Monday, January 13, 2014

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: 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,

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
-- 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,

Full Spectrum Mama


  1. Just printed School Advocacy manuals I and II for a coworker headed into her first meeting with administrators. She did not sleep and has been crying in fear all morning. She worries she will not do a good job for her child. Thank you for these good tools, FSM!!!

    1. Dear Anonymous,
      Thank you so very much for your comment and for being such a great support and friend to your co-worker. Please tell her to feel free to email me at if I can help in any way. I don't have the answers (just had a really unexpectedly rough IEP meeting yesterday myself and have definitely been on a coterminous crying jag - stay tuned for future post :( ) but sometimes being able to communicate with someone who has been there can really help. Or just having a compassionate pal like you, sounds like. Crying is an official part of the advocacy process, but great successes are possible too. Oh, I hope it went well!

  2. FSM - what a GREAT post
    CONTEXT ABSOLUTELY matters - our kids CAN blossom in the right environment - so glad of the way you advocated for him and all the resources you provided

    1. Thank you so, so much, FLM!!!! We are trying, eh? Love, FSM

  3. Excellent post! I have an IEP meeting coming up and boy do I hate them with a passion because I have Asperger's and probably like many other parents, I feel intimidated by all those staff/teachers who know things about my son that I do not. Your post was helpful because I took away from it thought provoking information that can come in handy. Thanks....Lora from My Beautiful Child Griffin & Autism.

    1. Thank you dear Lora,
      I know what you mean! Although it was something i had suspected for about 15 years it was only through my son's early IEP process (VERY grueling) that i discovered I had Asperger's too - initially through HIS pediatric neurologist!!! Anyway, lists really help me - as yours on your blog did - and hope you can not get too overwhelmed to remember some of OUR tips ;)
      Good luck in your meeting!!!! And please keep in touch. I think there is much to be said for those of us in parent-child spectra.
      Love, FSM
      p.s. the first list (link in current post) is much more basic...but i still need it...


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