Thursday, June 6, 2013

How to Advocate like a Rock Star

When we exited the special education classroom the county intended to place Simon in, the representative accompanying us turned to Brian and I (who I think must have looked rather shocked) and said; "I am so sorry. I am so sorry it has to be like this. But you will have to fight. It is always going to be a fight. I hope things will get better."

Indeed, we were upset by what we saw. I won't go into the gory details, but the environment that we were sent to review was not anything like what I know Simon needs (and much less than what I want for him!). Unfortunately, we weren't being given a choice. As a kid that needs special education Simon's options are very limited. You either take what the county provides, or you hire a lawyer to fight for private placement in a school that deals exclusively with special needs (and will only accept you with county referral and therefore county dollars to follow). That option is one we are likely to explore eventually, but for now we want Simon to be with "typical" peers as much as possible, and that means public placement. 

Fighting for your child's right to be included, to have adequate access to necessary programs and tools to give them the greatest chance at success, or to simply be treated with the dignity and respect that every person deserves, is a fight that I am pretty certain all special needs parents will encounter at least once if not multiple times. You fight for it in small day-to-day skirmishes -- like reminding well-meaning people not to use the "R-word," or teaching other kids (and parents) how to interact with your child (you know, like he's a kid). Sometimes you fight for it in carefully chosen battles -- like taking on large organizations that need a wake-up call when it comes to their accessibility. And unfortunately, sometimes you realize you've just set foot in a war-torn nation where you're going to have to find a way to make a habitable environment happen -- like the healthcare system, or the realm of public education. 

We've been lucky up until now when it came to school for Simon. I just didn't realize HOW lucky we were until we saw how bad other places could be. The past several weeks have been a very distressing wake-up call on the state of special education. Fortunately, however, I'm (a pain in the ass) persistent and I kept asking to look at other programs -- even though the one we were told we had to go to wasn't right. And fortunately, I was allowed to look. Even better, I found out that though there are a lot of bad programs - there ARE other good programs, albeit fewer and further between. Once I knew this, I knew I had to fight for alternate placement for Simon. Today, I'm so happy to be able to report that we are able to make that happen.

I won't pretend to know all there is to know about advocacy, or about special education. It is a big, complicated, litigious thing and I have just scratched the surface. But, I have learned a few things and I want to share them here just in case -- like me -- you are at the scary start and not sure what to do or where to look for help.

So, here goes:

1. I've said this before, but it is worth saying again -- YOU ARE THE BEST AND ONLY EXPERT ON YOUR CHILD. You know what your child needs. You know what works and what doesn't. And, you have to admit it, at this point you have a pretty well developed "gut" sense about things (total super mom skill!). If what you are being offered seems wrong, trust that feeling. If it seems right, trust that, too.

2. Do your research. NO ONE else can do this for you. If you aren't sure about something or somewhere, insist on seeing alternate options. You can't know what you are looking at if you can't compare "apples to apples." ASK other teachers, administrators, therapists, doctors, and parents. Join all the social media groups for special needs parents in your area, attend the parties and playdates -- build your network (it is vital!) and then keep your ear to the ground so that you can find out the "scoop" on programs, teachers, administrators, etc. You can't use hearsay as a reason not to go with a program, but you can use it to let you know whether or not your gut was correct, and then you can dig deeper into the issues you are concerned about in a more informed way. 

3. Know the rules. Like I said, this is a litigious process. Ask about the rules of engagement, attend workshops, call advocacy services (there are even many free options available through therapy centers), to make sure you know what you can and can't expect. You have to be reasonable in your expectations (and yes, expecting that your child is safe, respected, and given access to adequate resources ARE reasonable accommodations to request) in order to have a chance at success. Make sure that your reasons and needs are expressed in a way that reflects exactly what you have documented (through school reports and other assessments) as what your child needs. Write it out. Provide documentation. Keep a paper trail -- no matter how many miles long that trail is.

4. Get help. Enlist the help and support of all the people that you know care about your child and want what is best for him. We were very lucky to have Simon's current school administration behind us -- their support was invaluable and I will thank them every single day. Even still, I called an advocate for expert advice, consulted with the experts at Simon's other care centers and found out exactly who to talk to "on the inside" about my concerns. 

5. Don't give up. Being persistent (as well as reasonable and polite) is key. Like I tell my students -- the only people that are guaranteed not to succeed are the ones that stop trying. That "trying" may not look exactly the way that you hoped (maybe you didn't get all -- or much, or any -- of what you wanted) but don't stop trying to make it work, talking to people, getting help, advocating for your kid and showing everyone how it SHOULD be done. All throughout this process, whenever the going got tough, people reminded me that the only way things will ever get better for all of our children is if those of us that can continue to stand up for them, as much as we can, whenever we can. Truthfully, "fighting the good fight" is hard -- it is time consuming, expensive, emotionally draining, and even disheartening at times -- but it is some of the most important work we can do as parents (and maybe as people). 

And what could possibly be more worthwhile?


  1. It is such a shame that we have to fight so hard, isn't it? I think the schools just assume we won't find out the law! I, like you, learned very early that the fight was going to be a marathon, not a sprint! Our best ally was Wrightslaw's books (especially "From emotions to Advocacy") and I attended one of his workshops! Things have been much better around the school since then!
    Best of luck!

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