Today we continue the series on special needs family outings, including vacations, day trips, or even simple play dates. Special needs families have extra considerations when planning an outing, and people outside of the family are often unaware of what those extra considerations are, or even of the fact that they exist. Without this information, outsiders can misunderstand the family’s decision making. Unfortunately being misunderstood or misjudged for such decisions is a frequently lamented occurrence in the special needs community. It is a significant factor in the reduction or loss of relationships that new special needs families often experience.
Since every family’s needs are different, I cannot compile an exhaustive list- or even a most-common list- of extra considerations that a special needs family may have. Instead, I’d like to offer two examples of decision making which illustrate how misunderstandings can occur. I hope this may be a helpful conversation starter between special needs families and those close them.
The two scenarios below are entirely fictional, but I will suppose the family involved is my own- that is, the Safari household with three children under 5, one of whom has a trach and a g-tube- since I know what all of our “extra considerations” are.
The Safari family is invited to the mall for a playdate on a weekday morning in March by a friend who has 2 preschool-aged children. The Safari family accepts.
Scenario 1 decision making:
Deciding on whether to go on an outing is about benefit and risk assessment. It’s not black and white- it’s a judgement call in which the family does their best to judge the risk and decide whether to incur it. Some of the many factors which may be involved in a decision include:
Season– This includes considerations like weather and seasonal bugs. March usually falls right after the end of RSV season in our area, although the season is sometimes extended. During RSV season, especially when June was younger, we avoid unnecessary exposure to the public and especially avoid exposure to young children. (Read more in our Intro to RSV, here.) In this scenario let’s assume RSV season has ended for our area (meaning the number of RSV cases reported weekly in our region of the state has dipped below the agreed upon threshold) and there is no inclement weather, so the ‘season’ consideration leans in favor of the outing in this scenario.
Timing- This refers to how the time of day (morning), week (weekday) and year (non-holiday) affect the outing. For any family, it is easier to keep track of children and manage behavior in quieter, less busy areas than it is to do so in louder, crowded areas. So, while the mall isn’t the quietest, calmest place possible, going on a weekday when kids are in school and many adults are at work is pretty workable. The ‘timing’ consideration gets a check in favor.
Environment- Assessing the environment for risk involves a myriad of things including the flow of vehicle and foot traffic, handicap parking availability, stroller accessibility, ease of accessing our vehicle in an emergency, level of childproofing (fragile, sharp, heavy, hot things in reach), physical limits of the area (enclosed play place vs wide open), visibility of the kids in the area, sanitation practices, ability to comfortably use the loud suction machine, environmental hazards to June like smoke, dust, glitter, incense, perfume, strong smells, and splashing/standing/spraying water, AND the amount of effort it require of us to deal with the hazards present. In this scenario let’s assume the parking at the mall is adequate, though I would be moderately far from the car in an emergency, the play place is enclosed but with good inside visibility (no tunnels, houses, walls), adequate sanitation schedule/supplies, a stroller can enter, there are no water features and it is non-smoking- all of which amounts to only mild risk.
General exposure to germs- This involves some guess work, but we think about what level of germ exposure we expect for the location itself, which is influenced by the population (mostly adults or lots of kids), the turnover rate (an all-day event with one group versus being in a play place with kids coming and going continually), amount of contact the kids and others have with surfaces (sitting at a table versus climbing around a play place), the sanitation practices in place if any (a mall play place versus an outdoor park playground), and the health of the population present (an outdoor park versus a play area at a doctor’s office). In this scenario, the exposure to germs gets a high risk rating, although the reduced traffic on a weekday helps some.
Close exposure to germs- This involves thinking about the people our kids will definitely have direct contact with on the outing, in this case, our friend and her two preschool-aged children. Our friends are aware of the risk to June, so they always tell us if their family has been exposed to illness recently so we can assess whether to reschedule. In this scenario let’s assume the mom says one of her kids had a runny nose the week before but no fever, and seems fine now; that would be mild to moderate risk because if the child was sick, germs might stick around for a while. But being around children who have mostly recovered from mild respiratory illness is a risk we typically take when it’s NOT RSV season for three reasons: first, because June would be exposed to these germs in the public anyway, secondly, so she can build up immunity to compensate for being sheltered from germs during the winter and thirdly because her pulmonary health is strong, and having a common respiratory infection is not likely to be devastating.
So, Scenario 1 involves favorable season and timing, pretty good environmental set-up, a moderate close exposure risk and a high general risk of germ exposure which we will deal with by extra sanitizing during and after the event. We decide to go for it.
The Safari family is invited to the mall for a playdate on a weekday morning in March by a friend who has 2 preschool-aged children. The Safari family declines.
Comparing the basic facts, this looks like the same scenario. But when looked at through the lens of benefit and risk assessment, they are very different.
Season- Let’s assume the season and weather in the two scenarios are the same, so this consideration is a positive for this outing.
Timing- Although it is on a weekday, this outing falls on Spring Break, during which time children, teens and adults alike descend upon the mall in a celebratory mindset, making it very noisy and busy. This area of consideration is a net negative for this outing.
Environment- This is a different mall than in the first scenario, and let’s say here, the only handicap parking is outside of a wing that has active construction going on. The hanging plastic sheets don’t quite contain the sheet rock dust and who-knows-what-else (this is an asbestos abatement project, you say?), so we would have to park elsewhere to avoid it in the back of a chaotic lot full of vehicles that were similarly displaced. The barriers for construction have narrowed some walkways in unexpected areas, making it difficult to push the stroller carrying June’s medical gear. The play place has a tree house for climbing, and children cannot be seen when they are inside of it; this is problematic for June because I need to assess her visually at least every 60 seconds to be sure that her breathing isn’t obstructed. Also there is no wall around the play area, meaning while a mom is dislodging one child from a plastic tree branch, another one may be running to a far off Ninja Turtles display inside Macys’. This area goes in the negative column.
General exposure to germs- Exposure to germs is higher for several reasons including additional children present from spring break, the enclosed nature of the tree house, and poor sanitation practices since I’ve never seen a mall employee climb the tree to wipe down the inside and there are no hand sanitizer or sanitizing wipes posted for the public. Eek, negative column.
Close exposure to germs- Let’s assume the mom and children we are meeting are healthy, yay! That’s a positive.
Scenario 2, while it appears identical to Scenario 1 at first, involves positive things in regard to season and close contact with germs, but significant negatives in terms of timing, environment and general exposure to germs. Ultimately we decide not to incur the risk.
It’s easy to see how misunderstandings can arise when these two scenarios look identical at first glace, but the family accepts one invitation and declines another. It’s most important to note that the decision to decline was based on a judgment of the situation as a whole, rather than on any absolutes. Most misunderstandings arise when others seek to infer black-and-white rules, like the Safari family can go to the mall,” “can’t go to the mall,” “can’t go to Northline Mall,” “can’t go anywhere that’s under construction,” or “can’t leave the house during Spring Break.” Given the right circumstances, our family could do any of those things.
In an upcoming post, I’ll take a closer look at common misunderstandings like this that occur in this area, the their results. The key to avoiding all of them, though, is communication and grace. I hope this small peek into the special needs decision making process raises awareness and sparks discussion among those making, and those impacted by, these decisions.