Traveling abroad, or even traveling long distances in a car, can seem a bit daunting at first, there are so many unknowns that come along with stepping out of your element and seeking adventure. This summer, if you decide to take a long trip across country, or plan to go abroad, here are some ways to make your experience that much more memorable!
Expectations and Pace
First and foremost, set your expectations, have a plan and be OK if the plan changes. We all know that this life can throw us countless curve-balls. Know that these unplanned moments are possible, and if they come up take them in stride. Do not be afraid to get out and go! Often, just the idea of trying something new can stop us in our tracks-sometimes the best moments happen when you least expect it.
Go at your child’s pace. If you find that they are having a bit of a rough time, try not to force it. Rest days for our kids are just as important as adventure days, they can provide a much-needed re-set so that you can start fresh the next day. It provides both you and your child some time to catch your breath!
It is always good to carry a digital file of your child’s diagnosis and major medical conditions (these can be requested from your doctor) should something come up and you need access to your child’s medical records. Remember to bring arm braces and hand splints just in case your child’s hands need a break from their repetitive motions. Being in a new environment may take some getting used to, bracing may help to reduce some anxiety.
When out and about
If you are adventuring outdoors, some camping backpacks can hold up to 60lbs and your child may really enjoy riding in it. Once your child is too big for the backpack a piggyback harness may be a great alternative to keep your adventuring going. Bring a low-tech communication tools (Ex. ABC Flipbooks, laminated yes/no tool, communication grid) so that no matter where you are your child can effectively communicate and be an active participant in any activity.
If you are driving long distances, break up the trip with some fun adventures along the way, allow for breaks to get wiggles out and allow some time to use the restroom if needed. Make sure to bring plenty of snacks, drinks, spare clothes, diapers and any medical supplies needed in sealed bags to help with space saving and organization. Have a plan on where to change your child if there aren’t any disabled facilities. Having some sort of portable sleeping mat may prove useful when taking care of your child’s personal needs.
At the Airport
When at the airport ask for wheelchair service even if your child is mobile. This extra bit of help goes a long way when you are trying to get from one place to the next. You can gate check a stroller if needed, make sure to break it down ahead of time and remove any loose accessories that may fall off in transit. You can check a car seat with your bags (usually at no extra charge) to meet you at your destination. Wrapping it in some sort of protective covering first (i.e. plastic garbage bag) may help prevent any scuffs and bumps to your child’s seat.
At a Hotel
Often times if you stay at a hotel and you have specific items that need to be kept either in the freezer, or in a fridge colder than the one found in your hotel room, you can request to keep them in a fridge that the front desk has access to. Of course, always make sure you call your hotel ahead of time to make sure they can accommodate. If possible, try and request accommodations on the first floor for easier access and make sure to let the staff know if your child needs an accessible room. If a hotel is full these
Sound machines work wonders if the entire family is bunking in the same room, the sound of the ocean waves in your room will give the adults a little more freedom to move about while the little one’s sleep. If your child likes to have access to movies while you are in your hotel room, but you don’t want to pay for a movie on the hotel television it is always nice to bring a way for you to access your child’s favorite shows and movies. An Amazon Fire TV Stick connected to your hotel room television allows you full access to your downloaded streaming services (i.e. Netflix, Amazon Prime videos, etc.).
No matter where you decide to venture to this summer, whether it be across oceans or state lines, being prepared for unexpected fun (and some challenges) is always a good idea. Adventuring with your loved ones is something to cherish for a lifetime. Wherever you go this summer be sure to share your child’s story (The Purple Card) and spread Rett syndrome awareness! You never know who you will come across that may be impacted by those you love so dearly.
The Purple Card (click image below)
***Thank you to Lilliana Boczar and her parents (Mari and Stephan) for offering up wonderful tips from their time spent living abroad!