepting place. G had gone to Timson Hill in his final preschool year, and it was the one place where they never suggested he be evaluated (he had been evaluated by Essential Early Education [“Triple E”] services at his previous preschool, before we moved, and was subsequently evaluated in kindergarten).  G was relatively at ease in that utopian environment – and unconditionally loved. Likewise, the teachers at Timson Hill accepted his sister Z wholeheartedly and – I might add – effectively, as her behaviors improved in that context.

Sure, there were the several times I had to go get Z when she was “possibly catatonic” or “might be having a seizure of some sort” because she wouldn’t respond or speak to her teachers but once we were in the car she’d revive. Using her own words for what she was doing, I would ask, ”Were you just tricking your teachers?”  [Giggles…] “Yes.”

But they never minded! They were just glad to know she was okay! And, day-to-day, they celebrated her for Expressing Herself and Exploring her Power, just as they had celebrated G’s various quirks and peccadilloes as originality, pensiveness, brilliance…

Ah, would that the whole world were made of Timson Hill.

On the first day of kindergarten, Z -- alongside her big brother -- proudly walked into the school she’d been anticipating attending for years. Her pink Hello Kitty backpack was almost bigger than she was.  It was an exciting and happy event.

                                               Figure I – Backpack to Child Ratio: 4:5

 There were other idyllic moments, like when Pardner and I both elected to serve as “Mystery Readers” in the classroom. I bawled uncontrollably (though [I hope] subtly) throughout those simple and unspoiled occasions.  I had so much hope that Z would be able to self-regulate in positive ways at school.

Still, fairly early on, Z’s teacher had to move her cubby to a more visible place because of some sneaking behaviors. And she was having some dominance and conflict-resolution challenges too. Then again, Z could certainly be relied upon to “run circle time” if Mrs. ___ had a small group activity to attend to.  Overall, kindergarten seemed to be going relatively well.

One morning in November, after some small incident, we stopped to greet the principal at the front door. “Z is planning to be very well-behaved today,” I announced. Z’s face got flat and stormy. “Hey,” I told her as we walked into school, noticing her expression, “You need to behave – and we are all here to help you.”

On the way back out, I stopped again and said to the principal, “I hope that was okay…I just want to help Z do her best and her knowing that everybody is in on that seems like a good idea to me.”

“Oh, I wouldn’t worry too much,” he assured me. “She’s only been down in to see me a couple of times.”

Um. A couple of times? It was November. And she’s in KINDERGARTEN??? G has been to the principal’s office once in five years; I’d been once: in fifth grade, for kicking Jamie Chickaverry in the braces. (I’d been aiming lower.)

After a weekend from h-e-double-toothpicks, and the above-mentioned calls and concerns from Z’s teacher, I scheduled an emergency phone appointment with the attachment disorder therapist. While I was on the phone, Pardner ran into the woman who had referred us to that therapist in the first place in town. She has a son about Z’s age who was also adopted and has similar issues with anger, among other things. “How’s it going?” she asked Pard. He told her a little about recent events.

She got it. Wasn’t any kind of, “Oh that’s ‘normal’’’ – she got the whole threatening-to-kill-Mama (and everyone else), house-destroying aspect of the situation. Apparently, her son calls her a “F-ing B___” On the regular. Sigh. My people.

Pardner said she then uttered the words, “support group.”

“I don’t really think FSM is the type for that…” Pardner ventured.

“Yeah,” she said, “I wasn’t either. It’s just that you get nuggets of information. AND you meet people who get it.”

This is why sometimes I cannot talk to people: I mentioned a bit about some current behaviors to someone. “Mavbe Z was having a rough day at school,” this innocent person suggested.

No, innocent person, Z was not “having a rough day at school.” Z was possessed. By the exorcist? Or – I mean – she was possessed by whatever the girl in that movie is possessed by – that’s my daughter when she’s mad? Which is a lot of the time? The clinical term is “shame rages”?

So…About that support group?

Our therapist differentiated for us between shame and guilt. Guilt is a pro-social emotion, which makes learning and progress possible. When children feel guilt, they naturally want to do better. In time more pro-social behavior becomes ingrained. Shame is a dead end, and children with that feeling see themselves as helpless and hopeless. They have, therefore, nothing to lose. Shame is an anti-social emotion.

When Z clams up and refuses to respond to teachers and family it is with shame. Her “shame rages” are the tantrums of someone who believes all is already lost, which is the main reason they are so extreme.

Our therapist said one of the most important gifts one can give a child with an attachment disorder is to create the chance to “do a repair.” A repair can make a child feel more safe, more at home, wherever he or she is. It is not too much of a stretch to hope that a child who feels at home (whether in a place or a relationship) would lose the need to attempt to destroy their surroundings or companions.

When one has been dealing with relentless testing and pushing and tantrums all day where does that energy – the energy to not only come up with an idea for a repair but to then carry through -- come from?  What if the one who might be able to “do a repair” is a teacher with twenty other students to worry about?

Better go get some chocolate. It’s for the sake of my child.

Love,

Full Spectrum Mama

* I should note this is the same Grandmother who – despite being Liberal and by and large Left-leaning -- is convinced that Z must be descended from royalty due to her great beauty, intelligence and imperiousness.