Tuesday, June 19, 2012

Advocating without screaming.... Tips on Advocating for your special needs child

As a parent of two special needs children, one word I came to learn quickly (besides the words autism, stim, inflexible, regulatory, and vodka) was the word "advocate." When I used to hear the term "advocate," it would conjure up the perceived image of a crazed person screaming with a passion, waving pickets on causes they stood for, and persevering until their voice was heard. Now, just insert me in the place of the crazed person and change the pickets to IEP's or insurance bills and you could very well have the image of a day in the life of a special needs mom.

With my cause at hand, I set out on a mission -- to be the voice for my two "sliding under the radar" special needs children, to help others see my kids' unique needs, and rally the support for our autism and schooling journey.  When my eldest was in 1st grade and falling drastically behind academically, we observed that he was just not getting the individual support and allowances he needed...help!

After a few months (ok, maybe more like a year) of advocating, I found myself not really getting through or making much change. Really was I speaking another language? Why was I not being heard? Maybe I needed to scream louder or wave more studies in their faces? ...Isn't this advocating? 
But as it turns out, most people don't like being screamed at or being told what they are not doing well...shocking, hey! What I thought was advocating and helping my child was in fact starting to do more damage than good. Instead of  having help and support, I found myself alone. Oh no, had I become "that mom," the one who makes the school principle run for the closest door or that leaves the therapist rocking in a corner with a stress ball (sorry, Dr.R., but I wouldn't blame you!)?

After realizing that this advocating thing was pretty much a new language to me, I decided to (besides turn down the volume) start asking questions and learn how to better communicate, build relationships, and learn the system -- whatever it took to be a better advocator and ultimately get the help my boys need.

Tips on advocating for your child...

  • It's not only knowing what to say, but how to say it! Keep emotions in check and show a forceful calm.
  • Learn about how the school system works, especially the hierarchy and the order of who to speak with first.
  • Understand your rights as a parent, as well as the rights of your special needs student. 
  • Focus your point to make it clear and concise, don't tackle too many fights at once. Be effective.
  • Ask meaningful questions. IF you can, let them be the ones to offer services and come up with solutions.
  • Cite research, studies, data, and anything that can help back up what you are advocating for.
  • It's OK to disagree/not approve with what the school suggests as appropriate. Know your options.
  • If it comes to heads, breathe, stay calm and smile! (particularly hard at times)
  • Don't be afraid to be heard! If they are not listening, keep going to higher powers (see below).
There is so much info just on your school district's website when it comes to student/parent/teacher expectations. It is the collaboration and understanding from all those involved. Have a passion and respect with a somewhat unemotional response, and maintain one's self. Yikes, even as I type this, I know I am not that person; it has taken a lot to get me to the point where I don't cry in IEP meetings anymore.

At the end of the day, advocating is a fine line; after 6 yrs of working with the school system for my kids, I am still learning the balancing act.
  • If you scream too loudly and you are the pushy, emotional, and unrealistic parent.... that will inevitably put everyone on their defenses and off side. 
  • Or if you talk too quietly and are too afraid to rock the boat, your voice will not be heard and you won't be taken seriously or given the help you need. 
I tell myself, advocating needs to be delivered in the same way we talk to our children... We yell we get a tantrum back, too quiet we are not listened to!

Some useful powers to have in your pocket when you are not being heard and you have tried all that you can with the school and district levels directly:

Office of the Education Ombudsman - Resolve complaints, disputes, and problems between families, students, and K - 12 public schools in all areas that affect student learning. Based in WA, they work with families all over the country as they are the only office in the nation.

Office of the Superintendent of Public Instruction - (OSPI) is the primary agency charged with overseeing K-12 public education in WA state.

Other useful contacts: your child's therapists, private Educational Consultants, your local PTA, Superintendent, school board, state reps...Speak up!

It's an ongoing mission playing advocate for your child, one that can be full of reward and support. Don't give up, ask questions and remain positive for the right outcome!

Who have you found to be an effective ally in your advocating efforts?

1 comment:

  1. Great post, I am going through hell with our school and could really use some good advocating advice on speaking to be heard and effective, so thank you!