Over
the last few years of navigating institutional systems (schools, camps,
after-school activities…), I’ve come to see that advocacy takes many different
forms. Here is a list of several types of advocacy and some of the key tools
for success in each:
- The Long-Term
Success/Short-Term Failure:
Sometimes, you might fail in your
efforts on behalf of your own child…but achieve some success on behalf of
future children in a given place or institution. I had one such experience this
summer, and it was one of the most painful of my life. I haven’t been up to
writing about it yet, and so will just say that I removed and protected G from
a discriminatory situation and called the institution out on its very large mistakes
in handling the whole situation. It took me a long time to get results, and I
had to go to the board because the administration itself was astoundingly
unresponsive, but I don’t believe any other family will have to endure what we
did at that particular place again.
KEY TOOLS:
a. Perspective
b. Long-Term
Vision
- The Learning
Experience:
Sometimes past advocacy gives one
tools to share with other parents who might not be as experienced in advocacy. Over
the last year, I’ve had several people in my area come to me or refer others to
me for help with advocacy. It’s not that I am some “expert” – but I do have by
now quite a lot of practice. Little things like remembering to scrape the cat
hair off your clothes, or arm yourself with some vocabulary, can make a real
difference in advocacy.
Another really huge thing is not
feeling alone.
KEY TOOLS:
a. Time (haha)
b. Ability to Listen,
Commiserate
c. Ability to Share Knowledge / Research / Resources
[>>>EDIT: I apologize for poor list formatting. I am sure many of you can relate to the agony it causes me that the more I try to fix it the worse it gets. Something funky in my blogger template?]
- The Mixup:
Oftentimes, advocacy becomes necessary
because a situation is misunderstood. People, especially children, perhaps most
especially those with differences - such as my autistic son, G - may have a
hard time articulating what they are feeling or what they have experienced,
especially under pressure and/or with authority figures.
Mixups may necessitate Social
AND/OR Academic Advocacy.
Here is something in this vein that
happened this fall: G got suspended from his school-sponsored after-school
activity for punching two boys. It seemed to the school like he was the “bad
guy” in the interaction, in both the phone call and the serious letter I
received.
But I know my son. He’d NEVER been
violent before. So I asked him some key questions, you know, starting with a
simple “What happened?” It emerged that these two boys had been teasing him for
the last few weeks and he’d finally lost it at the moment when one of the boys was
writing “[G] is a blundering idiot” on the blackboard.
I remembered that he’d told me some
kids were teasing him, but hadn’t felt it warranted a talk with the teacher
since G hadn’t seemed to be very upset
and I assumed he would handle it himself with the IGNORE method we often
discuss…Over the week in question, the teasing had crossed the line over into
bullying. The leader of this after school activity – who, it turned out, was a high school student – had clearly been
in over his head with this bunch of zany boys playing Pathfinders (for my
fellow old fogies, that’s basically the new version of Dungeons & Dragons).
SO, what I did: I wrote the head of
the program as well as the school principal and vice-principal explaining my
child’s perspective and giving them some context. I acknowledged that hitting
is never, ever acceptable and assured them that I supported their stance on
violence and would speak firmly with G. But I also I asked that the other
children be spoken to as well, and possibly suspended from that same activity for
their bullying behavior. I asked that they ALL recognize that this was not a
situation where a violent kid bullied others, but one in which a non-violent
kid was pushed too far for too long. I think they got it, but only after my G
had been labeled as violent and suspended from the program, which did have some
impact on him. However, with Mixups,
there’s always that initial…Mixup.
Here’s a different example: G was
failing math, his best subject, this fall. I worked with the teacher and with G
and we were able to figure out that he was doing
his assignments but not turning them in.
We adapted his homework assignment
protocol to include turning things in immediately upon completion rather than
waiting until the next class. Mixups usually have solutions…if people will
speak out – and listen!
KEY TOOLS:
Detective Work:
a. Finding Out What Really Happened via
Asking and Listening,
and then
b. Finding Out What Can Be Done,
and then
c. sometimes Fighting for What Can Be Done to
d. Actually BE Done.
- The Temporary Fail:
Sometimes, advocacy fails, at least
initially. We do have resources when this happens! There are lawyers and
organizations that specialize in special needs advocacy, but sometimes other
parents or people who share your or your child’s difference can be really great
at figuring out options.
KEY TOOLS:
a. (Internet
& other) Research
b. Legal Aid Organizations
c. Community (including online! For many of us, that’s the
most viable option…)
d. Local and National Advocacy Organizations
e. Word
of Mouth
- Success!
I’ve written in the “Process, Represent,
Toot” link below about my fight to keep G’s IEP in the fifth grade. It was a
doozy – but those of us who were on the kid’s team won. In my experience, the
most common and daunting obstacles to students receiving the help they need are
budgetary. Schools are required to “provide
a free and appropriate public education” to all students. Those who don’t fit
the cookie-cutter mold of the average student (and I would argue that
percentage is very high) are harder
to educate because they require Individualized Education, which is more costly!
A formal IEP (Individualized Education Plan) obviously costs districts much
more than warehousing “average,” “normal” students with one-size-fits-all
teaching. So, naturally, they want to –
or HAVE TO - minimize the proportion of students served thereby.
That’s not to say you won’t
encounter people who want the best for a given student. I have personally seen
a teacher put his job on the line for my son. It’s just that this system makes
it more likely you will have to advocate for your child or yourself. Start by being there -- as often as it takes. In
addition:
KEY TOOLS:
a. Knowledge
b. Confidence (Fake it if
you need to! But remember: YOU
are the EXPERT on your child, the one who knows most intimately what he
or she needs to succeed.
c. Persistence -- Keep at It
d. If possible: Enlist Other
People
- Self-Advocacy:
Things ARE changing. Not fast
enough! These days, we ourselves and our children are learning to know
ourselves as equal, to know our own individual strengths and weaknesses, our
quirks, gifts, and challenges…As knowledge around neurodiversity spreads, there’s
more respect and acceptance for all.
I recently had a long talk with one
of my students whose daughter sounds like she has sensory processing
differences. I was telling this mother how it felt to be spectrum-y growing up
in a world with ZERO awareness and how NOW her daughter will have so much more
understanding and can learn to advocate
for herself...
Just yesterday, I said to a friend,
perfectly casually, nicely, “My brain is full and I can’t talk to you anymore.”
She totally got it. That never would
have happened ten years ago. Those of us in neurodiverse communities are openly
telling our stories more and more; we are feeling increasingly comfortable
advocating for sensory adaptations, executive function aids, acceptance of
tics, flaps and awkwardnesses…ADVOCATING for What We Need.
Of course discrimination is still
an issue, as are many aspects of living with disabilities and differences. With
sharing our voices and teaching our children and ourselves how to Self-Advocate
we can continue to grow a world where acceptance and equality prevail.
KEY TOOLS:
a. Self-Awareness
b. Willingness
to Grow
c. Conviction
d. Ideas for Adapatation(s) (I prefer the word
“adaptations”
to “accommodations,” which sounds to me like somebody is doing somebody
a favor)
Here, gleaned from commonalities among the above genres of
advocacy, are what I see as THREE MAIN TOOLS FOR ADVOCACY:
1. HELP
YOURSELF (whether to help yourself or someone else) – Do the research so you
know what’s legal, appropriate and possible.
2. FIND
and IDENTIFY ALLIES -- and ASK FOR HELP.
3. KEEP
TRYING – Don’t give up. Or, at least, if you do need to give up, don’t give up forever. Take a break! Build your
strength and hope and, when you are ready, resume advocacy.
Good luck, my friends!
Love,
Full Spectrum Mama
P.S. For more posts on Advocacy, please check out:
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