My husband, Jim, and I are
veterans. You see, we have served in a different kind of battle. We have survived traveling with a child
who has special needs. I guess you
could call it “combat training.”
The past several years have been a
“boot camp” experience towards enjoying a simple family vacation.
We are
just parents. We only have
six years of “field training.”
But, we feel like we have a lot to share with other parents. We want to encourage other
families to do like the Royal Caribbean advertisements taunt and “Get Out
There!”
We have
flown on airplanes, sailed on cruise ships, traveled on trains, rode on buses,
and enjoyed a few sailboat rides along the way. Each initial experience began with meltdowns, tantrums, and
other behavioral issues. We have
had our share of being criticized by on lookers. We have been asked to leave places and have been confronted
by airport security. You could
say, we have “been there and done it all!”
We have
worked to overcome many issues.
The most challenging for our son, in relation to travel, has been
Sensory Integration Dysfunction (SID). It is not just another “diagnosis of the day”, but a road block for many children in the spectrum of autism and
related disabilities. It also can
be a challenge for many typically developing children, too.
People
with Sensory Integration Dysfunction (SID) have great difficulty figuring out
what is going on inside and outside of their bodies. There's no guarantee that the sensory information they're
working with is accurate. In response, a child may avoid confusing or
distressing sensations.
Given this
information, the idea of planning a family vacation can be a challenge. What may be a simple experience for
others can become sensory overload for a child with special needs and result in
the day being ruined by something as simple as a fire drill. The reality is that you cannot control
every situation like a fire drill.
However, here are a few tips from our battles to help our son thrive:
1. Phone
First:
In this world
of Internet information there is still no replacement for talking to a human
being. Call the travel provider
and find out how they can accommodate your child’s special needs. Most airlines,
cruise ships, and theme parks have programs to accommodate children with
special needs. Find out what
they have to offer and how they can make your family’s vacation relaxed and
memorable.
2. Squirrel
Away Snacks - Find Out What You Can Take With You:
Children
often have a hard time waiting or do not like the food options that are
available. We have avoided many melt downs by having food with us. A simple peanut butter “Jiff on the Go” has saved us from
behavior nightmares. Find out
ahead of time what you can take with you on the plane or on board a ship.
Our son
relied heavily on a nutritional supplement called, “Pediasure.” Back to point one: we found out that we
needed a doctor’s note to bring it on board a cruise ship. If I had not called ahead, I would have
never known, and our vacation would have been ruined.
3. Study the
Route:
This is
critical, if you are traveling alone.
Study the route and plan your stops to meet your child’s needs, as well
as, your own. Many children with
SID challenges cannot sit for long periods of time and need a break. Plan these into your travel route.
When our
son was a baby, he required oxygen and a monitor. I will never forget the first time I stopped at a fast food
restaurant to use the bathroom. I could not roll the stroller into the stall. I will spare you the details of how I
overcame this, but I will tell you that I now know every clean family bathroom
from Vero Beach to Nemours Clinic in Orlando.
4. Make Plans
for Obtaining a Passport:
If a
passport is needed, you will need to plan ahead. Just getting the passport photo can be an obstacle. I recommend calling ahead to determine
the best time to have the photo taken.
You will minimize waiting.
We also learned that t-shirts with writing cannot
be worn in passport photos. It was
complete mutiny when we had to reverse Wyatt’s shirt for the photo.
Calling
ahead also applies for turning in your application. I called the local passport office at the Clerk of Courts to
explain my son’s challenges and asked when was the best time for my husband and
I to stop by with our son to submit the application. The staff was incredibly kind and accommodating. They recommended a time that was
their least busy time of day.
Last, but not least, be sure to allow time for the passport to be processed before your scheduled trip. To learn more about applying for a pass port visit:http://travel.state.gov/passport/get/minors/minors_834.html
5. Anticipate
Road Blocks :
Many
children with SID challenges have issues with loud noises. Try ear phones
or an iPod. They can provide
calming music or familiar noises to distract your child. We carried around a large head phone set for several years. They helped our son overcome his fear of going into the
school cafeteria. Work these
strategies into points six and seven.
6. Create a
Visual Map
Schedule or Story Board for Your Child:
We have
done this with index cards, calendars and by creating a visual schedule with
pictures. It is an invaluable tool
to setting expectations, managing behaviors, and talking your child through
meltdowns. Involve your child in
the production of the format you choose.
7. Utilize
Pretend Play to Prepare your Child:
Role playing is a great way to review the visual schedule you
have created. We were stressed
about an upcoming flight. Wyatt
was too old to sit on our laps. We
were very worried he would not sit in his seat on the plane. We decided that we should use his car
seat, since it would be a familiar restraint. We practiced by playing “airplane.” Mommy was the stewardess, Daddy was the
pilot, and Wyatt was our passenger.
We thought our plan was pure genius until we got ready to board, and
were asked if our seat was approved by the Federal Aviation
Administration. Please note
that the FAA does not require all children to use a child restraint system
(CRS). Visit the FAA website for
additional information: www.faa.gov
8. Be Super
Mom – Bring Along a Change of Clothing:
Our son
had a lot of oral sensory issues in the past. Sometimes it is referred to as being “oral defensive.” Although we have finally put much of
this behind us, I must say I wear a badge of honor. I think I have been puked on in every travel situation. Try to find the humor in the situation. It will calm you and your child. Once, I pulled off my t-shirt in a
parking lot, out of frustration.
To my astonishment, an old man was watching my quick change. I just have two things to say. My bra gave me complete coverage, and I
would like to think I made that old man’s day!
9. Get Ready
to “Roll with it”:
You have
to be ready to expect that something will not go as planned. It’s a given! When we went to board the plane, as mentioned above in point
five, I was asked by the stewardess if the seat was approved by the FAA? I had to think fast because I didn’t
know. I smiled, confidently and
proclaimed, “Yes, of course!”, and added, “look, it
says so right here!” The stewardess, who must have been as farsighted as I am
said, “She’s right!” We later
turned the car seat over; it was NOT approved by the FAA! I am not suggesting lying. I am only saying that you have the
power to redirect people as needed for the sake of your child.
10. Know Your
Rights:
Be careful
if you buy tickets to see “Dora Live” or some other event that may push your
child into sensory overload. Find
out if you can get a refund or what special accommodations they are willing to
make for you. The same is true of
travel or theme park providers.
Most of them will make special accommodations. Visit: www.specialneeds.about.com for more
resources and links.
11. Most
People are Incredibly Kind (overlook the 10%ers!)
I think it
is human nature for us to focus on the one person who made a rude comment or
offered unsolicited parenting advice.
I call these folks “ten per centers.” We have been amazed at how helpful complete strangers have
been in helping to calm or to entertain our child.
12. Don’t Get
Discouraged (even if you lose money!)
It’s very
upsetting when you have purchased tickets to a live production and you can’t
even get your child into the theater or because you can’t get them to wear a
life jacket for a boat ride.
Accept it as an investment in working towards overcoming their sensory
issues. Sometimes you can ride it
out until your child decides it’s not that bad. But sometimes, you just have to realize you have work to do
and will try again another day.
13. Celebrate
your Success and Encourage Others!
Relish
those milestones when you finally can enter a movie theater or when you can
survive a boat drill on a cruise without a meltdown. Most of all, reflect on what tips you can share to encourage
others. Passing it on to help
others is the greatest gift you can give.
We end with our 13th point because only you have the power to
turn any situation into a blessing filled with good luck!
For more information about Sensory Integration Dysfunction visit the following website: Come Unity: http://www.comeunity.com/disability/sensory_integration/