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

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.