Tuesday, July 20, 2010

Independence Requires a Rescue Plan

Thank goodness our local mall (Billings Bridge) is only a 2-minute drive from our house. A 15-minute walk, but a 2-minute drive. This is important when you need to drop what you are working on to rescue your daughter from a traffic island in the middle of the parking lot of a busy shopping centre.

This morning I sent Jess off on an errand. To the mall (a favorite) to buy her choice of bread for dinner and birthday cards for my mother and father. This is my way of building in time to work when there are no friends and/or planned activities for her to do on a particular day. My way of ensuring that we have a least a few hours where we are not fighting over what to do.

While I could think longingly back to the days when I wasn’t working in the summer and had long stretches where we could do interesting things together, who am I kidding? What 20-year old really wants to spend much of her summer hanging with her mom? Okay. There are some. I even know them! But their moms are much more interesting than I am and seem to come up with fun things to do, which is why I often send my daughter over to their place. Instead, Jessie is stuck with a mom who works from home and can be very cranky when she is trying to edit tables of figures and is interrupted by Miley Cyrus singing Party in the USA at about 85 decibels.

(Note: anything at 70 decibels—such as freeway traffic and a vacuum cleaner—is classified as “annoying,” according to the Dangerous Decibels Teacher Resource Guide. 80 decibels will result in possible hearing damage, 90 decibels in serious hearing damage. Anything with Miley Cyrus gets classified by me as being the equivalent of the 120 decibel range—“human pain threshold.”)

So Jessie gets dressed and heads out the door with the shopping list in one hand and dreams of the Zellers movie section in her head. “How are you getting there?” I ask. “I’m walking. That will be my exercise,” she says. I don’t say anything about that scary intersection that is the only way to get into the mall by foot. I consider telling her to take the bus (which would deposit her at the bus entrance, which doesn’t require crossing lanes of turning cars and drivers who are surprised by the sudden appearance of pedestrians), but I just lambasted her yesterday for not stretching outside her comfort zone (i.e., going somewhere without me driving her), so I leave it. She’ll either figure it out or get killed trying to cross the parking lot.

This is the difficult balance in parenting a person with special needs. Just how much risk are you willing to take? On the other hand, just how much protection can you provide without taking away their power or their sense of efficacy? I do have visions of an article in the newspaper tomorrow about an accident involving a young woman with Down syndrome and readers writing in to ask “Just WHAT was that mother thinking of?” But I push those visions aside and Jessie out the door.

I go back to work. Twenty minutes later the phone rings. “Uh, Mom. I’m kinda stuck here. I can see MacDonald’s and the mall, but I don’t know how to get there. There are too many cars.” I do a quick think. Hmmm. How do I really know where she is and would it even be possible for me to guide her across the lanes? While cell phones have been a lifesaver, I now need a video camera that can transmit to my computer so I can guide her over the phone! Next best thing: “I’ll be there in 5 minutes. Can you wait?” “Okay.”

I hop in the car and drive over, parking near the white-lined walkway that is a substandard imitation of a crosswalk. I look for Jessie and see her stranded about 200 metres away on a small island in the middle of cars turning into and out of the mall at what looks, to me, at breakneck speed. What, does no one pay attention to stop signs in mall parking lots?

I take my own life into my hands (or feet, as the case may be), and walk to where Jessie is, then guide her gently and safely back to the crosswalk. We stand there together watching the cars wiz past, until one slows down. “Make eye contact,” I say. “Don’t move until you make eye contact with the driver and you know that they see you.” We walk across together and she hurries away from me into the mall yelling “Bye!” over her shoulder.

I climb back into the car and drive home. I make sure that I come to a full stop at each and every stop sign in the parking lot.

And my husband wonders why I complain about not being very productive on days when Jessie is home. . .


Anonymous said...

Oh my... my heart has found it's way to my throat.


Anonymous said...

I laughed over the "volume guide"!

"This is the difficult balance in parenting a person with special needs. Just how much risk are you willing to take? On the other hand, just how much protection can you provide without taking away their power or their sense of efficacy?"

Yep, I completely get this and I struggle with this even for our five year old son. (Sure, he wants to brush his teeth, but I still go behind him and make sure he gets all the crud out.) But, seriously, I do struggle with this.

During the more tumultuous times in JK this past year (Gabe was sometimes getting TWO time outs in a 2 1/2 hour school day!), I worried over just how much he was being told what to do, when to do it, and worse: no real reason of why. "Just do it." kind of mentality. And it was apparent that the whole thing of "self helplessness" was a big part of his life.

Anyway, I enjoyed this post, Nan. :)

Anonymous said...

A voice from the past here!! Darlene from the early days...sigh...
I have been getting my "Jessie fill" from Debbie J-H (CISS)who gives me all the articles written (with photos!) and updates on her fantastic leadership skills demonstrated at the Downsyndrome association meetings (really, CO-chair!!!:>) I might sound surprised, but really just bursting with pride...
I love the blogs, so wonderful, and once I fugure out how to be a 'follower' (using my kid's Gmail account) I will be excited to see all the new hair cuts and see all the successful endevors in the wondeful world that is Jessie!
P.S. Did the Jonas Bro's ever write Jessie back??? It took a year for my daughter Grace to hear from Senina Gomez...
love to all,

liz said...

o my, the anxiety!
i often think there should be a tunnel under bank street as it is such a frightening crossing.. yes, it's all about the eye contact with drivers!

parking lots!!

thank goodness for mom!

Daniela Goldstone said...

I think it was a good, though, scary learning experience for Jessie. Letting go is tough and often frightening though. We think we have found the perfect school for Daniela in Wisconsin at Shepherd's College ( check her blog for more info) It's an amazing place and worth her being so far away. We'll know if she's accepted in about 2 weeks and she would start in 1 year exactly. Ever think of sending Jessie to Wisconsin?....... Also check out the post on the Specials. I think you and Jessie would both love it! Tina