Vacationing – can be a time of stress for parents with
children of special needs- as many of our kids are unhappy with change
Yet DH and I vacation and travel rather a lot !
We like going new places and we also think R’s horizons are
broadened because we travel so much
Here are some tips from me and from my friends based on many vacations we
have taken
Managing our own expectations
One of the true pleasures in parenting is seeing our child
experience joy.
However, we can forget that our kids have a unique way of looking at things – what we
imagine to be enjoyable to them, may not be.
I asked R the other day if he remembers where he was in
Christmas last year
“Doubletree hotel
!” he answered, a smile lighting up his face at the memory
What he did not say was that while we did stay at the Doubletree hotel- where we had spend the day was in
a place that is a dream destination for most children - Disneyworld’s Magic
Kingdom
I and DH smiled at this today
But on that day, I remembered that feeling of disappointment
when we had waited and waited to get in front of the crowds to watch the once-upon-a-time parade and our child
did not gasp with wonder-
All he did was to remind us that after this, he is “all done magic kingdom”
Plan some activities
that your child will enjoy
In our case we usually plan to stay in hotels that R loves
and that have swimming pools
Simple sensory activities – even if it’s a leisurely bath in
the hotel bathtub will regulate your child
Patience
Find some tools that will help you be patient
You could even have
your own mantra
“Repeat to yourself...He's
doing the best he can…. Or say to yourself ..Sniping hurts his self esteem….Something
that brings X’s basic needs to the forefront of your mind so
that you don't get panty-twisted by his actions.” Says Kellie
"The thing is, at least
with Z, you cannot have any expectations. We struggle when we travel because DH
and and L (and me, too) want to do everything we possibly can in the time we
have wherever we are. But that's when I lose Z.”Says Debbie
Provide islands of
sameness
We make sure we bring along R’s numbers wherever we go.
At
Disney he would often take breaks and play with the numbers and do addition and
subtraction when the crowds got too much
We also try to make sure he has his electronics
Though one friend of mine disagreed and says she likes to go
vacation sans electronics
“On the one hand,
it's their vacation, OTOH, for some kids like A, electronics are the surest way
to shut down observation, mental engagement etc.
Here is my own bias
: in years past I've been more liberal, and as a result, A shut himself off
to everything because he was obsessing over the electronics, and the entire day
became about having access. I don't think he can have a measure of
"healthy use"- it's an all or nothing thing for us.
When we went skiing
in the winter, I deliberately didn't take any level 1 obsessive handhelds - and
that ended up being a good thing- since he didn't have his DS, he had no choice
but to play with his sister, talk with his cousin etc. More importantly, after the
initial disappointment, I really didn't get the feeling at all that the lack of
DS was in any way detrimental to his self regulation or even good time (I had
it in my purse in case of an emergency but never brought it out- to this day he
doesn't know I had it all along).
This summer will be
challenging for him because we will travel a lot- but I'm planning to do the
same. He can take his i-Pad but nothing else. I will encourage him to listen to
music instead.” Says Lillian
Keep family visits
reasonably short
“Y is like a 2 yo with the motor skills of a nine year so he can do a
lot of mischief if left unsupervised. For example, he make take someone's
medication or use someone else's toothbrush etc. At least in my home, I have it
under control and I have some form of respite with school or ABA. When I visit
family I have to be on him 24 7 for the
whole visit” says Purvi
"We've kept our visits
home short. I hate not to visit, but after a few days, we need to go. We
usually stay with my parents, and their place is tiny, so there's not much to
do if we can't get outside. I think we will try staying at a hotel next visit." Says
Ellen
Try not to feel bad with those
that don’t understand your child’s special needs
And don’t feel self conscious about the extra effort you
need to take
“
Autism Civilians just
don’t understand how it is for us” says Debbie
“ … no one
understand that my kids are obsessed with electronics and insist on leaving
them out everywhere… then they get mad at me when my kids are touching their
phones, ipads, etc. No one understands how vigilant you have to be. Heck, we
had a code Adam at the Children's museum and that was when we had 4 adults
with 3 children. They mock me as a copter mom and think I'm ridiculous. And
yes, Z has gotten into someone's purse and taken their medication” says Meg
Don’t forget yourself
Make sure to not to ignore your own needs and the needs of
the rest of your family .
You deserve to enjoy yourself too
“We have to say that I
have a pretty selfish POV when it comes to vacations. We work hard all year ,
we have very little time off, so vacations are usually planned around what we
want to do, not necessarily what is best for A . Because if it were up to
him, he would never leave the living room except to go to school. Usually he
hangs in there, often times reluctantly, when it comes to seeing new places
(though we have been guilty of springing new stuff on him just because an
opportunity came up- well....he'll have to deal with that once in a while
too).
I keep telling myself
that the autism will still be there next week, but the (vacation place)
won't.”
Says Lillian
Make it Easy for yourself
We used to stay with
friends and family, but as of about 2 years ago it started to become really
frustrating. All of the kids in our cohort were aging out of the "roam
around the house randomly destroying or getting into mischief" stage while
A is still in it full swing. So we do not go visiting as a family nearly as
much as we used to. When we do, a hotel is a MUST.
A hotel obviously has far fewer
chatchkes, everything can be cleaned or fixed. It is so much more relaxing for
DH and I b/c when A is over at another house, one of us has to be shadowing
him at all times. He is so curious and well.... you know. … says Karen
Planned Downtime
"it’s like there have
to be certain anchors in place. Landmarks. Rest stops of familiarity and even perseveration-oriented.
Like the breaths in between the contractions and pushing, a time to catch your
breath before you have to move forward and endure once more."
Says Deb
Plan a retreat
area for your child
Many of my friends stressed the importance of an “escape
area" for the child – a place that they
can retreat to if the pace feels too stressful
“I think I should bring
his little pop up tent beause then he can escape when he needs too and still be
part of our group vacation. Says Danielle
“We
must have a larger area. Although we are only a family of 4, we often try to rent a 3 bedroom unit so D can have his own space. “Says Amy
" Whenever we go somewhere, we allow L to
scope out an area where he can retreat to have "alone time" to regroup.
Sometimes it's his cousin's bedroom, away from the rest of the family. Other
times, it's a bathtub in the hotel. Just somewhere he can go for solitude.”
Adds Kellie
Make sure your
special needs child has what they like to eat
Eveyrthing is less stressful when you are not hungry or
sleepy
DH and I always looks for hotels or VRBO rentals that have a
little kitchen and frig
“I think the key is
having a kitchen or access to familiar foods. I don't believe in introducing
new foods on vacation. Too stressful for everybody! “ Says Purvi
Priming
We never travel without planning a schedule
But even better are some of my friends who plan well in
advance
"Priming is key . We
showed Y a map of the Bahamas. I also showed him on a map that we will
stop in Atlanta first. He was upset about the layover, but did a lot better bc
at least he expected it. I also showed him pictures of the resort and told him
there was a big lazy river." Says Purvi
Christine adds “I
highly recommend social stories for firsts, like riding on a plane. I made
a social story, including pictures of the inside of an airplane. I wrote about
every detail from riding the parking shuttle to picking up bags”
Structure
Some kids on the spectrum do fine without structure
“Traveling is a delight now. It's free time away from therapy, pressure, peers who confuse him, feeling isolated, and being corrected 10 million times a day. “ Says Kat
But for most kids a well structured day is critical
“I asked him to make a schedule for the day.
He got to plan it with a little negotiation and we pretty much stuck to it. We
even wrote down what we will eat for our meals.”
Says Purvi
Develop a thick skin
Remind yourself not to worry about any odd looks that people
give you if your child
We only stop R from doing things that are truly rude or
hurtful to him
I try to think of the
impact our attitude has actions have on
R and the kind of mother I want him to remember having
Then the two people who are looking at him "oddly" as
he is making an eeeeee sound or cooing over a plastic number becomes a tiny
annoyance , not something that actually hurts you
For me, when I feel
that way, it is all based on fear. Mostly fear of me and my children being
judged and fear of the future.
And for me, the only thing that has ever made a change in my interactions and
in my real feelings is letting go of the fear. You let go of fear and you let
go of the need to orchestrate, control, see the future, steer, guide, shepard,
change, improve, etc. ,etc. ,etc
Says Karen
This post has been written for Hopeful Parents and will be published their tomorrow. Floortime Lite Mama has been helped by her Autism sisterhood. Thank you Kellie, Purvi, Lilian , Christine, Kat , Kellie, Amy Danielle, Ellen, Debbie, Karen, Meg and ofcourse my DH
