Wednesday, August 20, 2014



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.

Full Spectrum Mama

Tuesday, August 12, 2014


Robin Williams - who anecdotally was on the autism spectrum  - was someone I've long seen as an Aspergian role model: someone I could point to for G as a person who was successful on his own terms, perhaps even because of his differences.

I was surprised by how sad and shocking I found his suicide.

I was one of many. A friend posted a recent-ish (2010) interview in the Guardian in which Williams' struggles to connect and succeed socially were striking. The interviewer stopped short of making fun of his accents, obsessions and tangents...but the undertone was perceptible.

Tonight at dinner, G began reading aloud in an exaggerated robot voice. I know people have told him he sounds like a robot. At that moment it hit me: perhaps Williams was using his multiplicity of voices as my son was using his robot voice -- essentially as an alternate or cover-up for his own quirky cadence.

I wish Robin Williams felt accepted and heard just as he was. I hope if he's in heaven it's a wildly, happily neurodiverse (and wildly, happily diverse diverse) place; I hope - if what happens is that we come back - that he comes back in a context that **unconditionally** accepts and celebrates him; I hope if this life was all there was for him that we learn from his pain.

I hope younger generations feel that  their own quirky, heavenly voices are valid, worthwhile, beautiful. Because they are.

Full Spectrum Mama

Tuesday, August 5, 2014


As a variation on the theme of the Sensory-Processing-Differences-induced Full Brain, I offer The Burning Brain:


                                                                Figure I – The Burning Brain

And just one little Burning Brain story among many: There was a family-welcome, community-building meeting for our local Autism Spectrum Disorders group a few weeks ago. I’d never been before because I always have the kids with me at night, but thought I would go since kids were welcome this time.

En route to the meeting, we stopped by our town’s First Friday celebration where there is art and music and stuff. That was our first mistake. Two events? What was I thinking?

I began to get a headache.

We arrived at the meeting and there was a ceiling fan! And bright lights! You can see where this is heading…And there were a bunch of very, very nice people, mostly educators and paraprofessionals, at whom I could not look. No other kids, but hey, my kids are a lotta kids.

By this point I could barely see or hear. I could feel the inflammation inside my skull (see above), and my head felt like it was about to explode. Just throbbing with pain. The fans, the lights, the conversation, the nice, nice people? Unbearable.

I drove home trying not to vomit, got home, vomited from pain…

One single burning thing I was able to think during this episode: I can only imagine how a child would handle this!

This is Sensory Processing Disorder: a relative overabundance of stimuli (whether of activities or sensory input) causes migraines for some people. This same overabundance can also cause some of us to feel overwhelmed with despair, or anxiety, or anger and - especially before we are aware of Sensory Processing Differences - to not know why we feel this way. Kmarie Audrey has written wonderfully about this subject here

Again, imagine how this process of Sensory challenges leading to emotional/social/physical pain and/or overload would affect a child! A huge meltdown or tantrum seems almost – dare I say it? -- ”under-reactive” in this context!

My son, who also has Sensory Processing Differences, tends to shut down, or get more flappy and loud than usual when in Overload Mode. I talk to him about it, and hope he will have the words and wherewithal to deal with it as he grows up.

Me? I mostly get Burning Brain these days. Once I am in that state (and by this point medications do not help) my migraine will amplify any sensory input so as to make the smallest thing (lights, sounds, smells, movement) literally agonizing.

On the most basic level, I get why a clothing tag might make someone scream, why swinging on a swing soothes some and dysregulates others, why seeing a bright color could cause nausea or even vomiting…

There is a great deal of skepticism around Sensory Processing Disorder (SPD), so I write this for those who cannot put their experiences into words as well as I can (at least in writing), and/or who do not have an audience. As an adult, I have a certain legitimacy, where a young child might not. I am able to be articulate in ways that a non-verbal or less verbal person might not be...As a college professor and an individual with some level of “success” in life I implicitly have the credibility that those who are even more profoundly affected by Sensory Differences might not be freely given by others.

SPD is not an “excuse” for me – I have a good life! – but it is very real and very challenging and as a label it does explain some of my lived experience. For some of us, including many children and people with autism/autistic people, SPD – while it may have its positive aspects (about which I have written before and will write again) – can make life quite difficult.

We may need help. We may need accommodations. We may need creative solutions and adaptations. We will need understanding.

Please believe us.

Full Spectrum Mama