A Life Apart: Parent Perspective on Living with a Child
with Asperger’s
LESSON SIX: Defining Advocacy and Becoming a Successful Advocate
OBJECTIVE: Ability to examine your strengths and weaknesses
as an advocate for your child
READINGS: www.ct-asrc.org
Go to this website and order a subscription and back issues of this
organization’s newsletter. Clearly written, it is chock-full
of useful tips
ADVOCACY
What does the term mean to you? Define it.
What have been your best successes in advocating for your child?
Advocating can be a very lonely job. What keeps someone going, I think,
is the firm belief that you can and will make a difference. Keep your
eye on the immediate goal as well as the long-term ones. The first step
is to identify the problem you want to resolve.
Think about an issue – just one- and what your desired outcome
is. Identify to yourself who is the person(s) who could best effectuate
the change you want to see happen.
In identifying the problem with that person, take a non-confrontational
approach.
- Start with a statement describing how YOU feel. (Rehearse that
statement to yourself out loud in front of a mirror)
- Another approach is describing the child’s problem very specifically.
(Rehearse that kind of statement in the same way as above)
- A third non-confrontational approach is the global approach. Remove
the problem from the personal arena, e.g. “There do not seem
to be enough aides in this classroom to accommodate all the children
who need assistance.”
ACTIVITY: Getting Started with Advocacy
Identify an area of concern for your child right now, something
that you want to change. Practice these above-noted approaches in front
of a mirror. Even pros need rehearsal time.
Even before you make your real-life case, do your homework. Gather information
to support your opinion that a problem exists. This can be a combination
of your own observations, your own intimate knowledge of your child
or more generalized input from professionals or conferences.
ACTIVITY:
Take a pad – or your journal - and write down some solutions
to the problem you wish to resolve.
Select the best two or three.
That was the easy part. Now comes the challenge- speaking up. Or communicating
effectively.
This doesn’t happen overnight. Your ultimate goal is to build
an alliance with those who work with your child. An alliance is forged
from mutual trust and similar goals.
Hopefully you have laid the groundwork, which means staying in frequent
contact with your child’s teacher or other professionals. Attend
meetings at the school. Get to know the people who work with your child.
Become involved in the school if you can. Become as familiar a face
as your time and energy allow.
Barriers to Effective Communication
- Steaming up
- Knee-jerk reaction
When you feel as though you have to pick up the phone right away or
run into school right away, STOP. Write down what comes
to mind right away with no edits. Leave it alone for a little time and
go back and edit. It is too easy to sabotage a lot of previous hard
work with one furious, emotional, knee-jerk reaction phone call.
An hour or two or a day later won’t matter in the long run and
in the short run, you could prevent yourself from alienating the very
people you need to be there for your child. I am not a good thinker
on my feet. I do not speak well extemporaneously. I suggest making some
notes before you make that call or that appointment. Another barrier
to effective communication is our emotions. And as parents we are at
a distinct disadvantage. What could be more emotional than MY child?
As the parent of a child with special needs we all wear many “hats”
– mother, father, coach, playmate, organizer, enforcer, scheduler,
all-around wizard, chauffeur etc. I suggest you take off the “mother/father”
hat and put on one and only ONE:
“Case Manager/Advocate.”
Think of yourself as a professional whose expertise is YOUR child.
No one has such a level of expertise. None of the many people who will
sit at a conference table with you for and IEP meeting.
We often come to an IEP meeting with some baggage. It may be loaded
with grief or disappointment. We are raw, bruised and very sad. Or we
may come to a meeting in a suit of armor. We are protected, ready to
strike back, and insulated against anything that might touch a nerve.
Baggage and armor are best left at the door.
Just as our children need behavioral reminders, so may we,
at times.
MAKING IT WORK
What happens after a meeting is just as important as what take place
during the meeting. All the talk, smiles, nods and nice talk don’t
mean anything unless action will follow. This means follow-up and
establishing accountability.
Write down with whom you spoke, the date and paraphrase what was said.
Follow up your phone call or your meeting with a call to find out if the
situation has been remedied.
Above all, remember that you want to establish and maintain credibility
so when a crisis or something important is going on with your child, your
input will be valued.
Think and write before you speak.
Be prepared before any meeting or phone call.
Have your facts and supporting evidence in place.
Take along moral support.
Read all reports and don’t be intimidated by the jargon. Ask for
clarification from the person who wrote the report.
None of us were born advocates. Some of us were born good talkers but
that does not necessarily translate into good advocacy. Effective advocacy
takes time, with lots of trial and error. We have our children to thank
for helping us learn to develop skills we might have never realized
we had. There are many excellent parent advocacy organizations that
offer free or training or training at minimal cost.
