In this episode, I share with listeners an inside look at just how complicated it is for me to bring my disabled son on vacation, or traveling anywhere for that matter.
May I first add, that as Daniel has aged and become a young adult, he is heavier and requires more assistance with mobility and transferring and caregiving in general.
If we are blessed to be able to take Daniel on a vacation, the planning is pretty much at a ridiculous level. I’ve listed out some of the biggies.
- Making sure we have enough of his medication with us. Both his daily meds, his “PRN” meds, and his rescue seizure meds. Some of Daniel’s medications are considered controlled substances, so we can only fill them in person for 30 day amounts. This sometimes requires a special override from the physician, in order to have enough to travel with. So I have to make a list of the medications, the amount of days, and make sure we are not going to run out.
- Supplies. Gathering together Daniel’s supplies, and I have a check list for this. Diapers, adult wipes, soft cloth bed pads, disposable bed pads, special skin creams and topical medications. Feeding pump bags, extensions, syringes, and a back up Mickey button g tube kit. Etc.
- Clothing. Shoes, socks, AFOs. Shoes for the AFOs. Pool shoes.
- Equipment: Wheelchair, Wheelchair tray, tool kit for wheelchair, special needs stroller, bath chair, nebulizer, respiratory vest, eye gaze computer, iPad, chargers for things that have chargers, and now we have to make sure we have a portable hoyer lift and threshold ramps.
- If we are going to be able to swim in a pool, Daniel has special swim diapers and sun protection shirts that he needs, as well as a life jacket flotation device, and several other swim adaptable things he can use or play with.
We recently went to Cape Cod, where we are able to stay in a family members home. Knowing the layout, the entry way concerns (ie. Stairs ), and the height of the bed he will be in, is important. I bring bed risers and extra support pillows, because the bed doesn’t have articulation like his bed at home.
And that is just packing to go. I highly advise getting a clip board with a list that contains literally everything crucial to your special needs person on it. Then you can check it and review it for anything you miss.
The Travel part.
There is no easy way to travel with a severely disabled person.
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