From the Captain's Log, Starship Asperger's

Star date Grade 3:

• Individual Education Plan (IEP) formulated, with an emphasis on "social goals."
• Social Goals "addressed"  by directing daughter to non-verbal boy on autism spectrum. She talks and plays with him, encouraging him to be more communicative, and assisting him toward his identified social goals
• Sensors indicate that there is no simultaneous direction of a peer toward daughter in order to engage her in peer-appropriate conversation.
• Alternative strategies initiated in non-school sector; we experience frustration that the non-school strategies are ignored by the school sector, thus skills gained in one venue are not generalized to another.
• Social goals not reached, or truly addressed, for daughter; but responsibility for engaging with non-verbal boy successfully shifted from school staff/playground supervisors to grade three child with Asperger's.

Star date Grades 4 and 5:

• Our continuing mission, to include social goals in daughter's IEP.
• Social goals "addressed" by directing daughter toward girls from "Special Needs" Multi-grade Quadrant.
• Daughter's attempts to engage in conversation and play are frustrated at each recess, by inability of the other girls to hold a coherent conversation. Daughter supervises their play, monitoring their activities so that they don't break rules and inadvertently get into the "trouble" continuum.
• In a disturbingly familiar trend, no-one in daughter's peer group is directed toward her to engage in peer-appropriate conversation or play.
• So far, there appear to be no benefits to daughter from this "strategy." Social goals once again not reached, yet responsibility for both supervising and engaging with "Special Needs" children once again successfully shifted onto child with Asperger's.
• By end of Grade 5, daughter has stopped trying to engage with classmates, stopped trying to talk with anyone on the school bus, and stopped trying to engage with neighbour's kids.

Star date Grade 6:

• The journey continues, with little variation.
• Daughter directed to the "Character Room" to play with a Grade 1 girl. Details obscure. 
• A few days without ADHD medication brings out intense level of hyper-interaction with classmates, mostly falling within the "inappropriate" category. In fact, complete anarchy.
• Social goals of IEP continue to be "addressed" through daughter placed in a helping role for others. While it is commendable that the school sector is achieving quality social engagement for some of their students that require it, I am nonetheless put in mind of numerous encounters with parasitic species and symbiotic creatures that feed off the energies of other entities.
• There continues to be no indication that any peer or older child has been given any similar responsibility to coach, mentor, or in any way engage with daughter. The danger of becoming lost in space grows worse each year.

Late on Star date Grade 6:

• We have been alerted to a remarkable occurrence! Two conversations about Star Trek have taken place with adults!
• "Meow-ing" in gym class inspires another child to join daughter in "meow-ing" activity, thus proving that communication IS possible!
• These incidents are followed the same week by conversations with two classmates about Star Trek and Plants Versus Zombies!
• Did the brief time of non-medicated interactions have an effect on sub-space particles, thus allowing a tenuous pathway through which communication channels can be opened? Or have we unwittingly traveled through the Growth-Development Wormhole?

Postcard from the Fjords

For many years, I've had dreams in which I am walking through a seemingly familiar building, often with a resemblance to the large, open studio spaces that I occupied as an art student; suddenly it becomes maze-like and unfamiliar. I start to hurry, perhaps late for a class, then to rush panic-stricken through the wrong doorways, up and down the wrong stairways. Sometimes the dreams hold a strong sense of menace, more than just the anxiety of being late or getting lost -- there is a real terror that I will never get out, never find my way clear.

More recently, there is less fear and panic in these dreams, and more a sense of resignation. "Ah yes, here I am again, lost in this maze of vaguely familiar passageways..." Have I come to accept that I'm not going to get to my original destination, the place I intended to go when I first started out? The dream is full of entropy, too many wrong turns to try to retrace my path, no way to get back to the start.

Tears came when I realized what had changed about this dream. I'm grieving for all the possible lives that won't be lived, all the desirable, attractive destinations I won't reach, no matter how frantically I chase through the hallways, stairwells, underground tunnels.

Dreams really are the keys to the locked rooms in our brains, and our hearts.

A friend, whose child also has a condition that attracts the label "special needs," shared with me a story, a way of thinking about what we're facing as parents. In this story, having a baby is likened to going on a trip. You're planning a vacation in France; everyone who's been there tells you how wonderful it is, what museums and cathedrals to see, how to use the Paris Metro, where to stay. You buy maps and guide books, and pack the clothes you'll need for sight-seeing in France. The flight is long, you get off the plane exhausted, but excited, ready to go and explore French culture and cuisine. You see a big sign that says "Welcome to Norway."

With Asperger's, you are more likely to have spent several days (years) trying to figure out why your French-English dictionary isn't helping you communicate. Why the guidebooks and maps don't get you anywhere. When you finally do see the big "Welcome to Norway" sign, you realize it wasn't just you, after all. You weren't incompetent at following maps. Your weren't really slow to learn French. It's all starting to make sense, and you can forgive yourself for not being able to find the Champs Elysee.

It might take awhile before you're truly ready to let go of the idea of the French holiday. Eventually you rekindle a sense of adventure, buy a sweater, new maps, a new dictionary. You didn't plan on Norway, but you're here now, and you will damn well make the most of it. Still, a part of you knows you will not see the Louvre or the Eiffel Tower. And yeah, you do have the right to grieve a little. Because it's not, in fact, just the   Champs Elysee you have to relinquish, it's sleepovers, birthday parties, kids giggling and conspiring together, having a blast, growing up into themselves and away from the nest. You're letting go of a whole world of childhood experience that every expectant parents looks forward to.

So I open the locked door with my dream's key, and find myself in a hotel room where the names in the phone book have a lot of dots over the o's. I sit in that room for a very long time, and cry until I'm empty.

Then I put on my sweater, and go out in the streets that I have to myself; hardly any tourists in Norway. And I go look at the fjords. They don't have those in France, you know.

Dear Emma,

If there was only one thing I could give you, I would give you a friend. Sadly, it's one of the things we parents are powerless to provide.

When I think back to my own childhood, I can't imagine how I ever managed to have any. I didn't have any particular "selling" qualities, no magnetism to draw others toward me. I don't think I had any "social skills." My parents certainly never expended any energy trying to set up "play dates." Yet I did have friends. One or two girls actually chose to pursue me as a playmate. For a while, we had a group of four smart girls who self-identified as "oddballs" or outsiders in the classroom. Where are those kids in my daughter's class? Assimilated, like the Borg? Or isolated within their bubbles, afraid of guilt by association? Has the pressure to conform become that much worse since the seventies?

My school-age friends were really the heart of my life, they made everything interesting and colourful and fun. I learned things from my friends that I could never have learned from my family or teachers. Playing, talking, fighting and laughing with friends -- these things give us a different type of information about life. Do you have any sense of what you might be missing? Is it true that people with Asperger's don't really want or need friendship?

I wish that you would talk to me more about it. I just see a gradual slipping away. There have been fewer and fewer attempts to talk and play with other kids. You stopped going over to play with the neighours' kids, or to chat with them while waiting for the bus; you would not tell me why. You chose not to have an 11th birthday party. I can understand that. I've spent the last several years in a state of rage and despair over the lack of reciprocity around birthdays. Where do people get off sending their kids to your birthday year after year, and never offering an invitation to you? Who do they think they are?  If I am angry or upset on your behalf, is my empathy misguided?  Are you lonely and isolated, or are these my labels for a condition that perhaps you've chosen for yourself?

As with many gifts we give to the people we love, my desire to give you a friend has a selfish element. To see you engaged with a kid your own age, to have you shift your focus from me to someone else, would allow me a degree of freedom I haven't enjoyed in years.  Turning the switch from "mom" to "buddy" and back again can be draining. And yet, it's really not all about me. Puberty is going to strike soon, and when it does, you'll need to complain about your mother. That's what friends are for.

Love,

Mom.

For a young Engineer

Cast the arc of your bridge
high over the lines
of their fence.

Walk above them always.
Their sandbox keeps
you out, them in.

That's as far as they will go.
The sun eludes them.

It warms your noble face
and throws a graceful shadow
across their backyard,

their enclosure.

Under Construction

Hmmm, looking over paint samples & fabric swatches, and haven't even poured the foundation yet...