HANDLE Update

I took the week to let the HANDLE appointment sink in and now it’s sunk so far, I don’t know where it’s gone.

Hello??

Let me start by saying that Christine referred to Judith Bluestone as the Autism Whisperer and now I know why. Judith, the founder of the HANDLE Institute and the author of The Fabric of Autism in which she talks of her Holistic Approach to NeuroDevelopment Learning Efficiency (and her own sensory issues including what she now believes was her own struggle with autism growing up), is the most present and calm practitioner I’ve ever met. She gives the impression of having nothing else in the world to do other than be right there, with you, in that moment for as long as it takes. There was no rushing, no checking the clock, no referring to checklists or questionnaires. There was observation and conversation and long pauses during which she sat on the rug, bare-footed, and alternately watched, and interacted with, my son.

I love that.

The bare-footedness is not a groovy thing, it’s an information gathering thing. We all ended up barefoot that day, Dave and I because it was finally warm and we wore flip flops, Fluffy, Judith and the intern who worked with her, because the sock eating frog puppet couldn’t help himself. Judith needs to see the feet, to study the feet, to look for clues, and she hit on one immediately.

Plantar’s warts. Fluffy’s got a nasty cluster of them on his left big toe. We’ve been trying to get rid of them for a while now, trying Compound W, caster oil, and these days, duct tape, to no avail. Hmm, she said, How long has he had these and did I notice if he started asking for the mouth massages around the same time these appeared?

You know, it could be, I said.

It turns out, the spot on his big toe is directly connected to his upper jaw. She wondered if the pressure in his toe caused by the warts could in some way be disturbing his mouth.

Huh.

The assessment was Friday morning. Fluffy did puzzles, double-doodled with his eyes closed, experimented with red/blue glasses, and set up an elaborate pattern with little wooden blocks. We were in a small room and had to keep moving here and there in order to reposition the video camera to capture all the activity. He did great but understandably got antsy after close to two hours and spent the last 10 minutes trying to hurdle the camera and escape to the outer room where a big yoga ball beckoned him. He was ready to leave, tired of the new toys, having explored them all, tired of all the talking, simply tired of the whole scene.

We took a delightful and long lunch break and returned in the afternoon for feedback and to learn the recommended daily exercises to try for the next 6-8 weeks, exercises that would hopefully help Fluffy take in and integrate sensory information more completely and effectively. Judith and the intern took turns going over the notes they accumulated after reviewing our paperwork, the taped morning session, and their own observations. They got Fluffy, spot on. They also got some things I’ve never noticed, for example, that he protects his fingertips when he plays on the floor; he either rests the heel of his hand on the rug, lifting his fingers in the air, or curls them under and rests on his knuckles therefore missing all that information. I never knew that. But he uses those same fingertips like mad when he’s on the computer or manipulating his playmobile, I said. He’s most likely blocking during those times, Judith replied, shutting down input in order to do those tasks.

Her approach is all about looking at how the child takes in sensory information, where they may be blocking, where they are strong, where they are weak, and then design simple ways to wake up and strengthen these core systems in order to support the whole body. She also looks at how the many systems are communicating and works on increasing the internal exchange of information. So, she wants the child (or adult) to be able to use available means of taking in the world, and maximize the ability to use that information in an integrated way in order to allow for the most success back in the world where they can continue to take in more information. In other words–in order for them to be in the world without bracing for survival some or most of the time.

She says, Fluffy attentional priorities are at odds: his intellectual interests and natural curiosity is thwarted when survival needs overtake him. This makes perfect sense to me when I watch how he changes when kids are around. There is no physical ease. How can he be free to observe and experiment?

I don’t have a handle on HANDLE yet. The best I can do is say it’s similar in style to RDI in that it seeks to strengthen core systems in order to increase connections so that, at some point, the body/brain can get back on track, on a more ‘natural’ developmental pathway.

One of the things she wrote on Fluffy’s sheet was that he expresses concepts more than feelings. I hesitated, thinking of all the amazing things he’s said about his feelings, metaphors and connections he’s made. But then I realized that Fluffy really doesn’t express his feelings, his harder feelings in the moment. Fluffy may be a master talker but he’s not a master communicator. He can explain things, some very complicated things, in marvelously creative ways but when it comes to something basic, like, Stop that, or I don’t like that, he’s stumped. He becomes immediately dysregulated and overwhelmed; he lashes out.

How could her exercises, things like tapping his skull in a particular patterns, wiggling his fingers, rolling a ball on his back, stomping his feet, affect the way he’d respond if I started singing silly words to a familiar song and he didn’t like it? How would he say something simple like the not quite three-year old I watched in the park the week before say to his mom when she started playing a game of “I’m gonna get you!” that he wasn’t up for: “Stop it!” He said, his hand up, “That scaring me!”

I used to think his difficulty in this area was related to not mastering Variations (old stage 4) in RDI, that is was about impulse control, that it had more to do with not yet being comfortable with flexibility, making necessary repairs in order to stay in a pattern with another person. After listening to her, I began to wonder if it was due to miscommunications within his own sensory system.

Judith described things like interactions among the fluid in the inner ear in the vestibular system with the fluid system of the lymph system with spinal fluid that runs up and down the back, the neck, and all around the brain. She talked about the sensitivity of the tiny but significant trigeminal nerve that connects ears, eyes, nose, mouth, teeth, and jaw. She talked about how if one was blocking the information coming from the fingertips than one will have poor self-help skills; we need to use the tips of our fingers for dressing, brushing teeth, washing hands and face, putting on socks, zipping and buttoning.

We spent a whirl-wind weekend in New Jersey and New York City, interspersing our activities with our best stab at the assigned exercises. We returned Monday morning to make sure we had them down, got some pointers, and then set off for home.

It’s been a week and I tell you, I think it’s making a difference:

∞ There’s been no request for mouth massages the last two nights at bedtime.

∞ There’s been no aggression with other kids. In fact, he asked two kids he’s never met before if they’d like to play a game with him? He had his transformers, noticed they each had toys on their laps. Did they all want to play a game together?

∞ Yesterday, he requested a notebook for writing his thoughts. Today, he opened it and wrote, entirely on his own, “I Lov Mom.” with the period and everything.

∞ The plantars warts are fading.

∞ A few days ago, Dave said something that annoyed him and instead of hitting or growling or shaking his fist in the air, he marched out to the kitchen, saw me and said, “I’M IN A BAD MOOD! DON’T BOTHER ME!” I nearly fell down.

He’s been saying that sort of thing more and more. “I FEEL LIKE HITTING YOU!” but no actually hitting. “I DON’T FEEL HAPPY!” “I DON’T WANT TO DO THAT!” “I DIDN’T LIKE THAT!”

∞ Aggression, overall, is WAY down.

It’s huge. And it’s only been a week.

How does it work? Where are the balance boards and trampolines and hippity hops? All the various tasks to incorporate throughout the day, the push/pull/lift/carry? I don’t know. I guess what they say is true: there really is more than one way up the mountain.

We may look into a more traditional sensory integration program down the line, but for now, we’re sticking with HANDLE. It’s simple, it’s portable and if it’s really behind the changes I’m seeing, behind what looks like my son’s increased sense of clarity and safety and self-expression, I say Hooray! and, I wish we’d tried this sooner.

We Walked, Sort of…

(Tomorrow: an update on our HANDLE appointment. I promise. I needed a week or so to let it all sink in and simmer.)

Today was the Autism Imagine Walk, an event announced in the flyer Fluffy read with rapt interest a few weeks ago, the day he vowed to participate. I know it had something to do with wanting to be with his people, but if the truth be told, cotton candy was the biggest draw. The boy loves cotton candy, which he insists is very natural, Mom, made with only one ingredient, PINK sugar. He refuses to acknowledge that the pink got there by any means other than mother nature.

He’s been talking it up for weeks. He told everyone he was going to the Autism Imagine Walk where there’d be kids with Asperger brains like his, smart brains that make some things easier (math, reading) and some things harder (letting go of thoughts). He reminded us that he would eat cotton candy although normally he only eats cotton candy once a year at the Big Apple Circus when it comes through town in July. But this year, he would have it twice, only he’s have to share it with Daddy since he could only have half a portion with some protein so that the sugar wouldn’t race through his blood like wild cheetahs.

Everyone heard the same things. Many times.

Unfortunately, Fluffy got sick. It started out vague: his head hurt, he was feeling not right, not balanced. He couldn’t go on the morning walk with Beegu, our newly sleek and styling dog. He didn’t eat Dave’s famous homefries, so good they don’t even need ketchup. He ate three blueberries and beat me in three successive board games while I packed a lunch, for three. By the time we piled into the car, he seemed okay–subdued but okay.


We arrived once the walk was underway, parked and joined in at the end. There was quite a crowd. Fluffy rode in the stroller the whole time, a new sunhat with a ten foot-wide brim on his head. It wasn’t sunny but he kept it on. A wide brim provides security. It certainly cuts the view down to a more manageable size.

By the time we completed the walk and arrived at the jumpy castles and petting zoo and made our way to the retrieve the delicate pink confection, they were sold out.

Sold out.

WHAT? I wanted to shout. HOW CAN THIS BE? But you know, I looked down at Fluffy, peering out from under his tophat flying sauce, and he was remarkably docile.

It turns out, he was about to pass out.

Dave and I, always a model of proportion and reason, stood in silouette, our hands held high against a firey sunset and vowed to get him a cotton candy if it was last thing we did on this good green earth. Or rather, we whipped out the cell phone, secured a bag at a local grocery store, zipped over there and soon our son was plucking handfuls of pink pillow stuffing and placing it on his tongue where it melted into a pool of chemical wonder. And then he fell into a coma.

Not really. But he did sort of collapse. Turns out, he has 103.5 fever. But he got his cotton candy, that boy. It was like crossing the finish line at his own private Iditarod. He made it and then he was down for the count.

The sickness thing is upsets me. Fluffy is never sick yet since mid-February, there’s been only a handful of weeks when he’s felt right.

Once the Motrin and Tylenol had been dispensed, I called the pediatrician. She seems to think it’s nothing, a fluke, a ‘bad’ spell but she wants to do blood tests to rule out a few things, Lyme Disease, among them. That was all fine. She’s a very casual, hair flipping, everything’s going to be fine kind of a gal. But partway through the conversation she said, Well, now that he’s in school, etc. and I said, No, he’s not. He’s home with me. We’re homeschooling.

Pause.

Dr.: Homeschooling? OH??? REALLY? You didn’t tell me that.

Me: I’m sure I did. (I mean, what do we, get together regularly to chat? I see the woman once a year for a 6 minute check up.) I thought I mentioned that.

Dr.: No. You didn’t. I would have remembered that. Well, he certainly gets together with other kids, right?

Me: Not that much.

Dr.: But you have lots of kids in your neighborhood. He’s outside playing with them, yes?

Me: Um. Not really.

Dr.: But, what DO YOU DO? How will he get a chance to learn how to be with other kids? YOU MUST SOCIALIZE HIM. You have to work on the social piece!!!!!

And here’s the thing. Astoundingly, for all, I tried something new. I ignored her completely. I paused. There was silence on the line, and then I said, Okay, so you’re telling me that other kids have had this on and off sickness this winter? With fevers and all? And that it’s most likely nothing to worry about?

It was amazing! It’s taken me 47 years to realize the power of ignoring. Wow. I didn’t have to explain or defend or educate or anything! So liberating!

One day, I may write this woman a note about Autism and Aspergers and encourage her to educate herself so she can better serve her patients. I don’t mean a nasty note. I mean a well thought-out note about what I’ve learned through our real live experience with the Aspergers in our house.

But right now, my Fluffy is playing with Dave. The fever is down. He has real food in his belly. All is well.

The day was a success. I had the chance to see a woman in person I had previously only ‘met’ on the blog. We met at the Autism walk, she with her husband and two beautiful daughters, one of whom has ASD. They were so very lovely, all of them. It was an honor and a pleasure to spend part of our morning with them and I hope to keep our real-life connection going whether we stay in this neck of the woods or not.

I have some more things to say about the event as a whole, about how maybe it’s impossible to pull off the perfect set up when you’re dealing with so many people but I will say that next year I want to be on the committee and here’s what I’ll suggest:

Put the compressors for the bouncy castles AWAY from the animals. Loud noises frighten them.

Put big cans over the compressors and attach looooooooong extension cords so they can be placed far far away from the ASD kids. Loud noises frighten them.

Order a dozen bouncy castles so no one has to wait in line.

Estimate the attendance and then add another 40 % to that number.

And bring in truck loads of cotton candy.

Fearless Friday and MotherTalk

The cover of Arianna Huffington’s book, On Becoming Fearless in Love, Work, and Life, has a picture of a woman in a bathing suit, swan diving into the air. We can’t see the pool where she is ostensibly headed but we see her, confident, strong, arms reaching out, head held high. It’s a beautiful image, this woman soaring like a human star. It’s how I would like to be in my life.

It’s not that I aim for banishing fear from my life. Fear is part of the package. I like to think of it as I do anger; it’s a map. It gives you information. If I’m angry, I don’t need to push it away; I need to look at it more closely to find out what it is telling me. It’s usually about something that’s important to me. Once I zero in on that, I can redirect my energies to honoring that thing, that goal, that value, give voice to what feels disregarded in me or in someone else. Fear has information too. It tells me something feels dangerous.

But is that danger real? To be heeded? Or is to be observed and given a respectful pat on the back, a sort of ‘thanks for sharing’ as I carry on, doing ‘it’ anyway, whatever ‘it’ is.

I have a friend who talks about the committee that lives in her head. The committee is loud. There are a number of terrified kids on the committee who jump up and down in their seats and climb all over the table. They don’t have all the information; they don’t have the long view; they are a bundle of raw nerves and a tangle of BLACK and WHITE emotions; they panic at the slightest hint of danger as if their very lives were at stake. Things are not worth the risk according to them. Things are either GOOD GOOD GOODIE! and BAD BAD BADDIE!

She’s not going to get rid of the kids but she’s certainly not going to let them make the decisions. The tricky thing, she says, is in being able to tell when they have the microphone. Things get chaotic on the committee–Robert’s Rules of Order are out the window as everyone talks at the same time. It takes practice to identify the speaker.

I have the same sort of kids on my committee but they’re sneakier. They’re dressed as grownups and present themselves as reasonable and informed. I am trying to learn how to listen and do ‘it’ anyway, not in spite of them, but with them, not by being afraid of them, but by bringing them along. See? I can say to them as we go along, This isn’t so bad! See? We can do this.

It’s like what I’m trying to do with Fluffy and the world of social interactions. I’m trying to help him build memories of success, encode more and more episodic memories of himself trying something that feels scary and in the process, discovering pleasure, strength, confidence.

It’s easier when it comes to my son. Of all the 12 step meetings and therapy sessions, the Bradshaw workshops and self help books, the meditation and yoga classes, of all the conversations and journaling I’ve done over the years, the single thing that has helped me most in feeling the fear and doing it anyway has been mothering Fluffy. When it comes to what he needs, everything that can be gained is more important than the fear. Everything. I can’t even call myself fearless so much since the fear fades so quickly, I don’t see myself as stepping ahead of it as moving forward with only a vague sense of murmuring in the distance.

Me? What am I afraid of in my own life? Succeeding. Failing. Missing out. Being mediocre.

I’ve given up a lot in my life. When I was a kid, I wanted to play the piano. I did for a while and then I gave up. When I was a teenager, I wanted to be an actress. I starred in high school plays, got accepted at a prestigious acting conservatory when I was 18, completed the 2-year program and moved to New York City, bound for the stage. And then I gave up. I pretended I didn’t but I did. I waitressed. I slung hash with the best of them. I made my co-workers laugh. But that’s as far as I took it. A few years later, I took some writing classes. I got the attention of my writing teacher. I enrolled in college, I took more classes, got more attention and then I gave up. I picked it my writing here and there but I never let myself finish anything.

For some reason, Fluffy’s autism forced my hand and I began to write again. I have movie scripts in my mind, one woman shows tickling my wrists, a memoir waiting in my throat. And I’m getting to them, little by little, one plunked key at a time. This blog, begun as a lifeline during the early days of swirling fear when Fluffy’s eccentricities and various difficulties were first attributed to Asperger’s Syndrome, has become a portal through which I can reach my long arm back to the writer I was in my twenties and touch her hand.

She was a beginner. I’m still a beginner but guess what? Every time I sit down to post, I start, I middle, and I finish. I know, that’s not grammatically correct, but screw it. The creative process has all three parts: gemination, intiation, and completion. I was always good at the first two but without the last, without finishing, you build no momentum. I’m building momentum for the first time. And so far, I’m not giving up.

The actress in me still stands in the wings, waiting for the chance to walk out under the lights, wondering if everyone will see my heart beating through my neck. I’m afraid I’m not good enough. I’m afraid I’ll bomb. But so what? What if I bomb? What if I suck? What if all of you reading this laugh into your sleeve? WHO CARES? What matters is finding out who I am. I must be one of those kinesthetic learners–I learn who I am by DOING.

My son has made me stronger, braver. I’m on his committee. What shall I do? Jump up and down on the chair? Climb on the table? Shout NO NO NO when I’m scared about what’s hard for him? Not take the risks that can show us what he can do and be and have?

Mothering my son has shown me the only thing to do is pick up that whole committee, in the midst of their shouts of fear disguised as wisdom, disguised as apathy, disguised as reason and even as friend, suit them up and dive off the highest platform, risking and wishing, like a handful of shooting stars.

Weeeeeeeeeeeeeeeeeeeee!

This post is part of a Blog Bonanza hosted by MotherTalk and brought to you by a score of blogging women across the land. Go here for a list of those participating in Fearless Friday. Click, read, and carry on being the brave soul that you are.

Beegu’s Haircut

Oh my! Behold:

Before

After

New Daily Read

You must must must go here and read Like a Shark, a new blog by my dearest darling friend, Drama Mama. She’s brilliant, brainy, and very wise and without her daily emails, I would throw myself from the window ledge.

Okay, we’re on the ground floor, but stil. Go. Say hi. Give her the old Italian welcome.

Fear and Bravery

There is so much to talk about!

Vicki writes fearlessly about mama bravery in her Special Needs Mama column up at Literary Mama. Jennifer launches a new column, A Little More at Parent Trap and in this first article, she writes bravely about fear. They are connected, of course, fear and bravery, as Vicki mentions here in her blog.

It’s a big theme lately. Maybe it always is. It’s coming up a lot in my life right now.

You know I’ve been swept up by The Secret phenomenon. You know I am a bit self-helpy. I just finished reading T. Harv Eker’s, Secrets of the Millionaire Mind and say what you will but that guy knows a thing or two. He may have catchy phrases and corny workshop titles but he gets the emotionally undercurrents that drive so much of our behavior and beliefs, conscious and unconscious. I’ve subscribed to his weekly Millionaire Mind tips and this week it’s on, yes, fear.

T. Harv says, “Courage is not the absence of fear, but rather the judgment that something else is more important than fear.”

Since I attended a workshop on starting a Son-Rise program when we first found out about Fluffy’s autism, I get announcements from the Option Institute from time to time. This week it’s about an upcoming seminar called Fearless.

Lastly, MotherTalk will hold its first MotherTalk Blog Bonanza tomorrow: Fearless Friday, to spread the word on Arianna Huffington’s “Becoming Fearless” in which she (and here I quote from MotherTalk’s annoucement) “eloquently writes of women coming into our own and overcoming the anxieties and fears that can stand in the way of our happiness, our health, and our ability to fully participate in our lives, our relationships, our families, and in the public life of our communities and nation.”

Phew. Go Arianna Huffington!

Fearless Friday is the brainchild of Miriam Peskowitz, author of The Truth Behind the Mommy Wars. Bloggers everywhere will write about overcoming fear in a host of styles and situations. Go here to learn more about Blog Bonanzas and to find out how to participate in future events. As Miriam says, ‘the more the merrier.”

The message is clear. We must step out of our comfort zones in order to grow. I ask Fluffy to do that every day. It’s my turn.

I plan to do something scary and write about it for my Fearless Friday post. I don’t know what that will be yet. I’ve got one day to toss myself into the great unknown.

What about you?

Earth Portal Site

Check out Earth Portal.

Here’s a blurb on it:

“The Earth Portal is a non-commercial destination on the Web for news, learning and debate about the state and future of our environment. There will never be any advertising on Digital Universe websites and it will always be free.

The Earth Portal will facilitate the emergence of a new community to emerge, directly connecting scientists, journalists, policy makers and you.”

It looks very cool.

100 Hats

Hey! My article, Saying Yes When the Experts Say No is over at 100 Hats today.

Come on over and say hello.

Straddling

Yesterday, Dave took Fluffy to his horse-back riding session while I had a two-hour meeting with Dr. Asperger Specialist for the final piece of the many MANY part testing/assessment required for the upcoming IEP meeting. Fluffy and I will go see her together twice this week for in-person play and observation only. I hope. I hope we’re done with the sitting at the little desk portion, looking at the little pictures and answering the little endless questions.

The results of all the previous testing were sent to her ahead of time: the three meetings with the school psychologist, the three meetings for education piece, the two meetings with the speech and language pathologist, the two with the OT and the final word seems to be (sit down)

Fluffy is a very bright kid who has trouble in social settings with peers and could use some extra support with his pencil grasp.

Shocking.

To be fair, there was something in this whole thing that has been helpful, aside from how proud I was of my son during the whole process, his focus and stamina, for one. I don’t know if I could have sat through all that, literally SAT for that long being peppered with questions about Sally’s Aunt and Jeffrey’s ballgame, putting together variations on The cat is fat. The cat is soft. The cat jumped onto the fence. into one sentence for 15 minutes at a stretch. WHO CARES?

It turns out, his scores were through the roof, testing up to the 9 and 10 year old range in most cases and in some cases, no ceiling was found. It also turns out, two separate things are going on for Fluffy–he has Asperger’s AND he’s ‘gifted’.

I’ve always known he was bright but now I see that his cognitive strengths mixed with what is challenging about his Aspergers can make for a tricky situation at certain times like now, when he is waking up to his own self-image and looking for where he fits in. There is a pretty wide gap between what he knows, what he can figure out, what he can understand and what he can DO and I think that is contributing to the frustration and dysregulation we’ve been seeing in the last months.

Take the flickering thoughts. Fluffy struggles with turning off his systems at night. One of the things that bothers him is when his thoughts jump back and forth, when he can’t ‘let them go’. He also has what he calls ‘bad thoughts’ that stream into his head unbidden. I found a small box that we keep on his nightstand and told him that he could put his flickering and bad thoughts in the box. How? he asked. I showed him how he could wipe them out of his head by putting his hands on his temples, swoop them together, and then flick them into the air at the center of his forehead. He could them catch them and put them in the box or let them go. The box was able to hold them in as long as he needed. In the case of flickering GOOD thoughts, he could tap the box into his hand in the morning and they would fall back out. The BAD thoughts would NOT come back out. Due to the magic of Whatever You Say Goes that is the realm of childhood, the BAD thoughts would STICK in the box, even as the box was tapping out GOOD thoughts.

This has all worked beautifully. But I’ve noticed that he’s been wiping his hands across his forehead a lot, and not just at night. We’ll be out and about and he’s Wipe Wipe; In his booster seat, looking out the window, Wipe Wipe,; during dinner, Wipe Wipe. He won’t tell me what the thoughts are. This is entirely new for me, my son having thoughts he doesn’t want to share. I’ve tried in my best, “it’s okay not to tell me voice” to find out what those thoughts are but to no avail. I’ve gotten this much: they’re not about him and they’re not about me or Dave. But then, what ARE they about?

So, here’s the thing: his thoughts have no end. They come and go about EVERYTHING. They occupy him, puzzle him, fascinate him, intrigue him, scare him. And just as it seemed to me in an entirely intuitive way when he was an infant and toddler that he had no physical filter, than sounds, sights, feelings, temperatures, energies assaulted him from all sides, it seems to me that his MIND has no filter for all these thoughts, thoughts, thoughts.

Now, he is six. He wants to share some of these thoughts and he tries. But he doesn’t notice that the boy he’s next to at the park is barely navigating the very ground he’s walking on because he’s not yet two years old. He just dives in to share about Darth Vadar or the wild inventions of Alien Gromit who can travel at 10 billion times the speed of light. And the boy looks up, picks his nose, points to something off in the distance and says, DEEB! DEEB! and lurches away in his frankenstein walk and Fluffy feels slighted and that interaction is unsuccessful.

Or he wanders near some boys his age playing tag and he gets a series of BAD thoughts and he wipes wipes wipes at his head and even though I’m grateful that we came up with this strategy for dealing with bedtime flickering, it does look, well, unusual. The boys his age notice and snicker and run away and Fluffy feels slighted that he’s been left on a patch of grass alone and that interaction is unsuccessful.

And I tell you, he notices. If not the actual scene and series of cause and affect, he notices the energy of the scene and that each time, he is left alone.

This giftedness is wonderful. I embrace it. And I embrace his Aspergers as I continue to look for ways to teach him what he doesn’t easily or naturally know. I can use his cognitive ability to help teach him things, maybe more than I’ve been doing. But I don’t want to go from the outside in. I want to go from the inside out.

That is what RDI is all about. That is what Enki Education is all about. That, from what I understand so far, is what HANDLE is all about.

This mothering is about so much straddling, straddling like a great bridge between one land and the next. We stand firm but flexible, ready to make these adjustments, all the while keeping an eye of where they are, these children of ours, where they’re going, where and what we need and want to guide them towards.

This Aspergers and now the giftedness require their own bridging because Fluffy is straddling too, the great divide of what he knows and what is completely mysterious to him. And so we go, waddling and straddling, the two of us, hoping the shorelines get closer, and the particulars of the topography more distinct and readable.

The Sensory Hunt

We’re off to see Judith Bluestone at the HANDLE Institute’s New Jersey facility today. Our appointment is tomorrow. She will assess in the morning and then give feedback and recommended exercises in the afternoon. We then go off for the weekend, practice, and return Monday morning for a check-in.

The fee includes the full day Friday, the check-in Monday morning and follow-up check-ins for the next 6 months. I think she figures on seeing us every 6 weeks–not terribly realistic. I’m hoping to see her three more times, every two months. Even that may be pushing it considering the drive but we’ll see. If it feels like the right fit, I’ll want to keep up with it; if not, I’ll want to know why and what we can do to adjust and amend.

Over the weekend, we’re having a little family fun: Saturday in New York City for Dave’s book signing at this children’s book store for this new book and a visit with my dear friend, Kim, whom I haven’t seen in two years, and her sweet son. On Sunday, a New Jersey adventure and a visit with another dear friend, whom I haven’t seen in three years, and her two sweet children.

We’ve been talking about seeing Judith for months. Fluffy knows her as the expert on how to help the brain and body talk to each other. At night, during the mouth massage, while I’m applying 300 pounds per square inch of pressure to Fluffy’s teeth and gums while he fidgets with the eye mask and flips to and fro like a fish in the bottom of a boat, I say to him, I think Judith may be able to help us with this, with the yucky feeling in your mouth, honey. He usually says nothing, too busy directing and repositioning my hands just so, HERE, mommy, do it like this, dun dun DUN, he intones as he slides my fingers to the front and back, ending at the underside of his incisors, his sharp incisors.

The jaw. The jaw. I hear it’s the power center of the proprioceptive sense which is like the motherboard of the whole sensory system. It’s certainly a key area for Fluffy with the chewing at his shirt and the impressive production of saliva and the pressing of his mouth and face against things and people and the salt he craves and even the wide open mouth sounds of every nature that burst forth throughout the day.

I’ve been doing my best to help him with this piece but it feels like one of those bad movies where you run and run and the hallway distorts and telescopes away and away and the destination remains just out of reach.

I’ve taken Fluffy swimming every week since he was three, to the OT for the last year and half, horseback riding for the last 5 months; we’ve got a trampoline, a sit and spin, a ball pit with 800 balls shining brightly; we blow whistles and suck through straws and eat crunchy, chewy, stringy, hot, cold, salty, sweet things; we have playdough and moon sand and obstacle courses and hippity hop races and walks on the beach, movement and verse circles and lavender oil massages; I’ve read The Out of Sync Child and The Out of Sync Child Has Fun and even the lesser known, The Out of Ideas Mother Takes It Out On Her Husband and still, I know like I know like I know, there is sensory confusion and disorder that clouds the scene for my son and drowns out the view and the sound from without and within.

I’m not pinning ALL my hopes on this one visit but I do wish for some clarity, for our approach and most of all, for Fluffy’s comfort and success.

Wish us luck.