Roll with the Changes

Elvis the service dog remains at home, but Justin has left the building and taken up residence at the University of Wisconsin-Whitewater dorms for his summer school session.  He is taking six college credits, returning home for August, and then going back to school for the fall semester.

When asked what he is looking forward to the most at college, Justin answered, “freedom.”  I guess that I was probably the same way.

In the meantime, the local Grandma and Grandpa will be taking care of Elvis while Julia and I take off in a couple of days for Alaska.  It will be our 50th state. Julia has a business meeting in Anchorage through the end of the week.  Then we’ll have a couple of weeks for adventure and exploration.

Eyes on the Prize

The last couple of weeks have been spent transforming Justin from high school kid to college adult. Yeah, right. 

Anyway, everyone is doing the best they can under the circumstances, and we are on the morning of move-in day.  He has some caregivers lined up.  The truck and wheelchair van are packed.  Classes start tomorrow.  We are scheduled to leave on our 30th Anniversary celebration trip mid-week.  There may be a bit of tension/stress in the air.

So we’ve tried to have a little fun along the way on these warm summer days and nights.  The best part of Wisconsin summer can usually be sampled with brats, beer, and music on the University of Wisconsin-Madison Terrace.

After meeting with Justin’s “caregiver team” at UW-Whitewater, Justin and I checked out the local brewpub.  He’s posing in front of my Hefeweisen.  The food hadn’t arrived yet, but it was pretty good.  I give Second Salem Brewing Company a thumb’s up.

One way or another, July promises to be a busy month.  Time to pick up the blogging frequency a bit.

Summer’s Bounty

About five or six years ago, I planted six fruit trees:  three apple, two pear, and one cherry.  At the house before this one, I had some great luck with the apple trees planted on a hillside.  However, conditions here are different:  steeper terrain, clay soil,and more wildlife and insects.  I lost one apple tree after it was run over by the neighbor’s escaping steer.  The other two apple trees have had issues with late freezes and insects, producing pretty much nothing usable.  The pear trees, which were purchased because they were different types known to play well together, have never even flowered.  The cherry tree was eaten up by deer and then pruned poorly by me.

But this year has been different–at least, for the cherry tree.  We’ve already harvested 8 cups of cherries.  Julia also went to a local farmer and picked strawberries last weekend., along with her own rhubarb. We’ve been enjoying fruit, pies, and smoothies.  There’s something special about walking up the hill to the Scamp and stopping to pop a few ripe sour cherries in my mouth.

Speaking of the Scamp, modifications are coming along slowly but nicely.  The old smelly carpet is gone, and some nice gray vinyl plank is in its place.  Also, I installed vinyl wallboard on the space between the floor and the walls.  The installation is far from perfect, but it’s acceptable to an ex-lawyer with few construction skills.  Function over form is my motto. 

The bed was also ‘the subject of an upgrade.  When I bought the Scamp, the previous owners were using a three-inch foam pad on top of the original cushions.  I threw out the foam pad and stored the cushions, replacing them with eight inches of memory foam.  Much better!.  I have taken a few afternoon naps to test it out. I’ll take some photos when I get closer to completion.  The new dinette table, created by someone with infinitely greater skills, will be the focal piece of the remodeled interior.

The electrical system is still in the research phase.  I will definitely upgrade the battery before my September trip and probably buy an inverter for laptop use. I may put off some of the other electrical upgrades until I take my first extended trip and see what I am capable of producing/using in amps.

We are continuing to put together the pieces of Justin’s puzzle.  There are some caregivers lined up for his college summer school in July.  He is working on backups in case something goes wrong.  We’re taking two steps ahead for every step back, but that is better than the other way around.

If everything falls apart, I may be going to college as a caregiver and living in the Scamp for a month.  If everything holds together, Julia and I have a special trip planned.  Stay tuned.

Pieces of a Puzzle

Since returning from the Canada road trip, my days have been filled with trying to get Justin set up for services so that he can begin living on campus and attending college.  Tonight, we met with the fiscal agent who will be responsible for paying Justin’s caregivers.  Tomorrow, we have a meeting with SSI.  Wednesday, we meet with his managed care coordinator.


We have less than three weeks to get everything in place. We’ve been on a time crunch because Justin didn’t qualify for a lot of this stuff until his 18th birthday in mid-May.

Some of the government employees and non-profits involved truly want to help and are able to do so.  Some of the people involved truly want to help and haven’t been able to help much, due to limitations in the system.  Other people have attempted to obstruct, delay, and prevent us from getting things done.

I don’t have any problem with government employees trying to save taxpayers’ money. We pay a lot of taxes ourselves. But when the government bean counters are penny-wise and pound foolish or just so full of themselves that they fail to do their job, my adrenaline goes into overdrive. Everyone wants to root out fraud, but this is not that kind of situation.  The government safety net was designed with people like Justin in mind.

In the last twenty years, the emphasis has been to keep severely disabled adults in the community—partly because it’s a more fulfilling way to live, but partly because it’s a lot cheaper than institutional care. Having said that, people who try to live independently have been getting squeezed. The pay for personal caregivers has remained stagnant, resulting in a labor shortage that puts severely disabled people’s lives at risk. One personal care agency has primarily serviced Justin’s college for years. However, that private agency refused to provide care for Justin and other freshman disabled students for the fall semester because they don’t have sufficient staff to meet the needs of new disabled students.  They point blank told us, “Sorry, we can’t help you.  You can try again for the spring semester, but we can’t promise anything.”

Of course, there’s a reason why there isn’t enough staff. The pay is about $9/hour, irregular hours, and difficult working conditions. Justin is alloted forty-some hours per week, and the majority of that time is early in the morning and late at night.  Most people would rather work at Taco Bell for four-hour shifts than work two-hour shifts emptying urine bags and transferring patients from bed to toilet chairs to showers. As a result, we’re scrambling to find caregivers outside the agency setting. The good news is that care workers can make more than $9/hour by removing the agency’s profit from the equation. The bad news is that it puts the burden for finding caregivers on the severely disabled person. Justin will have to learn to hire, fire, train, and time keep.

Most people who attend college for the first time worry about papers, exams, grades, and how not to get caught drinking alcohol. Justin has to worry about whether someone will be there to get him up in the morning, assist with getting meals during the middle of the day, and getting him into bed at night, plus all of the normal student stuff.  If no one shows up and back-up isn’t available, he has to call 911– if he can reach his phone. He cannot move out of a laying position without assistance. Not even to sit up.  He can’t transfer out of his wheelchair without a mechanical lift or a big strong dude.  How it’s all going to play out, nobody knows.

We all know that life isn’t fair. It’s less fair for some than others. On the other hand, there is reason for hope. Twenty years ago, most of the boys with Justin’s diagnosis died before reaching adulthood. No one went to college.  Now, we know a number of young men who finished college and went on to find jobs with the skills gained in college.

Justin desperately wants to go to college and to live in the dorms with the help of personal caregivers. There are no guarantees even if we can get all of the care set up. Another UW-Whitewater student with Justin’s diagnosis, and who Justin knew from state Muscular Dystrophy Association activities, died earlier this year at age 20. It’s important for all of us to live every day to the fullest and to appreciate every day as if it might be the last.

The Big City–Canadian Style

Our final stop of the wheelchair van road trip was Toronto.  Julia arranged for us to stay at the Grand Hotel in a two bedroom suite.  We were walking/power chair distance to everything. Service was outstanding.  The free breakfast was really, really good. The staff gave us a special service dog gift box that included a travel water dish, chew toys, and poop bags.  They did everything they possibly could for us within their power.  The suite did not end up being accessible at all, but we knew that going in.  We couldn’t find any accessible hotel rooms downtown for our party of three.

On our first day, Julia took Justin to the Hockey Hall of Fame, while I walked the streets of downtown and then stopped at a basement bar for a Guinness and fish tacos. After we met up, we went to the Craft Beer Market where I enjoyed an IPA, and Justin ate Fast Food Sushi (Cheeseburger and fries wrapped in bacon and presented sushi style served with jalapeño cream cheese and BBQ sauce).  Maybe it was the two beers, but I really liked this sculpture in the downtown area.

Later, after getting settled in the hotel, Julia and I ventured out to the St. Lawrence Market where we picked out cheeses, sausage, fruit and freshly baked crusty bread, bringing our groceries back to the room for dinner.  We did that both nights to save money over an expensive restaurant.  Additionally, the neighborhood around the very nice hotel was a little sketchy at night.  As might be expected, we saw great wealth and style in Toronto, but we also saw a lot of homeless people down on their luck and some in need of mental health services. Many of these folks were staying at shelters close to the Grand Hotel, while others slept in nearby parks.  We didn’t have any problems, but it was eye-opening for Justin.

On Day 2, we walked down to the Toronto Harbor and then over to the CN Tower.  Julia, Justin and Elvis stood in line and went up to the top.

I went off in search of….a brewery, which was just across the street so I didn’t have to go far.

Steam Whistle has one style of beer:  a pilsner.  While a dry, crisp, light pilsner is not my favorite style of beer to drink or brew, I have great admiration for a brewery that executes its style perfectly.  In any event, it was a great way to pass the time while the rest of the crew went up and down the tower.

Next, we walked over to Chinatown for a late dim sum lunch.  With dim sum, waiters continuously bring out trays of Chinese small plates.  You pick and choose which dishes you want to buy and eat.  I think the total bill was $25 Canadian, and we all felt full and tried some very interesting foods. We had pot stickers, noodles, fried shrimp, shrimp dumplings.  We turned down the chicken feet and beef tripe, but we couldn’t resist the octopus.

That night, Julia and I enjoyed the rooftop jacuzzi, while Justin and Elvis watched the Blue Jays baseball game.  We got up early the next morning and drove all the way back home. It was a long drive, but we were all out of hotel reservations. We were all ready to sleep in our own beds at home after a long road trip.

A Young Man’s Bucket List

When we talked about where Justin would like to take his road trip, without hesitation, he said Canada.  He wanted to see Niagara Falls and Toronto. Justin’s form of muscular dystrophy is progressive, so we have traveled all over the world with him, knowing there would be a day when travel would be difficult. 

It became clear on this trip that we had reached that point.  At home, transfers from wheelchair to bed or bathroom are made with a mechanical Hoyer Lift.  We do not have space in the wheelchair van for a mechanical lift for hotel transfers.  It’s getting too difficult for me to pick up Justin and position him safely, for him and for me.  Both of our backs were messed up by this point of the trip.

Julia had booked a really nice suite for us at the Embassy Suites in Niagara Falls, Canada.  You didn’t have to look any further than the valet parking to tell that we weren’t at the Red Roof in Kentucky anymore.

I’ve told both of my kids that no matter who you are, there’s always going to be someone richer, faster, and better looking than you are.  But none of those advantages necessarily  make you happier. In fact, the guy who owns that orange Lamborghini probably cries himself to sleep wishing that he had the red McLaren.  And I’m sure there is something that makes the McLaren owner covet something.  I just can’t think offhand what it is.

The Embassy Suites room was supposed to be accessible per our reservation, but that didn’t work out.  It’s a huge hotel with only six accessible rooms.  One was taken, and the other five were under “renovation.”  Embassy Suites blamed Expedia for the mix up. The accommodations were beautiful, expensive and not at all accessible. We made it work, but things shouldn’t have to be that hard. One accessible room in a large, fancy hotel is disgraceful. I will say that service in the common areas was excellent, and we encountered no problems with service dog acceptance.

Before crossing the border to the hotel, Justin and Julia took a ride on the Maid of the Mist from the American side, while I hung out with Elvis the dog on the observatory platform high above.

I’m not a fan of crowds or boats, but I had an unexpected experience while hanging out with Elvis on the observation platform.  A family from India asked to take a photo with Elvis.  I reluctantly agreed.  Then another family asked. 

And pretty soon, a whole group of families starting lining up to take a photo with the dog.  One little girl stuck her hand in Elvis’ mouth.  I tried to explain that it wasn’t a good idea because the next dog might not be a gentle service dog trained to put up with such nonsense.  The girl’s mother responded by advising me that the little girl didn’t understand English.  I decided that would be the last photo, and we retreated to less crowded conditions off of the platform.  Of course, children cried.  Elvis had left the building.

On Day 2, Julia and Justin took a tour behind Horseshoe Falls on the Canadian side.  This short video captures Justin’s glee.

Later, Justin gave poutine a try, while I sampled the local IPA.

Julia and I hadn’t been in Niagara Falls since our honeymoon many years ago.  We both enjoyed our return visit, and Justin had a blast.