Advocacy Approaches — The Bull in the CSE Shop or Advocating with Grace?

I may have mentioned that I’m attending a Lay Advocacy Training program sponsored by the Long Island Advocacy Center AND hosted by the Long Island Parent Center. The course offers parents and educators the opportunity to learn more about the federal, state and local laws that govern special education and how to find the necessary information in order to be a better advocate for our own children as well as preparing us to help others advocate for theirs. I also spent 2 days this week conferring with other parents of children with Down syndrome at the Down Syndrome Advocacy Foundation’s (DSAF) Best Practices in Educating Children With Down Syndrome Conference, a wonderful gathering of parents, educators and local experts in the field, held at CW Post. At each event, I sidled up to a number of other moms; connecting and discussing every imaginable topic pertaining to advocating for the education of and services for our children. Giving, taking and sharing every bit of available information openly with everyone.

Amongst the literally hundreds of parents I brushed elbows with, all of us drawing information to help us become better advocates for our own and others’ children with special needs, I noticed an interesting dichotomy: There are, in my opinion, 2 very different approaches when it comes to advocacy.

The Aggressive Advocate: We’ve all encountered this person, the one who is outright angry at the state of affairs in special education and, whether advocating for their own children or helping another parent advocate for theirs, this person jumps into the CPSE/CSE ring swinging, premeditates the fight and often uses the big guns right up front… generally making for a relatively volatile confrontation. Now, admittedly we’re ALL angry to some degree about having to fight to get even the most basic services for our children with special needs. But, I’m saying that the overriding emotion demonstrated by this type of advocate is aggression toward the system that comes out as aggression towards every body… And I mean EVERY BODY! As a searching-for-the-answers parent, you can see and hear them coming with their barrage of “you have to…”, “You must….” and “If you DON’T, they’ll walk all over you….” This advocate would have you believe that the ONLY way to win is to fight like hell and do it their way!

The Assertive Advocate: This person sees the advocacy mission as an opportunity to proactively influence the decisions of the CPSE/CSE committee. Their tactics generally include light to moderate subliminal psychological manipulation (funny but TRUE) and the bait and switch (ask for more, settle for what you really want). Though they may be just as angry as the first advocate I described, the overriding impression is that this person is informed, prepared and capable of taking on the CPSE/CSE committee peacefully…. and winning (not just fighting).

Me & My Reaction: As a parent, the Aggressive Advocate makes me feel like an uneducated boor. When one of these advocates talks at me, I feel as if everything I’ve ever done with regards to the education of my children with special needs was an outright and utter mistake. This person makes me feel stupid, inept and afraid that I’m ill-prepared to parent a child with special needs… never mind I could actually go up against my fellow CPSE/CSE committee members. The Assertive Advocate, on the other hand, fills my head with information, gives me resources to learn more and identifies multiple winning scenarios. This person leaves me knowing I can’t lose… no matter what the outcome, there is always recourse.

Personally, I avoid the aggressive advocate. I know they may have some good information in between all of their take-control-of-me issues. But, the truth is, this life and playing the role of advocate for my children is challenging enough without having someone yell at me for not doing it their way. I’ve said this before and I will say it over and over again, there is more than one way to successfully raise a child with [or without] Down syndrome!

So, who do I want to be when I grow up? I hope that I can live up to the standards of the best Assertive Advocates that I’ve met and have had the pleasure to be taught by. To all you assertive advocates — Kathleen, Michele, Helen, Helene, Jennica, Valerie and many others — Thank you…. for sharing your knowledge, your demeanor and your tactics. And to all you aggressive advocates — you probably don’t even know who you are — if you see yourself even vaguely in the description above, tone it down, take a gentler more manipulative approach and remember, you catch more flies with honey.

Administration: Sorry I’ve been a bit incommunicado these days because, besides life being totally crazy, I’m also trying to figure out how to migrate my blog to wordpress for greater design and functional flexibility. That means, when I should be posting, I’m searching — unsuccessfully, so far — for answers. Needless to say, I’m still here on blogspot writing this new post which means I have NOT resolved the migration issues just yet and you, the reader, have nothing to worry about (as if these issues keep you up at night the way it does me… LOL). When and if I figure it all out, I’ll let you all know how the migration might affect you, the reader. And, by the way, I am massively honored that you are reading so thanks!

I know… blah blah blah!


About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
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5 Responses to Advocacy Approaches — The Bull in the CSE Shop or Advocating with Grace?

  1. SLKozul says:

    Maggie – hope your migration goes well, I've often thought about switching, but I would hate to lose all the posts/pictures unless they would come with me. hope today was a brighter day with your dad…I'm praying for you all – S

  2. Runningmama says:

    Oh my goodness, I totally agree on with you on the advocacy issue! I just found your blog from another DS blog I follow. I have a 10 month old with DS, her name is Emily. Look forward to reading more of your posts!

  3. Beverly says:

    great subject. wish you luck on the moving your blog over. is wordpress better?

  4. starrlife says:

    It's really a matter of communication skills and how people manage their feelings. It's the same with all parents- some are bulls in a china closet. I struggle to be skillful when a situation comes up since we have to all collaborate and not antagonize with "the system" which is made up of "people". And this is representative of a lifetime of living in the world that our children are just starting. Sigh… As for WordPress migration – I transferred my blogspot blog (the parts I wanted) over to wordpress, I don't remember it being hard- here's a link to an article, it's older but I think still relevant- I loved my starter blog on blogger but find alot less trolls and spam on wordpress. I also only moved some of my posts and just put up links to my old blog for a little while- unless you want to just delete it from blogger. Or you could just start fresh! Good Luck Maggie- you have some lucky kids!

  5. Sharlene T. says:

    It startles me at how aggressive some people can be in just normal circumstances. I don't know where that bullying (and, it's bullying) comes from but it makes for very difficult discussion. Just always ask yourself, "What makes them the litmus test for what everyone else should be doing?" And, let it go. You're doing fine.I'm trying to switch over to WordPress, too, and it's a little daunting. Thank God I'm not getting paid for this work!

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