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
