This Mom

Resistance and Fun

Family portrait at a Florida mall; February, 2008. 

Three years ago this July, I went to my first RDI workshop. Three years ago this August, Fluffy had his first RDA. Three years ago this September, we started working with our RDI consultant. 

The first order of business was establishing what, at the time, was called the Master/Apprentice relationship but what is now called Guider/Apprentice. This was tricky. The way our consultant guided us–to keep Fluffy with us when he was resistant, stop the action and sit with him by our side–failed miserably. In fact, as much as I tried to end on a positive note during these struggles, Fluffy began to associate activities together with frustration and I lost some of his trust. 

It wasn’t until I went to the next RDI workshop and heard Dr. Gutstein say, “It’s never about trying to get your child to do anything. It’s about being in an interaction with your child where you both have a clear role and you are guiding them to a feeling of success.” that I really got it. 

I came home, scrapped the old way and began inserting tiny moments through-out the day where I initiated joint interactions. And by tiny, I mean tiny–ten, twenty, sixty seconds, tops. I thought of it as shaking on some salt, like seasoning my food, sprinkle sprinkle. We’d carry the bag to the car, each holding a handle. We’d sender/receiver library books into the slot: I’d hand them to Fluffy; he’d drop them in. We’d clean up a small area on the rug: I’d choo choo the box on the floor; he’d toss something in. We’d put a few books back on the shelf. We’d throw laundry into the basket. Tiny moments. And the trust returned. 

Things have changed over the years. Fluffy has become a good apprentice in many ways. I’ve seen his competence and confidence grow. I think I had some notion that one day he’d turn into one of those kids that walks calmly by my side, looking up every so often to see what I’m doing or where I may be looking, one of those kids that calmly comes by my side, watches me engaged in an activity and waits for his role to become clear, one of those kids that, well, calmly does anything. 

He’s not that kid. And I don’t think it’s the autism. 

I’m beginning to realize that Fluffy’s resistance is not so much about competence and more about his particular personality. He doesn’t like being led. He likes being in charge. He likes DOING it, whatever it is, on his own, in his own way, and in his own time. 

Some of it is what he calls his ‘Professor Distraction’ tendency. He says, I start to do what you tell me to do, Mom, but then I my mind shoots out a new thought and I HAVE to follow it, Mom, I have to! Some of it is simple forgetfulness, some of it, processing and motor planning challenges. 

We do a few HANDLE exercises at bedtime. They take about three minutes. I know Fluffy doesn’t mind them but you see, they aren’t wads of cotton candy or creamsicles or videos or extra computer time and so when I climb into his bed and pat my lap for him to climb on for ‘motorcycle helmet’, he ignores me. Or flops on the floor and becomes entranced by invisible bad guys. Or suddenly has to go pee. Or needs to read just one more sentence of a book he grabs from the shelf or he insists he’s hungry, really hungry Mom, about to starve or he needs water or he has an itch! Hurry! A really bad itch! Or he has to bite something, where’s his P? Or has to tell Daddy something super duper important or wants to show me something on the computer, lightening fast, Mom! 

Every night. 

And all through the day. 

I tell you, it can wear a gal down. 

Last night I asked him about it. I said, Honey, you seem to know what’s next and what I need or want you to do and yet you often seem to look for other things to do instead. I wonder why? 

Well, Mom. I’m the kind of person who likes my life to follow along a path of the most fun. That is always what I am looking for. Fun, Mom. I really love fun. 

What followed was a discussion of things in life that are fun and things in life that aren’t as fun but that are needed in order to get to more fun and I’m not sure how much got through but at the end of it, he climbed into my lap for the first HANDLE exercise, cupped my face in his cool little hands and said, Thanks for this life, Mom. It’s a really great life.

 

me and food

Last week, I went to a workshop led by Elizabeth Holtzman, author of the book Conscious Eating, Conscious Living: A Practical Guide to Making Peace with Food and Your Body, and during this two-hour period, I had a huge breakthrough with the food. 

Actually, it was more like breaking through to a new way of being. 

I’m sure you don’t want to hear all the details about me and food, my compulsive relationship with salami and potato chips, my propensity to eat many voluminous snacks from an upright position inches from the refrigerator’s hum and refreshingly cool and lighted open shelves so, suffice it to say, a single monumental utterance of speech turned my whole world around and here’s what it was: 

Give yourself permission to eat whatever you want as long as you eat it consciously. 

WHAM. 

Right then it occurred to me that I go into a kind of black out when I eat. Not always. No. But sometimes something happens to me and the next thing I know, I am groping an empty fig newtons box in the dark, a scattering of fig crumbs or newton crumbs clinging to my chin, my pjs, and sprinkled around me on the floor. 

I can eat lots of anything. It doesn’t have to even taste that good. In fact, the less satisfying, the more I eat, looking and looking for the pleasure that can’t be found. 

Remember when I found the answer with this book? Back in Florida, the land where poisonous jellyfish hunt down my innocent son? It’s the same answer now, the very same: Pleasure. Tuning into the senses. Reconnecting to the body, this one, the one dangling down there beneath my head.  

Since that workshop, I have been doing just as Elizabeth suggested. I have been eating whatever I want, consciously. This has required a change in lifestyle as I can no longer allow myself to do much of what I used to do: 

Eat while driving 

Eat while standing up preparing food for others

Eat while talking on the phone

Eat while writing

Eat while watching a movie 

What I do when I’m eating now is, well, eat. I allow myself to also talk while I’m eating as long as the person is live. 

It’s so invigorating! And it is taking zero will power. It's not a will power thing. It's not a striving against. It's a tuning in, a sinking into my own internal stream.

I see how much my misunderstandings, my distortions, my scarcity about time is connected with the food. If there is no time than I must eat while doing everything else. If there is enough time, I can prepare the food, sit down, eat it and then do the next thing. 

I am eating less, fitting into clothes I had pushed to the back of the closet, and denying myself nothing. 

Can you imagine? 



And now I must sign off so I can go consciously eat some of the fresh fudge Fluffy and I bought at the Mystic Seaport yesterday. 

Yum. 

Straddling the lines in the talk of autism

Fluffy and me, walking along a Cape Cod Trail; August, 2002, taken by Dave. 

I’m not sure where I fit in. 

I’m not an autism expert. I’m not an autism activist. I’m not an autism panelist. I’m not called for interviews or quoted in newspapers. 

I’m not willing to stand up and say, vaccines have never played a role in autism. I can’t say that. I don’t believe they played a part in Fluffy’s Asperger’s but that is all I can say with certainty. 

I'm not going to say, autism needs a cure. Cure is a loaded word. Those with autism are not suffering an illness. 

Am I a straddler? 

Am I straddling by not finding myself willing to topple over here where they say autism is a disease that ought to be vigorously researched in order to discover its cause and thereby, step closer to wiping it off the face of the earth? 

Or to topple there where they say autism is a joy, a difference to behold and honor, something parents ought not speak about in terms of difficulty, concern, or worry of any kind? 

Is it because I am mother to a boy with so much language? The ability to express himself with clarity and metaphor that sometimes takes my breath away? Is it because he washes and bathes himself, dresses, feeds, laughs at my jokes and fills our house with unimaginable life? Or is it because I have worked hard to change what needed changing in me in order to meet him where he was to find the best path to his learning? 

Do I just not know what it’s like to have a child who has more profound disabilities that interfere with a parent’s ability to feel and be effectual in providing what their child needs to learn and grow? Is it because I believe that remediation is possible and happening right now? In this house? In other houses? 

Is it because Fluffy's autism may be remediated to the point where he is able to make meaningful connections in the world and feel safe and make a contribution and have meaningful work, and then I won’t give a damn whether or not he still can be said to have autism or Aspergers? 

Is it because I think the issue ought to be: Is the world willing to see all people as valuable and capable of learning? and not: Is autism good or bad? 

Autism is. That’s it. Autism is. And there are teaching methodologies that are powerful and respectful and child-centered and they ought to be common-place and available to ALL. 

Autism is neither good or bad. It brings with it many challenges, some mild, some profound. It is right and good to work toward alleviating those challenges and if possible, eliminate them. Is this radical to say? For some reason, yes. 

Is it okay for parents to express their sadness and concern when they see their autistic child struggle with not being able to make meaningful connections in the world, feel safe, and contribute?  Why is that seen as against acceptance? 

Why is there this drive to decide ahead of time who is able to learn what and how much? 

I use to want to get rid of the autism. I felt it was a tic that was ON my son and I wanted it OFF. I was scared of it. 

But I’m not anymore. 

The change in me came from casting off what I heard and what I read and tuning in to what I felt and what I saw. 

You know, I put myself in the neurodiversity camp. I’m for the wide embrace. I'm not sure if founders of that camp would consider me one of them... 

I guess I’m for the wearing of slippers AND the carpeting of the world. I’m for both. 

Am I a straddler? 

A few years ago, I would say, “Fluffy is the kind of guy who...” and fill in the blank with any number of things that are now, no longer true. Is he still the same child? Or did he, fundamentally, change? Things that I and a number of autism specialists would have identified as expressions of his autism have changed and even disappeared. 

So, is Fluffy his Aspergers? No. Am I trying to get rid of his Aspergers by teaching him? No. Will he still have Aspergers if he, one day, behaves in ways that are not Aspergian? Who knows. Does it matter? Well, only if the goal of clearing away the confusion and fear that the Aspergers brings to his interactions in the world becomes synonymous with what is required in order to be accepted. 

In other words, what if Fluffy grows up extremely Aspergian? Is that going to be okay with me? 

There is nothing that Fluffy could do or say that would diminish my love, admiration and delight in him. But motherhood has brought with it this passionate preoccupation for my son’s happiness. I don’t care if he’s as particular and unusual as they come, as long as his life is working for him, or as long as he feels he’s got a reasonable hold on how to move in that direction. 

That's what parents want for their kids. And when that doesn't happen, there is pain. 

Somehow, when you have a child on the spectrum, this has become not okay for parents to talk about. Why not? 

I think fear drives the need to simplify.  If we take away the fear, we can allow for much more complexity in the conversation. 

I work towards a world that makes a place for everyone, that seeks to shine the light on discrimination, cruelty, ignorance and intolerance. I’m not out there, working in the public eye but rather in here, the micro-community of our own home and neighborhood, a very small circle of family and friends. 

I don’t like or dislike autism. I’m very interested in it. Fluffy’s version of autism is an everyday part of my life. I’m better for my experience with our version, not just for the obvious fact of my son's precious presence in my life but for what I’ve learned over the last few years, specifically about narrow places within myself that needed widening. 

I guess that’s where I fit in, walking alongside my son, straddling the lines in the talk of autism.

New RDI school in LA

I'm the kind of gal who craves home, a functional yet inspiring, open yet cozy, private yet integrated into community, ginormous yet modest, and stable–the sort of place I could imagine being until my spine compresses and I hobble around two inches taller and constantly regarding my ever-drooping boobs. 

I want to settle down. And yet, I see this and I think, hmm, a year or two in LA ought to scratch my itch for the eternal sunshine and a fantabulous school for my Fluffster. 

Check it out: the RDI-based Gilbert Hall School, slated to open its doors in Los Angeles this fall. 

Looks good, but I gather it costs a gazillion. 

Many things in no particular order...

1) Thanks to everyone who's weighed in with their own stories and experiences with medication, both for themselves and their children. It is hugely helpful, I cannot tell you. In the middle of our current chaos and impending displacement, I feel, as always, bouyed by the connection to community through these mysterious and invisible internet la la waves. 

2) Stress levels are at an all time high over at Fluffy Central and little of it has to do with Fluffy who is hanging in despite our housing crisis. We must leave this house by the end of the month. Our second bid on a different house fell through. A rental fell through. This current rental is now as hot as a sauna due to wildly inadequate insulation. Dave has been cooking up there--I run up and down the stairs periodically, to baste. I am trussing him as I type this and Fluffy, Beegu and I will be eating him, forewith, for lunch. 

3) Over the weekend, we all zipped off to Rhode Island to my nephew's high school graduation--more on that later. Suffice it to say that I am enormously proud of him and his mother, my sister, who raised him entirely on her own and did a phenomenal job. He is a star. 

During the party, Fluffy bonded with a typical 7 year old girl, battling odd creatures with her on my nephew's super cool playstation, having a grass fight in the yard, sharing his much-treasured backpack toys with her, and generally palling around in a way never before seen. Huge. Dave and I kept half an eye on him but in general, had the entirely new experience of being at a party with our regulated and independent child while we mingled with the grown-ups. We stayed from mid-afternoon until long after bedtime. No meltdowns. Only fun. A a bit too much wine for me. 

4) In our absence, our Rhode Island house has become infested with bees. There is a colony living in the watering can in the garden shed that may, in fact, be killer bees vacationing from South America. I crept in there to retrieve the clippers in order to hack back the rainforest-like growth when a swarm erupted from the tiny opening. I flailed my arms and stumbled backwards, tripped and crashed into and then over the lawnmower which I had forgotten was directly beyond the door. The ensuing gash required 18 stitches. 

5) I got myself into a panic this morning, convinced the wound was infected and that septicemia would kill me before the week was out. Such is my way. 

6) A trip to the doctor this morning proved me wrong. 

7) So, off we go to Rhode Island with our first load. We'll be back and forth over the next few weeks to take what we need for the summer and put the rest into storage. It's very dangly over here, dangle dangle dangle. 

8) We will make trips back and forth over the next few months in the hopes of finding suitable housing by the fall when we return.

9) Oy vey is me. 

10) I hope every one of you is not similarly as oy vey-ish. 

11) Miraculously, as Dave and I ride the stress swells, we do not fight. 

12) And Fluffy has left last week's camp experience behind him, encoding none of it as a failure. As Dan Quayle would say, he is 'heading forward into the future'.  That Quayle. He's a genius. I love it when I head forward into the future as heading forward into the past is so darn confusing.

13) Sometimes leaving is the best thing. 

14) But having somewhere to go is even better. 

15) Carry on.