Tape Perimeters, or, Fear and Alternate Views of the Universe

Fluffy and his tape perimeter; October, 2007.

I’ve been thinking about fear, in light of NYU’s Ransom Notes Campaign, and the corrupt way it drives action.

When I discovered that my son, Fluffy, had autism, my own fear was great. When I started blogging three years ago, I said I wanted people to come into our lives, climb inside my son’s world and softly whisper, grow. I asked them to play and challenge and stretch so that his diagnosis would one day fall off him like a coat that no longer fits.

I don’t say that anymore. I don’t need the Asperger’s to fall off him like a coat that no longer fits. What I want is for him to feel comfortable in his own skin. What goes on his skin will one day be his business. I hope that he’ll be able to take care of that easily and appropriately long before he is off on his own.

My fear was and sometimes still is about my own ability to teach and educate, in other words, to parent my child in the way he deserves, which is no different than what every other child deserves. And what is that? Ideally? Many many things but in some ways you could say it is the loving, appropriate, and gradual withdrawal of support from a time when the child is completely dependent to a time when they are completely independent--a slow transfer of responsibility from the parent to the child.

Not every parent has this job. There are many children who will never be able to live a life of complete independence. And maybe we, as a society, place too high a value on that, complete independence, as if anything less is dishonorable, shameful, or sad.

My fear came from needing to parent my child, this real child, in a way that worked. In order to know it was working, I needed to see progress. Now, my way, though full of enthusiasm and great desire, wasn’t working, wasn’t providing the right stimulation for my son’s brain. Enter RDI and things started to cook. I was feeling calmer; Fluffy was progressing. Results! But the need to see progress had to be balanced with authentic celebration and acceptance of my darling child. I believe that process goes on in every conscious parent’s head and heart. We love our children just as they are. And we want more for them.

I’ve been looking for playroom help these last many weeks, people, as I said at the start of this journey, to come into my son’s life and softly whisper grow. I hired someone who was overflowing with enthusiasm and great desire in the interview.

The day before she came, Fluffy had constructed one of his tape perimeters.

Fluffy loves his tape perimeters--his phrase for his creations. He methodically unravels a roll of scotch tape, sticks it to walls and doors and countertops, intertwines and crosses, zig-zags and winds until the room is saturated with an intricate and sticky spider web pattern. I’ve heard him tell people he uses them to control the house. I’ve also heard him say they protect the house--they keep out intruders. Their construction is very deliberate, staked out according to a specific plan in his mind. They mean the world to him.

We aren’t allowed to touch them or dismantle them or interfere with them in any way. They make moving through the house ridiculous and impossible and after the first few times the perimeter went up, we devised some guidelines. The guidelines are working beautifully: tape perimeters may go up no more than once a week, on the weekends, only in his room, and must be modified at bedtime so that the achy old people in the house can enter and exit without getting on their knees.

La la.

The new playroom helper arrived. BOOM. She went right for the perimeter. She found out it was important to him, that he had his own rules about it and got it in her head that progress was about extinguishing the perimeter. That was her goal, one she devised on the spot without any input from us. She was there to MAKE SOME PROGRESS. Here’s an excerpt:

PH (playroom helper): What’s this?

Fluffy: My tape perimeter. It--

PH: Cool!

Fluffy: Yes. It’s my tape perimeter. I put it up--

PH: Can I touch it?

Fluffy: No.

PH: Why not?

Fluffy: Because it’s mine. I--I--I constructed it and I--

PH: Can we hang things on it? Like art? Like things you draw?

Fluffy: No!

PH: But look! It’s sticky! You could hang things on it! You might like it!

Fluffy: I--I--I--I don’t want to do that.

PH: But why not? You might like it? How can you know you don’t like it if you haven’t even tried it? You have to try new foods to know you like them, right? Right? So, why not try this? You might like it!

Fluffy: I DON’T WANT TO DO THAT.

PH: Can I touch it?

NO! I wanted to scream. MY GOD! SHUT UP! This, moments after she came in, before establishing any relationship, any trust, any sense of him of who he is.

She won’t be returning.

In my view, this sort of interaction comes from fear, fear or insensitivity which comes from fear too. Anything that isn’t coming from love is coming from fear. What if she had gotten Fluffy to let her touch it? It would have come from WINNING! She got him to do it! Now, doesn’t that feel good?

No. It doesn’t.

Listen, I want Fluffy to become more flexible, to let go, to try new things, even scary things. But there is a huge difference between wrestling something from someone and inviting them to share. The two things can look very similar but they are world’s apart.

And this is my issue with the Ransom Notes Campaign. They say they want to promote awareness but their actions and words comes from fear. And violence. Hostage taking is a violence. They are coming at human interaction from a siege mentality, literally, your child is under siege: what are your choices? Adopt a battle mentality, negotiate from a position of weakness, strategize, coerce, deceive, delude, attack? There is a divide. Lines are drawn. Sides are taken. It's more them versus us.

What if we were all on the same side? What if we believed in the opposite of fear? Only love? The desire to see, understand, connect, and draw out the child’s potential while staying awake to that which makes them extraordinary?

What if we left perimeters up? Until they transformed or until we, the seer, underwent our own transformation of perception? What if we let them fracture our view of the world so new ways of creating and recreating were possible?

Please add your name to the petition to urge NYU to come to their senses.

Comments

[Wendy]

Almost three weeks of silence. Where are you? (What a hypocrite I am! - it's been over three MONTHS since I've posted on my blog!)

Hope you had a wonderful holiday!

[kate]

Once again, Kyra, I am blown away by your amazing ability to capture in words so many huge issues. It is such a joy to read your writing, even when what you are writing about is difficult. I'm right with you on this.

[Michelle O'Neil]

So sad that someone who was trying to "help" would be so clueless.

Just the rapid fire questions would have had my child melting.

[tulipmom]

Incredibly moving post.

I'm fascinated with Fluffy's tape perimeters. My six year old (with Asperger's) is also obsessed with tape. One of his favorite things in the entire world.

[tulipmom]

Incredibly moving post.

I'm fascinated with Fluffy's tape perimeters. My six year old (with Asperger's) is also obsessed with tape. One of his favorite things in the entire world.

[jennifergg]

What a wonderful, beautiful post and I agree so whole-heartedly.

Thank you for writing so beautifully exactly what's in my heart, too.

[Jenn (aspergertopia)]

Thank you again for your words Kyra.

I experienced something similar today, and you described my feelings to a T.

Why are they so focussed on their own agenda? Where is the flexibility on their part? Why are they so focucussed on getting our kids to do something? So they can feel good about themselves?

Stuff it!

[M]

"What if we let them fracture our view of the world so new ways of creating and recreating were possible?"

New ways of fracturing. I like that. And silence is an okay thing, because there's an honesty to it. I can deal with and appreciate silence.

[Steph]

Yes, this Ransom Notes thing is well intentioned but scary. And how can we get the word out ... Asperger's, autism, and ADD are NOT psychiatric disorders. As J.E. Robison says, "just a different way of being."

[Steph]

You are such an amazing writer!

I find it odd that this helper refused to listen, refused to honor what Fluffy's web means to him. Instead she tried to force him to make it something entirely different, something that fit her safe notions of childhood. *Sigh*

I have often felt that when someone really "gets" my Aspergian daughter it's a rare treasure.

[M]

beginning around the age of 7, i went through a lengthy wall-touching phase. any room i went into, i immediately drifted to the walls and began touching them, running my fingers along them.

the sensory confusion was overwhelming and i had no help understanding it, understanding how to respond to it. for me, walls became a kind of containment method, a way to place set lines around my sense of self and it was comforting.

i did it without completely knowing why. fluffy: it seeems like he knows what he's doing. that is a bright, brilliant kid.

[Lori at Spinning Yellow]

Kyra - Once again you nailed it! Moving me to tears, putting it all together. "What if we were all on the same side?" Think what we could accomplish!

And I know that "helper", the person who wants you to do it their way, who doesn't listen and see where you (or your child) are coming from. I had a bad experience once with Scott when I tried to switch OT's. The new person was sarcastic and "joked" with him in an attempt to get him to do something. He was confused and upset and left in worse shape then when we had arrived.

[Niksmom]

Wow, that was some "helper!" (sarcasm). I'm fascinated by the tape perimeter. Is it b/c of the tape or is it b/c the tape is the medium which works to create his layout that he sees? How does he then navigate through the house? I'm proud of Flufy for standing his ground with the PH, too. That's not easy to do when someone sets themself up as "the boss of you." I'm sure he picked up on that, too.

[Alicia]

Thank you so much for bringing this to my attention. As an adult with OCD and Asperger's syndrome who has the privilige of working with young autistic children, I can't emphasize enough the importance of respect and acceptance for all people as they are, not as they might have been if they had not been affected by a disability. Perhaps especially at this time of year when we celebrate the humility of Christ in accepting our burdens as His own, even to the point of becoming a helpless and needy infant - how can we devalue any member of His creation as being somehow less worthy because of their needs or dependency?

[delilah]

I love how you weave everything together. You have quite a way with words.

[Autismville]

What a beautiful writer you are. Thanks for sharing your gift.

[Zoely]

i didn't look at the ransom notes til i read thru your whole post, which, btw, i love. i knew right off though...she didn't let him speak! who you need with Fluffy is ME.

the ransom notes i don't agree with. i don't like ANYTHING that creates adversarial relationships...i try to approach things, everything, from, how can we WORK TOGETHER? i don't think that rn's approach is unifying or cohesive, altho it's intent is good-hearted.

[amy]

wow. I usually just lurk here, and I think the last time I commented was when I told you to consider moving to boulder....but the tape thing. My son does excatly the same thing. all of the time. all over the house. he treats it more like an obstacle course, and i take it down after a day or so but it is the same thing. what a GREAT time he would have if he met fluffy. and i love that you can give these kiddos a role of tape and they can just go with it-most kids would just say no thanks and move on. too cool.

[Erica Orloff]

What a beautifully written piece about your child . . . very moving.

I've got four kids--none of whom have Fluffy's particular special qualities--but I think those fears about how we wish to parent them and match their uniqueness with the best way to get them to adulthood is universal. It strikes at me with my kids' different needs, as one is as different from the next as night and day.

Anyway . . . this was just very moving. I followed your link from another blog.

Happy holidays.

[Bonnie Ventura]

Kyra, my kids did exactly the same thing when they were little. They made "spiderwebs" out of yarn and stuck them all over the house.

I thought it was very creative...

[Special Needs Mama]

Oh what a beautiful image. I agree with Kristen. Send it to My Turn.

[karen in ca]

Wow. I think the perimeters is a great analogy or the many things we navigate as we help our children grow. My Pete has just decided he wants to read me and his brother a story every night after I read them some stories! He reads a Curious George story, perfectly, with inflection. It almost brings me to tears each night. When I suggested he try another story in our anthology, he went crazy. Okay Mom, bad idea. But it's fine, you know? Because I'M the one who just needs to be patient. I'M the one who needs to adjust, and that is FINE. Cause really, is it a problem if Fluffy wants perimeters or Pete wants one story only? Not really. I don't know why we (as a society, even those of us who make a conscious effort) still fall into the "there is only one way" trap. I'm working on it!

karen in ca xoxo

[drama mama]

Please send this to the NY Times right now. Or all of us, let's pitch in and run this in our own campaign.

You have given words to the feelings I have wrestled with all week. Just beautiful. Beautiful.

Good for you protecting Fluffy and his perimeters - that PH had to go. I got anxious just reading the dialogue.

[Kristina]

Go, sister,

We're not here to win wars; we're too busy managing skirmishes and hacking out a path for our little guys, and jumping for joy when they (as they do, more and more!) take the lead.

[Maddy]

You've really been blogging for three years! What a trooper.

It looks to me as you've both achieved boundaries on the boundaries, a gradual compromise.

As for the therapist.......probably not a good match.
Best wishes