Being an Effective Advocate for Your Special Needs Child (BlogHer 2012 Recap)

I sat in on a wonderful HealthMinder Session at BlogHer called Special Needs and Caregiving: Becoming an Expert Caregiver–and I took notes for all of you who couldn’t be there.

My only personal IEP experience is that I acted as a Spanish interpreter at one (1) IEP meeting in Boulder, CO when I was in college–I read about these issues a lot, but I’m not an expert–these panelists are:

Carol Greenburg -an Aspie Mom who is Executive director of Brooklyn Special Needs Consulting, and the East Coast Regional Director of the Autism Women’s Network.

Kristen Chew -  a Classics professor; mother of a 15-year-old son, Charlie, who’s on the moderate to severe end of the autism spectrum, blogs at We Got Him about life with Charlie and blogs about education, disability, politics and human rights at Care2.com.

Tanis Miller – The Red Neck Mommy, a funny and fabulous blogger who is also mom to two special needs children: Shale, who died suddenly before his fifth birthday, and Jumby, who has spastic cerebral palsy among other serious physical and developmental problems.

And now, their advice:

1. When you’re working with your child’s school, teachers and district, it’s helpful to understand where they’re coming from. (from Carol Greenburg) The Individuals with Disabilities Education Act (IDEA- the law that controls how states provide early intervention, special education, etc) is a federal mandate the is UNFUNDED. The federal government says, “States, you have to make this happen, but we’re not going to give you any money to do it. You figure out how to take care of these kids on your own.” This means a lot of the teachers and administrators you talk to are feeling the pressure of limited resources.

2. If you can help it, don’t cry. All three panelists agreed that tears weaken your ability to negotiate, but only Carol had always made it out of IEP meetings without crying. Which leads us to…

3. Don’t go solo. Again all panelists agreed that having someone else there, whether it’s your spouse, a friend or a special education advocate, another person provides perspective and support. Race, Gender, Class and Culture all place into IEP decisions–and all negotiations. Your spouse, friend or advocate might be better at reaching the people on the other side of the table and at minimum you have some back up.

4. Advocate for yourself and your child in person. This is from Carol Greenburg – If you have limited resources for help, go in person to the advocacy organization, with all your records, and ask for their help. Most non-profits and resource organizations have limited funds and limited personnel–if you call you might get put off, if you show up the odds are very good you’ll get help.

5. Sometimes what you advocate for might be the wrong thing. This is from Kristen Chew, who talked about fighting her son’s placement in a program that, ultimately, was a great thing for him. ”A lot of advocacy, to me, is about being open to being wrong,” she said. The other panelists agreed that this has happened in their experience too. You know your child better than anyone, but sometimes other people understand the appropriate resources or treatment options better. “Again, it comes back to having perspective,” Tanis said.

6. Avoid catastrophic thinking, but do look your fears in the face and deal with them. “What’s going to happen to my child when he turns 21? What happens when I’m gone?” The panelists said that thinking about these things can be be so scary it paralyzes you. Kristen Chew said she and her husband faced those fears and with the help of a good lawyer developed plans for their son’s life transitions–she highly recommends it.

7. Follow the evidence. When you’re researching treatments, therapies or someone presents a treatment to you, how do you know what’s good? “Evidence-based, replicable science will point you in the right direction,” says Carol Greenburg. And be very skeptical of “cures.”

Some awesome resources that were also mentioned during the session: Wrights Law, COPAA, Parent to Parent

I also want to give a shout out to Lisa Lightner who was nominated for a Bloganthropy Award for her excellent work in special needs advocacy. Her website, A Day In Our Shoes is a must read, these posts in particular:

Common Mistakes Parents Make in the IEP Process

Special Factors to Consider in the IEP

What’s made you an effective advocate for your child?