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!
Traveling 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.