Traveling With a Special Needs Child

Caleb was discharged from the hospital in January and by the time Easter rolled
around, three months later, we felt the need to travel. All of our family is out of state,
and we had been used to traveling several times a year in order to spend time with
loved ones. We saw no need for this to change, and so as April rolled around, we
packed up Caleb, his ventilator and all of his equipment and headed out on the four
hour trip to spend the weekend with family.

The drive to Michigan was uneventful, and we felt pretty good about our
independence and our ability to continue on with life as we had previously done.
Once we arrived, the unpacking took a little longer than normal, and we had a lot
more luggage, but nothing would deter us. The problems didn't arrive until nighttime
set in. As the house became quiet and we all turned into bed, Caleb's alarms began.
We were used to having a nurse at home, but so far away we were on our own. As
soon as we would fall asleep, Caleb would disconnect from the vent. We took turns
getting up to re-hook him, but as the night wore on and the alarms continued, our
patience began to wane. It seemed that we could not sleep for more than fifteen
minutes in between each alarm. By 4 o'clock in the morning I was ready to reload
everything and head back home.

As the sun began to rise, so did Caleb and the rest of the household. Our interrupted
sleep was over, and we were to begin a new day. We took turns trying to nap, but
this seemed to defeat the purpose of being together with family. As day two turned to night, we settled in for a repeat of the first night. Morning found us packing up and heading home, short on sleep and patience.

The trip back to Ohio was filled with an air of defeat. We had made the trip, but had
it been worth the trouble? We didn't bother discussing much as we knew that in our
exhausted state, nothing productive would transpire.

As the years passed, Caleb's night time venting became much easier. He slept more
soundly and the alarms became few and far between. This made for easier sleeping,
but our daytime with him became more difficult.

Caleb was becoming ambulatory and beginning to explore everything. And not in the
way a typical child would, but in a destructive way. He would wander from room to room,
and anything he would pick up seemed to end up broken. He loved to try to take
things apart, and this led to needing constant supervision. I do not exaggerate when I
state that at all times either Bob or I would need to be with Caleb. In this manner, one
of us would be able to visit, but the other wouldn't.

Again, we began to wonder at the value of the effort needed to take these trips. And
yet, family was such an important part of our lives. We needed to find a way to make
this work. Some things could not be changed, but others could be altered to make the
trips more enjoyable and slightly less exhausting.

In the hopes of helping other families navigate their travels with fewer struggles, I
have compiled the following lists:

Things I would have done differently

• I would take the first year and do no traveling. I would welcome family that 
would like to come our way, where our support system was in place. 
• I would educate and include my family more in the care of Caleb. I imagine 
some of them would have been willing to take a turn at following Caleb around 
while we were visiting. 
• I would sleep all that I needed and view the time with family as a break for 
myself.
• I would be open and honest with family regarding the difficulties involved in 
traveling. 

 Valuable tips when packing for a trip  

• Have a master list of all medical supplies that will be needed. After Bob would
pack, I would use the list to double check that everything was loaded. There is 
no worse feeling than arriving at your destination only to realize that you have
forgotten the cord to a necessary piece of equipment. Four hours is a long drive 
when you have to turn around and go right back home.
• Bring plenty of your own toys and books to entertain your child. One time we 
brought a whole bin of supplies to keep Caleb entertained and in the same room
as the rest of the family. 
• Always, always have the phone numbers of your doctors and medical supply 
company. There have been a couple of times when our equipment company 
has been able to bail us out of a jam. 

Pointers for those who open their home to families with special needs children

• Remove any items that are breakable.
• Close and, if possible, lock doors that you do not want the child entering.
• Have available some of the child's favorite activities.
• Don't plan on sitting in one room and visiting. Be willing to go to a park, take 
a walk, include the child in a cooking activity, or follow the parent around 
room to room. 
• If a group is gathered in one room visiting, and you notice that the parent and
child are missing, seek them out. It is a very lonely feeling to be with a group 
of people and yet be sitting with your child in another room. 
• Engage with the child.  Even if the child cannot talk, still include them in
conversations and activities. Make comments during the conversation rather 
than asking questions (ie: This puzzle is tricky; you sure are working hard at 
it). 
• Be nonjudgmental of the parent and the child. Traveling puts children out of 
their comfort zone. Meltdowns and tantrums will be more frequent which in 
turn increases a parent’s stress. You may see the worst side of both the parent
and the child.
• Offer encouragement. A word of compliment regarding either the child or the 
parenting goes a long way. Parents of special needs children very rarely get a
pat on the back and they often feel as if they are failing. 

Traveling with a special needs child remains a challenge, but it has gotten much easier over the years. We no longer come home exhausted from our trips, and our family has learned a lot about Caleb. My hope for you is that whether you are the parent of a special needs child or the extended family, you will cherish the special life that has been added into your family.