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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.

She is raised pretty much free-range.

Since moving to the Lost Coast, we’ve traveled to Cambodia, Vietnam, Thailand, New York City, Oregon, Arizona and Hawaii in addition to more Mexico trips.

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 syndromeI 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:

  1. bolting (that is, running and not stopping when called back)
  2. flop and drop (dropping and refusing to budge)
  3. food preferences (like any child, but maybe more?)
  4. 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:

  1. Bolting

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.

It’s different from typically developing children running off, which is explained wonderfully in Supporting Positive Behavior in Children and Teens with Down Syndrome (which is the best book I ever read regarding issues I have with Moxie, well worth the money).

While the book explains bolting and gives great techniques for curbing it, I have long used carriers, leashes, child trackers and the stroller for Moxie.

Carriers:

I tried a lot of carriers, but I’m not going to waste time on anything other than what really worked for me:

Carriers are what I needed when we were traveling hard-to-access areas or areas in which there were a lot of people.

Leashes:

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.

Child Trackers:

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):

Strollers:

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.

Here’s the link to the BOB Revolution Dualie at Target; here it is for Amazon. Don’t forget the snack tray; it makes escaping difficult for the kids (sans seat belts), and it keeps things tidier for eating.

I need to be really clear: don’t mess with the jogger or Ironman or any other (cheaper) model of the BOB; there is a reason they are cheaper! They are not as maneuverable.

The BOB Revolution will do ANYTHING. Those bubbas can go way past the recommended 50 lb weight limits, have tires that are fit for bikes, suspension systems and frames of steel or something.

If you can’t afford it new, look at funding, or search Craigslist.

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?

traveling with a child with Down syndrome

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!

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Child Safety:

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.

a. The Guardian Angel for 4 Kid’s Tracker Child Children Locator Alarm Family Protection Security Babysitter has these little ladybug things that you can attach on each child – great for families like us that have more than one child and get out/travel  a lot.

(they also seem to come with just one ladybug, for families with a singleton)

 


b. The Amber Alert GPS Child Locator Tracking Device looks like it’s excellent.It’s fully tricked out:

  • 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.


c. The PGD PG66-G Real-time Silicone Gel GPS Tracking Watch Quad-band Watch 1.3″ TFT Touch Screen 1.3MPx Camera Security with SOS Function for Eldder/Kids/Criminal/Pet (Black) seems like a good deal for boys – I think it looks huge and would fall off of dainty little Moxie’s wrist. But it looks perfect for Micah. It’s $100 and it doesn’t seem to need a subscription service.

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)

shoes 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.

4. Barriers

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!

DSC_0654

 

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?”

IMG_0426 IMG_0430 IMG_0437 IMG_0444 IMG_0445 IMG_0448 IMG_0454 IMG_0457 IMG_0459 IMG_0469 IMG_0473 IMG_0479 IMG_0483 IMG_0495 IMG_0497

 

 

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Travel Australia: Travel.com.au

I’ve never been to Australia but hopefully one day I will make it down under. I want to go to Perth in particular because it’s uncanny how many cool people I’ve met from that great town.

Travel.com.au is a hop skippity site with lots of easy, accessible info on flights, including international and cheap ones. They go beyond the standard Qantas flights and info, hitting Singapore Airlines, Jetstar and more.

Travel.com.au: for all of your Australian-bound or away needs.

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.

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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?

Enter: Culturelle Kids!

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.

Share!

– 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?

 

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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.

 

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