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How to Become a Parent Advocate

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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 skills. The 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:
http://home.infi.net/~marywilt/index.html
It helps to have the support & encouragement of others who TRULY know what you are facing.

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 most successful for children with the disability in question. Often a wonderful resource for both support & knowledge is your state's Parent Training & Information Center. 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 the second 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 conversations 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:

School records
Medical records
Professional evaluations
Letters & notes from teachers/school staff
Information you've gathered specifically about your child's disability.
Information about special education laws/regulations in your state.
Copies of letters you send to the school or other professionals regarding your child.
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 Max.com.

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 with your child's therapy or education, make your request in writing & share any 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 people 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: http://www.parentsinc.org/quiz.html

6. When in doubt, get help!

If all of this is leaving you with that "totally overwhelmed" feeling then you 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!

Lisa is the Director of the Ideal Lives Project and author of several e-books specifically for special needs parents.
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