SCHOOL TESTING, 2023

When my co-author and I committed to writing back-to-school posts as part of our #ActuallyAutistic book outreach with Jessica Kingsley Press/Hachette, I literally could not think of a better back-to-school message to uplift families than one about the glories of schools welcoming and celebrating our children exactly as they are. 

This post was originally meant to apply to the kinds of testing that children undergo during the U.S. IEP (individualized education plan) process, but it has resonated over the years with parents, educators, and students from all over dealing with standardized testing in general.  

And so, without further ado, here is "School Testing," a personal favorite--and my most read post of all time...:  

Dear Persons,

This spring, I received the voluminous results of a huge barrage of testing for my son G’s three-year evaluation for his IEP (individualized education plan). Among many, many, many other outcomes, I was informed that G had scored under the first percentile in “Irony.”

Although we have had him on a strict Monty Python/Austin Powers program for some time, and the kid has a fantastic sense of humor, we realize that perhaps he may well be lacking in “Irony.” Like many individuals who don’t fit the typical “norms” or test “average” in many areas,   G excels (sometimes extraordinarily) in some areas and is less skilled (sometimes remarkably so) in others.

In my experience, these sorts of test results--lower than expected, very uneven--are actually “normal” for many people on the autism spectrum, people with ADHD, people with sensory processing differences, people who are neurodivergent and/or disabled and/or differently-abled and/or quirky and/or don’t care about testing...

Just once, though, I’d like to receive some test results along the following lines:

Dear Dr. Full Spectrum Mama,

Here are our test results for your accepted-just-as-he-is child.

G scored in the 70^th percentile for “Telling Bad Jokes.” Although we found that his jokes were generally pretty lame, and noted, significantly, that he was almost always the only one laughing at said jokes, his score was slightly lower because he at times did in fact stop telling jokes, especially when asked to “stop repeating that joke which we have already heard seven times.” Still, this is a respectable “Telling Bad Jokes” score, and something he should feel good about.

We noted several areas of growth. G’s “Confidence in the Face of a Lot of Really Daunting Obstacles” outcome has improved by 50 percentage points – to the 88^th percentile - since he was last evaluated in his former school where he was getting bullied. Also improved were his ratings in “Zipping Pants” (up by 20, to 61^st percentile), “Blowing Nose Rather Than Just Letting Snot Drip Down” (up by 15, to 56^th), and “Overall Executive Function” (up by 3, to 4^th).

His “Amazing Metaphorical/Metaphysical Insights Not Necessarily Appreciated by Peers but Mind-Blowing for Adults” score remains very high (92^nd percentile), as corroborated by many of his teachers in the narrative portion of the evaluation; while the closely-related “Willingness to Write It Down According to Assignment, Dangit” score remains alarmingly low (5^th percentile).  

We would also like to raise some concerns around the fact that G’s “Remembering School Stuff” score of 8^th percentile does not seem to match his remarkable achievements in the areas of “Remembering How Many Days I Have Been Dating ___ “ (98^th percentile), or “Remembering the Tiniest Details About Every Pokemon, Ever” (99^th percentile) -  even with a 10% margin of error.

His IEP should reflect the need for accommodation in the former area, yet also take into account the possibility that G may have an asymmetrical range of priorities specific to his own...priorities.

Some of his strongest scores were in “Wonderfulness” (85^th percentile; this score was mitigated by “Teenage Rote Sullenness” [45^th]); “Interest in Girls” (98^th percentile; this test is administered according to self-reported sexual preference and controls for Trying-to-act-like-you-are-not-thinking-about-____-All.The.Time); and “Thinking About Pokemon” (90^th percentile; down nine points from previous score - possibly offset by “Interest in Girls”). “Knowing the Names of Pixies, David Bowie, Nirvana, and Red Hot Chili Peppers Songs,” at 65^th percentile, was also solidly above average. 

He should continue to build on these strengths.

Although he scored just above average in “Teenage Boy Flatulence” (58^th percentile), when measured against the general population G’s gassiness was easily in the top 10%.

Most importantly, for being unfailingly kind and polite (even thankful!) to our extensive testing staff, and for countless other reasons, G scored off the charts (above the 99^th percentile!) in “Being Himself.”

Congratulations,

The Testing People

Love,

Full Spectrum Mama

MIDDLE SCHOOL ORIENTATION -- THEN AND NOW

Dear Persons,

We remember our most terrifying life experiences all too well, right? 

My first Middle School Orientation as a parent was one such moment for me. 

My son, “G,” is now 16. He is a super smart, autistic, kindhearted 10th grader. 

My daughter, “Z,” is 12. She is allistic, very, very clever, and has some residual attachment-disordered behavioral traits that actually serve her well in her brutal 6th grade milieu. 

Four years ago, I attended G’s Middle School orientation. This spring, I attended Z’s. The differences between the two experiences were remarkable: 

Then: Abject terror for my child.

Now: Mild concern for other kids since, how shall I say this, Z and her friends are “still developing this skill” of the skill of empathy. 

Then: Both children sitting with me. I'm so tense that my little guy — not the most observant kid on earth — is sensing my alarm, and my little gal — showing her rare and dear soft side — is noticing the tears streaming down my face; trying to keep it together for them and for my own dignity, such as it was. 

Now: Sitting solo. G at another event. Z up on the balcony with her girl posse, all small but mighty. Scornful expressions masking…nervousness? Nah. 

Then: Tears.

Now: Yawns. Have already seen this presentation. Plus, not worried. 

Then: Curiosity tending toward fretting: Will these new teachers really see my child? Will he succeed here on his own terms? Will my child be bullied during this awkward time of life? Will G’s learning differences be scaffolded in such a way that his intelligence can shine? 

Now: Curiosity, pure and simple: What will those teachers I was in close contact with for G think when they meet Z? Will my child be actively kind to “different” kids like her brother? Will Z make an effort to do better if getting decent grades is easy for her? Will her developmentally appropriate “attitude” be toned down in class? In the lunchroom?

Then: All-out trepidation about the changes, from multiple classrooms to teacher-specific homework assignments.

Now: Relief, knowing I won’t have to intervene or oversee Z constantly—vis-à-vis homework or anything else. 

Then: Organizing Team Friendly Face.

Now: Admonishing (“Please try to look a bit less haughty — there are students here who feel intimidated and scared”).

Then: Praying.

Now: Sighing. 

My special “expertise” has always been around having two very different kids, but these four-years-apart experiences encapsulated that reality for me in the most striking way. It’s nice to see in this latest iteration that from time to time I am able to avoid having a total panic attack when a total panic attack is not warranted (I’ve wondered about that). 

Then: Despite all that, my kids are alright. More than alright! 

Now: Ditto!

Then and now, I am grateful for these two precious beings and for the ways we all persist in growing and trying, together. 

Love,

Full Spectrum Mama

 Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

An InLinkz Link-up

SCHOOL TESTING

Dear Persons,

This spring, I received the voluminous results of a huge barrage of testing for my son G’s three-year evaluation for his IEP (Individualized Education Plan). Among many, many, many other outcomes, I was informed that G had scored under the first percentile in “Irony.”

Although we have had him on a strict Monty Python/Austin Powers program for some time, and the kid has a fantastic sense of humor, we realize that perhaps he may well be lacking in “Irony.” Like many individuals who don’t fit the typical “norms” or test “average” in many areas,   G excels (sometimes extraordinarily) in some areas and is less skilled (sometimes remarkably so) in others.

In my experience, these sorts of test results – lower than expected, very uneven - are actually “normal” for many people on the autism spectrum, people with ADHD, people with sensory processing differences, people who are neurodivergent and/or disabled and/or differently-abled and/or quirky and/or don’t care about testing...

Just once, though, I’d like to receive some test results along the following lines:

Dear Dr. Full Spectrum Mama,

Here are our test results for your accepted-just-as-he-is child.

G scored in the 70^th percentile for “Telling Bad Jokes.” Although we found that his jokes were generally pretty lame, and noted, significantly, that he was almost always the only one laughing at said jokes, his score was slightly lower because he at times did in fact stop telling jokes, especially when asked to “stop repeating that joke which we have already heard seven times.” Still, this is a respectable “Telling Bad Jokes” score, and something he should feel good about.

We noted several areas of growth. G’s “Confidence in the Face of a Lot of Really Daunting Obstacles” outcome has improved by 50 percentage points – to the 88^th percentile - since he was last evaluated in his former school where he was getting bullied. Also improved were his ratings in “Zipping Pants” (up by 20, to 61^st percentile), “Blowing Nose Rather Than Just Letting Snot Drip Down” (up by 15, to 56^th), and “Overall Executive Function” (up by 3, to 4^th).

His “Amazing Metaphorical/Metaphysical Insights Not Necessarily Appreciated by Peers but Mind-Blowing for Adults” score remains very high (92^nd percentile), as corroborated by many of his teachers in the narrative portion of the evaluation; while the closely-related “Willingness to Write It Down According to Assignment, Dangit” score remains alarmingly low (5^th percentile).  

We would also like to raise some concerns around the fact that G’s “Remembering School Stuff” score of 8^th percentile does not seem to match his remarkable achievements in the areas of “Remembering How Many Days I Have Been Dating ___ “ (98^th percentile), or “Remembering the Tiniest Details About Every Pokemon, Ever” (99^th percentile) -  even with a 10 percent margin of error.

His IEP should reflect the need for accommodation in the former area, yet also take into account the possibility that G may have an asymmetrical range of priorities specific to his own...priorities.

Some of his strongest scores were in “Wonderfulness” (85^th percentile; this score was mitigated by “Teenage Rote Sullenness” [45^th]); “Interest in Girls” (98^th percentile; this test is administered according to self-reported sexual preference and controls for Trying-to-act-like-you-are-not-thinking-about-____-All.The.Time); and “Thinking About Pokemon” (90^th percentile; down nine points from previous score - possibly offset by “Interest in Girls”). “Knowing the Names of Pixies, David Bowie, Nirvana, and Red Hot Chili Peppers Songs,” at 65^th percentile, was also solidly above average. 

He should continue to build on these strengths.

Although he scored just above average in “Teenage Boy Flatulence” (58^th %ile), when measured against the general population G’s gassiness was easily in the top 10%.

Most importantly, for being unfailingly kind and polite (even thankful!) to our extensive testing staff, and for countless other reasons, G scored off the charts (above the 99^th %ile!) in “Being Himself.”

Congratulations,

The Testing People

Love,

Full Spectrum Mama

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

Third Anniversary Lists IV: The Complaint Department

Welcome to the Complainable COMPLAINTS of 2015. I am your guest host of this blog post, Partial/incomplete Monochrome Persona, or PiMP. Full Spectrum Mama usually takes the free time afforded her by my guest posts to sleep and grade and eat the necessary chocolate to prepare to teach long, hopefully non-boring philosophy lectures travel to exotic locales where she combines saintly deeds with sybaritic indulgences. So here we are, just you and me, dear reader…ready?

Almost a year ago, following 2014’s COMPLAINT DEPARTMENT, PiMP got a COMPLAINT for apologizing to a Complainant about something cruddy in their life. This Complainant argued that such soothing and comforting hogwash was not PiMP’s way and I agree. Here, COMPLAINTS are about being heard -- not being answered sweetly  or fixed, especially when THE COMPLAINT DEPARTMENT (TCD) is only officially open one day a year (on the 32^nd of Nevruary).

This year, your COMPLAINTS are all jumbled together, from pathos to bathos, giggles to grumpers, from COMPLAINTS about difference to COMPLAINTS about conformity to COMPLAINTS about, well, shopping…

We accept ALL acceptable COMPLAINTS here at TCD, and then we COMPLAIN them; although sometimes, people, you should stop flapping at the jib in public.

COMPLAINTS

* Let us begin with a deceptively innocuous COMPLAINT from FSM herself, who has shared many of her COMPLAINTS in previous posts, although she is saving up some doozies: I could be doing any kind of housework and the kids are nowhere to be seen but the instant I reach into my secret [medically-necessary] candy stash  -- “What are you doing, mom?” – here they come!

* My complaint is I am too overly busy to complain.

* Online adoption groups that act all surprised that people are curious about inter-racial families.

* This. Winter.

* In dealing with the oh so numerous challenges of adult life (single parenting, chronic illness, work stress, etc.), as the parent of a child on the spectrum, I am held to an absurdly high standard.  Spectrum-y kids use their parents as a barometer, often co-regulating off of us, so we can never, ever lose it, or even falter a little, without throwing a wrench into an already challenging situation.

(NB: Neither Full Spectrum Mama nor PiMP wrote the above COMPLAINT?!)

 * Some special angel who has a son with Sensory Processing Differences sent PiMP an entire LIST of COMPLAINTS – MWAH!

Complaint #1: I HATE that he bites his hand. It drives me CRAZY!!!

Complaint #2: I HATE that he hits our puppy when he gets mad at her. She is a puppy and when she chews on something of his or tries to steal his food, he hits her causing her to go into attack mode.

Complaint #3: I HATE that he jumps up and down, biting his hand and holding onto his sister's head. Oh...and she hates that too.

Complaint #4: I HATE that we have no OT services in our area and have to try and make time to do all of it at home (except for the 30 minutes per week through the school district).

Complaint #5: I HATE how I feel like I am ridiculed for my parenting skills.

Complaint #6: I HATE unsolicited advice.

Complaint #7: My biggest complaint is that I still don't know or completely understand all of his triggers and what will send him into meltdown mode.

* My biggest complaint is the school system in ignoring undiagnosed children who have obvious learning disabilities, and blowing them off

* Family/"Family"

* Competitive Parenting

* The magnetic force that draws children/husbands toward their mother/wife when said mother/wife most wants to be alone.

* The crust that forms on maple syrup bottles after a few weeks and makes it impossible to close the cap all the way.

* Not having time to head outside to enjoy that heartachingly beautiful hour between 2-3pm on a sunny winter afternoon.

* Not being able to prevent pine needles from getting everywhere when you take the Christmas tree out, and having to do it anyway.

* Mucus. The sidewalks and stairs to and from my workplace, restaurants and shopping areas are all dappled with glistening puddles of sluggy oysters in such concentration that it's nearly impossible to preserve ones shoes.  Men of the earth:  it should not be news that this makes you more a vector of viral plague than a testosterone bomb.  I am not convinced of your genetic superiority by the volume of sputum you produce.  Furthermore, It is uncivilized to leave a trail of bodily fluids in your wake.  Please knock it off. Just swallow it already.  Keep your contagion to yourself.

* Husbands who are so Modern/Liberated that they don't mind their wives bringing in most of the income.

* People who stop their cars to force you to jaywalk on their terms. Dear Driver:  My skilled sense of timing was finely honed by the great city of Boston.  I am not a squirrel.  I need neither your permission nor your help.  So, piss off.  I'll cross when I feel like it.

* I hate oatmeal. I hate it. Every morning. Healthy. Disgusting. Hate hate oatmeal.

* People who say "no problem" instead of thank you , or you are welcome.  This isn't new, and it is getting worse!

* My son with Asperger's is just starting to understand the subtleties, ups and downs, and fluidity of friendship.  I am thrilled -- that's not my complaint.  My complaint is that he is looming on the cusp of puberty, and the rules he has worked so hard to learn and understand are about to start changing and shifting at a crazy fast rate. I don't think he can keep up.  Not only that, but before he got the hang of friendship, he wouldn't have cared.  The double-edged sword of helping my kid to a higher functioning level is that now he will notice and care more when he is not successful.

* I hate it when you are paying for something and the cashier asks you if you would also like "something else." Why would you?  Or asks u if you want to contribute to the supermarket charity? No I want to pay for my @/&;@$ item.

* Not enough snow [flag: unacceptable COMPLAINT]

* Non-stop Christmas music -

All day,

24 hrs.

Including the Salvation Army ringing the bell before Thanksgiving and you feel guilty because they are nice to you.

* Supermarkets don't want to double bag and the managers come over to tell the staff not to and the bags are thinner than ever.

* Men's bathrooms run out of soap all the time and how are the employees washing their hands?

* Professional offices where they have the large TVs on with news blaring.

* When you buy newspapers and they have all the ads and flyers in them, or when you buy a magazine and they have all those subscription things in them, and they all fall out.

* Cereal boxes that are hard to open inside and you rip them and the cereal explodes.

* I think we should find the person who invented the halogen headlight for automobiles, strap him to a chair, tape his eyelids open & force him to witness the birth of a star... From six feet away.  Because that's what my drive home is like.

* Having my early morning time (that I only take once in a blue moon) invaded by breakfast needing children would certainly be high on the list if I was compiling it today.

* Parenting a special needs child can put a hell of a lot of strain on a romantic relationship.  Mine didn't survive it (the relationship, I mean -- the kid is thriving).  Undoubtedly, there were other reasons the relationship fell apart, and I will never regret putting my children first, and parenting my children is the most important thing I have ever done -- but I just needed to complain about how hard on a relationship it can sometimes be to parent these wonderful, challenging, different kids.

* My friend received her new “County Gardens Magazine” on 3/13, while I received mine several days later.

* You are the only parent at every school event, every meeting every everything. Your ex calls during one such event – an event you have notified him of several times even though you yourself only know about it from investigation and hearsay – and leaves a message saying he just got your message and nobody ever tells him anything and so naturally he is not at said event, because it is your fault. Because, you know, he is very special and should be sought out and personally informed by both you and your child’s large, urban school, of every event that might interest him.

Then your kid asks if he can call his father, so of course you say yes. He tells his father, “Sorry you were unable to make it. I love you.” And gets off the phone. Then your kid says, “Isn’t dad awesome?” And you crack: “You know who’s awesome?” you say, “the person who drives you everywhere, who attends every event you have ever been part of, every meeting, every school supply trip, every, everything. And you know who else is awesome? the kid who forgives someone who lets him down! THAT is who is awesome!”

Later, you say. “Yes, honey, your dad is awesome.” And your kid says, “You used to think he was awesome, didn’t you?” and you say, “When I married him I did, but…and I still do. And he loves you very much.”

* With three sons I worry about each one having the same struggles the oldest one has. It took until he was in middle school for him to get a diagnosis.

* Dear Complaint Dept.,

I have diarrhea.  And I am at work.  Every time I run to the loo and attempt to achieve a modicum of relief, two people walk in.  I’m outraged, bloated, embarrassed and lurching.

Thank you,

Crappy Complainer

* People are so in search of acceptance and approval.

This concludes the COMPLAINTS for 2015.

It’s never too early to begin feeling outraged for 2016 – so bear in mind that while TCD is rarely open per se, COMPLAINTS are always being reviewed for possible acceptability at jineffable@gmail.com.

Sincerely,

Partial/incomplete Monochrome Persona

Factotum, THE COMPLAINT DEPARTMENT

Guest writer/Troubleshooter @ Full Spectrum Mama

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

2. 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?]

3. 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.

4. 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

5. 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

6. 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.

2.      FIND and IDENTIFY ALLIES -- and ASK FOR HELP.

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!

Love,

Full Spectrum Mama

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

           

            http://fullspectrummama.blogspot.com/2013/01/first-anniversary-lists-i-advocacy.html

http://fullspectrummama.blogspot.com/2012/12/process-represent-toot.html

            http://fullspectrummama.blogspot.com/2014/01/second-anniversary-lists-i-advocacy.html