Special Needs and Church -- the Other Side

Last time I talked about special needs and persons in the church.

You may have noticed that I discussed how a few persons know how a kid with special needs OUGHT to behave (a few boxes he needs to fit into) and you may have noticed my inconsistency in discussing this in that I basically asserted a few things where I felt that people in the church 'ought to know' how to respond to the kid with special needs.

And of course they don't. We get our experience from persons with special needs by being around them. I did not know how to insert a naso-gastric tube into Ben's nose and down into the stomach until I had Ben. I had no idea what a G tube, a J tube, or a GJ tube was. I didn't know what gastric reflux could do to his lungs, I had never seen a pulse oximeter, nor did I know the difference between an ICU or an NICU, what was involved in recovering from open heart surgery, or which sounds are harder to hear for a person who is hearing impaired.

If told that someone had an IQ of 45, I did not know whether the person could talk, walk, or even sit up. ... etc.

I mentioned in a previous blog that a couple of my family members encountered a small group of developmentally disabled adults at a museum somewhere abroad and that my two family members felt awkward and ill at ease because they had no idea how to relate to this loud group of drooling, spastic, unusual looking persons, and I agree. When we don't know these special needs kids or adults as persons, all we can see is the grotesque... like the malformation of a skull or a face. In Ben's case the crooked nose, the disformed lip, the 'retarded' look, the head always at a title to the left, his talking to himself (vehemently!!)... and that 'facade' of differentness can be, not only intimidating, but down right scary. What COULD he do, to me, to my little child, to anyone? If I (as a stranger) try to engage him in conversation,  what will happen.. besides, what will we talk about? And then when I (again as a stranger) DO engage him in conversation and find that I only understand about 3 out of every 25 syllables he strings together, how do I end the conversation? or do I? Or worse, if when I try to talk to him, he gets into one of his monologues and vehemently goes on and on and on, and I don't know if I made him mad or if he is happy. I certainly don't know what he is saying and I feel awkward both staying and listening as well as leaving... :(. It's not easy, and social situations where we don't feel at ease are situations that we prefer not getting ourselves into any longer than we absolutely must. I .e. a large number of people simply ignore Ben  because they don't know how to engage him meaningfully. They may or may not have tried, but it is definitely outside their comfort zone to do so--- that includes people who engaged him when he was little and cute, but who at this point simply do not know how.

The issue lies with 'meaningfully'. What is a meaningful conversation/engagement with another person at a large social gathering? What does it consist of? What qualities would we ascribe to it so that we can agree that it was
1. peaceful
2. mutual
3. enjoyable
4. and perhaps even inspiring.

Ben gets very agitated in conversation as he monologues (which is mostly what he does. He does not really know how to take turns in conversations, and it is hard for YOU to take turns with him because often you do not have a clue what he is talking about).... so encounters with him are not 'peaceful'. He may even look angry to you and you fear you have upset him.

I have already covered mutual. He does not know how to take turns (unless you are playing a board game with him, which is probably the most meaningful thing you CAN do with him), so it's not mutual.

Enjoyable and inspiring? Probably not unless you enjoy a challenge, or unless you can see how unique he is, learn from his uniqueness and perhaps even just sit in companionable silence with him. Some people are good at that, most of us are not.

Long term, I think most people give Ben a hug or a high five. They were glad to see him in church, and they move on, they did their 5 seconds for Ben today and all is well. And I am grateful for that acceptance and for his brief encounters with people who acknowledge his existence and who take the time to greet him. That is important. -- Is it enough? Well, for Ben, probably not, but that is where he has family who will give him a bit more time of day than most people out there.

Ben has a few people he gravitates to who know how to interact with him and perhaps that is no different than the rest of us. We all have a select few really good friends, and most of the rest are acquaintances, whom we pass, and occasionally we talk more but most of the time it's hi, and then we move on.