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.