As with all things, planning can help make an outing successful. The first few times out may seem daunting, but as with all things, your routine can be set to streamline your preparation time.
Think about your personal needs. If your bowel program is not yet perfected, you may not want to go out right after the bowel program. Eventually, your bowel will become regulated, so that will not always be an issue. Think about catheterization times if you perform intermittent catheterization. At first, you may want to go out between catheterization times. Always have catheterization equipment with you just in case your trip gets delayed. Later, you will be so proficient at catheterizing, you will be able to do it in other private restrooms. Bring water, food, medication, or other items depending on your trip timing. You will need to do pressure releases, as always.
For most people, the first time out of the house is with the accompaniment of a trusted individual. You may have had an out trip at your rehabilitation facility, which is an excellent learning experience. However, your first trip from home will be quite different. Having the support of someone who knows your care needs is valuable for security. As time passes and you gain confidence, you will be able to go out on your own. With or without the support of another individual, always bring your cell phone, if you have one, just in case you get in a situation where you need help.
Going out of your home can be a challenge. You need to fit through the doorway in your wheelchair. If this is an issue, you may need to transfer temporarily into a smaller chair while your regular chair is fitted through the door. There may be an alternate route out of your home, such as through a patio door, that might be easier. If the threshold is a challenge, inexpensive overlays just for the threshold can be purchased as people have a variety of needs for them.
Your home may need a ramp for getting up and down stairs on the outside of your home. These can be custom-built with wood or purchased through a ramp company. There are even ramps that are portable that can be obtained so you can bring them along to other places such as family or friends’ homes. Ramps that are built for your home (prefabricated) or portable are expensive. Being unable to afford them can make an individual housebound.
Asking for help with ramps should be a priority. Many organizations will assist with obtaining a ramp. Individuals with skills will help build one. Donations for supplies can be made. Talk with people such as civic organizations, religious organizations (even if you do not belong), or your civic leaders (some communities have resources). Somewhere along the way, you will make a connection. Often, building suppliers will provide the wood. Individuals from Habitat for Humanity may volunteer to participate in the construction. A news story will often help with funding the project as well as getting the request for help to many people.
Once you are out of your house, you will need a ride. If you are fortunate to have an accessible van and can drive it, you are ready to go. If you do not drive, speak with your healthcare professional about driving lessons. These are provided by your occupational therapist, or you may need to see an occupational therapy specialist in driving for lessons. Therapy to strengthen your arms may also be needed. There are many adaptions that can assist with driving.
If you are transferring out of your wheelchair into a car seat, be sure to include moving your seating system. The car seat is cushioned but not with the quality of seating equipment you need. If you are driving with your seating equipment, the height of your seat will need to be lowered and the steering wheel adjusted. There are transfer devices such as an ‘auto assist grab bar’ handle that can temporarily attach to the frame of the car. Swivel seat cushions may help for getting in and out, but these do not have the pressure protection needed for long-term sitting. Wear your seat belt.
If your own ride is not for you, contact your county, which will have adaptive vans that can transport you for a modest fee. You will need to register with them and schedule appointments ahead of time. This is very helpful, especially for healthcare appointments. Most bus systems are accessible, but you may need to phone ahead to be sure an accessible bus is put on your route.
By evaluating your ability to go out, you will see if you need any additional equipment and how your body reacts to travel. For example, you may find you need more head support due to the movement, better breaks, or seating equipment. The motion and vibrations of a vehicle can fatigue your body if you have a sensation or decreased sensation. If you do fatigue, begin with shorter distances. Slowly increase time in the vehicle to build up your body tolerance. Ensure the vehicle is heated or cooled (depending on the weather) before you enter so your body temperature is not disrupted.
Decide where you want to go ahead of time so you can check accessibility. Google Maps has photos of many, if not most, locations. The photo will tell you a lot about the accessibility of the area where you are going. If you cannot see the accessibility directly from the photo, phone ahead to ask about ramps, the location of accessible entry, the accessibility inside, restrooms, room to move around inside in a wheelchair, such as at a restaurant, and wheelchair seating. The more you go out, the more you will refine your questions to your particular needs, such as lighting to be able to see clearer, etc.
Now, you are out; where to go? The answer is anywhere there are people. You may want to start with a basically non-interactive site, such as going to a show, park, or shopping. This can be a good start to building your confidence with being out of your home. Being able to go out and come back to your house successfully is an accomplishment, especially the first few times.
Going out provides a good opportunity to interact with people. Places to meet people are clubs, organizations, volunteering, and hangouts such as some eateries. Look around at people, give a smile, and say hello. Some people will stop and chat. Have some small talk ready. If you are at an organization, the topic of the group is a great place to start. Think about things that are happening in your community. Sports is always a good topic. People have opinions about the local teams. It is generally safe and not polarizing. Other topics can include a public event, asking about how someone likes the item they are eating or drinking, or even the weather will work. The first time you go to a place, you may not make any interactions at all, but over time, people will become familiar with you and will become more friendly.
People are going to be curious about your situation. Be prepared for this question because it is going to occur. It is up to you how much you want to reveal. Some individuals do not want to discuss their health with strangers, which is ok. Be prepared to switch the topic. For example, you could use the old line; you should see the other guy and follow up with a topic that you do want to talk about. Or you can say, I was in an accident, or I had a stroke, but that is old news; how about that storm last night? If you are comfortable talking about yourself, go ahead but keep it brief. This is about interacting with others, not about your tale. Remember, you do not need to disclose every part of your personal care and medical history. I find one of the most often asked, the intrusive question is how do you go to the bathroom? You can choose to answer or say just like you do. People are curious, but your private information can remain private.
Over time, you are going to reconnect with old friends and make new ones. A lot of social interaction involves going out of your home. At first, going out can be quite a challenge to overcome. Do not let reading all the thoughts in this blog overwhelm you. Many of the ideas will have been already mastered by you.
Pediatric Consideration:
It is important for everyone to be able to get out of their home and interact with others. Children need interaction and play with other children. They learn from other children by being with them. Taking children out of the home is a time for them to learn about the world and how to behave in it. The isolation of COVID has emphasized how important interaction is with other children.
Going to school is one way to enhance children’s social skills and learning. Play dates at parks, other people’s homes, and child-level social settings allow your child to learn about their own abilities and to figure out their adoptions. Providing play situations is a natural part of childhood. Most play dates now include parents visiting at the same time, which can help with transitions for your child. With the parent nearby, they can play freely while transitioning to time without parental support should be done as your child develops.
Linda Schultz is a leader, teacher, and provider of rehabilitation nursing for over 30 years. In fact, Nurse Linda worked closely with Christopher Reeve on his recovery and has been advocating for the Reeve Foundation ever since.