EFF

            For “Autism Awareness Month”…which most real live autistic people and parents of kids on                             the spectrum feel should be called “Autism Acceptance Month.”

My friend Heather, @ Changed for Good, wrote a companion piece to this one; please check it out over at: http://changedforgoodautism.blogspot.com/2015/04/day-28-acceptance-is-not-awareness.html

I received this email last month:

[Swan Ayi {Auntie Swan}]

to me

Odd, NH [New Hampshire] Senate just voted to have Autism Spectrum Disorder printed on individuals' drivers licenses.  What's the point of that?

My reply:

[Full Spectrum Mama]

to [Swan Ayi]

EFF you, NH.

Hers:

[Swan Ayi]

to me

Agreed.

This is flat out DISCRIMINATION.

Suppose you heard that from now on all blonde people would be stigmatized in this way? Or all people with depression? Obviously, some blondes (depressed people…) may be precise, single-minded, “excellent drivers,” but others might have trouble focusing, or erratic behavior, or compromised intellectual ability, or – who knows?

Yes, they passed the rigorous driver’s test same as everybody else with a license. And, true, some blonde or depressed people might not need to have this factor listed on their licenses, but since some blonde and/or depressed people are “different” -- and therefore possibly dangerous drivers – the state of New Hampshire needs to make their condition perfectly clear to cashiers, police officers, airline personnel, restaurant servers, and so on…just in case.

No, I am not going to address the possibility that being autistic might affect some individuals’ driving or demeanor. So might being tired, or being an a-hole, or being worried, or distracted…

G’s shift to confidence has been so gradual, so delicate, so life-changingly wonderful. What does a ruling like this tell him and the rest of us on the spectrum, many of whom work so hard for our confidence and accomplishments and inclusion in a neurotypical world? As lame and wrong as they may be, such rules send a strong, potentially devastating message.

I’ll be letting those politicians know where we stand: My family, for one, will be spending as little time and money in NH as possible following this decision.

Love,
Full Spectrum Mama

BOOTY CRUMBS II

In Booty Crumbs I, which was mostly about how some of us notice certain things a LOT, there was a discussion in the comments about how hard it can be to get some kids with sensory processing differences to notice Crumbs (boogers, dribbles…), on their faces and elsewhere, under any circumstances.

Hygiene is a huge issue in the Full Spectrum household because G

1. Doesn’t notice schmutz, or

2. Acknowledge the necessity of basic, routine grooming,

3. Doesn’t care about either, and

4. Doesn’t have great executive function and so forgets even with multiple

    reminders.

Bottom line, G doesn’t give a rip – and getting him to do stuff like wash his face in the morning or clean giant glops of food off his fingers could be a full time job.

I worry about this for two reasons. First, I fear it threatens his hard-won social belonging. Second, it is part of the underlying sensory overwhelm that G experiences in many contexts – what the Asperger Experts call “defense mode.” G’s general awareness of how/what he feels – physically, emotionally -- can be undermined by an underlying overabundance of sensory and emotional information. 

Before I was aware of how certain experiences and environments affect me, I would feel anxious, desperate, dull, angry, numb – and I’d have no idea why I felt that way, and very few resources to quell these inner (for me – others may tend to lash out) storms…I now know this phenomena is known as a MELTDOWN. Things like unrelenting social interactions, feeling cold or, yes, Booty Crumbs, can trigger overload in me and lead to a wide range of negative feelings that are too big to process unless I am able to remember at that moment why I am having the feelings. I am learning to find environments that better support my neurology – and to take sensory breaks when that is not possible.  

Seeing the differences in G’s awareness and demeanor in different contexts has shown me that he is intensely affected by his environment. That sometimes means that he doesn’t have the attention or mental space for noticing stuff on his body, or doing things to keep his body “presentable.” Just as I’ve begun to address my own sensory and neurological needs, what it might take to create a context for my son in which he is willing and able to attend to his own hygiene routine and general bodily cleanliness without so much effort on my part?

Just the other night, I asked G if he had brushed his teeth.

He said he had.

I felt his toothbrush: bone dry!

Having spent several minutes brushing our teeth together morning and night for the last few years (since the dentist told me this was non-negotiable if G wanted to “have teeth”), and having each of those times painstakingly wrangled him into participating, letting G self-regulate on tooth brushing has been a big leap forward.

I was – maybe I was lacking perspective but – devastated…and mad: “Don’t you realize you could die???? If your teeth are rotten and you don’t take care of your mouth you will get diseases! And you will NOT be handsome!”

Full Spectrum Mama needed to go meditate. (Since G was a baby who needed a lot of support in going to sleep, I’ve tried to practice meditating nearby – usually in the hall outside our bedrooms -- after bedtime. Note: this does not always happen as planned!)  

G walked into the hallway where I sat, then into the bathroom to brush his teeth.

After a few moments, I saw this:

                                       Figure I – The Sideways, and Therefore “Invisible,” Sneaky Peek

He saw me seeing him:

                                                            Figure II – The Seething Meditator

…and went back to brushing his teeth.

How does tooth brushing relate to Booty Crumbs? Well, in both cases, is constant vigilance the answer? Already, with one kid with an attachment disorder, I have to watch the every move of one person in our home. With G, I’ve tried charts, lists, points…and am beginning to conclude that these are not the solution.

My own experience shows that -- for those of us with sensory processing differences -- self-awareness (emotional, social, physical…) may have more to do with finding ways to modulate one’s overall sensory and neurological situation than with the rote learning of ways to manage schmutz. I am in a place now where I am just very much hoping that somewhere in his own particular developmental process he/we will create the mental/physical space in which it becomes possible to note the intrinsic value of Booty Crumb removal.

For now, though, it’s back to brushing our teeth together.

Love,

Full Spectrum Mama

An InLinkz Link-up

THANKS, MOM/THANKS, SON!

This was written for the “I Don’t Need a Cure Autism Flash Blog.” 

For those who “tweet,” please use these hashtags throughout the day on 4/2:

#idontneedacure, #WAAD

Here is a true story that illustrates how I am trying to raise my son to accept himself just as he is, and to make his own choices about how he might want to grow as a person. I was particularly moved to join the “I Don’t Need a Cure” gang because of having used these very words to my son (before hearing about the blog) just a few weeks ago:

My son G and I were hiking up a local, kid-friendly mountain with the rest of the Full Spectrums -- my Pardner and Z, my daughter. I noticed G’s extremely rosy red cheeks and I knew he was feeling drained.

I remembered having those same red cheeks. I remembered how, as a child, everything seemed harder for me – not just the social stuff (!), but physical stuff like biking or running. I would get very red and work very hard when other people just coasted along or put in a reasonable (non-grueling, -agonizing) effort...

I would try to tell grown-ups how hard I was trying, but they thought I was lazy or out of shape. I had what I now know was low muscle tone, and sensory processing differences that made it super-challenging for me to follow team play. I know it NOW because MY normal course of development resulted in higher, more “normal” muscle tone later in life, and I am now able to see very clearly that I truly was experiencing challenges on a different level than others. I think I am generally a “fit” person now, though team sports have remained out of my purview (perhaps that can be attributed to a complete lack of interest on my part).

I know many activities feel harder to my son than they do to most. While my nine-year old daughter virtually runs up the mountain without breaking a sweat, my 13 year-old son is as red as a beet, even though his general levels of fitness and activity are basically the same.

Perhaps the hardest thing for me as a child was feeling misunderstood. I’ve always accepted difference, even (mostly) in myself, but I’ve never been able to learn to countenance injustice. So I wanted to validate G’s experience, and help him feel understood, in part by sharing with him how he is “sometimes a lot like me as a kid.”

I told him that “Everything was harder for me, when I used to go on family bike rides or runs, or when – this was the worst! – my family would make me join in soccer games.”

I remembered how agonizing those times were – how exhausted I would be, how misunderstood and alien I would feel because I didn’t enjoy the “enjoyable” activities my family shared, and because I felt like they judged me for how I felt, both physically and emotionally…

“I would get super red cheeks, just like you do! I was kinda soft, and floppier and ganglier than I am now. I got stronger and stronger as I grew up. I think you will too.

“Growing up is a process, and everybody does it in their own way. I suspect that for you, like for me, it’ll take a little bit longer for some parts of your brain and body to get in their best shape.”

I explained that my red cheeks and difficulty keeping up came from low muscle tone, a physical difference sometimes associated with neurological differences that made all my muscles have to work harder. I added that it was tough for me growing up neurodivergent in a way that I don’t think it is for him because the people around him and understand and completely, unconditionally accept him.

I thought about how watching my child encounter similar experiences in a very different context has been healing for me, and how grateful I am to be able to show him some aspects of life as a happy, healthy, self-accepting (all relative terms of course!) neurodiverse adult.

We walked a little further in silence.

“Thanks for giving me asperger’s and low tone, mom,” he said, sounding sarcastic and resigned.

I took a deep breath. “Buddy…don’t you like me? Because I like myself. And I like you too – a lot! It’s not that I want you to be just like me, you are absolutely your own person. But the things that make me a little bit different make me who I am and it’s the same for you. You’ll grow up at your own pace.”

“Of course I like you, Mom,” he replied. “But I want to be strong.”

“If that’s what YOU want, you’ll have to work hard to be strong, maybe harder than other people. But you’ll get there,” I assured him. “I promise. You can do anything you set your mind to!

“And once you do get strong, you will never forget how it felt to try that hard and succeed. You’ll always feel compassion for people who are having a hard time and accept and understand people who are different. Those are really good things!

“I like us both just the way we are. We can grow, when we want to. We don’t need to be cured.”

Love,

Full Spectrum Mama