Memories of a road trip. Part 2

So, to recap out road trip so far: we’d driven from LA to Big Sur in a vintage VW camper van, with some breakdowns and adventures along the way. We’d arrived in Big Sur around 1am under a full moon…

Finally, we pulled into the campsite. Under giant Redwoods and beside the Big Sur River. And immediately set to work converting seats into kids beds, and converting the pop-up roof section into our Master bedroom! As quietly as we could. And trying to get to sleep. 

Now, our daughter has a habit of getting dehydrated very easily. And when she does, contrary to logic, she gets extreme vomiting and diarrhoea as a result. It’s just something that happens, and seems to happen whenever we go camping. So, the first morning at Big Sur was pretty challenging. But the campsite was beautiful, our fellow campers very friendly, and we managed to chill out for a few hours. 

But, as we’d missed out on the ‘Big Sur Scenic Drive by Daytime Experience’, my husband decided we needed to convert the van back into a van and go for a drive for a couple of hours. Other things we ended up doing were visiting Nepenthe Restsurant, hanging out at Pfeiffer beach and making s’mores by a campfire. But a lot of this was marred by fighting between myself and my husband. I’ll go into this in greater detail when I talk about ‘Road trips while disabled’. 

After three nights at Big Sur, it was time to move on. Because of our numerous problems on the way to Big Sur, we decided to get to San Francisco as soon as possible. We did stop for lunch at Carmel-by-the-Sea, the town where Clint Eastwood used to be Mayor. Very nice, but very expensive! 

We didn’t have time to visit the Monteray Aquarium, despite so many people having recommended it. As it was, we got into San Francisco a few hours later than we’d intended. A friend of my husband’s was waiting for us and we went out for a pizza and a drink. We had decided to splash out on our hotel, and stayed at the Nob Hill Inn. As there was no parking, we ditched the camper van at a multi-storey car park for the three days we stayed in San Francisco. 

We did a lot of walking in San Francisco, with plenty of rest stops along the way. Highlights included Coit Tower, ChinaTown, North Beach, and the Aquarium. Our last day there happened to be July 4th. That day, we got the bus to Golden Gate Park and walked around the park and around Haight Ashbury. Where my daughter was delighted to see ‘real hippies’! Then we got the bus to the Golden Gate Bridge. For some reason I had thought we could walk across the bridge and get a bus back from the other side. So, off we went. It was a long trek, even with my trusty cane, and the kids had to be carried a lot of the way. Then to my horror I realised there was no bus back and we’d have to trudge back the way we came! Plus it was very foggy and very very cold. But, we made it. Phew! So, that’s one more thing crossed off the Bucket List.

That night, we decided to walk to the top of Nob Hill to watch the fireworks. Except, it was so foggy we couldn’t see a thing. But I can say, there were the most impressive fireworks I’ve ever heard! 

The next day, we headed back to LA. As we’d never get there on time to return the van before they closed, we decided to stay somewhere along the way. Except we hadn’t actually booked anywhere. We drove back the faster-but-less-scenic route, and managed to find space in an RV park in Santa Barbara. The next day, we returned the camper van (who refunded us a day due to the tire issues) and hired a car for our last night in California. We’d booked a hotel at Redondo Beach, near the airport. We explored the pier there that night, and loved how much more diverse the people there were compared to the more upmarket Newport Beach. It really struck me how racially segregated a lot of the US seems to be. Our last evening meal of our holiday was a the Cheesecake Factory. Where, yes, you can get Corn Dogs. 

So, next day, we dropped off the hire car at the airport and made the long journey home. And boy were we glad to get home! (Though the reality of my husband now being officially out of work wasn’t as pleasant.)

Next post in what has now become a three-part series, will discuss the issues we had Road Tripping while Disabled, and how we overcame some of these. 

[image of a view of the Golden Gate Bridge, mostly obscured by fog.]

Memories of a Road Trip – part 1

Last night, I found out that my MIL’s cousin Mai died. Mai lived in Newport Beach in California and was very close to my husband. She’d always make a point of visiting us when she came to Ireland. A few years ago, she decided she was too old to make the journey, so last year we made the decision to base our summer holiday around visiting her in California. I’m obviously very glad we did. 

As this was to be a once-in-a-lifetime trip, we put a huge chunk of our savings into it. On the last day of our holiday, my husband got a text message from his boss, along the lines of ‘sorry to be the bearer of bad news, but consider this text your one month written notice.’ It would be November before he earned any more money. So, in a way, I’m glad we went on the holiday not knowing that would happen.  

For the first three nights, we stayed in a hotel close to Mai. Our first night there, while suffering from travel exhaustion (longest journey with the kids so far) and jet lag, we went out for a meal with Mai and her two sons and their families. At an Irish pub, of course! Although her son’s seemed to be in denial,we could see the first signs of Mai’s dementia. She wanted us to pick her up in the morning so she could take us on a ‘tour’. Although we agreed at the time, we thought better of it the next day as we didn’t want to be responsible if she led us astray! (I had visions of Al Pacino from Scent of a Woman!) Although we phoned her on the last day of the holiday, it turns out we would never see her again. 

Instead of driving Mai around, we went to Balboa and went on a Whale watching trip. We didn’t see any whales, but saw hundreds of common Dolphins. The kids enjoyed it, especially getting splashed by the waves. We also hired a little motor boat and motored around Balboa Island, admiring the incredibly expensive houses and pretending we lived in them!

We discovered Ruby’s Diners, which would become our staple diet for much of the holiday, especially the corn dogs. In fact, corn dogs (not readily available in Ireland) would feature an awful lot over the course of the entire two weeks. 

On the third day, we ditched the hire car in favour of the vintage VW camper van we had booked. And the ‘real’ holiday would begin! Though not without a visit to Disneyland. As it turns out, there’s an RV park close to Disneyland, with a shuttle bus to take you there. Because of the usual delays with picking up the camper, we only had an afternoon in Disneyland. Because our son had just been diagnosed autistic and we had paperwork to show it, we were able to skip the queues and just turn up at our designated time slots. This made all the difference. We managed to pack in a lot, including the Best Corndogs Ever, and even managed to see the parade twice. And when we were done, we headed back to our first night in the campervan. 

The plan was to ‘pop into’ LA to see a few sights the next day. But that proved a bit difficult, especially with parking, so we just had lunch at a street market. We wanted to visit Venice beach, but again parking was impossible to find so we ended up stuck in traffic. Finally, we headed off to see Kathleen, Mai’s daughter, where we’d been invited to spend the night. On our way though, we noticed the tires were giving off a smell and were incredibly hot. We made our way slowly and arrived a few hours late. Kathleen and her family were so incredibly kind to us. I know the Irish are meant to have a welcoming reputation, but I’ve found Americans to be equally, or more, so. The kindness of Americans was a strong theme during our holiday.  But I do wonder how much of that was influenced by the fact that we were Irish, and white. (And I’m sad to say Mai’s other daughter had been disowned for marrying a Mexican. I don’t even know her name!) Anyway, we were well fed and entertained that night, ready to begin our road trip the next day. The plan was to drive to Big Sur in the morning, stopping at various coves etc along the way. We had booked three nights camping in Big Sur, then we would drive to San Francisco where we’d stay in a hotel, then drive back to LA to return the camper van and stay one final night in a hotel. 

However, Kathleen wasn’t happy about the camper van tires, so she insisted we visit her local garage in the morning. Turns out, the tires needed to be replaced and the spare tire was bald! When we finally got hold of the camper van hire guy, he insisted we drive to a certain garage in Santa Barbara to get the tires replaced. Kathleen very kindly drove me and the kids (the camper van had no air-con!) while my husband followed in the VW. She stayed with us while we got sorted out, then we said our goodbyes. 

And so, finally, we were off! 

Now, my husband had actually made this road trip once before. Years ago, with his ex. Although they’d hired a regular car and gone camping in tents. But for as long as I’d known him, he’d wanted to recreate that journey. He’d also owned a vintage VW camper van when he’d lived in the UK. Again, before I’d known him. And again he had often talked about it like it was an old friend. I’d never been in the west coast of the USA and the kids had never outside Europe/Turkey before. So here was his chance to impress us!

As the whole morning had been wasted in Santa Barbara, we did not have time to visit any coves or beaches along the way. We wanted to get to Big Sur before dark. As it was, we had only just turned inland and northbound, when the sun began to set. In the distance we could see a forest fire. Just as we got to the first steep incline, the camper van began to slow without warning. Eventually, it ground to a halt. Seems the fuel gauge was faulty and we’d run out of petrol! 

We got out of the van, as it didn’t feel safe sitting in it in the ditch while cars and trucks rushed past. So, we sat up on the embankment, making various phonecalls. Again, the owner of the camper van could not be reached. Kathleen could, and she began suggesting various breakdown assist options. However, just when we were starting to get very stressed, a car slowed down and a guy in a DHL uniform got out and asked if we needed help. Turns out, he’d owned a camper van and knew how tricky they could be. We piled into his car and he took us to his home, which was just down the road. There he introduced us to his beautiful kid and friendly wife, and fetched a spare can of petrol from his basement. He then drive us back to the camper van and gave us directions to the nearest petrol station, and we were again on our way. I regret that in our panic I never asked him his name. We still refer to him as ‘ the really kind DHL guy’. 

So, now, we really were on our way. We’d given up on arriving at Big Sur before dark, and so stopped for dinner at San Luis Obispo. Shortly after that, the kids fell asleep. We had been driving a while when we passed a sign on a temporary notice board. I saw ’10pm to 7am’ on it but couldn’t make out anything else as we passed by. At this stage it was about five minutes past ten. We were just reaching the scenic part, the start of the Big Sur coast highway, and there was a full moon! But, also…a roadblock! Seems the sign we passed said the road was closed between those hours for essential roadworks! So, we just stopped there debating what to do next. Should we turn around and try to find a hotel? Should we find a lay by and camp there for the night? How safe would that be? We were just about to turn around, when a car passed us from beyond the roadblock. The driver wound down his window and, in a foreign voice, told us it was ok, they were letting folks through. So, we decided to go ahead. We drove up to the roadworks and my husband got out and spoke to the foreman. Turns out, the other car had not had permission to pass and had put everyone in danger by just ignoring the roadblock. But the foreman must have taken pity on us, with the two sleeping kids in the back, and radioed the crew to stop working for a few minutes and let us pass. 

And so, that’s how my husband and I ended up driving along the Pacific Coast Highway in the middle of a moonlit night, without another soul on the road. We stopped at a viewing point and just stood there, holding hands inabsolute silence, except for the sounds of the waves crashing on the shore below. My phone had run out of charge at this stage, so I’ve no photos. But no camera would have done it justice anyway, and trying to capture the scene would have just spoilt it. It really was an amazing experience and one I’ll never forget.  So, in a way, it was our good fortune to have hired a troublesome camper van with dodgy tires! 

I’m going to end this post here, as it’s getting rather long. Next time, I’ll write about Big Sur, San Francisco, and ‘Road Trips while Disabled’, so stay tuned for that! 
[image of the scenic Bixby Bridge at Big Sur, taken at dusk. There is an overlay of a Canva watermark, as I did not take this photo but it gives an impression of the road we were on.]

No offence! 

Six months ago, I gave up on Facebook. I’d signed up to it originally to share photos and news with my farflung cousins and family. I’d added friends from school and wives of my husband’s friends. Nobody I hadn’t met in person. Then I added some who shared my chronic illnesses, first Fibromyalgia and then Ehlers Danlos. 

When my son was diagnosed autistic and I realised I may be too, I created a second account, to connect with others without ‘outing’ myself to my extended family and those who went to school with me. Through this account I found and connected with numerous autistic people, including many advocates. 

That all went well, until one day I rubbed someone the wrong way. I had offended them without realising it. I had made what I thought was an innocuous statement about my own personal circumstance. Turned out this was a ‘final straw’ and this person then messaged me with a litany of offences I had committed. Again, I had been oblivious that I had said anything controversial or offensive. Hurt by what I saw as an attack, and hating conflict of any kind, I fled from Facebook. 

But, still seeking connection with others like me, I joined Twitter. I liked Twitter. Short statements suit me. My followers grew. I’ve no idea how or why, I certainly wasn’t expecting to have more than a handful of followers. 

But then I noticed how one badly worded tweet by someone could have dire circumstances. I made mistakes, forgot to add TWs. And seemed to get away with it. I got a little bit of hassle from racists and ABA-defenders and autistics who don’t believe in self-diagnosis. But overall I wasn’t hassled too much. 

Nevertheless I found myself agonising over every word. Would this tweet, this phrase, cause offence. Does it need a TW? A CN? What’s the difference between those terms anyway? I kept writing and then deleting tweets. Getting more and more anxious. And spending more and more time each day thinking about it. Yes, it’s good to be mindful of the language we use. Yes, I would never use words I knew were offensive. But I’m only human and can’t think of every connotation of every word I use. And trying to do so was effecting my mental health. 

And so, I’m taking a step back from Twitter. I’ve deleted the app on my phone and have limited daytime access to my iPad. So, I plan on doing a lot less tweeting. And sticking to what I hope are innocuous tweets that can’t possibly cause offence. I hope. 

Because, I hate hurting people, I hate conflict, I hate drama. Those things cause me to run a mile. I hate seeing people I follow squabbling. I hate seeing them hurt. I have too much empathy. And it’s getting me down.

So, like a snail, I’m going to withdraw into my shell for the winter. Poke my head out for the odd tweet, but concentrate on my blog for now.

I know you’ll all understand!  
[image of a page from a children’s colouring book with a description and picture of a Garden Snail.]

 

Edelle*

*I’m not sure how she spelt her name, it would have been the Irish spelling probably, but there are so many versions so I’ve just picked a common one. 

Growing up, the only visibly disabled person I knew was Edelle. She was a girl in my class in school. I don’t know what her disability was, but her legs were tiny and she used a wheelchair. As I had trouble making friends, I can’t call her my friend. I didn’t know her surname or where she lived and though I knew she had siblings, I knew nothing about them. I just knew she wore Doc Martin boots for the original purpose the good doctor intended them, she worked hard at school, and had lots of friends. I liked sitting beside her as I got to escort her to the bathroom, which meant a welcome change to the tedious classroom. She could be cranky at times, and she tried to chat with me a little too often, but I liked her fairly well. I especially remember the whole class cheering her on, when she took her first steps out of the wheelchair, using the desks to hold herself up. She was determined that one day she’d walk on her own. 

One day, I got dropped off at the school gate as usual, and my mom sped off to work. To my horror, when I went to my classroom, there was nobody there. I finally found a teacher that informed me that Edelle has died at the weekend and the whole class and our teacher were at her funeral. Apparently it was kidney failure. Apparently my best friends mom had babysat Edelle’s siblings while her parents were with her at the hospital. Apparently nobody had thought of telling my mom, we were so far out of the loop, so far from anyone’s thoughts. Apparently the whole class had lined up outside the church and formed a Gaurd of Honour. Except me. 

I got through that day somehow. I was put into another class for the day, as obviously my mother could not be reached in the era before mobile homes. I got through it. But the feeling of isolation, the feeling of big stuff happening without my knowledge, the feeling of being out of the loop, has never left me. 

Edelle was very much loved by everybody. She had lots of friends. And due to her visible disability, a lot of accommodations were made for her. She was included in every aspect of school life. Which is brilliant. 

But a part of me is very sad. Sad that my invisible disability meant that the same level of inclusion was not for me. Sad that my problems got missed for so long. Sad that there wasn’t the same level of understanding. 

So, today, I grieve for that bewildered little girl, standing on her own in an empty classroom, not knowing what the hell is going on. Something inside her died that day, the day she realised that nobody in the school actually cared that much about her. Cared enough to think of her. And that, that is one memory that stands out from my primary school days. 

[image of a kneeling, praying cherub statue. In the background is a coffin draped with roses. Behind that and out of focus, is part of a grieving lady in a dark suit.]

My Bullet Journal…plus some thoughts on Bullet journaling while disabled. 

Because of my terrible organisational skills and reliance on lists and planners, and my annoyance with digital planners, I recently decided to try out keeping a Bullet Journal. For those unfamiliar with the concept, I urge you to check out the original Bullet Journal website.

My first bullet journal, though a beautiful and fun notebook I bought in Tiger (where else?!), and with its geeky cover being perfect for me, turned out to be too big and cumbersome due to its A4 size. I hadn’t realised that A5 is specified for a reason. Here’s a picture of its cover:

[picture of the cover of a hard backed A4 notebook, with a colourful Periodic Table of the Elenents as its cover design.]

So, last week, again in Tiger, I bought this A5 notebook, with a lovely soft cover, and a page marker ribbon. I decorated it with black foam letters (again, Tiger!). The inside is also dotted rather than lined, which means you can be more flexible in how you use it. In fact, it looks very similar to the most popular notebooks used for Bullet Journals, but at a fraction of the price. My only regret is that I didn’t buy a load more, as they now seem to be out of stock.

[image is the cover of a black A5 notebook, with the words ‘Bullet Journal’ written in black foam letters, written diagonally so they fit. Some coloured page markers are visible poking out the right hand side.]


Lots of people use pens, often fountain pens, to write in their Bullet Journals. I hate writing in pen, and find pencils and colouring pencils, much easier to write with. They are also useful because I usually make so many mistakes or need to straighten out my writing. But because I can’t sharpen pencils without causing wrist pain, I like to use mechanical pencils. The one I use comes with interchangeable, coloured leads. These are stored in a handy case, the side of which I use as a ruler when drawing lines. Again I bought it in Tiger and they don’t seem to stock them anymore so I’ll have to find something else when all the lead runs out.

[image of a pink mechanical pencil, next to a case with many coloured leads.]


As with all Bullet Journals, I start with an Index page, which states what’s in the journal, plus a page number. I’ve divided the page into two, with my monthly and daily entries on the right and everything else on the left.

[image of an index page of a Bullet Journal, with entries plus page numbers, written in pencil]


The index is the main idea behind the Bullet Journal. It means that you can find the things you need to find, quickly and efficiently. After that, what you put in the journal is very much up to you, though there are one or two recommended sections.

I read someone claiming the Bullet Journal is ableist. In my opinion, the basic bullet journal is quite the opposite. The person’s complaint seemed to stem from the incredibly ornate and “beautiful” bullet journals they saw online on places like Instagram. Often these have amazing calligraphy and artwork, and do look like they’d be difficult for disabled people to emulate. But there really is no need to copy these! The basics are the basics and don’t need to be fancy. Mine certainly aren’t. In fact, my first Bullet Journal contained no colours at all. Also, because you have to write it out by hand, and my hand gets tired and hurts if I write too much, I keep my entries etc very short and try to limit how much I write.

Other ‘core’ parts of the Bullet Journal include the Future Log and the Monthly log. The Future log allows you to note down appointments etc far into the future. Mine actually covers 13 months, I’ve no idea why I did it like that. The monthly log allows you to plan out the month your in, with appointments on one side and a to-do list on the other.

[image of two pages inside my Bullet Journal. On the left hand side page is my Furure Log, with the months Sept 2016 -Oct 2017 marked out and a few appointments pencilled in. The right hand side page contains my log for September, with appointments and events on the left and a to-do list on the right. ]


Then you have your daily lists. Here I write the date, day of week, plus any appointments. I then look at my monthly to-do list and see if I can do any of these that day. I may also write notes about that day, or thoughts I’ve had. My daily log is on the right hand page of the photo, with the words “Bad headache today” circled in red.


As you can see, on the left hand page, I’ve added a Weekly Food and Drink log. This is another area where there are Pros and Cons when it comes to Bullet Journalling with disabilities. I found a lot of people using Food logs, but also logging items such as Diets, No Sugar days and Calories Burned (or exercise logs), as well as tracking weight loss. These can obviously be very triggering for those with Eating Disorders and/or Exercise Addiction. So, I wouldn’t recommend looking at those Instagrams etc if you feel you might be triggered. My Food log, on the other hand, helps me keep on track with my eating. The aim is to eat a certain amount every hour for twelve hours a day. I also need to keep hydrated, so I track my liquid intake. And I’ve added a Milkshake chart, as these really help me stay on track calorie-wise and also lift my mood.

Two other trackers common for those with disabilities are Symptom charts and Medication trackers. I’ve incorporated these into my Bullet Journal, and hopefully I’ll remember to use them. I think they may also be useful for bringing in to show my doctor.


My symptom tracker uses a simple ‘traffic light’ colour coding. On the opposing page, I’ve started to note meals, so I don’t end up cooking the same dish too many times a week.


My medication tracker is a bit sparse as I’m not currently taking much meds, but will be discussing options with my doctor soon. So I may start taking some of them again. On the opposite page are some random doodles!

These various trackers are marked with page markers. To remember what the various colours are for, I’ve written them down just inside the cover.


I also have two other trackers, one for Weekly habits, one for Daily habits. Hopefully they’ll help me keep my chores on track. They seem to be working so far, but it’s early days!


I think these Daily and Weekly trackers, and the Monthly and Daily logs, may be the key to improving my executive function. They seem like the right tools for my neurodivergent mind. It seems many other people find Bullet Journals help their executive function. For example, many people with ADHD find them very valuable. You can read some accounts herehere and here. But the best explanation I’ve found for how Bullet Journals are helpful for ADHD is this YouTube video by the very talented Jessica McCabe.

ETA: when I wrote this post, I hadn’t been able to find many blog posts by autistics that use Bullet Journals. I’ve since found a few, such as this and this. I also found this, created by a parent who has an autistic child as well as two other disabled children, and it has lots of good tips that I’ll have to try eg a page for each medical appointment including questions to ask plus how it went. If anyone has any other blog posts they’d recommend, p,ease write them in the comments and I’ll check them out.

I’m sure I could write a lot more on this topic but I think that’s enough for now!

*I’m also aware that I’ve only added image descriptions to the first few photos, but I’m tired and couldn’t do any more. I’ll add more when I have the energy. And put that into my Bullet Journal so I won’t forget!

My September Tiger* haul 

*Tiger Stores have changed their name to Flying Tiger, but as someone who hates change, especially when I see it as unnecessary, I refuse to comply with the name change! 

 As I have a bit of a Tiger addiction, I have decided to only allow myself to shop there once a month. And to justify buying the things I buy, I’m going to write up my haul, to convince myself, and my readers, that they really are worth buying. I will mainly post photos, with an explanation of the items in the image descriptions. I’ve done my best to group items into related categories. 

So, here goes:

[image of various food items. Starting on the left are two packs of Dutch waffles. On top of these is a Peanut/Sesame bar. Above these is a bottle of Chocolate milk. To the right of this are two packs of mini Pretzels. Finally, to the far right, is a bag of Banana Chips. ]

 
[image of various stationary supplies. From the left, an A5 drawing pad, a black notebook to be used as home/school notebook, a pack of page markers, two glue sticks, a pack of multi-colour crayons, an A5 notebook with dot grid to be used as Bullet Journal. A pack of Sticky Fix. Two packs of pencils with eraser tops and witty messages written on them.]  
 

[image of various medical/hygiene items plus stimmy stuff. Clockwise from bottom left:  two bars of Rose soap, a blue ball with hologram sparkly tape inside,  one Long Roll of Plaster, a Vitamin Organiser which is a small pill box with three compartments, a dark purple Twisty Worm and finally, in the centre, another ball, larger than the first, filled with liquid and golden glitter. Note: me and kids now fight over this ball, it’s so stimmy!]  

 [final image. For some reason I can’t insert text between this image and the previous one, so description appearing after rather than before image. This is a miscellaneous grouping. Clockwise from top left: a pack of multicoloured straws, a jug thingy designed, I think, for washing hair in the bath, a pack of two bottles of bubble mix for soap bubble toys, and a DIY bracelet kit consisting of four colours of thread plus a strange foam circle with numbers on it. This contains instructions but I haven’t figured it out yet.]
So, there you have it. My September haul. Fighting off the urge to go buy more stuff. Hard to wait till October! I don’t have cost of the items as I didn’t keep the receipt, but do remember it was under €50.