My weekend started on Friday afternoon when I came down with a vicious stomach bug. Although I was “sofa-ridden” for a day and a half, AMC was running a Memorial Day War Heroes Weekend movie marathon and the UEFA Champions League final was televised live on Saturday morning at 11 am. My favorite international club, Barcelona, won the title with a resounding 3-1 defeat of Manchester United. Man U’s manager, Sir Alex Ferguson, a Scot not given to hyperbole (imagine that!) called the 2011 Barca squad the best team he had ever faced in competition. They were dominant!

I spent much of Sunday at church fulfilling my parking & traffic team duties, returned home exhausted, and promptly dropped off into a 2-hour nap. Shortly after my youngest daughter (Shana) went to bed, the stomach bug 2.0 struck our home. She came out of her room sick around 10 pm and proceeded to vomit every few minutes for the next 2 1/2 hours. My wife took the first sleep shift and I didn’t get to bed until almost 1 am. Shana woke up vomiting at 3 am and again at 6 am – at which point I awoke for good. She’s gotten better by the hour today, but my wife and I have found ourselves suffering from PSDS – parent’s sleep deprivation syndrome.

Since I couldn’t get back to sleep, I ended up watching the nPower Championship playoff final between Reading (England) and Swansea City (Wales). This is the same league my team (Leeds United) plays in. The winner would take the final promotion slot into the English Premier League, the top-flight of English football. It was a really exciting game, with Swansea winning 4-2 and becoming the first Welsh team ever to earn entry into the Premiership. It’s also a great rags-to-riches story, as the immediate payoff for promotion is $90 million pounds. This for a club that back in 2003 was almost shut down due to financial difficulties. In eight years, the Swans climbed from non-conference status, up four levels, to the top.

One of my other weekend diversions was finishing an AudioBook I had downloaded to my phone about a week ago. The book was The Help by Kathryn Stockett. Because I’m such a history buff, I absolutely loved it. It gave me a whole different perspective on one of the “backstories” of the civil rights movement of the 1960′s. Great book!

Finally, after picking up my custom knee brace on Thursday, I hit a small bucket of balls at the driving range this afternoon – for the first time in five weeks. My knee is sore this evening, but now I have something to shoot for…a mid-June return to playing golf.

All in all, it was a good weekend. Not what I expected, but so what?

In our case, the stress is actually tripled because we have two kids, one of whom (Shana) has special needs. Last year, we faced the disappointment and challenge of transitioning Shana from the K-8 school she was attending to a more academically-focused program at a regular middle school. We also began the high school application process for my other daughter, Rachel. This process continued into the current year as we had to file two separate financial aid applications, the second of which required an early filing of our 2009 tax return. Shana’s transition has paid off as she has begun to read and is being challenged academically by both her teacher and peers – several of whom also have Down Syndrome. During March, we were informed that Rachel had not been accepted to St. Ignatius (her first choice) but were elated when she was accepted at Lowell High School, a public magnet school within SFUSD that is permitted to admit only students who meet special admission requirements.

We’re really looking forward to a two-year respite from the stress of school transition; but in reality, there will be many smaller “battles” to be fought between now and then. About two weeks ago, we had Shana’s annual IEP (Individualized Education Program) meeting. As has been the case in recent years, the district’s speech therapy department has once again recommended that Shana be disenrolled from the program. While their professional assessments verify that she is nowhere near age-appropriate in speech and language proficiency, they have justified their recommendation by stating that she has attained a minimum level of proficiency and thus, no longer requires individualized therapy. They believe that she can continue to progress simply through her involvement in normal classroom activities, with some differentiated support from the teacher and paraprofessionals. We find this position to be “penny-wise and pound foolish” – driven largely by the budgetary constraints of the school district. In the long haul, won’t our daughter be more of a benefit (and less of a “burden”) to society if she continues to progress in speech and language – beyond minimal proficiency? Perhaps she will never get to the point of living independently, but we continue to hope that based in a group home setting, she would be able to hold down a basic job and feel like she’s a contributing member of society.

This is not a challenge that’s unique to San Francisco, but it is compounded by the fact that it’s a difficult city in which to raise a family. So why stay? That’s something between us and God that I may come back to later on. Thanks for stopping by.

I was thinking about all of this as my “other daughter” Rachel works her way through the high school application process. I’ve written quite a bit about Shana, but like so many siblings of special needs children, Rachel seems to get overlooked – at least in my writing. On the other hand, I’m finding out that there’s nothing more embarrassing than the parent of a teenager! As any parent of a “mixed” family (special needs and normally-developing children) will attest, the challenge is not merely dealing with special needs – but how to keep your other children from feeling marginalized. Rachel’s first choice for high school is St. Ignatius (SI), a private, college-prep school here in the city. I can hear the questions already…yes, it’s expensive – but we decided to apply and then if she’s accepted, confront the financial challenges of private school tuition.

Applicants to SI are allowed to designate two people for letters of recommendation.  The school then contacts those individuals privately to solicit the letters. So often, we as parents are not the best judge of ”who” are children are – particularly as they get older and spend more time outside the home. As such, the opinions of others we trust can often validate or refute what we believe to be true about our children. With that in mind and because I rarely write about Rachel – I’d like to share an abridged version of a recommendation letter that was written on her behalf.

Two years ago, the school district recommended that we move Shana from inclusion to a special day class (special needs children only). This was a serious emotional blow to us as parents because we had always hoped that she would be able to “keep up” with normally developing children her age (albeit with support). Although we went through a “mourning” period as a result of this transition, we were blessed to secure placement for her at an excellent “alternative” school within the district (K-8th grade). We were ecstatic because it meant that Shana wouldn’t have to change schools for five years. What we didn’t know then was that most of the middle school programs for special needs children in our district focus on the development of  “life-skills”. Because Shana is just now learning how to read, we weren’t ready to throw in the towel and abandon the focus on reading, writing, and basic math skills.

The San Francisco Unified School District (SFUSD) has an open enrollment policy, so we had to re-enter the application process to find an appropriate middle school placement for Shana. Once again, we were blessed to find an academically-focused program in a school that’s only five minutes from our home. As we pondered the upcoming “logistic” challenges of Shana going to middle school (class periods, lockers, P.E., etc.), we also had to think about ways to prepare her for the transition. It may sound redundant to you – but we were blessed again by being able to enroll Shana in a summer program offered by the Beacon Center, located at the same campus she’ll be attending this fall. As she has at every “place” in her young life, Shana quickly gained the love and affection of the program staff and has learned to navigate her way around the building.

This is the final week of the six-week program and it ends with a climactic event (for most “city kids”) – a three-day, two night camping trip. Other than one or two sleepovers, Shana has never spent a night away from home – on her own. On the other hand, our girls are thoroughly familiar with what it means to travel and have repeatedly demonstrated that they’re “flexible” and comfortable sleeping anywhere. With that in mind, we sent Shana off to her first overnight “camp” this past Monday. I’m not an overly sentimental guy, but as I watched her walk across the schoolyard with her duffle and sleeping bag – a giant lump formed in my throat.

Monday evening my wife and I were on edge, waiting for a phone call from the camp counselors asking us to come and get Shana (she’s about an hour or so away). The call never came, nor did we receive one last night. This afternoon, we’ll pick her up at the school campus – having accomplished another milestone and experienced another blessing in what has been an amazing life. God is good…God is love.

The Special Olympics of Northern California and the San Francisco Unified School District (SFUSD) have joined forces to bring special olympics directly into the schools, through the School Partnership Program. On Friday, May 15th, the program’s annual track and field meet for special needs kids within SFUSD was held at Kezar Stadium. By the way, this isn’t the Kezar Stadium featured in the original “Dirty Harry” movie, which was also the home of the San Francisco 49ers for many years. That decrepit old place was demolished many years ago and rebuilt in a more functional configuration that now hosts football, soccer, lacrosse, and track and field events.

This year, Shana and a friend from her class were selected to be the “torchbearers” for the opening parade.

As a parent, I found the the dedication, care, and love expressed by the volunteers, paraprofessionals, and special education teachers who conducted the event to be overwhelming. All parents want to see their children loved and accepted by others, but it’s especially true for those of us with special needs kids. Events like Special Olympics are a way of “offsetting” the stares, whispers, and social awkwardness that often accompany people’s interactions with children like Shana. For at least one day, our kids are celebrated and made to feel special by others.

A perfect example of this was something Shana received last week. Our daughters attend different schools and Shana qualifies for transportation services (school bus). This year, we were able to arrange for the morning bus to pick her up at her sister’s (Rachel) school instead of at home. At Rachel’s school, there’s a paraprofessional who supervises the inflow and outflow of special needs kids to and from buses. Every morning and afternoon, he’s out there “working the sidewalk”. Over time, he’s gotten to know Shana – even though she doesn’t attend his school. When he heard that she was going to be a torchbearer for the Special Olympics event, he made up a sign and presented it to her immediately after the opening ceremonies.

Just to prove that I’m not immune to being an “over the top” parent gushing about his kids, here’s two final photos of Shana participating in the “Shot Put” – actually a softball toss!

Shana’s ability to freely give and receive love – unconditionally, remind me again and again how few “essentials” there really are to life. She’s not a burden – she’s a blessing!

DIGRESSION:  This reminds me of something I once heard an old preacher say. He dismissed people’s claims that they couldn’t memorize Biblical passages with the following retort: “How many songs by your favorite musical performers can you sing in their entirety, from memory, years after they were first released?”

Now that I’m an adult, I’ve found that one of the best examples/expressions of globalization and the “one world” theme is at an IKEA store. Like the “Small World” attraction, you enter at one end and after a serpentine passage through a bewildering assortment of retail “attractions”, you emerge at the other end – where a small restaurant awaits you. By then, you’re suffering from sensory overload. You’ve had to serve yourself at each stop along the way and grappled with crowds of people whose cultural notions of space and propriety are different from yours. On top of that, you may still have to go down to the self-serve warehouse, pick the large items you want off the shelves, and figure out how to get them in or onto your vehicle for transport home. [By the way, remember to bring your own rope or cords - the free twine they have at the loading dock is pretty much worthless, particularly if you have to drive home on the freeway.] At this point, the restaurant and its tables seem like an oasis in the desert. You think, “maybe I’ll just stop here and rest for a few minutes”. The next thing you know, you’ve convinced yourself to have something to eat and/or drink because with all that still awaits you (including the dreaded “assembly”) – who knows when you’ll get a chance to stop and eat? Big mistake – you should have just “powered through”. After negotiating the labyrinth, having an intense cross-cultural experience, and filling your stomach, you’re ready for a nap – certainly not for what still awaits you.

I love to work with my hands and have a strong “mechanical” aptitude and an innate ability to follow detailed instructions. As such, the phrase “some assembly required” doesn’t strike terror into my heart as it does with so many others. IKEA takes it to a completely different level – eliminating the “some” and leaving the stark – “assembly required”.

As soon as you open the box, it’s back to the “one world” theme. The information sheet is a fan-like  foldout written in 15 languages. In keeping with the theme, the assembly instructions are iconographic (all pictures, no words). They begin by showing what tools are needed and then encouraging you to have someone help you with the assembly – because after all, no one wants to be unhappy (see below)!

Because I usually have no one around who can “really” help me with the assembly (some of you know exactly what I mean), I typically start by reviewing the instructions and then devising some sort of “rig” that will allow me to complete the process alone. This was the case last week when we purchased a bed for my daughter Rachel and a separate “mattress support system” (in lieu of a box spring mattress) that came in over 100 pieces and when fully assembled, was the length and width of a twin bed. As in the television commercial, I can truly say that completing the assembly with no spare parts left over and seeing my daughter climb into her new bed, surrounded by her new bedding – was priceless.

The Meds

Saturday morning, I helped her with a weekly ritual – the counting and sorting of medications. Like an increasing number of people her age (83 in April), my mom is now classified as a person with multimorbidity. In addition to four separate vitamins and minerals, she takes another six medications AT LEAST once a day and Ibuprofen as needed for pain. She has high blood presure, deteriorating hip joints, a bad knee, arthritis, mild osteoporosis, and is battling repeated flare-ups of gout. The number and frequency of the pills she takes is so bewildering, they have to be sorted by day and time so that she doesn’t accidently over or under medicate herself and end up in the hospital.

The Sorting System

I’ve spent the last two days thinking and musing about my mom’s situation. This morning, I saw a link posted by a friend of mine on Facebook. It’s an article about multimorbidity that you may find interesting – particularly if you have loved ones approaching or in this season of life.

I don’t have any special insights or advice to pass on right now. I’m still in the process of working through my feelings. I was talking with my wife yesterday, telling her that I was ready to come home. I thought this feeling was related to the fact that I was spending five nights in four different places and expending a lot of “relational energy” along the way – something that really taxes an introvert like me. However, in the midst of writing this, I realized that visiting my mom and seeing everything firsthand has made me melancholy. As a fundamentally positive person, it’s not a place I’m very familiar with.

The other night I was the featured speaker at a church function. In the midst of my talk, I wanted to reference the material in a one-page handout that we had distributed. Without missing a beat, I found myself telling the audience that the handout contained a “few niblets” for their consideration. As soon as the phrase was out of my mouth (and I saw people’s reaction), I started to explain but thought the better of it. How could I tell people – without completely digressing – that as a father of two girls, ages 13 and 11, I was in my second pass through the Hannah Montana fixation and had just realized that she was now inside MY head too! This incident made me realize that all kinds of Hannah Montana stuff has entered our family’s vernacular. Of course, it’s not my fault. Shana’s the one who uses Hannah Montana sayings and imitates her body language and dance moves. Check it out – if you can stand it…

Actually, a niblet is a small piece of food, as in a single piece of corn. Growing up in the late 1950′s and early 60′s, fresh vegetables weren”t all that common. As such, we rarely got to eat corn on the cob, we mostly ate niblets corn… and learned all of the advertising jingles by heart.

Before last week’s incident, I’d already had another dad/daughter realization. About a month ago on Facebook, someone circulated a list of 239 movies. A friend of mine who loves films passed it on to me. Accordingly to whomever started the list, if you had seen 75 or more of the movies listed you needed to get a life. My friend had seen 175. When I tallied my responses, I found that I’d seen 123. The reason a movie buff like me scored so low was that most of the movies were mid-1980′s and later. If the list had reached back into the 1970′s and early 80′s, I probably would have been off the chart. On the other hand, I’d still seen more of the listed movies than most people because I was able to check off virtually all of the kids and girl movies and a large number of “chick flicks”. Such is the life of a man surrounded by women! Hey, it’s their world and I’m just living in it.

About this point, I guess you don’t want to hear about why men who live among women tend to spend more time on the toilet…

This year’s edition, the 9th Annual, was bigger and better than in past years (I know from experience – having seen several by now). On our block, one of the neighbors set up a portable fire pit, the kids rode bikes and made smores, there was a coyote sighting at the end of the street, and everyone hung around outside socializing before and after the parade.

The local community website from which I copied these pictures makes the point that the parade was held in east Oak Park. That’s coded language for the neighborhood my sister lives in at the “bottom of the hill”, which includes the first homes built in Oak Park, back in the late 1960′s and early ’70′s. The “upper” or northern area of Oak Park consists of more recently built multi-million dollar homes and gated communities. Hardy the kind of place where you’d expect to see such ”low-brow” entertainment as a land-locked boat parade :-)). This neighborhood disparity is reflected in the local supermarkets (Ralph’s vs. the Vons Pavillion – essentially an upscale Safeway on steriods – with attitude), local shops, and the local high school, where according to my niece, its obvious who lives where. My sister calls this phenomenon “The Bubble”, where the view of the world from inside is very different from that experienced by those “on the outside”.

It reminds me of the Simpsons Movie, where Homer dumps a silo of pig poop (don’t ask – just watch the movie if you’re intrigued) in the local lake, creating an environmental disaster. The EPA responds by dropping an inpenetrable dome over the city of Springfield, effectively cutting it off from the rest of the world. I think you get the picture.

Just so you don’t think I’m singling out one community, I’ve found that the identification and sorting process described by my sister as ” The Bubble” – whether based on race, culture, economic status, etc., exists in San Francisco and everywhere else I’ve ever visited. I guess it’s part of our human nature to constantly measure oneself against others, to keep score or count, and to segregate ourselves accordingly. During this visit, I’ve been particularly struck by how my sister and brother-in-law have managed to stand apart from the type of behavior that creates “The Bubble” and have instead, become part of a diverse, supportive local community (literally centered on their block). I think this is something we should all aspire to – wherever we live.

Christmas tree expedition with friends at Skyline Ranch the day after Thanksgiving. Me and the girls wanted the “Christmas Shrub” – Mom said “No Way”!

We hosted a Tacky Christmas Sweater Party at our home. We’re congregated around my new outdoor fire pit! I guess it doesn’t take much to get me excited these days…

Shana celebrated her 11th birthday in triplicate this year. Here she is at her school party on her actual birthday.

At the Tacky Sweater Party two days later.

A mini-party at home with two friends about a week later.