Tiny Salutations

Tiny Salutations


Tuesday, September 13, 2016

Midsummer Camping Part III- Hood Canal

Peeking through the leaves of the Camperdown Elm
Back to our midsummer camping trip.... This is finally the camping and exploring part! We intended to make this part of the trip longer, but we were pretty exhausted by this point in the trip. Our son was having a harder time calming himself, but mostly I was very worn out from over exerting myself and lack of sleep.

We took a ferry from Coupeville on Whidbey Island over to Port Townsend. When we were originally planning to stay longer, we planned to play in the Olympic National Park, but since we cut things short, we decided to explore the northern Hood Canal area. I highly suggest seeing the Olympic National Park for anyone interested- we've just seen a lot of it.

Skagit Valley- I can't believe we used to live in this beautiful place and left!
Lake near Deception Pass with sailboats
Sunset along Deception Pass
Near Port Townsend-Coupeville Ferry
We started out by boondocking at Lyre River campground, which is a very small (but free!) campground. We have been there before. The sites are pretty awesome- ours was right on the river. The only problem we had was that it was right next to the camp host who was chain smoking and running a generator so loud that we got very frustrated trying to yell over it. We ended up going to bed early to get away from the smoke, well, trying to go to bed early. We read Harry Potter together while our son when wild from the change in bedtime. This is a very pretty spot to camp and we did have some fun playing in the river, so we had fun there too. We even saw some river otters playing and swimming up stream!

Our campsite at Lyre River Campground
Our campsite at Lyre River Campground- This beautiful spot is in our campsite right behind our tailgate.
Exploring the rocks
Watching the river, climbing the rocks
Watching the river, climbing the rocks
Investigating the river
River otters! only feet from us in our campsite, playing and swimming upstream
Our truck camping conversion from inside when in use. This is our attempt at the early bedtime and as you can see our son is having trouble keeping his hands off the lights (also, staying still, there's not a ton of room for wild children)
Camp lights! These lights are not solar power as those we have used in the past, but they are battery operated and so simple to use. This was the first time we tried them and they were awesome. I picked them up in the dollar section (actually $3, so I'd say "impulse buy section") of Target.
The next day, we visited Port Gamble. We had never been there, which in my mind constitutes an adventure! I had seen Port Gamble in a book I gave my husband years ago called Ghost Towns of the Pacific Northwest. I would not call Port Gamble a ghost town by any means. It is a nicely maintained historic town that hosts a small population of day trip tourists. It was founded as a company town for a port exporting timber in the 1800's and now has many lovely historic buildings.

Port Gamble water towers at the town entrance
 Port Gamble historic General Store (left) and trying out the antique scale out in front of the General Store (right)

We started at the Port Gamble General Store briefly, then moved outside and around back of the store to the Port Gamble museum. On the way around back though, we found a few interesting things outside. Here we found a Camperdown Elm Tree, my favorite part of the trip. Yes, a tree was my favorite part of our trip. First of all, it is magical. It's a tree that grows like a giant umbrella, with a waterfall of leaves all around, and curly branches. My family went inside with lots of room to spare. I was even able to get into the tree with my wheelchair! Then it gets even better. The story behind it is great. To read the story, check out the photo taken at the tree below. 

Story of the Camperdown Elm. This sign is posted in front of the Elm near the Port Gamble museum. 
 The Camperdown Elm from the exterior (left) and interior (right)-- Magical right?!

The curly, twisty, trunk of the Camperdown Elm
The crooked, twisted branches of the Camperdown Elm
Peeking through the leaves of the Camperdown Elm
We then went into the Port Gamble museum, which was accessible. This was my son's and husband's favorite part of the trip. Who would've thought that a four year old would've enjoyed a logging history museum so much? They did a pretty good job making it appeal to a variety of ages actually. After the museum, we took the historic walk up and down the main street to gaze at all of the historic buildings. Before leaving, we took a look at the beautiful historic church.

Inside the Port Gamble Museum
One of the many well cared for historic buildings of Port Gamble along our walk
Along our walk of the historic main street in port Gamble
Historic church in Port Gamble
Historic church in Port Gamble
A found treasure- a bird's nest
The world is full of pretend wands- pretending to be Harry Potter
After Port Gamble, we went to the lighthouse at Point No Point. Lighthouses are kind of one of our things. It's a nice lighthouse, which you can only view from the outside (unless you rent the lighthouse) and which is accessible. There are also some great drift wood art sculptures and easy access to the beach, although the beach itself is not accessible. We got an up close look at the lighthouse and the drift wood art, then spent some time on the beach. Our son had an intense sensory experience with the sand at which point we decided it was time to go home.

Point No Point Lighthouse
 Walking to the Point No Point Lighthouse (left) and a perfect row of trees (right)

Sand sensory input
Drift wood whale tail
Enjoying the drift wood sphere (foreground) and drift wood horse (background)
"Sand angels"
Sand sensory input
"Sand angels"
Exploring the beach at Point No Point
Playing in the sand at Point No Point beach
It seems it has gotten so much more complicated to leave the house in the past year, let alone go somewhere overnight. This was an exhausting trip, but ended on a good note. I think that I did more than my body could handle, which made me pretty sick, but I think that teaches me a little bit more about myself and how to still have fun despite such pervasive illness. We also learned more about how to travel with a child with autism, which things to avoid and which things are welcome and wonderful experiences. 

Flowers at Point No Point lighthouse

Monday, September 5, 2016

The Disability System is a Failure

The system for disabled adults is a failure. I assumed that in the US, a developed country, there would be systems in place to protect disabled adults, to ensure their survival. That, it turns out, is not entirely true. I have been unfortunate enough to have experienced this, particularly this past week. The past week I have spent hours on the phone, on hold. I have been walking around in a sort of trance, this heavy truth hanging on me, not letting me be truly present, but instead helpless and terrified.

At the start of this month, my insurance was changed from a plan that covered 100% of my medical bills to one that would now put me in charge of huge amounts of my medical bills. With this new insurance, I now would have to pay 20%, plus copay, plus deductible, plus a big chunk of my disability check to pay for this “service”. I’d just like to take a moment to reflect on this idea. My medical care easily costs more than $1 million a year. I am given less than $10,000 a year in disability payments. My income is less than 1% of my medical bills per year, and they are asking that I pay 20%.

There are programs that can help low income folks with these costs. I am very good at finding programs that can assist my family. It’s one of my superpowers. So I applied to these programs, doing everything right. Here is the big problem, you can only apply for these programs up to 30 days prior to the insurance switch, but it takes the offices more than 90 days to process. So even if you do everything exactly as they ask, you cannot possibly get immediate coverage. This is only scratching the surface of the complicated rules that tend to interfere with each other. The rules tend to change often and conflict with other rules.

I have been told at these offices that disability services are a privilege, not a right. I really thought we were past this, as a society. I thought that in the developed world, we took care of the unfortunate. The system as it is is not enough to care for young disabled adults. This system is not great for seniors either, don’t get me wrong, but there are many gaps in the rules with the assumption that young people are not disabled. So this is where I am at… I am very ill and need care, but I do not have good enough insurance to get the care I need. This insurance switch is specifically because I am disabled. I am getting less medical coverage because I need so much more medical care. The disparity of deadlines between offices means that I will not have enough help to receive the medical care I need, nor will I have any drug coverage, for 90 days, despite following all the rules. Each month, I have 30+ doctors visits/procedures, thousands of dollars of medications, medical equipment, and a hospital admission for infusion. I cannot access this without proper health coverage. All I can do is wait. I am sick, and getting worse. I don’t know how long I can wait without access to medications, without doctors. I want to be angry about this, but, honestly, I think I’m too scared to be angry.

Disability services are a privilege, not a right? I guess living is a privilege, not a right too?