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

Poorly Behaved: A Context Spectrum

“Z, please come downstairs,” I called from the kitchen.

Since I was cooking dinner and not really paying attention, it took a few minutes to realize my daughter hadn’t shown up. Sharing in kitchen chores is something Z really enjoys, an opportunity for us to have plain old fun together, so I tried again.

“Z,” I repeated, perhaps the tiniest smidge more emphatically, “Please come downstairs.”

She came to stand near me as I bustled about.

“Sorry Mama,” she informed me, “I didn’t hear you the first time.”

Hmm.

“Well, if you didn’t hear me, “ I sputtered, “How would you have known I called you the first time, then?”

Blank look.

“Oh, never mind!”

“Normal?” Perhaps. (Although not in the autism area of our Full Spectrum.) In the context of the rest of that day’s events, this exchange emerges as one of many instances of survival-motivated behaviors that add up to an overall tendency toward evasiveness and, therefore, at least in our case, dishonesty.

How does one raise a child inclined to subterfuge? On even the most minor points, Z tends toward confabulation. That is, her disorder (for confabulation implies an illness, often dementia) inclines her toward making up whatever answer is most suitable to her needs. 

We have made some real progress with tantrums since the early days (see, for example, http://fullspectrummama.blogspot.com/2012/06/needhelp.html) but the more subtle matters of day-to-day integrity are an ongoing trial.

I was recently talking with my mother about why I haven’t really explored the online world of attachment disorders in the same way that I have those of autism and aspergers syndrome. I told her I thought it was because most autism sites seem to celebrate people’s differences while I feared attachment disorder sites would just make me scared or sad. I knew that they might make me feel less alone in our struggles, but I suspected hearing about other people being as hopeless and desperate as I have sometimes been would be depressing.

When I googled “attachment disorders,” the first site I ended up on was:

http://adoption.families.com/blog/a-letter-to-our-new-neighbors-about-our-rad-daughter.

I had landed on a link to a letter on a parenting site, from a mother of a child with an attachment disorder to her new neighbors. Her daughter was quickly forming intense friendships with people in her new neighborhood and this Mama was concerned about the healthy development of those relationships.

I know how she felt having to write that letter. When you have a child with an attachment disorder, sometimes you feel like you need to write similar letters, over and over, even to some of the closest people around you.

A Context Spectrum comes to mind: yes, I understand that sometimes {insert behavior} is “normal” (and, hey, maybe you are trying to make us feel better – thanks!) but in a context of {behavior}, {behavior}, and {behavior}, it is NOT normal. And to ignore it will NOT help, in fact it will almost certainly make things worse.  So please, dear {recipient of letter}, understand that we need to handle this in a way that might seem overly strict to you, but, beloved {recipient of letter}, trust me that you do Not know best in this context.

This letter-writing Mama’s daughter is, like Z, incredibly charming and engaging, and her mother is worried – for good reason – that her daughter’s interactions with neighbors may spiral out of balance in any number of ways.

Her letter most definitely touched a nerve.

I didn’t go to any other attachment disorder sites that day.

I had a vague idea about attachment disorders but assumed since I brought Z home under the age of one she would be unaffected by this illness.

The fact that I was unable to put Z down for a year or so (according to those with intact memories of this period [not including me]) without causing an unremitting stream of bloodcurdling screams to emit from her tiny mouth might have indicated that something unusual was going on. I attributed her neediness to her exceptional intelligence and sensitivity, as well as to her temperament, about which our guides in China had warned us. I can still remember “Rose,” standing at the front of our bus with a microphone, announcing with a big grin, “Since they are from Jiangxi Province, your daughters are gonna be Spicy!”

The contrast between the plump, smiling, radiant six-month old baby in the referral picture I received and the scrawny, closed-faced child of nine months and three weeks that I met was stark. What happened in those three months? Was it something specific, like hunger or abuse? Or was it just that my incredibly perceptive girl had noticed that something was missing? 

I thought that once I brought her home and fattened her up a bit that jolly baby Z would re-emerge unscathed. It hasn’t been that simple. Loving my vibrant, wonderful yet troubled daughter has not been enough to heal her – yet; and we have searched at length for therapeutic modes of discipline that will actually work.

When I first brought home my “first and best-behaved child,” Pancha, who happened to be a dog (Figure I), I resolved to never say “bad dog!” “Bad dog” just sounded so mean. Love the sinner, hate the sin! I decided, instead, to call her “poorly behaved” if she did something “bad.”

       Figure I -- The beautiful Pancha,* a.k.a. Sri Sri Sri Panchananda-ji, Gabooboogee, The Punk

Pancha joined my household when I was in the early years of graduate school and was living on a fellowship that only barely paid the bills. Every once in awhile – as in, every year or so -- I would buy something new to wear; slightly more often I’d indulge in second-hand clothes from the 96^th Street Salvation Army.

When Pancha was still a puppy, I purchased a precious, precious new pair of shoes. She promptly chewed them to pieces. I was devastated and determined to prevent such an event ever recurring. I put her on her back to show her who was boss and scolded her with a mighty wrath. She trembled, cowering and groveling in guilt and remorse. Except – as she cowered and groveled in guilt and remorse, she reached out with one paw and – dink, dink – played with a toy.

My daughter reminds me a lot of Pancha: brilliant, beautiful, vivacious, punk, very lovable, very hungry – and with a bifurcated mind. One part focused on pleasing Mama, the other (larger) on getting what she wants…Conscience? “Is still acquiring this skill,” as they say on Vermont report cards. My beautiful dog and my beautiful daughter: both quite good at aping respect; underneath that surface layer, both convinced that they should take control. It was cute in a small dog, in a small person it is sometimes disturbing.

Z doesn’t even do the fake remorse, groveling or cowering. If Z is found out in a lie or poorly behaved activity she is, not to put too fine a point on it, pissed. She has to be reminded, often firmly obliged, to say she is sorry.  The jury is still out on whether forced apology works on any non-superficial level or is an acceptable parenting tool, beyond the most simple and public of social situations (i.e., “Please apologize to that other child for cutting in line”). 

A wise aunt once told me, “Be careful that you don’t scold your child in a way that makes her begin to have a picture of herself as ‘the bad one.” I’ve tried to combine that with the notion of “poorly behaved” to manage Z’s disordered actions as actions per se -- and not character flaws. As I mentioned, we’ve made major progress with tantrums. We are down from multiples every day to an average of one or two real humdingers a week!

But Z’s general approach to life seems still to be one of pragmatic get-what-I-want-with-a-minimum-of-obstacles-ism. Despite my never using this word with her, when I ask Z why she did a given “bad” thing she will answer me with a shrug, “Because I am bad.”

                              Figure II -- Self Portrait by Z, casually left on the drawing table

During a Harry Potter camp last summer, the kids brought home stuffed owls and kept them in their windows. A mysterious “someone” would send notes every night (for a very long time, every night, until, indeed, the owls got very “tired” and “retired” to chairs and beds!). Over and over again Z received notes that affirmed her essential, innate goodness, in words she could understand: “Let your good heart shine,” “ You are so kind inside – don’t be afraid to let your kindness out!” and so on.

    

        Figure III – Drawing under the drawing in Figure II: slightly comforting in the drawing 

                           context spectrum, assuming she is the one with the wings...

Around this fall equinox I had a talk with G and Z about what the equinox represents -- the equal day and night hours, the meaning of equanimity, finding balance…

I shared that I felt like my teaching work had taken over all my writing and yoga practice time (please see http://whitewhine.com/) and that I felt out of balance for that reason. I asked them if there was anything in their lives that needed to be in better balance.

G replied that he felt that his life was in a good balance.

Then Z announced, “I‘m too bad. I’m going to stop being bad, just like I stopped biting my nails.”  (Her quitting a serious nail-biting habit is an example I always use for her to remind her of her strong will power.)

“Oh, Z, you are not bad,” I reassured her, “Sometimes you may do a thing that seems bad but that’s just because you are hurting inside.”

This is, after all, how I explain unkindness, cruelty, lashing out and general chumpitude to myself and to my son, on his spot on the Full Spectrum. I prefer this explanation to one of selfishness, and in Z’s case I believe it holds true.  It is my failure as her Mama that all my linguistic somersaults have not prevented my daughter from thinking she is “bad.”

Nor have my modes of discipline made much progress: Did Z stop being poorly behaved? Not quite yet.

Is not the fact that we both get to keep trying not one of the neatest things about life?

Love,

The sometimes poorly behaved but never bad,

Full Spectrum Mama

* Some haters may quibble with the word “beautiful” being used to describe my stunningly lovely dog. I have nothing to say to them.

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