MILCS

I recently spent a morning meandering and gabbing with a beloved friend. As we walked along a magical, secluded trail, she showed me some special spots where her children play together. “We are here a lot because we can’t be in public right now,” she confided. One of her children is going through a period of strong tantrums and the effort and strain of it in the social scene is just too much. She admitted how ashamed she feels when her child throws a public tantrum and how her fear of getting caught in that situation has vastly limited her social life. How isolating it can be…Having read some of my experiences here (and heard about them in person and seen them in real life), she added, “You know how it is!” Oh yes, Mama, I know how it is.

This conversation reminded me of some instances when I had no choice but to be out in the world while my children were going through changes. Bleak times filled with helplessness, anger, sadness and humiliation for all…Happily, what also came to mind were the times when someone – often a complete stranger – gave me love, peace and strength just when I needed it.

Everybody knows what a MILF is, right? Well, I want to talk about MILCS: Mothers I’d Like to Celebrate. I don’t even know if some of these people have children…But they are MOTHERS, for sure. See if you don’t agree.

Once, Z was having a ghastly tantrum and I had taken her outside to avoid disturbing G’s tae kwon do class.  People kept walking by and either totally avoiding us or looking pityingly at the poor, poor little girl.  Poor, poor little girl was so angry (no idea why, this was a daily occurrence at the time…) that nothing I knew of (not hugs, not threats of Consequences…) would stop the screams of rage. I was near tears.

As I stood there, trying to shrink as small as possible while still indicating that the tantruming child had someone watching her (for what that someone was worth), a woman came up to me and said, simply, “Mom, you are doing okay.” She wrapped me up in her arms and rocked me a little from side to side and then went on her way.

Hey you, lady who just hugged a pariah, you are doing more than ok.

Oh, here’s a good one. You know when someone thinks your child with an attachment disorder has autism and that your child with autism is neurotypical, or vice versa? Yeah, that happens to me sometimes.

I was at this fantastic storefront Aztec-Mexican restaurant in Norwalk, CT called Molcajetes (http://www.ctbites.com/home/2009/9/18/los-molcajetes-seriously-authentic-mexican-in-norwalk.html) with extended family when Z threw one of her most remarkable, powerful tantrums of all time. Full Spectrum Grandmother tried to intervene and got kicked for her troubles…Pardner tried joking her out of it with no luck…

Over the course of the next [period of time, I am not sure how long!] or so I spent with my rocking, growling, kicking, screaming daughter out on the stoop, not one but TWO women with autistic sons walked by at different times and commiserated with me over what they thought was a textbook autistic tantrum.

“Oh no,” I told each kind mother in turn. “The one with autism is sitting inside eating nicely!”

When Z was good and ready she pretty instantly stopped being upset and went inside and, with a big smile on her face, devoured enough food (fresh, garlicky guacamole and soft tacos and just-fried chips with that incredible slightly sweet cabbage salsa) to feed an army, which is kind of what she was. You need fuel for that kind of sally!

When Z was younger, I often felt as if people judged me as a mother for her behavior. I wished I could maybe wear a sign that said, “This is not a normal tantrum. I have tried everything you (or I, or anyone) could imagine to stop this tantrum and many others like it. Yes, my daughter was just hitting me and screaming as if I was hitting her but I was not, actually, hitting her…, as you can see right here with your own eyes. In fact, your staring at us might even fuel this little situation we got going on here. Now, please, I just have to sit here and wait it out so I would be so grateful if you would stop giving me dirty looks.”

Now that Z is a little older, people can tell her tantrums are not just run-of-the-mill. They can see that she is older than a “normal” age for tantrums, and that she is writhing and screaming, extensively, without any input. They seem somewhat less likely to be appalled -- and rather more likely to feel compassion for both the parent who stands helplessly witness to such an event and the child who cannot extricate herself from it – or let herself be extricated...

G has his moments too, whether from his really rare but quite memorable public tantrums to his more common general inappropriateness/cluelessness, not to mention flailing.

One time, after a hard day, I said to G as we were leaving a local co-op, “You have the most important thing, a kind and loving heart. Now you just need to pay attention to the world around you and work on your common sense.” (This is one version of my ad-nauseam-aforementioned Pay Attention to the World lectures.)

We had gotten into the car and had just begun to pull out of the parking lot when a woman with a silver bob wearing a striking purple jacket and lots of chunky silver jewelry waved me down, practically throwing herself in front of the car. Thinking maybe I had forgotten one of my organic, vegan, sustainable, equal-exchange, wallet-straining purchases, I stopped and rolled down my window.

 “That was one of the most inspiring things I have ever heard,” she told me. “It will echo inside me for a long time. Thank you.”

No, thank you, Ms. Silver-Purple Angel-Person. I will never forget you.

I tell these tales not to brag or make it seem like I am doing such a great job that was duly appreciated by these wise women (ha!), but to share that these women actually made it possible for me to Go On. Their simple acts of generosity have resonated in my life for months and years. They allowed me the space and peace in which I could settle my heart back into love for my children instead of fear. They made it possible for me to celebrate my children, just as they are, and so I celebrate them.

Just so, I hope when my friend who is stuck in the woods for now with her clan reads this she will know how truly I honor her finding a way to celebrate her children through it all. In addition, I hope she will encounter surprising (yet very welcome) love and acceptance when she does have to put herself and her family “out there,” just as I did with these MILCS: huge-hearted strangers, generous-spirited everyday angels who just

Went For It.

And guess what? We can all – in some way - do the same.

We all have the mental capacity to recognize opportunities to grow our hearts, to stretch a little or a lot. Sometimes it seems like we don’t have the emotional capacity to execute such acts of kindness and generosity, whether it’s due to emotive stinginess (high on the fear spectrum, no?) or the shyness of those on the awkward end of the social spectrum. It’s probably easier to be surprisingly kind to strangers, as these women were to me, but we encounter countless such opportunities of all sorts every day. And I am not talking about the somewhat trite “random acts of kindness” trope, because these acts are more than random. They are necessary.

You never know when your small action may make a real difference in someone’s life. Plus, I suspect our capacity to be generous and kind grows with the PRACTICE.  Be grateful for any everyday angel you meet…and pass it on!

Lest this seem preachy, I should add I’ve no idea what a generous spirit means to you in particular and no advice beyond the suggestion that choosing kindness at a given moment may resonate more than you’ll ever know.

Thanks and love forever, MILCS, and all you others trying to make sure your heart isn’t several sizes too small, and all y’all who are just plain trying,

Full Spectrum Mama

 

Tripping

We visited Great Gram in North Carolina for school vacation week. Although my beloved Gram looks to me like the most beautiful person on earth, the children were naturally wary of the old, bony lady lying in a “rest home” bed. G had grown up knowing her well, but in more vital times; she’d been declining since Z’s arrival home. After adjourning to the hallway for a wee chat – to wit, FSM hissing, “I know she looks a bit scary but she is your ancestor and neither of you would be here if not for her and she loves you even if she doesn’t always know who you and this will probably be the last time you see her so get in there and give her a hug!” – a decent amount of sugar ensued, after which we set out to explore the area.

Traveling with G and Z seems to exaggerate some of their atypical ways of coping, simultaneously highlighting their anxieties and differences while drawing out their remarkable dual propensities for joy. I kept noticing how -- despite Pardner’s and my sometimes near-constant admonitions (to “not hug strangers,” to “not take your clothes off here,” to “listen and allow the tour guide to speak…” (at the International Civil Rights Center & Museum - http://www.sitinmovement.org/)  -- both children possess a huge capacity for laughter and making things fun. 

Of course, being my Full Spectrum babies, they express this in their own special ways. In an unfamiliar environment, G copes with total pokemon immersion, embodying different personae for each situation.  Self-regulation in terms of appetite, sleep and so forth go out the window, and parental regulation becomes more crucial. He rises above largely by crafting pokemon-based jokes at every turn.

Z copes via incessant planning, especially of destinations and menus, as well as by recruiting any likely candidates (candidate pool: anyone who thinks little girls are cute) for unbridled, extensive conversation and free samples. Regulation of environments – social, internal, spatial – becomes paramount. She lightens up, though, with abandon -- and a scurvy belly chuckle for her brother’s every pokemon joke. 

This tendency toward enjoyment – heck, let’s call it Play -- was delightful to see. It functioned, too, as a counterbalance for my realization that my children have a great deal to learn if they are ever to function well outside of their comfort zones.

In our Full Spectrum, strengths and weaknesses are integrally connected. Case in point: We are driving around and realize we have gone the wrong way. Pardner announces that he will have to make a U-turn. Z announces, in her inimitably regal way,  “I don’t want to make a U-turn. I want to take a ME turn.” We – all of us -- laughed about this for the rest of the trip, even though the fact that it was actually true for Z was mildly disconcerting.

Now that both children are in school, spending twenty-four hours a day together was freshly grueling and amazing. Each late night would find Full Spectrum Mama and Pardner lying on the bed staring vacantly at the Holiday Inn television with mouths agape, shell-shocked, knowing full well that G and Z would start their preliminary grunting and fidgeting around at five in the morning…yet nonetheless unable to sleep.

This experience has confirmed my long-standing hunch that traveling with kids should henceforward be referred to not as vacation, per se, but as “tripping.”

The day we got home, I was thrilled to see an article in the local paper about a child in a neighboring town with autism who was graduating from high school and exploring his next steps. I expected to learn about resources in our community and people with whom I might connect. I began to feel sick to my stomach as some of the language in the piece sank in: “trying to determine what was wrong with her son” was the phrase I still cannot shake.

Language around disability is so loaded. Labeling and differentiating language may be useful in accessing services and, in some contexts, increasing understanding. But great care must be used. Although all those involved in the article must have meant well, I remain disappointed by the overall implication that there is something about people with autism that needs to be “fixed.” Such language might fittingly be used in some cases of attachment disorder, an often dis-abling condition that results from difficult circumstances and which may, with luck, ultimately be healed. Autism, in contrast, involves – among other things -- different ways of perceiving, processing and interacting with the world. These modes may well be held as equally valid to those of neurotypical individuals.

Maybe this is not the current mainstream, on-the-streets perspective? After all, there is a vast spectrum of variety in perceiver and perceived...especially with children who are remarkably hard to miss. 

Two new spectra coalesced from watching G and Z interact with strangers during our trip.  For G, a spectrum of tolerance emerged; for Z, one of engagement.

Figure I – Reaction Spectrum: Tolerance                    Figure II – Reaction Spectrum: Engagement

Adults tend to be engaged and/or charmed by Z. It can take quite some time before they realize – if they ever do – that they have been embroiled in a long, in-depth discourse with someone barely three feet tall and six (“six and a half, Mama!”) years old. This stage we will refer to as “disbelief.” Her relentlessness sporadically results in annoyance and more or less successful attempts at extrication. More frequently she is adored, even worshipped, for the tiny deity that she is. Obeisances are offered and accepted. Thanks will be proffered by Herself…if prompted.

The attachment disorder specialist with whom we are working recently told me that it is “harder for the really charming children to get the help they need because they get away with so much.” Z presents a scintillating exterior that diverts her adoring audiences’ gaze from her inner pain and her external transgressions. With inner healing, perhaps her dazzling shine will become more of a comfortable glow. 

The general adult-stranger reaction to my aspergian son seems to be one of tolerance. More negative reactions to his sometimes over-friendly or otherwise inappropriate behaviors include confusion and even anger. On the other hand, a decent proportion of people will go slightly out of their way to accommodate him – and a select few seem to truly appreciate his openheartedness and originality. There are even those who seem to celebrate his free spirit and flailing body.

The spectrum of stances taken by his fellow children, they of lesser patience and knowledge, veers slightly more toward perplexity and annoyance. With both adults and children, however, I get a lot of questioning glances, raised eyebrows and rolled eyes. I try to deflect such unspoken queries both because (this is one of many things I have learned about myself in parenting a child with autism) most direct eye contact makes me uncomfortable and because I demand that G be accepted on his own terms.

After one particularly stressful day in North Carolina, Pardner wondered whether “everybody has to, in some sense accommodate G.”

I disagreed: “I think the people who get G really get him!  If everybody were like G, the world would be a much better place. But,” I conceded, “much, much messier.”

I suppose I fit into the celebratory faction. Unlike the mother quoted above, I have never thought for a millisecond that there was anything “wrong” with my son. Calling someone “differently-abled” may be a cliché, but it is also deep truth.  The gifts of truth and heart and generosity that come with G could never be compensated for by “normality.”

One of Rudolph Steiner’s first students was a boy with autism. Steiner came to believe that people with autism were partly still in the angelic realm. That is, their engagement with the mundane world was limited because of an ongoing partial immersion in another dimension, one closer to source/truth. Thus the calculations and deceptions of ordinary people are alien to those with autism.

Steiner remains a controversial figure. I both agree and disagree with Steiner’s stance on autism: for one thing, the word “angel” can be a polarizing one; for another, people with autism are as varied as those without it…Yet there is something to be said for such a positive view of this “disability.” Stay tuned: perhaps another spectrum or two is called for.

Whatever their religious, philosophical or personal status, those people who wholeheartedly accept all children are angels to us. Neutrality is fine too, though surprisingly rare.

Love – and never colluding with the eye rollers,

Full Spectrum Mama

Tools

…In which I expound, dear readers, upon a small spectrum of handy-to-la famiglia FSM tools that might be useful and/or laughable in your rainbows.

The “My Bad”

We all aspire to the wielding of copious quantities of positive tools like respect, patience, unconditional love and consistency.

My favorite progressive tool, though, is more negative.

My mother’s generation – whether traditional or hippie-mama – often felt pressure to act as if mothering felt happy and easy at all times, as if motherhood was totally fulfilling and came naturally to all mothers. Parents, especially fathers, were deemed omnipotent and all-knowing.

As our culture has become – however incrementally – more open and less sexist, we have gained some additional tools at our disposal. We are now free to admit to each other that parenting is sometimes hard, and often baffling, and that – even as we fiercely, fully love them Every Second -- we sometimes don’t entirely like our kids at a given moment.

It may be even more important that we are able to admit to our children (friends, family, partners…) that we ourselves are human. So, I celebrate the following three phrases:

“I don’t know.”
“I messed up.”
“I ‘m sorry.”

The use of these phrases demonstrates that parents (friends, family, partners…) are fallible human beings who will try to figure stuff out and do better next time. Just like kids can be – if shown the possibility.

The “My Bad” is liberating, but by no means a license to ill. At its best, though, it offers possibilities of redemption, learning, healing.

The “Locked” Door

Among other things, Z’s agenda includes using the stovetop and oven at 2am. Because of this, I have had to confine her to her room until I officially get her up in the morning. This involves keeping a chamber pot in her room and my “locking”[closing] the door every night after I put her to bed. Somewhat paradoxically for Miss Independence – but well within guidelines set by the aforementioned therapist -- this has been a very comforting process for Z herself.

The first (initially) unknown-to-me reader of FSM -- and someone I think of as a real live guardian angel -- has degrees in Education of Young Children, Child Assessment and Development, and Psychiatric Social Work (with specialty in the field of children and families).  She also has decades of experience working with children. She keeps me on track and within the bounds of my knowledge while still tolerating, even celebrating, my flights of fancy. Any errors, of course, are all mine.

She recently asked me,  “How do you as a mother create a safe home for Z while still feeling your home is as you want it to be?” My answer was…I don’t. I used to wear a lot of jewelry, for example, until some of my most precious pieces disappeared. Some did reappear, only in different and unsalvageable forms.  Now my jewelry is so hidden away that just getting to it is way too much trouble for a busy mama.

Some other nighttime concerns, besides stove on-house fire-gas explosion and jewelry-ruined-gone include:

food-hoarded-infestations-grody stuff-smears-rot-botulism

lotions/creams/polishes-ingested-poisoning thereby

pets-tied up-enslaved

Z has her own jewelry and creams and an array of dolls and stuffies, but they are never quite enough. Her night machinations made this very clear. Admittedly, with her high level of competence we might teach her how to use the stove, etc. in the not-so-distant future.  Until then, we say that Z “isn’t ready to get up on her own.” We try to meet her where she is on the developmental spectrum, protecting and nurturing the baby inside, while allowing for her exceptionally high acumen on mental and physical spectra by essentially baby-proofing the house for a really, really advanced baby.

Oppressing Z was a concern, but her “locked” door liberated her from her compulsion to do verboten “projects” in the night and allowed her to sleep soundly, thereby enabling her to not only feel better but to feel better about herself.

Humor

Also from my children’s therapist-angel reader came the suggestion to use humor. She reasoned that with all the progress Z had been making I might begin to use wit in our interactions. Instead of sticking firm and strong to my “put the dish in the sink” order, for instance, I might -- according to therapist-angel -- say, ”Put the dish on the floor.” Essentially, I should continue to contain Z's actions -- but with a light touch.

Yeah, I am not ready for that yet. The therapist Pardner and I go to who specializes in attachment disorders suggested the same thing. He thought, for example, that when Z looks at one of her adoring aunties and haughtily points to her plate to indicate that more food must be provided I should say “Oh…is that a plate?” I told him,  “Please. Just tell me one thing to say for all situations. Funny is too confusing. In those moments I can’t remember more than that.” Someday I do very much want to be funny. For now, I aim for functional.

Ripping Bag

Z likes to rip. She likes to rip Everything. She rips paper into tiny strips, all of a size. She rips clothing -- seam from seam, or expanding upon a pinhole or snag.  She rips horns off beloved childhood unicorns saved especially for my some-day daughter. (I’m not bitter about that one.)

One day, after yet another ripping disastrophe, it occurred to me to fill a bag with stuff that Z not only could but Should rip. It was a great success and has substantially reduced free-form ripping.

Feel free to riff on this: what about a smashing bag? A coloring-on box? A food-hoarding bunker?

One Battle a Day

G has the typical aspergian penchant for obsession. Pokemon has been a focus for almost six years.  In order to make time for other activities and foci, such as eating and sleeping, we have devised a system in which we have one extended, all-out Pokemon battle a day, after which we have some time for discussion. A potential additional benefit to this system is that G begins to get the notion that other people have interests of their own.

When he raises the subject I can say, “Is this Pokemon time? Oh, you want to talk about Gyarados’s hit points? Good. We’ll talk about that during Pokemon time.” Ideally in this context, I don’t squish G’s interests, just corral them.

One battle a day is enough for anybody.

You flick, I tick

From time to time, G begins to develop a tick. The latest has been a sort of flicking of his fingers that seems to happen when he gets excited or anxious. Hoping to help him (and not his neurological hiccups) be the one in charge of his body I started a policy of “you flick, I tick[le].” That is, whenever he starts flicking his fingers, I tickle him. 

It is probably somewhat annoying, although he tolerates me.

“You flick, I tick” is also related to my “you flap, I clap” policy, for when G starts flapping his hands compulsively. These are intended as neither punitive nor judgmental; they should be merely observational. And, as I tell him, hey, if you love to flap, just keep on flapping…and I will keep on clapping. I like to clap -- and I love to tickle.

Tickling seems to be a good tool, also, when either child gets Stuck in a mood or thought process. Of course, this assumes a certain base level of receptivity to being tickled at a given moment.

Wouldn’t it be nice if we could tickle ourselves out of being stuck?

 

And, finally…

The “Mombulance” (also available in “Dad” and “Person” models)

“Wheee-oooh, Whee-oooh…” You hear the siren in the distance. It approaches…closer and closer. To your surprise, it pulls up outside of your door! You venture onto your stoop. A hunky paramedic steps out (gender – up to you).

“Ma’am,” s/he orders, “Step away from the residence. Put down the crayon, computer, dishcloth, phone and banana peel.”

Several other paramedics roll a stretcher toward you. As you climb onto it you note that a nanny and several fun, inclusive kids are headed toward your house, loaded with healthy, delicious snacks, games and educational yet entertaining dvds.  You see a special caddy full of trashy magazines affixed to the side of the stretcher. You wave sweetly to your children, who don’t even notice you are leaving. As you are rolled into the ambulance you see that you are surrounded by clean, uncluttered, chic-yet-soothing décor.

Hunky Paramedic hands you a beverage, informs you that en-route massage is available by request, and closes the back doors of the Mombulance.

You are All. Alone. Ahhh.

Ok, I made that one up.

If anyone has suggestions about moderating random sounds that seem to sound good to G Inside his head but sound really bad to those Outside his head and/or on curbing jewelry appropriation and repurposing please to inform.

Love,

Full Spectrum Mama