SHOULD I HAVE SAID SOMETHING?

“Speak your mind, even if your voice shakes.”

- Maggie Kuhn

Late October. I am on a walk with my puppy, who has just been diagnosed with Lyme. I stop to chat with an elderly neighbor, and we get on to the topic of tick “prevention” meds, veterinary care in general…She knows I am a writer and editor and tells me I “should have been a vet - what with the cost of tick medicine…” She says her granddaughter wanted to be a vet but “instead works with autistic children,” and, “What a mistake! It would’ve been easier to work with animals!” As I often am in such situations, I am, briefly, paralyzed. I wonder if I should say something. And I choose not to do so. 

For one thing, my neighbor is elderly and I don’t want to seem confrontational. For another, I sometimes get tired of always having to explain things and advocate; I save that energy for where it really matters: primarily for school, family and close community, and for thinking about and researching G’s future options… 

Later I realize it seemed like it would have been an “easier” choice if she had said “women” or “Chinese people” instead of “autistic.” But it’s NOT. In some ways, there’s a big difference between a casual statement by a neighbor and bullying or discrimination…But in a very real way these are all on the same continuum. 

Dear Persons, I can think of so, so many similar instances when I have said something about injustice or discrimination or stereotyping and some where I have not . Times when I have been angry and said angry things. Times when I have been bullied for standing up for my child. Times when I have been articulate, convincing, empathy-inducing. Times when I  have been speechless, like when someone yelled a racist slur at my daughter, or just plain confused. It can be scary to speak up, and, although I usually don’t lack the courage, per se, my sensory processing differences (SPD) can mean that when I feel scared I can’t also process a coherent thought/response until after the moment has passed…

And then…the election. Even my readers abroad know which one I am talking about. 

This is a moment in history when it is important to be very clear and so I want to say something here. Here is one place I speak up, always. I cannot separate out whether my stance comes from having one child on the spectrum and one child who is a person of color (and many family members and close friends of color and/or of non-hetero orientation/identification and/or on the spectrum and/or of non-Christian religious affiliation…), but my stance and our stance as a family is very simple:

The Full Spectrum family stands with all people of color and the Black Lives Matter movement. We stand with the First Nations of the world in their struggles for recognition, sovereignty, and protection of lands. We stand with our brothers and sisters on the spectrum, our disabled brothers and sisters, our differently-abled brothers and sisters, our diffabled brothers and sisters. We stand with our immigrant brothers and sisters. We stand with our Muslim brothers and sisters. We stand with our Jewish brothers and sisters. We stand with all women, as well as with LGBTQIA communities, with all people who believe in equality and the right to choose who we love, who we want, what happens to our own bodies  - and, further, we believe in equality and the right to choose even for those who don’t agree with us. 

We stand with all oppressed peoples, as well as with all people with financial, white, or other privileges who believe in equality and use their privilege(s) for good. 

This goes beyond wearing a safety pin, attending protests, and writing postcards as part of the Local Love Brigade, to being willing to open our home and beyond. When they come for you, when you need solidarity, call us to your side.  

Would we hide you? Yes. 

This is one time our black and white thinking serves us: there’s no room for equivocation here.

We families who have significant differences from “the norm” are used to standing up for ourselves - and, often, others. We might sometimes be tired, but we are experienced advocates, sometimes to our own surprise. These skills are especially important now, as we see hate crimes and discrimination on the rise, and ignorance being celebrated.  Sure, many will not listen or truly hear us, but some people will, and that makes our efforts worthwhile.

Figure I - Not Saying Something vs. Saying Something

Should I have said something? Yes. Next time I will, even if it’s hard, even if I’m worn out, even if my voice shakes. 

I hope you will, too.

Love,

Full Spectrum Mama

P.S. Coming up in my next post: ways to say something!

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

SEE EVERY SPARROW

Dear Persons,

One way to describe Sensory Processing Differences (SPD) is by using a filter metaphor: the sensory and neurological filters of people with SPD filter feelings, experiences, and/or surroundings differently than do the sensory and neurological filters of most people.

Some of our filters filter out more. Sometimes people with this sort of filter are called “seekers,” because they seek more sensory input, or they are called “under-responders,” because they feel/notice/process less sensory input than the average person does. 

Some of our filters filter out less. Sometimes people with this kind of filter are called “avoiders,” because they avoid the overwhelming input that certain contexts produce. They are also sometimes called “over-responders,” because they feel/notice/process more sensory input than is typical. 

Of course, all people have different levels of sensitivity, but these differences are magnified for people with SPD. Many people with SPD live with a mixture of filters, perhaps being extremely sensitive to taste, while craving strong movement (yes, movement is a type of sense, in fact, several sorts of sense - but that’s another post!). 

Sometimes a high level of sensitivity can lead to a sort of sensory shutdown that can look like a low level of sensitivity! 

Sensory integration - the seamless intermeshing of the senses, and the “normal” processing thereof - can be challenging for people with SPD. My son G and I both live with a mixture of extra-strong and extra-weak filters. Bright lights and artificial odors can knock me out, but I have severe face-blindness (prosopagnosia) and can trip over my own feet. Lights, smells, even loud sounds don’t phase G - and he shares my face-blindness in abundance - but there are other things of which he takes uncommon notice. 

One of the most wonderful things about G is that he notices every single bird in our environment. Not just your cardinals and goldfinches, but every pigeon - “Look! A pigeon!” “Another pigeon!” and every single sparrow we pass on the street - “Oh mom - do you see those cute sparrows?” “Hey, guys - a sparrow!” “There’s a sparrow under that car!” etc. 

Some people dismiss this constant-noticing, or rib him good-naturedly about it (“Wow, a sparrow!”), and it’s sometimes inconvenient and time-consuming, but I celebrate it with all my heart.

Imagine a world where every individual person was noticed and appreciated, no matter how similar, no matter how different. Imagine a culture in which everybody took the time, made the effort, to really see every single other person. I dare to think such things as gossip, bullying, stereotyping…all those evils that come from pre-judging others and from not seeing each individual as equal and worthy in their own way…would disappear.  

G doesn’t filter out every sparrow as just another instance of a drab bird among many. Instead he enjoys a sense of wonder for each tiny miracle of sparrow individuality. 

What if we all tried to see every sparrow? 

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

FOURTH ANNIVERSARY LISTS I: ADVOCACY

Dear Persons,

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:

Links:

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

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

http://fullspectrummama.blogspot.com/2015/01/third-anniversary-lists-i-advocacy.html

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:

1. INSIST!

2. PERSIST!

3. EXIST!

...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 can...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!

Next Anniversary List: FOURTH ANNIVERSARY LISTS II: ATTACHMENT DISORDERS.

Love,

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...

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

OUR FIRST ARGHER AND ACTIVIST AWARD

I know an Argher and an Activist when I see one, and, once in awhile, I am going to need to give a shout out to someone who really Arghed and Activised the heck out of something.

The first Full Spectrum Argher and Activist Award goes to a 14-year-old kid who happens to be on the spectrum and happens also to be a badass knight in not-gonna-take-it-anymore armor in Bay Village, Ohio who bravely came forward and called out the people who played a (warning: graphic and disturbing) TERRIBLE ALS Bucket Challenge prank on him.

Some people just can't get right....but some CAN! Bravo,  courageous one.

Please show your support at this Give Forward site.

Love,
Full Spectrum Mama

MIDDLE SCHOOL* PRAYERS**

(SUBSTITUTION POLICY:

Please feel free to change the terms of any of these prayers** if they feel useful to you! For example: *“Middle School,” might become ANY school or institution or event or transition; **“prayers” might become wishes or hopes or a more formal type of prayer…

This post comes out of our Middle School Special Education Transition Orientation meeting, in which most of the parents were crying – and shared many of these concerns; it also comes out of my own fears about this transition; and from a few things G – who’s playing it mellow on this one -- has said. But I think the generalities and specifics may apply in a lot of situations.

I open with “Dear Universe” because it seems most inclusive and I love how the literal translation -- “one song” – includes and unifies this big ol’ glorious mess of a world. Please substitute God (however you mean this word, or whatever word your faith uses), or any other concept here, including “Dear me, may I do my best to ensure that…”)

Dear Universe,

May our children have a gentle transition to Middle School. Specifically,

1.      May they not succumb to the horrors of Homework –

a.       In the DOING of the Homework, may they not find it such that it is “the last straw” in a day in which there have already been enough struggles to succeed, often in areas of extraordinary challenges,  whether social, academic, emotional, neurological, physical...

May they have time, still, to be kids. May they have time to play with their families, rather than always trying to “catch up” on all these many levels – and rather than their families having to spend most of their time together waging mighty battles in the effort to compel our children to complete said Homework.

May you uplift the brave Mama of the Middle School Special Education Transition Orientation meeting who saw fit to refuse to force her child to do Homework because she chose, instead, to let her child have fun following her child’s very, very hard work during the school day.

b.      And, Dear Universe, even more specifically, in the matter of the KEEPING TRACK OF the Homework, may we all gain skill and patience in this area, for  it is immeasurably harder to get kids who are already at their limit to bring home extensive and organized information about assignments.

While we may take advantage of online and phone resources at the Middle School, may that extra step send neither we nor our children “over the edge.”

2.      May our children be undaunted and unbowed by the rigors and pitfalls of Physical Education --
.

a.       May their PARTICIPATION be unmarred by being always last chosen and barely tolerated…May all games be inclusive – and may the choosing of the teams, if teams there be, occur by fair and just and random means.

May the words of the outgoing principal at the Middle School Special Education Transition Orientation meeting, “We think it’s important for all students to fully experience this social, competitive aspect of middle school,” have been misspoken, for, when they were spoken, you, O Universe, could hear the air go out of the room. You could hear, surely, the thoughts of the people of the Middle School Special Education Transition Orientation meeting and they were: Compete? Really? Some of our kids can’t catch balls. That does not make them “less than,” but listen lady, for most of us P.E. is not gonna be a strong suit for our kids…

b.      May the new ritual of CHANGING for P.E. be less agonizing and costly than we expect. Please watch over our children as they attempt to tie their shoes, maintain a modicum of executive function, not lose EVERYTHING, put on and take off the right clothes at the right time and in the right order, not stare inappropriately, and so forth.

And, lo, though they may not succeed in these efforts, may they nonetheless not get teased in the locker room for these or any of many other possible reasons…:

1.      In the matter of our kids’ UNDERWEAR, may you ensure that nothing too awkward or inappropriate happens during the aforementioned change? Please? One parent asks, as she did of me yesterday, may we ensure that my child does not have little kid underwear on? Also, may the underwear be pulled neither way too high nor way too low? May G, for example, not wear his underwear backwards and in a total wedgie as he is generally wont to do?  

We are not asking for a trade, Dear Universe, but we do agree to do everything in our power to make sure these risks are minimized, such as the pre-departure underwear check; it’s just that the locker room itself is out of our hands.

3.      Bullying. Universe, You know this is a HUGE one for those of us with differences and/or with children with differences!

a.       May our children not BE BULLIED.

Yes, Dear Universe, we know that Middle School is the world epicenter of bullying, and we know that kids who are different get bullied MORE …yet we dare to dream that our prayers that our children not be bullied might be answered, whether by a zero-tolerance school environment, social skills classes, that one cool kid is who so cool he or she doesn’t need to shun someone who’s “weird,” some combination of these, etc.

MAY NO CHILDREN - ANYWHERE - BE VICTIMS OF VIOLENCE FOR ANY REASON, O Universe. And may this particular prayer be as unnecessary as it should be, rather than as ridiculous and unrealistic as it actually is. 

b.      May our children not be misperceived as BULLYING -- or pushed into BULLYING by peer pressure or anxiety, or by being BULLIED:

There is then the type of scenario where our kids act in ways that appear to be bullying when in fact they are just clueless…and sometimes, like my G, really large and intimidating despite being a gentle and loving lambikin.

And there’s the scenario where someone who is already struggling is forced over their sensorial or social tolerance limit to a point where they lash out in what feels like self-defense.

The overall high levels of social awkwardness and hierarchical jostling that accompany this transition make these kinds of mixups more likely and we pray, Dear Universe, that our children be kept safe from these dreadful possibilities.

4.      May the issue of varying levels of Maturity – Or lack thereof -- …combined with hormones…oh dear.

May we somehow help our children navigate this particular minefield with aplomb.

Or at least a minimum of outright disastrophes.

G and his peers on the autism spectrum may by definition have developmental delays and those, combined with certain physical developments, make for a complicated mix.  Other non-spectrum-y kids in Special Education may have similar issues, including challenges around judgment and impulse control.

Heading into a context where almost everybody is a seething mass of hormonal, social and mental changes will be…interesting at best.

Dear Universe, you’ll recall when I was a VERY young 12. Curious about sex, hormonal, but very, very innocent. G is similar, but, if it’s possible, even more oblivious. What G lacks in commonsensicals, he certainly makes up for in heart-of-gold, but I am not convinced this combo will serve him well for the next year or two.

Therefore, in your infinite wisdom and harmony may you at least try to help him and the rest of our children entering Middle School to not embarrass themselves unduly.

Please watch over our children and prevent them from seeming to be stalkers. 

We beg - beg! - that you not let them be taken advantage of. 

Also, please see that the age of their bodies and the age of their minds and emotions correspond at least slightly, both within their own beings and amongst their friends.

And may they find friends, O Universe. Even just one friend. One who doesn’t care if they still like playing, for instance, pokemon.

5.      May our children operate their Lockers –

Dear Universe, can you see our kids being really great with the whole locker thing? The whole make way directly to locker/remember the combination/get the thing (or things) that was needed from locker and/or place the thing (or things) that was no longer needed in locker/close locker/find way back to where supposed to be thing?

Yeah…no. We can’t either.

Well what about the part where someone goes with them and oversees the whole thing – we’re so sure that will go over great in Middle School. Not.

Or maybe we could give them a list of the above steps to follow (read: give them a list to lose on the first day of school)?

Dear Universe, can you please O please manage this one somehow for the sake of our dear children?

Because this is one where our fear is mighty and legit, albeit probably incomprehensible to some.

6.      May our children learn Self-Advocacy –

For we are not omnipresent – and we are sometimes, we admit, exhausted. As well, mortal.

           

If possible, may they begin to integrate, for themselves, some components of self-advocacy development, however small, however basic: what questions will I need to ask to complete this assignment? Where will my challenges be and how can I access the help I need to be successful? What are my rights and responsibilities -  here, now?

If possible, may their Executive Function improve such that they are developing in awareness of what they need and how they may best be served in their own actions and in the resources available to them…

And, whether or not our children are mainstreamed or in more specialized programs, semi-independent or not-,

7.      May the help they are given be Helpful and not Non-Helpful –

Over the years there have been periods where I would begin to see some or all of G’s work and assignments written out in someone else’s handwriting. Dear Universe, as you are no doubt aware, G is able to write. Does it take him longer to write something than the average student or adult paraprofessional? Yes. Does he have dysgraphia and other learning differences around writing? Yes. Yet having someone do all his work for him is unequivocally NON-helpful help. I suspect the paras in question were trying to be kind, or to speed things up, make things easier for all parties…In any case I know they were not intending to deprive my son of a learning opportunity. But that is just what they were doing.

Dear Universe, some of us fear that in the larger Middle School context, it might seem easier to just sort of pass our kids through the system, using precisely this sort of non-helpful (to our children) help. This would be a great loss for our children.

May our children instead benefit from Flexible Support, where sensitive teachers and helpers recognize when help is truly needed but pull back to allow students to fly on their own where they are able to fly; sometimes, when necessary, fluffing up their feathers and wings, and, the rest of the time, letting students make their own, probably imperfect but unique and rewarding flights…

May we, the staff, their peers, and their teachers balance our children’s overt needs – for security, for routine, for “success” and success – with the myriad of wonderful possibilities for new experiences and learning out there in Your Universe, Dear Universe.

Big thanks.

Love,

Full Spectrum Mama