Category Archives: Authenticity
This series focuses on special needs family outings: what goes into the decision and what comes out of it. The last post featured two mall outing opportunities that appear identical, but are actually on opposite ends of the spectrum when viewed from a risk assessment perspective. Consequently, one invite was accepted and one was declined, which would be puzzling to an outsider to whom the invites appear the same. Special needs families know all too well how often this situation occurs, and the unfortunate misunderstandings and judgments that can result. The already difficult process of making travel and outing decisions can feel like a mine field of potential interpersonal conflict.
At this point in our journey, we as a family are blessed to be surrounded by wonderful friends and family who have invested time into understanding our circumstances, so we rarely deal with these difficulties nowadays. But along the way we’ve experienced each of these misunderstandings at some point, and we’ve heard countless similar stories from others in the special needs community.
Today we’ll take a look at a few misunderstandings that special needs families often face and how they can be managed.
The last post hit on the most common type of misunderstanding:
1. People outside the family seek and/or assume black-and-white rules for the family’s outing decisions when, in fact, none exist.
Usually the root of this problem is that others assume the special needs family has been given straightforward “dos and don’ts” by their doctor, leading to questions such as,
“I thought you could leave the house now.”
“Are you allowed to go to the mall or not?”
“You mean can never be around school kids?! That makes no sense.”
If the family has an opportunity to explain in response that travel decisions are based on risk assessment rather than absolute dos and don’ts, the misunderstanding usually clears up quickly. However, other people’s receptivity to this explanation is usually directly related to how often they use this type of risk and benefit assessment in their own decision making; occasionally people find this approach so foreign that the misunderstanding ultimately remains.
If the family is not given the opportunity to explain (or if they choose not to), people may make unfortunate assumptions about what appears to them as inconsistency in the family’s decision making. We’ll discuss this below.
A second type of misunderstanding or source of conflict is when
2. People seek to make accommodations for the family but are disappointed with the results.
People who understand the decision making process may offer to mitigate some of the risk in hopes that the family can attend or participate more fully in an event, which is wonderful!* However, if for whatever reason, the family is still not able to do what the well-intended person was envisioning, that person may very naturally feel disappointed, sad or even resentful. In the mall scenario, the second friend may say,
“Can I help carry the stroller over the narrow parts?”
“I can run after the kids if they leave the play area…”
In the example, those are big helps. And they represent significant effort on the part of the friend who has 2 preschool kids in tow. However, the friend may not realize that these helps only address minor aspects of the total risk, leading the family to decline despite her offer. The friend may understandably feel like she’s “bending over backwards” trying to get together and that her generosity is not appreciated.
(*Sometimes offers of help do tip the scales so that the family can go. If so, HOORAY! Win-win!)
The last common type of misunderstanding is often an outgrowth of one of the first two types we discussed. It occurs when,
3. People make assumptions and judgments based on what appears to them as inconsistency in the family’s decision making.
Routinely in special needs forums, people recount heartbreaking stories of loss of relationships due to this type of misunderstanding. This misunderstanding usually starts when someone is disappointed in the special needs family decisions- perhaps the family cannot attend this person’s event, or cannot see them as often as they used to, and/or this person begins to take personal offense to any activities the family is able to do without them, viewing it as the family’s declaration that they value that experience more than they value that person. Again, it is easy to see how this occurs from our two mall outings example, when activities which appear identical to outsiders actually carry very different levels of risk. In any case, this person is disappointed initially. The either don’t understand or don’t accept the basis for the family’s decision, so they create their own explanation, often as their disappointment is blossoming into sadness, anger, resentment or grief. Some sadly common examples of things that are said about special needs families in these situations:
“They just went to the mall last week. They can go. They just don’t want to.”
“They use that kid as an excuse.”
“They saw Talia last month. I guess I’m just not as important to them.”
“I bet they aren’t coming because they’re embarrassed that [they don’t have…../their kid can’t do…./they can’t do xyz….]”
“They said that their kid has [xyz problem] but I saw him doing [abc], and that doesn’t make sense. I don’t think he’s as sick as they say he is.”
“They make a big deal out of everything. They just want attention.”
Naturally, the relationship suffers when disappointment ushers in anger, resentment, gossip, and judgment on its heels in this way.
So what can be done?
For special needs families and those close to them alike, communication and grace are the simple but powerful keys.
These can be put into action by:
- Everyone involved remembering that the special needs family is solely equipped and empowered to make these choices. Each decision is so unique that it really can’t be compared to others or evaluated by those outside.
- Special needs families proactively sharing their decision making process to others, when possible, not with the aim of justifying the decision but rather to raise awareness of the process for their own sake and that of other special needs families.
- Those close to special needs families asking questions about the family’s needs and/or how they can help.
- Both sides bearing in mind that patience and grace will frequently be needed as they work to understand each other.
- Both sides taking the risk of talking over their misunderstandings and disappointments with each other and resisting the slippery slope of judgment and gossip.
- Special needs families who find themselves being judged should likewise avoid the unhealthy trap of vilifying, gossiping about, hurting the one judging them; rather, they should confront the person involved as gracefully as they are able, which will end the cycle of misunderstanding and judgment either in a resolution or in cutting ties.
Soon we will explore a much more fun aspect of this complex topic: sharing some of our own adventures including what travel and outing plans worked well for us, what didn’t, and how our decision making in this area is changing as the kids get older.
The last month and a half has been difficult. It’s not the kind of difficult that needs fixing, it’s just one of those periods of rough transition that inevitably comes and must be weathered in order to emerge with the tools you need for the next season. I call this a ‘desert time,’ referring to the many times in the Bible that God led people into the desert for a period of difficulty and growth, like Abraham, Moses, Elijah, David and Jesus.
Factors in the mix include:
- the kids’ adjustment to the new baby- which brings emotional and behavioral parenting challenges despite the fact that they are both in love with their little brother
- our family’s adjustment to June’s ongoing and changing medical needs- which also brings emotional and practical routine changes for all of us constantly
- a few recent emergencies and hospital trips with June (which all resolved well)
- the irregular schedule that comes with a new nursing baby
- the difficulty of having energetic young children under the same roof as elderly dogs
- the need to adjust physical limits and teaching/discipline strategies as the kids’ abilities and independence increase each day, not the least of which is June being able to remove her pulse ox and HME at will (more on that soon)
- the kids’ love of “sensory play,” and the soap, water, pom pom, toilet paper, cereal, coin, fabric, dirt, paint …. messes that result, often as a surprise discovery for me due to the previous point
- never-ending adventures in potty training ‘interest’ from the kids that I *try* to patiently encourage and help them with, but that doesn’t seem to be developing into actual training
- the typical holiday busy-ness with related events and tasks (though seeing family and friends was a very welcome treat)
- time spent launching my baby sign language business which was time well spent, but definitely a tight fit into our schedule and routine
- the normal end-of-the-year paperwork for the house, taxes, insurance, banking, career, etc.
This month and a half I’ve been mostly praying a variation on a specific part of the Lord’s prayer- “give us our daily bread-” by praying for manna for the day. By prayer I mean words mumbled with a palm on my face when the newest parenting challenge presents itself, as an alternative to breaking objects out of frustration- not prayers done formally during a serene, set-aside time. This is a reference to the Old Testament when God provided daily food- manna- to the Israelites every morning in the desert, but only enough for that day or that day plus the Sabbath. Similar to my favorite slogan, “One day (or hour or minute) at a time,” I find it comforting to focus on God’s provision for the current needs, even if the future needs and provision are unknown. And, like manna, I’ve had just enough energy and patience each day during this time to compete the bare essentials.
But I think and hope the ‘transition’ period is over and the ‘new season’ has begun.
A few tools I have emerged with, and have big hopes for, include:
- Prayer/meditation/alone time which I strive to capture once a day
- Continue to prioritize my own self-care and non-parenting activities like seeing friends, being involved in several church activities, and learning sign language
- Toy rotation (see this wonderful series on it)
- Rotation of the chore magnets, so that the often-skipped chores move up in priority the longer I avoid them
- Updated homeschool schedule– we’ve been pretty unstructured so far, which I feel is a good fit for the kids’ ages. However, I think a little more structure will help curb the conflicts between the kids and the surprise messes.
- Reorganization of several common “problem areas” of the house, which are no longer functional or which aren’t a good fit for the kids needs right now
- Expanding the use of “toy jail” to include temporarily losing toys that aren’t picked up at the end of the day
- Rehoming my sweet dog, Sahara, with my parents, perhaps temporarily until her hip problems and the kids’ spontaneity aren’t such a dangerous combination
- Playdates or outings- I plan to try my best, but it may not result in many trips because of our need to keep June away from sniffles/coughs, our need to be near to June’s medical equipment, June and Miles’ sensitivity to cold air, and having to work in/around June and Miles’ feedings
- A part-time return to cloth diapering, which I love but I avoided when June was young due to her health; I hope it will help with potty training and the challenges of having three kids in diapers
- Breathing. I’m surprised how often I catch myself nearly holding my breath when I’m stressed. Seems like breathing is good. I’d like to do more of it.