“The touch, the feel of cotton…..the faaaaabric of our lives.” So goes an old cotton commercial. The idea here is that we are all united by our common use of cotton in multiple areas of life. My cotton may have come from Wal-Mart, yours may be Land’s End Pima, but hey- we all use cotton.
Not too long ago, Caroline posted on her personal blog about a New York Times article that highlighted the growing difference between the upper and lower classes in America. There were interesting statistics that showed how the differences were no longer just about how much money someone had or how fancy their car or house was, but that there have been changes in the very fabric of people’s lifestyles and values that serve to widen the cultural gap.
For example, 50 years ago the rich boy and the poor boy may have both spent free time tossing around a baseball in their backyard- something that could be a point of connection. Now, the rich boy may spend free time practicing with his super elite baseball ball team or playing video games on his personal x-box on his personal TV in his personal bedroom- while the poor boy spends time waiting for his parents to pick him up from a public afterschool program so that he can be dropped back off at home to take care of his younger siblings while mom goes to her 2nd shift job. The tragedy of this is that the two classes have less points of connection, so they feel more comfortable alienating themselves from each other, causing a host of other social and economical problems that we’re not going to talk about here.
With this example in mind, I think that there are some similar cultural rifts that can occur between families that have kids with special needs and those that do not. There is often a bond between families that DO have kids with special needs, and usually that is because they share experiences that are not shared by the general public. People’s “special needs” stories become somewhat different when we start looking at the haves and have nots in regard to insurance and flexible spending, but the bottom line is still that my child has xyz needs and yours does too. You can skip a lot of explaining when hanging out with or talking to other families that have kids of similar abilities, and that takes away some social strain.
So what’s the problem with clicking together with groups of similar people? You can learn a lot and give and accept support from families that are going through similar struggles. There are very valid reasons to be plugged into a support network like this. We have to be careful, though, of creating the same types of gaps we see in the economic realm that start creating a mentality of “us” and “them”. It’s the “us” and “them” mentality that has furthered problems such as racism, sexism, ageism, and I-don’t-like-your-denomination-ism.
A small part of the problem is that friendships and bonds are now based more on possessions and unique, income dependent experiences, than they used to be. While there was a time when the upper and lower classes may have both been able to share similar feelings about family and religion, we are now seeing upper class families delaying things like marriage and children, leaving them having less in common with their age mates in the lower economic bracket.
In the past, more bonds were formed over relationships and values, while now it may be based on whether or not you own a Kindle or a Nook, drive a Lexus or a Chevy, go out of town for vacation, or watch cable or direct TV. When you have a child with special needs, your possessions and experiences may be different because your income is probably going towards things like special food items, adaptive equipment, therapy sessions, tutoring, or adaptive sports rather than an annual trip to Disneyland. Your time is spent working extra hours on homework assignments, taxiing children to (non-negotiable) extra curriculars, doctor’s appointments, and the like. You may not be able to make it to all the church events because your child is immunocompromised or has a special medical routine that occurs everyday at a certain time. You may opt out on certain play dates because it’s just too hard to pack all the “stuff” that it takes to get out of the house for just an hour. These are all circumstances that can cause rifts between “us” and “them”.
Speaking to the special needs community: we need to make an effort to connect with those that are different from us. You know, the “normal” people. If we don’t, they will never have shared experiences with us, and they will continue to live in a state of being where special needs are “unknown” to them. It is a pet peeve of mine to hear those in the special needs community being offended at how other people “don’t get it.”
Let’s say I start talking to you about rocket science and then become offended at the fact that you “don’t get it.” Oh wait, that would be unfair, wouldn’t it? (Unless, of course, you are a rocket scientist.) Yes. It would be unfair for me to expect you to “get” things about a subject you know nothing about. The only way I can help you “get” my point of view is to share it with you and allow you to experience it with me. I have to gracefully let thoughtless comments slide until I know that you have become educated enough to understand what is or isn’t considered insensitive or offensive. And I need to not put you off by seeming snobby and wrapped up in my own situation. Because, really, we’ve all got problems. My problem may be that I have to lug a wheelchair everywhere I go, but your problem may be that your grandmother died last week or that beneath your beautifully made up face you carry emotional scars from being a dork in middle school.
Can We Walk the Road Together?
Speaking to the non-special needs community, here’s what you need to know. That mom with the kid on oxygen? She may seem aloof and unfriendly, but that’s probably because she doesn’t feel like she can connect with you. Or she may not feel like she can leave her child to go make adult friends. Or she may want to leave her child but has no skilled caretaker to leave him with. She may turn down your invitation to the “moms” group, but invite her anyway. Every month. Because maybe, 2 years down the road, she will feel comfortable leaving the house, and when that time comes, she needs somewhere to go. Maybe you should offer to come to her house instead.
Don’t be afraid to invite the kid with latex allergies to your birthday party. But also don’t have latex balloons floating all over the house. Find out if the food allergy kid just has to not eat the offending food, or if it can’t even touch their body. Usually parents of kids with food allergies are happy to bring their own treats. If you know what you are doing, you can make an alternative snack for them. That’s always cool. If you don’t know what you are doing, then please don’t try because it puts the parent in the bad place of having to risk offending you or allowing their child to eat something that may have been improperly prepared.
Are you afraid to invite the kid in the wheelchair to your play time at the local bounce house? You might be surprised at what they can do without being able to stand up. But don’t expect us to be able to do all the same things in all the same ways as your family. We have issues to deal with that make us prioritize our time in a different way. We also don’t want to be the kid in high school that stopped getting invited to the parties just because her mom said she couldn’t go. We still want to be invited. If we can’t go, we’ll tell you. And try to show us that you wish we could join you without making us feel bad that we can’t. “We’ll miss you, ” is much better than, “When are you ever going to come?”
There may be some families that genuinely do not want to participate in activities with “normal” families. This may be because they have had such profoundly life changing experiences that they honestly don’t want to hang out with a bunch of parents who talk as if their biggest problem is whether to make the felt flower hair bow or the super cute baby leggings they saw on Pinterest. They probably don’t have the time or inclination for shallow conversations and maybe their baby doesn’t have legs to wear leggings on. So feel free to discuss your hobbies and interests, but please don’t talk about them like the future of the world hangs on your crafting decisions- because it doesn’t. And as a side note to the uber sensitive special needs parents, please remember that if you had different life circumstances, you might be using your spare time in equally creative ventures. It’s not what the other parents are doing that has you bothered, it’s the amount of importance they assign to it. And we all assign importance to the wrong thing from time to time, so let’s let that slide. And if you don’t like to hear about the “on track” developmental accomplishments of your friend’s children, it may be a good sign you need to examine your own grieving process. We need to be able to grieve our own losses while still being able to be happy for the joys of others.
In the news article I mentioned at the beginning of this post, the given solution for the economic class gap was for people of upper classes to intentionally re-connect themselves to neighborhoods and activities that weren’t so status based. We can boil it down to the ability to connect with human beings on the level of relationships rather than possessions. Everyone on earth is someone else’s child, mother, brother, cousin, husband, etc. We have universal experiences that trump what kind of clothes we wear or what kind of car we drive. We have universal feelings that trump what kind of food we eat.
In the Bible we find Jesus reaching out to rich and poor alike, because he knew that inside we all have the same desires and needs. We are all creations of a great Creator, and the most important things we have in this life are relationships, both with our God and with our fellow human beings. Relationships truly are the fabric that weaves our lives together. If we can get past the differences our worldly systems and circumstances have presented us with, we can find true fellowship, one with another. And that, my friends, brings part of God’s kingdom down here to earth.