I was fascinated by so much that I saw in Budapest.
The grocery stores, markets, food
Spaces, things available to the public.
The playgrounds were so nicely designed, new, cushy, the kind every child wants to spend time in.
The buildings in Budapest are famous for a reason: they are almost unbearably lovely.
The doors are like art; the details made my soul ache with the beauty.
But I found after a while that I didn’t care very much anymore about how gorgeous everything was.
I was just unhappy with how mean and grumpy everyone seemed to be.
You know, I’d walk up to a little kiosk and smile and make eye contact and emit ALL THE GOOD VIBES and ask for some bread or something and the sales person would visibly roll their eyes and all but spit at the bread before handing it to me.
It was like they could not be more put out by being there, by our existence, by absolutely everything surrounding them.
Add that to heat, miles of walking, trying to figure things out and you’ll get a mom who was getting increasingly put off by the attitude, less willing to shine the good vibes.
Even though I suspected that I could be in the wrong areas at the wrong time – or in a tourist zone? Or just unlucky? – I was seriously thinking of just leaving because there didn’t seem to be a point to being in a place that, however gorgeous, was just mean.
The Railroad Museum of Budapest
We went to the Railroad Museum when I was feeling no positive vibes and readyto leave the next day.
It took a long time to get there – about 6 transfers through Metro and Tram (we left the stroller at home through the entire trip to Budapest on account of the flights of stairs and lack of overall access).
I noticed that people got nicer as we got further from the city proper.
They looked less grumpy. We got more smiles – even if just eye smiles or eye warmth.
I thought later how impossibly different Hilo is from Budapest – I mean, the town where everyone smiles at everyone else and says hello, waves shaka, with the city where everyone walks around like their house just burned down.
Like I was saying, people were getting a little warmer with more transfers we had, then we were at the Railroad Museum.
The Railroad Museum was cool.
The people there seemed nice and I definitely enjoyed all of their trains. As did the kids.
We made our way back
We made our way by walking, then via trams to the subway station and decided to stop for a bite to eat at a station eatery (that looked remarkably like a Mexican taqueria).
We got food, settled in, and after a while, Micah told me that people at the back of me seemed to be deaf, signing.
I turned and sure enough!
We started talking, and it felt like I was home.
The lady spoke ASL; the man only Hungarian sign.
But we had the best conversation about just.. stuff.
Everything and nothing and it felt so easy and wonderful to talk to them and laugh at their (many) jokes (like she couldn’t believe all of my kids were from the same father, and joked that I had a lot of guys stashed around with all these kids of mine).
We laughed and laughed and it felt sooooooooooo good after holding all that tension inside – it was like the steam blowing out from a pressure cooker.
Tears slipped out of the corners of my eyes from the delicious release of all the pressure and joy of friendship and through the laughter my heart opened to Budapest.
This is a travel post about taking the sleeper train in Europe (from Utrecht in the Netherlands to Budapest, Hungary)
There was a change in plan.
My mom, whom we were going to meet at Nijmegen, Netherlands after her conference was finished, had to delay her departure from the US. That meant that the kids and I are going to be traveling by ourselves until she heads over.
With that, I thought it might be a great time to go to Budapest. So I went to Amsterdam to get the Eurail tickets sorted out and got everything for Budapest squared away.
We went to (what was quickly becoming our beloved) little local grocery store in Bunnik to stock up on some food for the trip.
Ran back to our Air B’n’B, finished packing the all-important Snack Basket
Then we ran (like, literally: RAN) to the train station to catch our local train to Utrecht.
Looking at this photo makes me smile because you can barely sort of see this young couple in the back of Micah. They started making out after I took the photo, and I was laughing at them a little in my head, “oh, get a hotel room!”
When the train came, they disentangled themselves from each other and both the guy and the girl raced over to us and just lifted our stuff up and helped us in the train. They were SO SWEET!
We started chatting and they taught the kids how to say “thank you”, “hello” and “please” in Dutch, then before we knew it, we were at Utrecht and they helped us off, waved cheerfully and went on their happy way.
I love the Dutch
Utrecht to Budapest, by Way of the Night Sleeper Train
We had three transfers on the way to Budapest, the first of course being in Utrecht.
From there, we transferred in Dusseldorf (Germany) and Munich.
It was all going really smooth. We had these super comfortable, plush seats in these super comfortable, plush carriages. We were all munching chocolate (given to us by train attendants) and watching the sun set over lovely rolling German hills.
The Munich Transfer
“Munich” in German is not “Munich” – it’s this other long word which I don’t remember.
As our train pulled up to something long-Munich-looking, I gathered up my kids, the bags, the stroller, the suitcase, and prepared to get off for another transfer. I wasn’t in a huge rush (like I had been at Utrecht and Dusseldorf) because we were supposed to have an hour layover in Munich.
So we went over the vending machines, got some German sugar to keep us up (- it was 10:30pm and I needed us to be on our toes until the 11:30pm boarding!), and kind of wandered over to the information desk to ask where the platform was for boarding this night train to Budapest.
The ticket guy was all, “oh, you are at the wrong station – you need to be at Munich-something-something-really-long”
I turned that party right around and we hauled ass to the train platform to catch this train to the Munich-something-something-long-name which was FIVE STATIONS AWAY.
Meanwhile, I’m trying to stay really calm and “hey! this is fun, kids!” so Micah doesn’t freak out because this is just the kind of thing that will set him off.
We got to the hella-long-station-name (the RIGHT ONE this time!) and I ran downstairs (“ran” being a relative term for this middle-aged woman with 3 little kids, all carrying huge backpacks with an enormous stroller and a wheeled suitcase) to find the information desk to find out what platform we were supposed to be on.
The information desk was closed.
So then I was frantically (but with that calm facade for my kids, right?!) trying to find it on the monitor display – FOUND IT!! – but where the fuck was PLATFORM 12????? I couldn’t see it anywhere!
I ran (relative term, remember) over to a group of guys that looked like they worked there (something about their uniforms). I asked them where the platform was and one of the guys looked at my ticket while I all but jumped up and down in impatience for him to HURRY UP and this other guy was giving my kids candy and smiling at them in delight. The first guy finally looked up and was like, “I don’t know where this is…” but then added, “maybe go upstairs and look.”
I found the elevator and rushed us all in, squeezing, and holding my breath – we had TEN MINUTES to get on that train before it left.
The seconds stretched as the elevator moved slowly up, and I thought of how happy I was to be doing this rush in Europe, in the something-something-long-Munich-name-station and not in say, Oakland, where the elevator would be reeking of piss if it worked at all, and I’d be slugging up those Oakland train stairs with all of the bags and the kids. Go, access, Europe! I love you, working elevators!
The doors opened to this totally different world – one with huge trains resting on a multitude of platforms.
BOOM – there Platform 12 was, at the far end – we ran, ran, ran and hopped on board, made it.
The Night Train to Budapest: A Sleeper
I used to read Agatha Christie’s books when I was a kid.
Or, more accurately, I devoured Agatha Christie’s books when I was a kid, I gulped her books down in voracious single swallows and reached for more.
I adored Hercule Poirot, got to like Miss Marple (because I was desperate) and avidly dreamed about intricately fashioned art-deco worlds in which sleeping on the train was a way to get somewhere in Europe.
So, of course. The kids and I took a sleeper to Budapest, and I think that sounds like the sexiest line I’ve ever typed, “the kids and I took a sleeper to Budapest.” Right?! That’s every kind of WOW, right there.
The kind (but stern, unsmiling and professional) Eurail lady in Amsterdam had gotten us a car to ourselves. There were six bunk beds once we figured out how to pull them down, and absolutely no room on the floor for the stroller and suitcase!Channeling Captain Marvel, I hoisted that stroller up to one of the top bunks, the suitcase on a lower one, and we settled in.
Sleeping on a European Sleeper Train
I was in heaven.
My kids were totally laughing at me, saying I was like a kid in a candy shop. But it’s the truth: I was SO FREAKING HAPPY to be in that moment, in that space, to be with these little people that I love so much, doing something as rad as riding a sleeper train to Budapest!
We all slept deeply and well, the rocking of the train lulling us back to sleep whenever we’d chance to wake up.
Waking up with the sun, we had a great breakfast from our Snack Basket full of lovely Dutch things, and watched the Hungarian countryside pass by.
The mustachioed train conductor (Hercule!!) came by to tell us to get ready, and also to collect our “bed clothes” (- the blankets).
This is a travel post about physical access in Holland (the Netherlands). It includes opinion about Dutch euthanasia, eugenics and the differences between the Netherlands and the United States with regard to disability rights and access.
You know how you don’t really miss something you’ve never had?
Like, you kind of bumble around life, stumble over some stuff and think, “man, that sucks, but it’s the way it is, right?” and continue forth.
I was like that with captions in the movie theatres for most of my life. I couldn’t hear a lot of what was going on, but I thought that was all I could do, and tried to make the best of it. But then once I experienced having captions on my movies, there was no looking back: I wanted captions on ALL of my movies, and I wanted them NOW!
Coming to Holland and seeing how access can be has that same feeling for me.
Access in Holland
A path on the left for pedestrians, a path next to it for bikes and strollers. A swathe of grass, then a road for cars.
THIS IS HOW IT SHOULD BE!! Oh my God! This is so much better than the bike lanes they have in the San Francisco Bay Area because these have the grass that separate the (tiny!) car lane from the people who use wheels.
This makes so much sense, doesn’t it?
Of course this was in a village about an hour outside of Amsterdam and Amsterdam wasn’t the same
But the difficulty in Amsterdam wasn’t physical access so much as it was just getting through the hordes of tourists. That place is packed and that made it no fun for me, so we left.
But it was still physically accessible and I think it’s that way because the Dutch really love their bicycles
Train Access in Holland
This is where in particular it was amazing to me.
You see, when I lived in the San Francisco Bay Area, I used the trains a lot, and I also had a lot of friends who use wheelchairs. Later, I used strollers myself, and access really mattered.
I can’t tell you how many times an elevator was broken by the train, and I had to just skip the trip or walk to the next station or something. Other times, the elevators worked, but I couldn’t ever wrap my head around how awful it all was. The elevators usually reeked of urine and were just gross. We would have to go all the way down, all the around to punch a ticket, all the way down again, and overall, it would take easily twice or three times as long as it would the inaccessible route.
So these Dutch train elevators made me want to cry a little:
Check that baby out.
Gleaming. Spic n’ span. Fast.
In every station I went, I had to take the elevator because I am traveling with a double BOB stroller (which is the same exact size as a wheelchair). It’s a pretty fantastic measuring stick for how it would be for someone who uses a wheelchair.
It was awesome. Super easy to find the elevators – they are all as centrally located as is humanely possible. They are directly in the line of the trains and the ticket counters. I mean, this is how it should be! THIS IS HOW IT SHOULD BE EVERYWHERE.
Why is this so hard? I mean, people who use wheels are not second class citizens – we shouldn’t have to go through stupid hoops to get on a train, nor should we have to ride gross elevators that stink of piss to catch a train when no one else has to. I’m kind of wondering what good is the ADA when you get such a separate experience? Why are we even paying the same prices?
You know what? They didn’t even have curb cuts because they didn’t have raised sidewalks! They had spaces between the sidewalks and the paths for people who use wheels.
It’s like access upon access. Blew my mind.
On the Train Itself
Some of the trains came flush up to the platform. That is, there was no space or steps and you could just wheel right in.
Others did have a step – the longer distance express trains often had two steps. I kind of freaked out when I saw that because I wondered how on earth I was going to get that stroller up there in the 3 seconds I had (because the trains do not stop long: they are FAST).
Every. Single. Time. I got on a train, lovely, tall, gorgeous, sunny, friendly, Dutch people rushed over to offer to help. No kidding: every. single. time. So, every. single. time I had these people who looked like magazine models lifting up my battered double BOB and hoisting it into the train and smiling their sunny Dutch smiles at us all and saying things that sounded nice as they cheerfully walked away.
I can’t imagine this happening with wheelchair users (“can I help lift you up to the train?!”), and I also can’t imagine that the ever-practical and highly-resourceful Dutch just let wheelchair users not access trains after they pay attention to all that other access.
I’d like to know how this is handled: do you need to touch base with the information desk at the large stations to make sure the conductor has a portable ramp? Or do you just go to a certain train car where they unfurl a ramp? I wonder what happens.
Other Disability Access on Trains
There is captioning on the trains!!!
They have these little video monitors and it displays what the next station is. When I was in the stroller/wheelchair area on the inter-city express trains, I couldn’t see the display, so I just relied on looking out the window to see the station signs. They do announce the name of the station that is coming up next, so if you are blind, I wouldn’t think anything would be an issue.
Deaf and Disability in Holland
There was a lot I wanted to see and experience with regard to disability and deaf community in Holland. There’s this Deaf Club in Amsterdam I wanted to go to, this blind museum in Nijmegen, there are deaf boat tours in Amsterdam and other cool stuff. But it’ll have to wait until a little later.
The Dark Underbelly for Disability Access in Holland: Eugenics and Euthanasia
I haven’t read the book, so I can’t tell you more about it – I’m just linking it here in case you’d like to delve deeper into understanding this.
I did, however, read this fascinating Short History of Disability Approaches in the Netherlands. It seemed to me that a lot of the disability history and the disability rights developments in the Netherlands echo those of the US, but with greater success. They had the institutions, sheltered workshops, etc – and have moved out of them. They are apparently not united – it’s still separate disability groups in the Netherlands, each to their own cause.
The one thing that has really stuck in my head about all the eugenics and euthanasia in Holland is: it’s so weird to me that people with disabilities might be encouraged to kill themselves in Holland by way of being euthanized, but the quality of life for a person with a physical disability in Holland looks like it’s pretty accessible.
Is it like, “okay, we’ll encourage all the disabled people to kill themselves, but make sure they can really get out and participate in life until they do so”?
In the United States, it feels more like, “you’ll have a law to protect your rights as a person with a disability, but you’ll have to fight every step of the way for access to all public spaces, education and employment.”
The Netherlands is about the size of the American state of Maryland (and Maryland is a small state). I feel like making a direct comparison between the Netherlands and the Unites States doesn’t make sense because they are just too different, size-wise and politically.
In the here and the now, we can just learn. Take notes. See how we can all do things better.
It was written in the 80’s by Emily Perl Kinglsey (who was a writer at Sesame Street – you can thank her for a lot of the inclusion that went on there).
A lot of people hate the missive once they are over the shock or grief of having a child with Down syndrome, because in Welcome to Holland, she’s basically saying that we’ll always be sad about having a child who isn’t like what we signed up (to have a baby for), but we’ll find the good in it.
I thought of Welcome to Holland as our plane was approaching the actual country of Holland.
Windmills in the water.
My resourceful-nerd heart beat a little faster when I saw those windmills in the water.
WOW. A country that utilizes clean energy, and has wind farms in the ocean?!
The view from the plane was stunning.
Water, canals, green, carefully cultivated land.
We landed and right off the bat, I was blown away by how tall and handsome all the men seemed to be.
THIS IS WHERE THEY ARE!!
Yes, it seems like everyone in the Netherlands is tall, good looking and wears sensible shoes.
Even the airport bathrooms were beautiful – long, strong doors that closed for full privacy, wonderful automation and sparkling clean.
Micah said the airport reminded him of a cross between a mall and IKEA.
I thought that kind of nailed it.
So, we mosied over to our Air B n’B from the airport – it was in this little village called Bunnik that is outside of Utrecht (which is half an hour from Amsterdam).
You may be surprised by my choice of Bunnik… I know I was!
I had been looking at places at Amsterdam to hang out while my mom was at the Virtues Conference that was to be held in a forest about an hour and a half away from Amsterdam. Amsterdam just seemed too… too much. A Dutch friend of mine in Hilo recommended Utrecht (where he’s from!) and so that’s what I did.
I actually thought that Bunnik was a street in Utrecht, not a village outside of it. Ha!
Hey Bunnik. You sure are cute.
This wasn’t one of those places that’s set up like a hotel: this was the actual home of a Dutch family.
Our host was this laid-back guy who had Buddhist stuff all over the house and invitations to meditate with books by Herman Hesse.
It was really beautiful.
Lil’ Bunnik was too.
It’s impossible not to catch on pretty fast that bikes are important to the Dutch.
This place is a veritable bike heaven!
Can’t get better than this!
Bikes everywhere, every kind. You name it, if it’s a bike and it’s awesome, it’s here.
The whole infrastructure seems to be built around bikes too. It’s all totally flat, with bike lanes, pedestrian lanes and a tiny lane for cars.
I love that cars get the worst deal here. I mean, this place is built for PEOPLE.
We wandered into a park and played.
I started talking to another mom at the playground.
A super nice (really tall! gorgeous!) young mom and asked her if it was always this way, or if they had some kind of revolution and made their country so accessible and bike-friendly?
She said it had always been that way for her.
I wonder what it be like to grow up in a country that values people first?
How would that feel, to have our health and well-being, our access, our enjoyment, our pleasure, our education, our comfort to be valued above corporate profit and cars?
I looked around that little village of Bunnik, so full of happy, healthy, vibrant elders on their bikes, these happy, healthy, vibrant young families and happy, healthy disabled people running around in their wheelchairs and scooters, and I just marveled at what they’ve accomplished here, and felt sad about where we are in America.
I see what it could be like.
And it’s NICE.
We went to the local cemetery that first day too – I just happened to pass by and I asked a guy outside what it was (everyone in the Netherlands seems to speak excellent English). He said, “cemetery – you are welcome to go in and see.”
So we did, and we offered a prayer to my brother Dana, and to our ancestors, who while not Dutch, were all from around here, and it felt right and good to pray.
Back to Welcome to Holland
When Emily Perl Kingsley wrote “Welcome to Holland,” she was trying to say that having a child with Down syndrome could be a good thing, like Holland could be a good thing even though you really had wanted to go to Italy.
I think Italy sounds cool, but I am frankly enamored with a country that values people to the extent that Holland does.
I love the Dutch practicality, resourcefulness. I love their aesthetics, the flowers everywhere, the deliciously healthy food that’s so readily available.
I think when we say “Welcome to Holland” in the Down syndrome community, it should mean, “welcome to an appreciation of access and inclusion – you’ll never look at the world in the same way once you have a child with Down syndrome, or a disability.”
I think when we experience disability, we are experiencing a unique way of living in this world.
Travel is also a way of experiencing unique ways of living in this world.
Travel expands the way we imagine possibilities, learn how other people structure their worlds, and see how the potential, the possibility.
And with that in mind, I think Holland is the perfect country for both: for understanding and appreciating an entirely different way of living, with a practical, humane way of living.
First of all, let me jump and down and squeeeeeeeel:
we are going to Europe!!
we are going to Europe!!
we are going to Europe!!
Here are the nuts and bolts:
My mom is taking the kids and I on a Heritage Tour: we’re going to go to all of the places where her family is originally from. That means Ireland, Scotland, Sweden, Germany. Those countries are the heart of the trip, but we do want to visit some other places (I’m looking at you, Budapest!).
We’ll be starting off in Amsterdam on May 29th and we’ll have until July 5th to explore and connect.
Do you live in the Netherlands, Ireland, Scotland, Sweden, Germany or someplace else in Europe? I’d love to hear your recommendations on kid (and budget) friendly ways to enjoy our stay. We’d love to connect with community (Down syndrome, deaf, disability and Baha’i). We prefer more rural areas (but not creepy scary rural with total isolation, obviously).
We already have global Eurail passes!
This is fantastic because the kids are freeeeee (Micah’s close to the cut off age, so we were glad to slip in).
We’re diving into the guidebooks, app, websites and planners now, and trying to figure out all kinds of things.
Disclosure: There are some affiliate links below – if you buy something using them, it helps me pay for this site but costs you nothing extra. Thanks for your support!
How to Travel With a Child With Down Syndrome
I’ve seen a lot of questions about traveling with a child with Down syndrome on Down syndrome parent forums. Questions like, “our child has Down syndrome; does this mean that our traveling days are over?” “she has Down syndrome! Is Hawaii still an option?” “We were planning on Europe next year, but since he has Down syndrome, I guess not…?”
People seem to think that all of their dreams need to be tossed if their child has Down syndrome (and I don’t know why I’m talking about this like it’s everyone except me, because before I had Moxie and got to know her, I did too!). Of course, that’s pretty ridiculous to me now, almost 8 years into raising her.
A kid with Down syndrome is just that: a kid with Down syndrome. No more, no less.
Like all kids, a child with Down syndrome has the potential to totally bend your world.. or not. Depends on you, really.
I Travel with My Daughter with Down Syndrome!
I’m a single mom and I’m a third culture kid – I was raised outside the United States. Traveling is in my blood, and I always find a way to make it happen.
I first started traveling with Moxie, my daughter with Down syndrome, when she was a baby. We travelled by plane and bus in Mexico.
Our next trip was again to Mexico, only this time, we were driving there from California and camping on the beaches.
We went back and forth to Mexico like that until we left to travel the Pan-American highway in search of our “forever home” in which we could also build an Inn that would be working on hospitality (farm-to-table) training and more for people with disabilities.
Well, that plan was aborted after my brother Dana bought a farm on the Lost Coast of California. We hightailed it back north from Mexico and Moxie has been raised off the grid in an extremely small, extremely rural community.
Things To Consider While Traveling with a Child with Down Syndrome
When I said that ‘your kid with Down syndrome is just that:a kid with Down syndrome‘ I said the words “Down syndrome.”
Down syndrome can be an enormous deal or not, that’s your call really, but it is something. It is a syndrome. It does affect your child, and that does affect things like travel.
How exactly it affects each person who has that extra chromosome is different, but some similarities that affect travel seem to be:
bolting (that is, running and not stopping when called back)
flop and drop (dropping and refusing to budge)
food preferences (like any child, but maybe more?)
communication issues (difficult speaking/signing)
Some people with Down syndrome also have weaker immune systems, but that has not been our experience, so I will stick with what I know for sure to be true in traveling and free-range living with our daughter.
In talking about some of the issues we’ve faced in traveling with a child with Down Ssndrome, I’m going to work through each point I listed above:
Hands down, this is the biggest issue. It’s scary, because as only another parent of a child with a disability that includes bolting knows, your child just tears off at lightening speed and you often aren’t even aware of it until they are out of sight.
Carriers are what I needed when we were traveling hard-to-access areas or areas in which there were a lot of people.
First I used the ubiquitous “animal harness” leash – the one with the stuffed animal on her back, with a clip to a leash.
When she was around 4 years old, she was capable of breaking out of the clip, and as we were in Mexico at the time, we stopped by a belt maker’s shop and had a leash custom made. It was a belt for her that attached to a sturdy leash for us. You can probably macgiver something similar for yourself.
I used the Guardian Angel tracker, which was fine. You could do this beeping thing to find out where you child was. It was a pain in the butt to keep on Moxie though; I was always trying to figure out how to attach it to her in a way she wouldn’t remove. I think these options look a lot better (especially the necklace):
I’ve used a ton of different brands and types of strollers, and in the end, I won’t recommend anything for travel except the BOB (and the City Select Double, if you are going on urban adventures and have more than one child to put in the stroller).
BOB Revolution: Get the single if you have one child, double for two. Moxie is 7 years old and I still use it, and plan to until she’s 10 years old, or stops bolting, whichever comes first.
For us travelers, the stroller has an additional feature that’s worth it’s weight in gold: gate check on flights. That means that you can carry the kids (and the bags) on the stroller right to the airplane gate, and when you disembark, the stroller is there, waiting for you.
2. Flop and Drop
Techniques for dealing with this are discussed in the Supporting Positive Behaviors. What we’ve done until now though is simply pick her up and put her in the stroller.
3. Food Preferences
This is a big deal if you are with a child who simply refuses to eat certain things. My first born (Micah) is a major foodie; everything is fun for him. Moxie looks up to Micah, so that’s a win for us. She will however, sometimes refuse to try something.
I work with what I can – keep her food divided for her, give her the rice or noodles she craves. She likes choices, so things work better for me if I say, for example, do you want SPICY grasshoppers or NOT SPICY grasshoppers?
I also do a lot of “first, then” – like, “FIRST you eat this, THEN you eat this.”
Since she learns best by following my example, I also happily and with gusto dive into anything I really want her try and eat. Competition can also work with her, “who is going to try this tasty food FIRST? Moxie or Mack?!”
4. Communication Issues
Moxie’s almost 8 years old and has recently had a verbal explosion. She’s speaking quite a lot now. But prior to this, I’ve had to rely on ASL, her nonverbal communication (expression, gestures, etc), intuition and so forth.
It hasn’t been easy.
When we travel, I do have her devices stocked with her favorite shows and apps to try and prevent her being upset over being bored or what-have-you. I also have her headphones, so it doesn’t get too loud for others (she loves blasting Shimmer and Shine!).
Moxie's an awesome traveler
My experience in traveling with a child with Down syndrome has been great. My daughter is a first rate traveler. Still there are thinks I take precaution in doing.
I make sure I sit next to her at all times. I keep her occupied on the plane if I want to prevent her from running down the aisles and taking joy-rides to the bathrooms (which she loves on account of how entertaining they are!). I also make sure I have a handle on her bolting, and that she’s in eye shot of me at all times.
She’s fun to travel with: she’s energetic, curious, lively, and friendly. I love experiencing the world with her and her brothers, and get a kick out of her perspectives (check out some of her photography here).
I learn more about her and her strengths while traveling (I never thought she’d be so good at boogie boarding, for example), and she learns more about the world.
My advice is: if you are a traveler, DON’T STOP traveling just because you have a kid with Down syndrome.
Traveling with a child with Down syndrome does not fundamentally change the experience of traveling itself – it just changes aspect of preparation.
Maybe you can hold off on traveling if you’ve never been into it, but by all means, don’t stop just because of an extra chromosome. Just take a few extra precautions like I’ve mentioned in this post, and go for it!
It’s good to see people with disabilities doing something out of the ordinary.
Good to see children with disabilities traveling and exploring the world.
Good to see parents with disabilities being parents, good to see pictures and read stories that are about humor, power, understanding and connecting.
We need those stories, all of ’em.
Our family is leaving soon
Last year we left everything and went in search of a place to start an Inn that would also be an employment training ground for people with disabilities. That dream has not been chucked, by the way. It is still there, but I think what has happened is serendipity came calling and we answered. We lost money, we had to do something and my brother bought this land and needed help. It was win-win for all of us, but for our family of 5, finding the Lost Coast was finding a part of our hearts.
We absolutely love it. Big love, huge love. I don’t know how the future is going to unfold but I know that while I yearn for warm water to swim in and coconut trees, I can’t really see us living anywhere besides the Lost Coast. But we are not in a position to think about an Inn here on the Lost Coast for a while. It’s not just about buying land; it’s about the whole ball of wax. Our place isn’t even finished. We literally just can’t stay through the winter here because it would be more discomfort than we are prepared for. Endless freezing rain with an outdoor shower, outdoor laundry system, outhouse and mud doesn’t do it for anyone except a masochist. Even the electricity isn’t set up to work in the rain.
Living on the Lost Coast year-round and the Inn are going to come in time. These things will unfold.
In the meantime, we are going to travel! And we are going to put our trip out there with an intent to promote disability acceptance – from California to Mexico for sure, hopefully beyond to Nicaragua.
We are doing things different this year since we know we are returning to the Lost Coast to farm again.
We are not aiming to drive the whole Pan American Highway. Argentina is not our goal. Rather, stopping and connecting with disability-related organizations, friends of friends, communities and so forth will be our goal. Of course roadschooling will be woven in.
We are taking a different route this time. We’ll be going through Utah and Arizona, entering Mexico via Arizona.
I don’t want to call this trip something about “disability awareness”; oh no. This goes beyond awareness, right? To acceptance. So I want this trip to be Beyond Awareness: The Disability Acceptance Tour
The naming of the trip
I struggled with naming it – does it even need a name? Yes, it needs a name, and it needs a name because I want to write about it and I want something easy to refer to.
I struggled with catchy names, fun names – shouldn’t it be something cool? Yes, it does (and it should) but I’m too much of a nerd to think of something hip. I think I just need easy and straightforward at this point in my life. Calling it exactly what it is makes sense to me.
I struggled with putting ourselves out there – who do I think I am to think that we ourselves can be inspirational, and not the smarmy, gob-smacked sort of ‘inspirational’, but the kind of ‘inspirational’ that makes you reach within yourself to change, the kind of ‘inspirational’ that makes you believe you can try, do, act or feel in a new way, that creates within you a desire for something and shows you how you can do it.
THAT kind of ‘inspirational’.
The good kind.
Well, the ‘who do you think you are?’ voices in my head are alive and well. I try not to listen to them; I try to redirect those toxic thoughts: Who am I NOT to try? How is my playing small going to help dreamers with disabilities out there who want to travel, marry, have kids, farm, write, make t-shirts and be frustrated by the 5 million things that frustrate me?!
I struggled with intent – I tend to make things harder than they need to be. My motto for the past year – the one that I want tattooed on my wrist – is ‘THINGS CAN BE EASY”. So the disability-related part of this trip is simple:
connect with people with disabilities
show through our travels that people with disabilities can, do and should travel
spotlight access, showcase equal opportunity, rights and privileges
share projects by and for disability with those we meet – the Section 504 video from DREDF is key
share my service dog, Kianna – show what a hearing dog can do, the benefits of assistance
I need your introductions
I need your help: your connections, your advice. I need you to introduce me to that friend of yours who works in the CIL in Arizona, or who is a native American with a disability on the Navajo reservation. I need you to send me the email address of your contact at the CRIT center in Mexico, or your best friend’s Auntie in Oaxaca who is deaf and works at a deaf school.
If you know of a good route, a great place to camp, tell me! Please! We’ll be relying on the internet, our guidebooks, friends of friends and good ole’ google. A personal connection is always the best; I’d really appreciate yours.
Back to the beginning: we are leaving soon.
It’s good to see people with disabilities doing something out of the ordinary. Good to see children with disabilities traveling and exploring the world. Good to see parents with disabilities being parents, good to see pictures and read stories that are about humor, power, understanding and connecting rather than the more-typical stories of pity, “overcoming” and so forth.
It’s good to see variety.
We’ll be putting this trip out there with an intent to promote disability acceptance – from California to Mexico for sure, hopefully beyond to Nicaragua.
Your help in introductions and connections to people you know with disabilities or who work with disability would be enormously appreciated.
The countdown for leaving is ON!
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Mikey and I decided to introduce the children to that great American classic, “The Coneheads“. Okay, that kind of came out like a pre-thought thing – it was more like he was surfing movies with Micah, they started watching it and I caught wind of it and was all, “WAAAAAIT!!! I LOVE THE CONEHEADS!!!” – I dropped the work I was doing like a hot tamale burning my fingers and ran on over to the living room.
I love me some Coneheads.
Anyway, I was thinking about it: why aren’t we more like this with anyone that is unusual to us? Like, with people with disabilities, with foreigners, with eccentric artist types? The Coneheads were so glaringly different from their neighbours and everyone around them, but did you see anyone say, ‘you can’t work here because your head looks waaaaaaaaaaaaaaaaaaaaay different from mine?‘ or ‘you really talk differently from me, you need to go and get trained to be just like ME‘ – no, right? I mean, that’s one of the funny things about the movie – that the Coneheads just say they are from France and noone even raises an eyebrow.
So I’m just wondering why we don’t do that with one another in real life.
Because the Coneheads weren’t pushed into some stupid box and because they were who they were, everyone benefited. The workforce got a great worker, the community got a great family, the neighbours got a neighbour who could suck scum off of the parts of their mowing machine! Win-win!
If we quit pushing everyone around and shoving people who are unusual to us into a society mold of “normal”, if we just learned to appreciate and celebrate difference, we too could get people in our lives who would enrich it in ways we can’t even imagine.
I’d like to be able to just let my kids roam freely. But my daughter Moxie figured out a way to escape recently. She took her brother’s stool, put it under the door, unlocked the slide lock turned the handle, walked down the flight of stairs and slipped under the gate to go and wander the street.
After that I heart attack, I wrote this post, you all came through and gave me a ton of helpful links and suggestions. I coupled those up with the few things I have found to be successful in keeping my children safer.
Bolting or running away is evidently very common with kids with Down syndrome. This list is probably handy even if your kid doesn’t have Down syndrome or a disability; many of these I’ll be using (or have used) with my typically-developing sons (aged 5 years and 6 months).
Here are the tips:
1. GPS tracking device.
I really like this option, personally. There are a lot of variations on the same theme – attach something to your child and an alarm will blare when they have gone beyond a set distance from you.
SOS Button: Be notified immediately if your child needs help. If your child is in a dangerous or threatening situation, or has a medical emergency, he/she can press the SOS button. The device will then send an “SOS” email and/or text with your child’s location to you and those trusted individuals you designate to receive SOS Alerts.
2 Way Voice: Speak directly to your child anytime – or have them call you. Simply call the device to listen in to the surroundings of your child and be assured that they are okay. By pressing the voice button, your child can call you so that you can listen in.
Customized Zones: Want to know when your child arrives or leaves school, home or soccer practice? With the Amber Alert GPS device, you define a virtual boundary or zone around anywhere you choose. You then receive an alert, via email and/or text, when your child enters or exits a zone.
Predator Alerts: Amber Alert GPS is synced with the National Sex Offender Registry and updated every 24 hours. With the Amber Alert GPS device, you are notified when your child or teen gets within 500 feet of a registered sex offenders residence.
Additional Features include: Locate Via Computer & App, Breadcrumbing, Speed Alert, and Low Battery Alert.
NOTE: there is some kind of promotion going on now with Amber Alert – free device with signing up for 3 year contract ($14.99/month)
AmberAlert seems like a pricey but good way to go – they ranked #3 for Best GPS Tracker (here’s the review).
ADDITIONAL NOTE: check in with your local Sheriff’s Office and/or County Office: word is that some offices have Amber Alert/GPS device programs for kids. I’m currently in the process of checking with mine, so I don’t have any advice yet for local friends.
I’m still looking for something like this that is a better fit for Moxie.
2. ID Bracelets:
According to the Police, only phone numbers, not names should be listed. This makes sense, but it does put families like us at a quandry. I suppose since we will have different phone numbers at each country along the PanAm, we will just need to make a new ID bracelet for Moxie (and it won’t hurt to make one for the boys too) at each country.
a. The Ankle ID: I liked this one a lot . It’s great because it goes on the ankle and looks like it will pack a lot of information on that little plate.
b. Jewelry-type ID Bracelets: personally, these seem like a way to go with someone like Moxie. She likes that kind of thing and as long as it fits and the metal doesn’t make her skin react, it seems like a great long-term option.
NOTE: Maybe I’m totally off here but those velcro bracelet options just seem dumb. Kids will open those suckers up in two seconds.
3. Sound Alerts:
a. Door Alarms: A lot of people seem to use these. It’s simple: the alarm goes off when the door is opened. You can program them and get them to stop/go. They are inexpensive and seem to be easy to install. For other deaf folk, I’m pretty sure there is a flashing lights version – check with your local Deaf resource center (Bay Area folk, that’s DCARA)
b. Squeaker shoes: This is something really simple, but if you can hear the high pitch from the squeak and if your child is wearing these, you’ll be able to have an idea of where your child is. We bought Moxie’s squeaker boots from zulily.com – zulily has great quality shoes (featured nearly daily) for around $20 that have removable squeakers.
c. Jingly jewelry: I personally like this option for my child as – like the squeaker shoes – it meshes easily with what she likes and finds attractive, and with my hearing aids on, I can hear them. They are like cute cowbells, I guess. But whatever. It works. I know where she is and that’s what counts.
For the truly savvy kid (read: YOUR KID), gates aren’t likely to be anything more than a hurdle. It’s going to slow them down but not stop them. Still, when you are dealing with kids as fast as ours, a hurdle is still a desirable thing, right? There are a ton of gates out there, here are 3 types that caught my eye as they seem travel-ready or come highly recommended:
a. Extra Tall Gates: My friend sent me this link to some gates that she said were great with her child. They look super.
b. Tension Mounted Anywhere Gates: These are what I went for as I need to have something that we can bring with us. I need portable, something that doesn’t need to be installed with a screwdriver.
c. Driveway Safety Net: This is great because while they will NOT stop our kids from going, they serve as a bright visual reminder of how far to go. Easy to install, portable. These are definitely going with us on the Pan Am.
Deadbolts: This seemed really extreme to me until Moxie, my just-turned 3 year old daughter, figured out how work the slide lock on the back door – yeah, the one she had to drag a stool to and still reach up to finagle.
If you have a child with a propensity to escape, GET ONE NOW.
There are hundreds out there to choose from; this is just one that came recommended by a friend.
5. While Out: Simple Solutions
a. Monkey on Their Backs: Harnesses: I know, I know. Putting putting what is in essence a leash on your kid isn’t attractive and makes you feel like the crunchy Berkeley parents are going to spit on you and call CPS. But what’s better – that or calling the Police yourself because your kid ran too fast through legs in a crowd and you lost her?
NOTE: I only got Moxie to wear this after a lot of effort. Wearing it around the house, having her big brother (and superstar) wearing it to help out (= make it desirable).
b. High-Visibility Clothes. Like a neon-pink vest or neon-green shirts. If you have more than one child, getting them to wear the same colour would be a good idea – then you just have to keep your eye on the kids in green or pink or yellow or whatever.
– Did I miss anything? Please tell me in the comments what works for you that I left out here – thanks!
When we were up in Humboldt last week, we all went for a walk in the Lady Bird Johnson Grove. This is a great little trail to walk with kids – it’s also completely accessible (wheelchair and stroller friendly; lots of benches niftily perked throughout for people that need breaks).
The thing about redwoods is that they make me feel both tiny and huge. Tiny because well, there is that fact that they are one of the biggest living organisms on earth. And they make me feel huge because deep thoughts slip into my head, thoughts on the nature of how interconnected all of us on our precious little blue ball really are.
The silence of the forest soothes.
Until, you know, Micah has had enough and pipes up, “are we done yet?”
I want to make this really simple. This post is about travel, poop and having a child with special needs.
Do yourself a favor and don't read it if you don't have kids. Mm'kay? Just head on down the list of posts and read something else that might make more sense for you.
One of the most common issues for kids with Down syndrome point blank is constipation. It's probably the most frequent question that pops up on all Down syndrome boards, spilling over into the general special needs community forums. Everyone has this issue with their kid(s), at one time or another. Everyone.
And then, when you travel, it's compounded. I don't know what it is, but something about a changed diet, a shift from routine? Whatever it is, not just my Moxie – who has Down syndrome – but typically developing Micah as well – have bowel issues.
I have long advocated for coconut oil, placed directly in food. It's easy, it tends to work well. Any oil, really, but pure, organic coconut oil or coconut butter worked really well for my child.
Probiotics are also magical. I feed my kids probiotic-rich yogurt nearly daily, but definitely a few times a week. It really helps.
But what to do when travelling? What do do when you are out on the road and can't find probiotic-rich yogurt, when it's just not feasible or possible to bring along the coconut butter?
This is what they are: a portable pill/powder (depending on your child's weight) that will help support digest and boosts overall digestive health and provides ongoing maintenance for a healthy digestive tract. In a nutshell: it helps your child poop well by releasing those priobiotics.
It's recommended by pediatriciants, trusted by parents.
For me, the main pieces were really that I knew that I had something with a solid reputation and track record on hand while travelling to keep the kids regular in lieu of their typical yogurt. Like I said, it's portable. It's super easy. You can just bring a box or two with you and that's that.
– Have you used Culturelle Kids? Did your little ones like it? (mine think it's candy…)
– What do you do to keep your child regular if you have problems? What's worked for you and yours?
Disclaimer: I was compensated for this post and provided with Culturelle samples. All opinions provided are my own. Of course. I'd never fake something like this, involving our kids.
Someone once said that to be truly happy in this life, you need to love, you need to be loved and you need to have something to look forward to. I don't know how true that it for you, but it's pretty spot-on for me. I find that I slip-slide into dark murky places my soul has no business lingering when one of those three is lacking. Most especially when all three were (as they were for most of my twenties).
But now, the golden trio are mine, in spades. I love. I am loved. And I look forward to biting into my big, juicy dreams.
These are the dreams:
I want to learn all I can about homesteading, actually be good at it. Know my soil ph and nitrogen when to plant the cool-weather crops and how to make hanging gardens and all that good stuff. Know how to raise my poultry, skin the rabbits. Have divine recipes up my sleeve for our fresh eggs and meat. Drum up wickedly yummalicous batches of cheese.
And I want to travel – I want us to have a truck and a trailer. The truck, I'm thinking a '94 or '95 Ford F150 XLT (4×4); the trailer, something suitably vintage, that we've happily tricked out to our hearts' delight. The point of the travel is to find a place to have our Inn – bed and breakfast – and also just for fun, explore this here land mass we stride upon. And by "land mass" I mean the Americas: north, south and central.
For the Inn – this is what I dream of: a large house that looks like the Cohen-Bray place in Oakland. With lots and lots of land surrounding it. Upon that land I'd like a kitchen garden and larger farm. A small barn for bicycles and bicycle maintenance classes. Another barn for our cow (s) and perhaps goat(s). A large chicken coop. Rabbits. Yet another barn for an art studio.
I want us to offer training for those with (developmental) disabilities in the hospitality industry, farming and/or bicycle maintenance. I want us to offer bicycle tours.
With the Inn, I don't want a lot of rooms – perhaps 5 – and I want each room to be completely unique, with a theme. I want our food to come primarily from our garden; the eggs, milk and cheese to be made by our own hands.
This dream, percolating for so long in my mind, my heart, simply gains clarity with time. Where I could only once just see bits and pieces of it, I can now see most of it – it's all neatly integrated, like a gorgeous puzzle that makes sense. This would be our place, a place for Moxie (should she need one), a business for our kids to have and hold if they choose. It would be a venture that would fully utilize the combined talents and passions of Mikey and myself. A place where our parents can come and live, be with us and grow old. Especially our mothers, Mikey's and mine.
I once wanted to have this Inn in South America: Peru or Bolivia. Now, I'm not sure. The pull of family is strong – I want nothing more sometimes than to be able to open my kitchen window and holler that I need me some flour (or something) and one of Dana and Toni's tribe will pop by, cup in hand. I want my kids to grow up rooted with family, knowing in a way I never did that they belong.
These are the bits that are not neatly arranged in the dream-puzzle yet. The where's. And the which-comes-first: the trip or the Inn. I don't put much energy to these questions, however, as I firmly believe in this new incarnation that if I follow what makes us most happy, it will all come together most nicely. It's useless to bend over backwards trying to answer questions that will answer themselves if they are just given some time.
I lay the pieces I know together, study them, enjoy the picture that is forming. I spend time trying to develop the skills that will help me form the next pieces.