Friday, January 9, 2015

Third Anniversary Lists I: Advocacy

Over the last few years of navigating institutional systems (schools, camps, after-school activities…), I’ve come to see that advocacy takes many different forms. Here is a list of several types of advocacy and some of the key tools for success in each:

  1. The Long-Term Success/Short-Term Failure:
Sometimes, you might fail in your efforts on behalf of your own child…but achieve some success on behalf of future children in a given place or institution. I had one such experience this summer, and it was one of the most painful of my life. I haven’t been up to writing about it yet, and so will just say that I removed and protected G from a discriminatory situation and called the institution out on its very large mistakes in handling the whole situation. It took me a long time to get results, and I had to go to the board because the administration itself was astoundingly unresponsive, but I don’t believe any other family will have to endure what we did at that particular place again.

                KEY TOOLS:
                       a. Perspective
                       b. Long-Term Vision

  1. The Learning Experience:
Sometimes past advocacy gives one tools to share with other parents who might not be as experienced in advocacy. Over the last year, I’ve had several people in my area come to me or refer others to me for help with advocacy. It’s not that I am some “expert” – but I do have by now quite a lot of practice. Little things like remembering to scrape the cat hair off your clothes, or arm yourself with some vocabulary, can make a real difference in advocacy.

Another really huge thing is not feeling alone. 

                   KEY TOOLS:
                             a. Time (haha)
                             b. Ability to Listen, Commiserate
                             c. Ability to Share Knowledge / Research / Resources

[>>>EDIT: I apologize for poor list formatting. I am sure many of you can relate to the agony it causes me that the more I try to fix it the worse it gets. Something funky in my blogger template?]

  1. The Mixup:
Oftentimes, advocacy becomes necessary because a situation is misunderstood. People, especially children, perhaps most especially those with differences - such as my autistic son, G - may have a hard time articulating what they are feeling or what they have experienced, especially under pressure and/or with authority figures.

Mixups may necessitate Social AND/OR Academic Advocacy.

Here is something in this vein that happened this fall: G got suspended from his school-sponsored after-school activity for punching two boys. It seemed to the school like he was the “bad guy” in the interaction, in both the phone call and the serious letter I received.

But I know my son. He’d NEVER been violent before. So I asked him some key questions, you know, starting with a simple “What happened?” It emerged that these two boys had been teasing him for the last few weeks and he’d finally lost it at the moment when one of the boys was writing “[G] is a blundering idiot” on the blackboard.

I remembered that he’d told me some kids were teasing him, but hadn’t felt it warranted a talk with the teacher since G hadn’t seemed to be very upset and I assumed he would handle it himself with the IGNORE method we often discuss…Over the week in question, the teasing had crossed the line over into bullying. The leader of this after school activity – who, it turned out, was a high school student – had clearly been in over his head with this bunch of zany boys playing Pathfinders (for my fellow old fogies, that’s basically the new version of Dungeons & Dragons).

SO, what I did: I wrote the head of the program as well as the school principal and vice-principal explaining my child’s perspective and giving them some context. I acknowledged that hitting is never, ever acceptable and assured them that I supported their stance on violence and would speak firmly with G. But I also I asked that the other children be spoken to as well, and possibly suspended from that same activity for their bullying behavior. I asked that they ALL recognize that this was not a situation where a violent kid bullied others, but one in which a non-violent kid was pushed too far for too long. I think they got it, but only after my G had been labeled as violent and suspended from the program, which did have some impact on him.  However, with Mixups, there’s always that initial…Mixup.

Here’s a different example: G was failing math, his best subject, this fall. I worked with the teacher and with G and we were able to figure out that he was doing his assignments but not turning them in.  We adapted his homework assignment protocol to include turning things in immediately upon completion rather than waiting until the next class. Mixups usually have solutions…if people will speak out – and listen!

                   KEY TOOLS:
                            Detective Work:
                                                       a. Finding Out What Really Happened via  
                                                            Asking      and      Listening,
                                                        and then 
                                                       b. Finding Out What Can Be Done,
        and then 
       c. sometimes Fighting for What Can Be Done to
                                                       d.  Actually BE Done.

  1. The Temporary Fail:
Sometimes, advocacy fails, at least initially. We do have resources when this happens! There are lawyers and organizations that specialize in special needs advocacy, but sometimes other parents or people who share your or your child’s difference can be really great at figuring out options.

                   KEY TOOLS:
                            a.  (Internet & other) Research
                            b. Legal Aid Organizations
                            c. Community (including online! For many of us, that’s the
                                           most viable option…)
                            d. Local and National Advocacy Organizations
                            e. Word of Mouth

  1. Success!
I’ve written in the “Process, Represent, Toot” link below about my fight to keep G’s IEP in the fifth grade. It was a doozy – but those of us who were on the kid’s team won. In my experience, the most common and daunting obstacles to students receiving the help they need are budgetary. Schools are required to “provide a free and appropriate public education” to all students. Those who don’t fit the cookie-cutter mold of the average student (and I would argue that percentage is very high) are harder to educate because they require Individualized Education, which is more costly! A formal IEP (Individualized Education Plan) obviously costs districts much more than warehousing “average,” “normal” students with one-size-fits-all teaching.  So, naturally, they want to – or HAVE TO - minimize the proportion of students served thereby.

That’s not to say you won’t encounter people who want the best for a given student. I have personally seen a teacher put his job on the line for my son. It’s just that this system makes it more likely you will have to advocate for your child or yourself. Start by being there -- as often as it takes. In addition:

                                     KEY TOOLS:
                                               a. Knowledge
           b. Confidence (Fake it if you need to! But remember: YOU
are the EXPERT on your child, the one who knows most intimately what he or she needs to succeed. 
c. Persistence -- Keep at It         
d. If possible: Enlist Other People

  1. Self-Advocacy:
Things ARE changing. Not fast enough! These days, we ourselves and our children are learning to know ourselves as equal, to know our own individual strengths and weaknesses, our quirks, gifts, and challenges…As knowledge around neurodiversity spreads, there’s more respect and acceptance for all.

I recently had a long talk with one of my students whose daughter sounds like she has sensory processing differences. I was telling this mother how it felt to be spectrum-y growing up in a world with ZERO awareness and how NOW her daughter will have so much more understanding and can learn to advocate for herself...

Just yesterday, I said to a friend, perfectly casually, nicely, “My brain is full and I can’t talk to you anymore.” She totally got it. That never would have happened ten years ago. Those of us in neurodiverse communities are openly telling our stories more and more; we are feeling increasingly comfortable advocating for sensory adaptations, executive function aids, acceptance of tics, flaps and awkwardnesses…ADVOCATING for What We Need.

Of course discrimination is still an issue, as are many aspects of living with disabilities and differences. With sharing our voices and teaching our children and ourselves how to Self-Advocate we can continue to grow a world where acceptance and equality prevail.

                     KEY TOOLS:
                             a. Self-Awareness
                             b. Willingness to Grow
                             c. Conviction
                             d. Ideas for Adapatation(s) (I prefer the word “adaptations”
to “accommodations,” which sounds to me like somebody is doing somebody a favor)

Here, gleaned from commonalities among the above genres of advocacy, are what I see as  THREE MAIN TOOLS FOR ADVOCACY:

1.      HELP YOURSELF (whether to help yourself or someone else) – Do the research so you know what’s legal, appropriate and possible.


3.      KEEP TRYING – Don’t give up. Or, at least, if you do need to give up, don’t give up forever. Take a break! Build your strength and hope and, when you are ready, resume advocacy.  

Good luck, my friends!

Full Spectrum Mama

P.S. For more posts on Advocacy, please check out:


  1. Yes, lots of different ways to advocate, but starting with helping yourself! I appreciate that you put in the "don't give up...but take a break if you need it" - I go through phases when I'm more active and then just need a break - feels like I'm giving up but it's only temporary to recharge and refocus!

  2. Thank you, Stay Quirky!
    If there is one thing I've learned as I get older is that sometimes I need to be...not at my most productive or rigorous (that's my tactful way of saying this ;) ) until I can recharge and be stronger and more active.
    The difference being, I can now say to myself "Aha, this is one of those times when i just - can't" - rather than some of the more self-critical, even hopeless things I would have said to myself (repeatedly, with this brain) in the past.

  3. Love how you broke this down (wish I'd had it ten years ago.) Thanks for this!

    1. Thank YOU!
      That is Exactly why I wrote it...well, for the people who are where we were prior to gaining this knowledge, often the hard way...

  4. Awesome list!

    As I was heading into it, I was expecting something entirely different, but I like what you did with this. Thinking of this list in particular and some of the things I'm doing, I see a lot of #1 going on. ;)

    1. Well, we LUV our lists!!!!
      Did I mention #1 is So Hard? I think I did.
      Courage, dear!

    2. Yes, number 1 is the hardest of all, but it's also the way that creates the most lasting change. Failure is more motivating than success. Unfortunate, but true.

    3. At least we are "failing" "together"...

    4. That we are and it makes a world of difference! :)


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