to Become a Parent Advocate
By Lisa Simmons
This article provided by the Family Content
Parenting can be a challenging
job. Parenting a child with special needs has
all of the usual challenges and then some! To be effective you
must not only
learn the usual parenting skills, but must also master advocacy
unfortunate reality of life in our society is that your child
will be treated
differently and you will face situations where you must actively "fight" or
advocate to make sure your child is treated fairly. The good
news -- you don't
have to fight alone. Here's how you get started:
1. Get connected
Find other parents of special needs kids in
your area or join an on-line support
group like the parent advocates list serv at:
helps to have the support & encouragement of others who
TRULY know what you
2. Get educated
Find out everything you
can about your child's specific disability, the local
resources available and the educational methods that have been
for children with the disability in question. Often a wonderful
both support & knowledge is your state's Parent Training & Information
You can locate yours at: http://www.taalliance.org/PTIs.htm
3. Get organized
Gather your supplies and create your own advocacy
notebook. Supplies yo are
likely to need include:
** A sturdy 3 ring notebook
-- one tough enough to last K-12 & beyond.
** Divider tabs -- check the list below for possible sections
to set up.
** A 3-hole punch -- for notes or reports that don't come "pre-punched".
** A highlighter -- to help you find specific information quickly
time you need it.
** Page markers or flags -- Post-It makes great flags that are
already sticky& easy to use. These will save
you time finding sections that you refer to on a
regular basis or want to flip to quickly during a meeting.
A spiral notebook or phone log style notebook to record phone
or informal verbal agreements.
Your notebook should contain whatever sections
make sense to you, but it is
usually helpful to set up separate sections for the following:
Letters & notes from teachers/school staff
Information you've gathered specifically about your child's disability.
Information about special education laws/regulations in your
Copies of letters you send to the school or other professionals
An informal log to track information & commitments gathered
on the phone.
To put your advocacy notebook together inexpensively,
check out the great, low
cost supplies at business supply stores like Staples.com or Office
4. Get specific
When you need more information,
ask for what you need & keep
asking until you
get an answer. If you would like to see something different happening
child's therapy or education, make your request in writing & share
suggestions you have or ideas you would like to see explored.
To make sure what
you're asking for is legal, check out this extensive Advocacy
Tutorial by Dr.
Leslie Packer of TS Plus here: http://www.tourettesyndrome.net/advocacy.htm
5. Get control of your communication
It will frequently be important
to use your two greatest tools (assertiveness& persistence),
but don't fall into the destructive trap of using anger or
aggression. These emotions will only damage relationships & distract
from where the main focus should be - your child. Not sure if
you rank as
assertive or aggressive? Try a quick & easy quizz here to
find out: www.parentsinc.org/quiz.html
6. When in doubt, get help!
If all of this is leaving
you with that "totally overwhelmed" feeling
may want to consider working with a professional advocate or
a more experienced
special needs parent. Check out a nation wide selection of professional
advocates here: http://www.iser.com/CAadvocacy.html or
apply for a "mentor parent" through the Parent Connections
Program at Parents
Helping Parents - http://www.php.com/
BUT NEVER FORGET THAT YOU ARE YOUR CHILD'S BEST ADVOCATE!
© 2000 Lisa Simmons.
All Rights Reserved.
Lisa is the Director of the Ideal Lives Project
and author of several e-books
specifically for special needs parents. Request her free newsletter
a blank email to mailto:firstname.lastname@example.org