I’m afraid of going on vacation with my kids who have special needs …

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I’m afraid of going on vacation with my kids who have special needs …

But we are doing it anyway.

In a couple of weeks, we are taking the kids to Maryland for their spring break from school.

I’m afraid.

It is a 14 hour drive. Four kids, one old, plain Dodge Caravan that is starting to fall apart, and two parents who no doubt will be white knuckling it the whole trip.

A friend of my husband’s is giving us his house for a week on the ocean. Nice, right?

So why am I so afraid?

Vacationing with kids with special needs

Two of my daughters have Down syndrome. Polly doesn’t like loud noises. Evangeline struggles in restaurants. Both girls have aversions to certain food textures so eating out is tricky. Polly is a routine girl. If Evangeline is in a crowd too long, she will go into sensory overload which includes rocking violently back and forth, crying, and possibly hitting her head on any hard surface she can find.

Honestly? It’s much easier to just stay home; a place that is familiar to my girls. A place where the routine is down pat, their needs are met, and where I can attempt to control their surroundings.

But that’s no way to live

I have to fight the urge to keep my little girls close and box ourselves into a predictable little world.

Kennedy said ‘Conformity is the jailer of freedom and the enemy of growth.’

The only way for our family to enjoy outings and vacations and trips to restaurants is to well, do them. It’s not fun at first. It’s terribly difficult work. We go out to eat, and by the time everyone is putting on coats to leave I’m in an awful sweat. My hands are clammy, one of my four kids is probably crying while the other one is ticked about something inconsequential.

Ugh.

But we do it anyway.

Because all six of us: My husband Sergei, our daughter Elaina, Zoya, Polly, and Evangeline, and I all deserve full lives.

Not only do we deserve bigger, experienced lives, but it is the only way for us to grow, and to become better versions of ourselves.

Eventually, Evangeline will realize that restaurants aren’t scary places. I can buy some headphones for Polly to wear if we go someplace loud. If Evie gets overwhelmed I can take her outside for a walk to settle down. I can hold her in a tight embrace and point out all the things of the world we get to see by putting ourselves out there just a little bit.

Stepping out of our comfort zones is a good choice.

So we are going on vacation

So we go. We’ll pack up the car. Bring toys, games, and books for all the kids. Sergei will load his iPod with family favorite tunes, and I will take deep breaths, and ask God for safety, and light, and fun for all as we head into a new horizon.

This pep talk is helping me get into the right frame of mind … But I’m still not ready to talk about the 14 hour car ride.

Baby steps, right?

Have you gone on vacation with your kids with special needs? Any tips? I’m all ears.

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10 comments found

gracesgrist says:

March 5, 2013 at 3:07 pm

ok! you will do well…this fear is the beginning of preparation for the trip. you WILL do well… i have a few hints of flying alone with all 4 kids through FIVE airports in ONE day! (going to a cottage for FIVE weeks!) 🙂 we wrapped little gifts, snacks, coloring books (the girls loved those) in sturdy wall paper, and numbered the packages. each kid got a backpack full of presents! when things were looking hairy, i looked at my master list, and would call out a number, all the kids (J needed help) would find their gift (number practice) and open their ‘gift’. sometimes we had to do 3 gifts in 5 minutes, and other times it was 1 gift per hour. i believe the anticipation of not knowing what was next, the knowledge of more surprises ahead, and knowing that mom was thinking about them, made a big difference. hints: go to the dollar store, some of the gifts were hair ties, boxes of raisins, small dolls (i think it was polly pocket days then), a necklace, nail polish (yep those were handled while at the cottage for ‘makeover days’), for J there was a ‘book’ made of plastic baggies with pictures of himself in them (ah, how has technology changed since then), and postcards with stamps on them, addressed to their friends back home, so all they had to do was ‘write’ (more often draw) a letter to their friends. these gifts lasted the whole vacation, and many made it onto the multiple airport hopping trip home. hope this helps a bit…. grace

lespriing says:

March 5, 2013 at 3:11 pm

LOL I took three with Down syndrome by myself to the NDSC conference in DC last year…and we DROVE! Doing it again this year, with four…that is assuming my 4th one travels well since I haven’t met him yet. Going to the conference in Denver. Yes, I’m that crazy. LOL My 4th better be a good traveler or I’m screwed. LOL Oh I got this cool thing for in the van!! Download movies to the iPad, then there are two screens to connect to the iPad. You now have THREE screens in the van. Awesomeness. Of course, I spent the money on it and none of them watched movies the whole trip, but it was good in theory.

Lisa says:

March 5, 2013 at 3:13 pm

One more idea, and not sure if it’s even feasible for you guys…but we often do 1 night away at a local hotel that has a pool. We have a really nice Westin Hotel attached to a big mall with a movie theater. It’s a short trip, but gives the experience of true travel. Even if you can’t do it prior to this trip….maybe something to try in the future. Book a night away with the kids. You can get a mini vac experience and expose the kids to new surroundings without the stress and expense of a full fledged vac. Once they get comfortable and you feel everyone travels ok…you can get out there more often.

Lisa says:

March 5, 2013 at 3:14 pm

With a family the size of ours, the only vacations we can manage are road trips. The last one we went on was summer of 2011, and we drove up the coast of California and rented a house in a small beach community. And the day before we left, Finn broke his foot. So not only were we dealing with a three-year old with Down syndrome, but a three-year old with Down syndrome with his foot and lower leg in a splint. I really don’t even remember particulars about the trip except that the drive up took about twice as long as we thought it would, and Finn was pretty out of sorts for a lot of the time we were away. But I’m still glad we did it. You’re so right – it’s so much easier to just stay home where everything is familiar and routine. But sometimes we have to make ourselves just get out. For us and for our kids, including the kids with special needs.

Tamara says:

March 5, 2013 at 3:15 pm

I’m lucky to have a kid who’s an easy traveler. Give him something to watch movies on, and he’ll ride for hours. He also loves restaurants and will try new foods – tried alligator a couple years ago when we were in Arkansas … I think it was alligator … He does fine on planes or in cars. We generally camp, so the biggest challenge we really have is keeping an eye on him when he decides to quietly take off on his own …

Abby says:

March 5, 2013 at 3:17 pm

You are already doing it! I have found staying in a house instead of a hotel makes all the difference. I tend to overprepare and meal prep before we go. We will still eat out some, but I prep freezer meals that we can use on nights everyone is just too tired to face a restaurant. If you freeze them prior to the drive and pack in a cooler they should make it. I also tend to cook right away when we get there lots of things like breakfast casseroles and snackie things. Then, I can relax too. Also, for a long trip using some Dramamine to make sure everyone’s tummy stays okay can calm everyone down a bit too. 🙂

truthseeker says:

March 5, 2013 at 3:26 pm

I just want you to know that though I have 7 children, and have been through many of the same emotions as you, I don’t have any special needs children to tack on to the journey. So many things like this are difficult and it is tempting to just stay home and do the daily. But, as you are so eloquently saying, joy and life happens in more than just doing the regular thing! You are courageous. You are creative. You are compassionate. You are inspirational. May God grant you strength, ideas, supernatural peace and calm for you and your children. May He graciously put in your path people who will bless you by their help and input and also people who need to be blessed and instructed and who will get that from you and your family. Despite the difficulties, may this be a vacation that you will remember wiith great joy.

Kathleen says:

March 5, 2013 at 3:31 pm

Umm, I’m like you. I dread it and so we don’t do it unless absolutely necessary. I know I should try harder, but the point of vacation is to relax and enjoy the time away and how can I enjoy it if I’m spending all my time helping my two with special needs cope.

Michelle says:

March 5, 2013 at 4:13 pm

I commented on Facebook but wanted to comment here too.
I, too, am a mom of four. My two youngest have special needs … my 7 year old daughter has Down syndrome and my 4 year old daughter has cerebral palsy (with, thankfully, no developmental issues). My two older children are “average” … 11 year old daughter and 10 year old son.
In November of 2011 we bit the bullet and planned a family trip to Disney. We drove. 22 hours in the van … whew! The majority of Disney overwhelmed our Downs babe … the noise and the crowds were too much for her and she spent much of her time turtled in our rented stroller with the canopy pulled down over her head. But, to hear her now, she LOVED Disney and everything about it. 🙂 And she really does have some special memories of that trip (especially the birthday cupcakes … lol).
More importantly, maybe, was the fact that it WAS an amazing trip for her siblings, one that they cherished and enjoyed … and deserved. It’s hard to step out of our comfort zone but so, so often more than worth it!

Mimi Birk says:

March 6, 2013 at 3:35 pm

I have two daughters with special needs. My 13 yo has Cri du chat syndrome and the lil one who is 6yo has autism. And as you have so elequently penned life is very unpredictable with special needs kids. I think the fear of the unknown is what the devil wants to use to paralyze us and keeps us held hostage!
Three years ago we bit the bullet and drove 12 hours south to Disney. 2 kids, 2 Grandmothers, 1 Mom and 1 Dad. All terrified that we had just spent a nice chunk of change for a week in pugatory! I laugh now at my crazy thoughts and pre-determination of how events would go because it turned out to be the BEST experience we have ever had as a family unit! So much so that we have returned 3 more times since then. I highly recommend stepping out of your comfort zone, seeing your life as just that- your life, embracing the “what is” as the “what is” and diving in head first. Hopefully like me you will be amazed at your experience and filled with hope for the future more able to tackle whatever trials come up along the way. After all…it is what it is…so make it memorable 🙂 Thanks so much for your thoughts and for blogging them.