Community Project: Tips for traveling with a child who has special needs

[Deb]

Hi Everyone,

I thought it might be a great idea to take advantage of all the brains and energy we have on this site and start our first ever community project! I know that every single member has something to contribute.

In light of the summer "travel season" that will begin soon, this a great time to reflect on successful and unsuccessful trips that you've taken with your children and share your hard-earned wisdom.

The question is, how can a parent make traveling with a child with special needs (1) more fun, (2) less stressful and (3) safer?

Here are some examples of things to think about:
-Preventing an airport meltdown in a child who is extremely sensitive to changes in his/her environment
-Managing a long car trip when your child has a behavioral diagnosis
-Preparing to take your child away from his/her network of local doctors

You could make recommendations for a specific diagnosis, an age range, a mode of travel, a great destination, an information resource, and so much more.

After we get a bunch of contributions, I can organize the document and we can publish it on the Medical Home website!

To contribute, please scroll down this page and click the red "comment" button. If you have documentation for what you are sharing, please include the hyperlink, or at least cut and paste the url (web address) of the relevant web page.

Thanks for caring, thanks for sharing!

-Debbie (Your enthusiastic network administrator)

[ANNIE]

HOLA MI NOMBRE ES ANA SOY LA MAMA DE JONATHAN Y DE TRES NINOS MAS SOMOS UNA FAMILIA MUY GRANDE. Y A PESAR QUE SOMO UNA FAMILIA GRANDE Y QUE JONATHAN ES UN NINO MUY COMPLICADO DE SALUD CON JONATHAN VAMOS A TODAS PARTE CON MUCHA PRECAUCION Y CON TODAS LAS COSAS QUE EL NECESITA. SIEMPRE Y CUANDO SE PREPAREN BIEN DO DEBE A VER NINGUN TIPO DE CUIDADO Y TENIENDO MUCHA PRECAUCION. GRACIAS A DIOS NO HEMOS TENIDO NINGUN TIPO DE PROBLEMA SALIENDO CON JONATHAN. QUE DIOS LOS BENDIGA

[Kim Wolf]

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Delete Discussion Not every builing or place is handicap acessible so always book ahead of time to make sure you get what is needed to make your stay away from home more enjoyable instead of more work. We have a daughter in a wheelchair so we always make sure a beach rental house has an elevator, instead of carring her up flights of steps. We look into homes with handicap showers. Bath chair acessible showers are rare but definety available. New rental condo's also have handicap showers. Most older condo's or homes do not. Also if a beach home is handicap acessible you are more then likely to have some type of walk way or beach ramp nearby. If visiting a beach such as virginia beach ask about what area has handicap beach access. This is where a wooden boardwalk takes you out across the sand. Some rental companies rent beach wheelchairs. They have big plastic wheels that glide across the beach . However I have personally never rented one. They do not have the needed support to hold my daughter up . Nor do they have any feet rest so her legs would just dangle. Not a good thing!!

I also found a list is the best way to start any vacation. Write down every famileis name and think what is important to them. Such as my son likes his game boy ,rollerblades, boggie boards. My husband needs his breathing machine for sleep and I like sudoko puzzle books. Then add all the necessary things, Sunglasses, cell phone chagers, medicines, camera, sunblock, hats, jackets, bathroom supplies ect...

With a medically fragil child think about all the supplies you use daily and take them. Feeding pumps, striaght cath, bath chairs,medications,briefs (dipers), wetones, syringes, gloves, added proping pillows.formula,bed pads,ect..

My hint is, if you have a person in a brief. I always pull back all the blankets and lay a vey large thick tablecloth across the entire bed. Then a proceded to add a soft blanket. Then a bed pad. Then all her pillows ect,,. So If she urinates or pops thru the brief I only need to stripe till the table cloth and wipe it off with a clorox wipe and remake the bed with the linens I brought from home. A fresh blanket ,bed pad ect.. That way you don't ruin the hotels matress.

If you need to leave a handicap child at home with a helper. Make sure they know that person's daily care shedule. Leave a list of when medications are to be given. A list of DR.s name, which hospital you use and leave insurance cards. Any relative or friends # that could back your caregiver up incase they got sick. I always plan layers of care if I need to leave my daughter. Tell the caregiver what they like such as a certain cartoon or game or when to take her outside. Plus think of concerns,such as make sure she is propped up when feeding, watch that she is not laying on her G-Tube, make sure her body is propped with pilows as needed to prevent bed sores.

And don't forget the pets that you might take or leave behind, Take their food ,water bowls, bed ect.. Or tell the caregiver all the above.

Last : Take a vacation. You all need it. Don't over plan the day . Just let it happen. Just know your childs handicap needs, such as my daughter is head injuried and does not regulate the heat. So we plan our on the beach experiences with her ,really early and in the evening. We always take another care giver along . So when our daughter is resting. We have time with our non- handicap children. Fly kites, throw footballs ,play in the sand, just spend time together and realize how blessed you are. Share

[Marks mom]

Hi we just went to Disney world and had a rough time because Mark who has Asperger's was scared to death of the airplane.(He had never flown before) Next time we will drive. Also, he didn't like not having a schedule and was tantruming at night that he wanted to go home. I had a little bit of a schedule made, but next time I will try to make a better one for him.
It helped that we could see Epcot fireworks from our room every night at 9:00 and he counted on that and it helped him calm down.

[alllison]

We are known for family trips lol! We are going to Texas in June this year.
We like to use the fans that plug into the cigarette lighter for the car.
I pack a bag of snacks with each child's name on it .
I also got a spray bottle with a fan on it, my oldest overheats quickly in the summer.
We suggest staying at a KOA campground my kids don't handle the hotels very well. They have playgrounds and that helps. They run about 60 dollars a night.
We never leave on a long trip without the DVD player in the car.
I use restaraunt.com to get gift certificates for places we will go, saves money. Also, check kids eat free nights at restaraunts by checking online. I plan ahead as much as possible , it gets expensive to eat with kids.
If you lock your keys in the car with a child in it the locksmith can't charge you. lol At least in WV!
Bring their favorite blanket or toy from home.