Thursday, January 21, 2016


Every year, this time of year, I get to indulge in a series of posts that use my most beloved mode of thinking and organizing: LISTS.  The first in the series has always been on ADVOCACY, a subject central to most everything I believe, ponder, and do, as a mother and as a writer.

I’ll be heading into both three-year IEP evaluation meetings and high school transition meetings in a few weeks. Considering the week I have just had, where I
1. noticed on page 27 of a 40 page IEP informational packet that G’s services were being cut from 24 hours per week to 11 for this fall when he starts high school;
2. noticed that G was once again failing several classes and had to engage intensively with him and his teachers and paraprofessionals and case manager* to get him back on track, mostly around executive function matters; and
3. travelled 45 minutes to an away basketball game to watch G play, having attempted a four-tiered system to help him remember his gear (for the record: written list, email, lecture at breakfast, and quiz in car) only to find that he’d forgotten his shorts.**
            ...this was a great time for me to review my advocacy lists and get prepared for what’s to come! As my Meeting Friend can attest, this sort of schedule of minor disastrophes is all too typical for we atypicals, so any time can be a good time to sharpen our advocacy skills.

Here are my previous anniversary posts on advocacy, chock full of tips for success (and some choice “don’ts”) in delightful list form:


You can also use the “search” function at right to find more posts pertaining to this important subject.

Since I’ve been blogging awhile now, I’ve more and more had the privilege of being asked for advice and support from near and far around advocacy. It’s probably the thing I get the most queries and referrals about, and I am pretty sure that’s because we all get intimidated as well as confused by powerful, sometimes-inflexible, institutional systems that are larger and more complex than us, and full of people who have their own agendas, not to mention the need to become well-versed, quickly, in completely new subjects...All the while dealing as individuals and/or parents with navigating a world that is not always welcoming of difference.

I’ve come up with this handy-dandy three point list to summarize the key aspects of advocacy as I see them, after almost a decade of advocacy:

...And now for a little elaboration:

1. By INSIST, I mean, to go with what you know is right, whether anti-bullying or pro-services and –adaptations(–accommodations), whether at school, at work, in the larger world...Oftentimes you might not even know what the law or rule or adaptation/accommodation or service or policy is...but you know in your heart that you or your child deserves better. Is your or your child’s neurology, sensory profile, or other difference significantly impacting or impacted by your/their school (or work, or...) experience? Then something needs to change. Part of this step is finding out what can be done – finding a way to make things better – and then INSISTING upon it.

2. By PERSIST, I mean: don’t give up.  Sometimes our efforts at advocacy are flat-out exhausting. Sometimes they don’t help us or our children but they help others down the road (laws, do I have examples of this). If possible, keep trying: sometimes it might just take one more call, or google search, or email to another parent or a friend to push things over the line to full or partial success. Yes, there are a lot of things working against progress (on both smaller and larger scales), but there are good guys out there, and rules and laws that are meant to support equality and fairness...we as individuals can make a difference in the creation of and changing of attitudes and laws, too, but it takes time. PERSIST, dear reader, and find these people and these policies (or be/create them!) and let’s level the playing field!

3. By EXIST, I mean: you are a person! Yes, you! Take care of yourself. I don’t do this. None of us do. But we should. Especially when the world needs MORE from us, and we feel we’ve Nothing left. Sleep. Good, nourishing food. Taking a break sometimes and just reading or going for a walk...Am I ringing a bell here?

Life can sometimes feel like a roller coaster, all the more so when you and/or your child has/have atypical learning styles and/or neurology and/or abilities. When I contacted G’s case manager* to review his grades from the depths of a reasonable yet debilitating funk, she responded on that subject and then, later, sent me this:
I forgot to write it in my last email but...I have been meaning to let you know how amazing [G] was during his Socratic Circle in English class with [teacher]. He related the poem 'Kindness' to his negative experiences in [pre-move, reason-we-moved, elementary] school with bullying and was able to speak to how it made him understand kindness more. He also said that because of this experience he has become a more compassionate person. I was so impressed and moved by his thoughtful input. He was serious and thoughtful. It was just wonderful!
...This email kind of made up for the other disastrophes that week, my point being: take joy/comfort/light where you may need it! Seeking out and really listening to those who recognize/acknowledge/celebrate your or you loved ones’ real gifts are a part of self-care and feeding of the soul.

You know – roller coaster alert - I had mixed feelings when this (very kind and hard-working) case manager* subsequently told me that “[G] could be in an advanced language arts class if not for his issues with organization and writing.” I mean...what’s not happening for him at school that you are not helping him enough with these very issues (learning differences [a.k.a. disabilities – the language we choose is part of advocacy!]) to realize his potential??? Wait...It’s time to advocate...Ciao!


Full Spectrum Mama

* Ok, “Case manager” makes my son sound like a “case.” Yuck. Note to self: another advocacy goal for when things slow down....??
**The fact that G is on the basketball team is a subject for at least seven or eight future posts, which I will likewise write when the proverbial things slow down...


  1. Since you reference a few previous columns, and you make mention of your meeting friend, I have to supply the link to my all-time favorite FSM post about the meeting friend:
    Thank you for helping us all be the fierce advocates we need to be.

    1. Dadgum it, busted AGAIN (yesterday was mailman mention fail). meant to put that linkl in and SHALL, now!
      Love to my bestestest MF!!!

  2. Keep in mind that temperament affects why you advocate the way you do.

    1. Again, intrigued...would love to know more.
      Thanks and love,

  3. I am looking for people to collaborate with me on my book, Autistics Working. This book is not primarily for professionals. Instead it is a guide for autistic adults, their families and advocates, to inform and inspire them about the many paths to employment. I want to include art, blog entries, poetry from actually autistics. I have five grandsons who are autistic, they are my love and inspiration
    I would love to hear from Full Spectrum Mama or anyone else interested in illustrating/collaborating/blog submissions/ poetry


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