With Alyssa’s permission

September 22, 2013 at 12:32 am (Uncategorized)

Here I publish the personal narrative she wrote last week for her 6th-grade Humanities class, whose teacher asked her to read it aloud to the entire grade. She indeed read her piece in front of about 70 kids, teachers and some administrators, or so I heard, not from Alyssa herself, but first from a friend. This friend’s daughter had been overwhelmed by Alyssa’s share and told her mom about it. Imagine, if a fellow 12-year-old got nearly choked up (per this girl’s words) over the essay, how gobsmacked I was — first when I read her piece, and then second after I learned second-hand that Alyssa’d shared it with the harshest audience possible: her fellow 6th-grade girls and boys.

Fearing she’d get chided for her frankness in retelling the story she remembered of getting diagnosed three years ago with high-functioning Asperger’s, I initially bridled at the thought of her peers’ overt and covert reactions. So far, however, I’ve been pleasantly surprised by and relieved to learn that instead of chiding, her peers have embraced her (literally and figuratively) for her bravery. Now, does it mean she wasn’t just the other day called “weird,” due to her diagnosis? Nope. But that name-calling incident is one of mercifully few, whereas the opposite reaction is the more de rigueur

Alyssa’s recall of the time period during which her diagnosis was confirmed and then shared with her is incredibly poignant and also very accurate. What she’s done in her mind is shrink the experiences over a period of years into an incident that in her essay occurs in only one day. Also, fortunately, she’s long since forgotten the names of the therapists and doctors we visited in our quest to get a diagnosis for her, knowing (and fearing) she likely was on the Autism spectrum. So, it’s with 100 percent confidence that I say that the names in the following piece have been changed to protect the innocent (as well as those who aren’t so innocent, per both Alyssa’s telling and my memory of some of the “professionals” with whom we worked leading up to her Asperger’s diagnosis when she was 9 and a half years old and in the 3rd grade).

With Alyssa’s permission, I share the following personal narrative that I’ve not edited:

The Story of My Diagnoses

This was my fourth visit to the doctor’s office that month, and it still smelled like hand sanitizer and sweat. I as followed my mom to that room, 309, I wondered, ‘“What could be so important to Mom that she had to pull me out of school again. She NEVER does that!’” I reached room 309, and pulled myself up onto the examining table. Mirrors were behind me, and in front of me was a stand of books meant to be read to toddlers. Minutes past, and my nine year old mind began to wander from the room. After several more minutes of desperation, I picked up The Hungry Caterpillar. The doctor had still not arrived. How was my mom being so patient? After what felt like hours, Dr. Carter finally made an appearance.

“Hello,” she said in a voice that sounded like a thousand bells. “My name is Doctor Carter. Is this Alyssa?” she asked my mom, while gesturing to me. “I’m Alyssa,” I piped up. Doctor Carter flashed a blinding smile and looked me in the eye. “How are you, Alyssa?” she wondered. “Fine.” I replied, avoiding her gaze. “Are you missing school?”

“No.”

“Why is that?”

Silence. Then, “Alyssa, will you step into the next room with Nurse Katrina? I need to talk to your mommy.” Katrina and I slipped away, and I gave my mom one last glance before the door closed. Katrina and I walked into the room to the left, I sat down on a green pillow, and she sat across from me. She showed me some shapes, and asked me to name them. I did. She told me to say what colors the shapes were. I did. Next, she pulled out some flashcards from her pocket. The flashcards had words on them. She asked me to spell them; I couldn’t. I have never been a very good speller. With a blank face, she wrote something down. It was 10:48, and until 11:04, we sat there quietly, having an unofficial starring contest. Soon, Katrina was interrupted by a loud noise coming from her pocket. It was from Dr. Carter, who apparently couldn’t be bothered walking into the next room to tell us that it was time to walk back to her office. We did so with haste; I was urgent to see my mom. I settled down on mommy’s lap, and she grunted with the impact of my bottom on her bladder. Then my dad, Dave, walked in. “Daddy!” I squealed jubilantly. I hopped off Mommy’s lap and moved to Daddy’s. He gave me a big hug, and I was wrapped in the smell of his office mixed with his deodorant.

Doctor Carter cleared her throat. I hushed up, as she continued. “Mr. and Mrs. Knudsen. I have some news to share with you that may be hard to hear.” Mommy was on the edge of her seat. “After running several tests and observing Alyssa, I have come to the conclusion that she indeed has a diagnoses.”

“What is it?” Mommy said almost silently. “I believe that Alyssa’s proper diagnoses is called High Functioning Aspergers. Here.” she said, as she handed my mom a book which appeared to be on the subject of a spectrum. My mom scanned the book, her eyes moving so quickly that her pupils were blurred.

After maybe ten minutes of Mommy, Daddy, and the doctor discussing Aspergers; I was zoning off into space, it was decided that Daddy would drive me home, and Mommy would stay downtown for an orientation about Aspergers. I gave Mommy a kiss, shot the doctor a dirty look, and exited the office with one hand holding Daddy’s, the other occupied by my stuffed bear, which I had been nervously clutching the entire time.

I was nine when that happened, and everything up until then had been a struggle. I had no friends, and I had lots of trouble getting along with my teachers and classmates. Luckily, I had a great family who helped me through all of this. After seeing Doctor Carter, my life changed drastically. In third grade, I met my equal. Siena has always been there for me through all the rough patches that I have had, and loves me for them. I started seeing a new therapist; after three years of hard work, I only have to see her once a month! differences. As I wrap up this narrative, my challenge to you is to make a special effort to make people who are different feel normal. If that different person is you, if you work hard, everything will be just fine.

Advertisements

Permalink Leave a Comment

Never rent Eric and Kim Gill’s Black Butte Ranch home

September 9, 2013 at 8:20 pm (Uncategorized)

Our summer started off so nicely; in fact, as the summer reaches its end, I now can say it’s one of the best we’ve ever spent as a foursome. The girls had some half-day and full-day camps, allowing me both to spend a good quantity of time with them, as well as to spend a good quantify of time at work (which often was a welcome relief from the former). Hayley had her first experience being a solo traveler: She went to visit Auntie Barbara in Redmond, Wash., via airplane, and Alyssa thus had a weekend at home, with her folks all to herself. And the girls both went to a sleep-away camp, Camp Solomon Schechter, Hayley for two weeks, Alyssa for three.

Not only were they gone almost the entire month of July, but they had an incredible time there, at the Tumwater, Wash.-based camp. We got many letters (especially from Alyssa) while they were at camp. Only two sentences in one of Alyssa’s myriad letters were in the least bit negative. She even left camp with a “boyfriend”; indeed, the two continue to communicate via email and regular old snail-mail (as he’s from Seattle). Hayley made not one negative comment in the letters she wrote. I’ll admit to worshiping the mailbox during the girls’ absence; every letter received was a wonderful gift…even that one from Alyssa with the unhappy message in it.

During those childless weeks, I got a lot of time with girlfriends, and Dave and I had a lot of time together. Quiet time. Ah, the quiet was blissful. The uninterrupted conversations, too, were blissful. While I loved the silence and freedom from the girls’ schedules — and from the restrictions I usually have on my work schedule — I missed them terribly. I dreamt of them every night and was a slave to the letter carrier and Camp’s website that each day posted pictures of all the campers engaged in their activities. It being a Jewish camp, no photos were taken – or posted for that matter – on Shabbat, so the weekends felt long.

After the girls returned from camp, and as the four of us have done for many summers, we headed with our extended family to Black Butte Ranch (BBR) in Central Oregon, about three hours southeast of here by car. All of us — and the “all” adds up to about 20 family members — plan a year in advance for this active get-away where the biggest decision of the day can be whether first to swim or hit the bike trail. Or to go on a trail ride from the Ranch’s stables or allow the kids to play video games in the Rec Barn. Or to indulge in an ice cream cone or a plate of greasy French fries at the poolside eateries.

Getting to Black Butte is easy; being there is easy; securing a home to rent so far in advance should be easy, too. But this year proved different.

Last August, my sister-in-law gave me the Knudsen-Lewis families’ summer ’13 BBR dates: July 21 through July 28. Dandy, I thought: I’d inquire first with the folks from whom we’d rented a home since 2005 to check on its availability. Portland residents Eric and Kim Gill responded promptly, informing me that that week was available and that, closer to the July ’13 dates, we’d owe them half of the rental fee to secure the house.

Feeling great, I got on with my life: We headed to the East Coast with the Millescamps family; the ’12 – ’13 school year kicked off; Thanksgiving came and went; Hanukkah and Christmas came and went; New Years came and went; and then Camp Solomon Schechter published its summer ’13 sessions schedule. Turns out, the end of the girls’ sessions would overlap with the first couple days we’d reserved for Black Butte. Forgetting the entire family’s already confirmed week in BBR, and thinking only at that moment of our ideal BBR dates, I inquired with Eric and Kim Gill, asking if we could switch our rental to the following week.

(Let me offer another review of the dates in question: Switching our dates would mean spending the week of July 28 through Aug. 4 in BBR, instead of the week we’d initially booked, which was that of July 21 through July 28. The Gills responded, saying switching weeks would be no problem. We were set for the girls to go to their overnight camp and for our family vacation week in BBR.)

So, come last April, we paid one half of the rental fee as a deposit — per our written agreement that (smoking-gun alert!) included absolutely no cancellation policy — and again I got on with my life.

Until Father’s Day.

On June 16, we celebrated dads with my folks, Dave’s folks, and my sister-in-law and her family. She’d recently learned I’d changed our BBR dates to accommodate the girls’ return from camp…but that our week of vacation would begin just as the rest of the families’ ended. Over hors d’oeuvres she gently told me of my planning error. I was mortified and choked down my food the rest of the evening while my mind was spinning: How could I remedy this situation? How could I ensure the girls could finish up their camp sessions AND the four of us could share a vacation week in BBR with everyone else?

The next day — and with roughly six weeks till the family would head to BBR — I went to work on fixing the pickle I’d gotten us into. Here’s where it gets ugly.

1. I explained to the Gills my screw-up and asked them if the week of July 21 was available; they said that other renters had it. I then asked if they could inquire with the renter to see if they could switch weeks. The Gills were amenable to doing so. In the mean time, they communicated that if we or they could find renters for the week we originally were to stay there, we’d get our deposit money back. Which, by the way, was just shy of $2,000.

2. Both uncertain we’d be able to switch weeks with the Gill’s other renters and trying to think creatively to remedy our situation, I started offering possible alternatives that would result in our not losing the nearly $2,000 deposit and that would benefit the Gills from whom — I reiterate — we’ve rented since 2005.

3. I let the Gills know that next summer is Alyssa’s bat mitzvah, after which we hope to spend a week away. I know her bat mitzvah date, and so I could guarantee the week we’d spend in Black Butte in summer ’14. They rejected that idea out of hand, saying they don’t make plans like that that far in advance.  “We are not able to make that type of arrangement,” Kim Gill wrote in an email dated July 10, 2013.

That was her statement, despite the fact that one of the few pieces of writing the Gills provide their renters actually states the following: “We would like to give preference to returning guests, so if you want to reserve a spot…please let us know when you return the key and we will put you on the calendar and confirm interest in January. Thanks!”

Their rental house key always is due back right after the conclusion of a week’s rental. In other words, the Gills say in writing they’ll give priority to returning families from the date renters vacate their BBR home. And I was asking to confirm their rental home just slightly more than a year in advance.

Indeed, things began to smell like skunk.

4. Continuing to think outside the box, I then ventured to inform the Gills they had no written cancellation policy that I could find — either in my files or online; up until and throughout this past summer, they “show” their home via the following site: vacationhomes.com/18063.

On July 18, I wrote the following, which is part of a longer email:

“While late in the game, it’s come to my attention that I’m unaware of any cancellation policy you might have regarding your home and, thus, written policy you might (have) regarding reimbursement of down payment. I’ve gone back into my files and see that our family has rented your lovely home since 2006* (and referred a number of family members and friends to you, since then, too). I see too, in my paperwork, that there is no mention of any cancellation policy, so that piece remains an unknown. … So now I’m looking toward actual policies you likely have in place, as long-time home renters, that protect the renter/renter-to-be from loss of deposit. Thank you for reviewing your policies; I’d like to see what you have in your files regarding such. And I look forward to hearing from you.”

*Upon further review of my files, it was indeed in 2005 that we first rented from the Gills, not in 2006 as I’d erroneously stated above.

And, later that same day, this was the screed Kim wrote in return:

“I am not surprised by your email.  I have come to expect a new twist with each exchange.  I appreciate your situation and concern, but you may also be forgetting that we rely on our summer rental income to cover expenses and taxes for our Black Butte property.  We also made the decision long ago to manage our property ourselves so we can stay close to the use and users of our special family getaway that was built by hand by our family.  As such, we chose to make our paperwork and process lightweight and not rely on fine print, legal documents etc.  Some may consider this naïve, we just prefer to think of it as honest people expecting the same in return.  We have been burned once or twice, but our hundreds of other cases over the many years have proven our outlook is reasonable.

I don’t have access to my historical files, but I do seem to recall you may have reserved a week another year and also decided later it wasn’t going to work out.  That is life and we understand.  But we start getting rental inquiries in Dec/Jan for our summer weeks.  I believe you reserved your time last summer which is a year in advance.  30 days notice on a week rental that is a significant investment doesn’t really work for us and is precisely what you and I have been discussing throughout our exchanges.  So in fact, our policy has been known by you.  Trying to shift the ‘fine print’ in the final weeks doesn’t sit well with me at all.”

 You can imagine how well her response sits with me. [And, we used the availability of public records to locale the Gill’s Portland and BBR homes to calculate the taxes they owe on them. While I won’t publish that information here, suffice it to say that had they repaid our nearly $2000, they’d still be quite well equipped to make good on their home-owners’ taxes.]

More on principle than on anything else, we pursued legal action. It seemed only “reasonable” (to parrot Kim’s use of that word) we’d get our deposit back from the greedy Gills. After two lawyer letters — and they responded only to the first one, a response which, of course, was unaccepting of our request via legal counsel for reimbursement —  we considered going the small-claims court route. But life is busy and any extra expense required for a lawyer and other related costs weren’t in the cards. So we’ve ceased and desisted from pursuing getting our $2000 back. [Sob]

After all this — despite being down $2000 — we were able to enjoy the majority of a week in Black Butte; while some folks rely on the kindness of strangers to see them through, we got to rely on the kindness of very close friends. A shout out to the von der Heyden family who made their Bauhaus-style home right on the meadow available to us for the days we needed. There, we not only enjoyed the family’s generosity, but the nightly view of the sunset over Mt. Washington’s cowlick peak. I looked for ‘le rayon vert’/the green line — thank you, Jules Verne — but didn’t see it for the craggy mountain that juts up through the horizon like a spike on an EKG.

I did, however, send an email to all the friends and family to whom we’d recommended the Gill’s rental, which included those who’d rented from them for many summers. I heard back from each and every person to whom I sent that email; not one of them again will rent from this dishonest, rude family clearly only in it for the money rather than renter satisfaction or future business, for that matter. Our friends and family also took the opportunity to share with me the disrepair in which they’d (and us, too) sometimes found the Gill’s rental house. Examples included: mouse droppings on the carpets; filthy bathrooms; bats (yes, inside); an A/C system that sounded like a jet engine taking off;  and unresponsive home owners to renters’ complaints.

Next summer marks another stint for the girls at the sleep-away camp they adored and Alyssa’s bat mitzvah. After the event, not only will our extended family of 20 head to BBR for R&R, but additional family members who’ll be coming to the simcha from out of town will join us there, too.  We’ve already begun sending home-rental information and suggestions to members of the extended Knudsen-Lewis-Director families. How sad for the Gills that their house is on our chopping block and not on our list. And what a relief for us.

Permalink Leave a Comment