Let me start with the beginning. We went to a very supportive church in Kalamazoo, Michigan which went above and beyond the first few years while Ben was in and out of the hospital. So many people took our three older kids in (kids ages 2,4, and 7 at first) ...for the day... overnight... etc.
Ben got well enough, around age 3 or 4, to actually come to church when it was not flu season, and he was in the toddler nursery and they loved him there.
When we moved to Colorado Ben was 7, and the church we ended up in was/is liturgical, which was an excellent fit for Ben. The routine of the liturgy is amazingly soothing for him. The sermon/homily is not as long, so he sits through that just fine, and all the bells and whistles (incense, icons, prostrations) -- worshipping with all 5 senses-- works really well for him too. He can be part of so much of it, and he likes it. Ben also is an altar boy now, has been since 2009, and he does very well at it, and likes working behind the altar, carrying candles, helping with communion, handing out blessed bread. It is all a great fit, and I am grateful for a church that does not require his intellectual articulation of his faith in order for him to be baptized or have communion.
Fellowship and him being within the church was also easy when he was little and cute. He was there, playing with whatever group of kids were of his age and mentality, and it worked. I did mention, previously in this blog, that kids have grown up past him and that he has gone through many mini-generations of friends at church, but at least he had friends.
I believe our church really wants to love and include Ben. The biggest problem is that nobody (including me) really knows what that looks like.
As Ben has grown older and looks older (he has to shave now, about once a month or so) he is not so cute in the eyes of people, and for those at church who did not 'grow up' with him over the past 10 years that we have been there, they are not so sure about him --- not on the playground with 'littler' kids, and not in general as to his responses, or lack of responses, nor just with his trying to fit in and hang out.
It's not just church, it's just the world in general, but I find it most painful to deal with at church, perhaps because one has high expectations of the Body of Christ, and so one thinks that people 'ought' to understand or have some enlightened sense of compassion for Ben, which most of the time people don't. They have their own little worlds and they operate in those worlds, and when Ben is in the way or seems not to fit, they mark their boundaries-- most of the time to the exclusion of Ben.
I think society explains Down Syndrome as basically a mental delay, so that Ben is understood to be mentally about 5-8 years of age, with 5-8 year old emotions, and so the impression most people have is that he can be treated like he is 5-8, he can be expected to obey, share, etc... and I have mentioned all that before.
For Ben (and I cannot speak for other teens with Down's) that does not really work. He is 17, not 5. He has more complex emotions than a 5 year old and he understands the rules and knows the behavior expected of him better than a 5 year old. What he has is a mental processing deficit that doesn't make connections that sometimes even 5 year olds would make.
In addition he has a huge disadvantage in that when he gets in conflict with a person, he cannot verbalize his position, his emotions, or his anger because his expressive language skills -- due to cleft lip and palate, due to a moderate hearing impairment, and due to Down Syndrome -- are about at a two year old level.
As a result, when he is in a situation of conflict (like someone telling him he is too old to play on the playground, though he knows he has a special permission to be exempt from the playground rule) he will resist because he knows he is right, but he cannot say why, and usually he will lose because the person who is telling him ______________(to leave, or to return an item that is thought not to be his, or otherwise to comply with a request) wins the verbal combat. He then gets upset, and he has hit people in frustration, though most of the time he just runs and hides somewhere in a corner where nobody can see him.
I understand the frustration of an adult who is trying to keep order somewhere, who doesn't know how to relate to a kid with special needs, that is hard. What I do not understand is escalating a situation with such a kid when the kid is not really doing anything that is immediately harmful or threatening to anyone. (Of course if there is immediate risk or harm, intervene at all costs).
With a kid with special needs... when in doubt, show mercy. (I would almost use that as a guideline for dealing with all kids, but CERTAINLY, I would use that for kids with special needs.) Why would I want to risk upsetting a child whose emotional apparatus I do not comprehend? In that case, why not call the parent and get a little help on the issue, rather than risk a situation you don't know how to manage on your own... or risk a relationship with a kid you don't know well enough to really engage with to start with.
That would be my biggest frustration with church --- the number of people who are willing to engage in unpleasantries with a kid with special needs, merely in order to enforce a rule or uphold what they find to be a 'higher principle' -- and who do not think of the emotional consequences for the kid.
I think that is worse in church than it is 'on the street', simply because church so often becomes this high-minded quest for all the correct principles, for the perfect ideology, and once that ideology has been fleshed out in detail, all one has to do is follow it --- and to 'hell' (pardon my French) with persons.
Persons with special needs do not fit all these neat boxes we can set up for what kids (or for that matter) people) OUGHT TO DO: For every box you have, be it an age box, a noise limitation box, a no-squirming in the pew box, a MUST STAND at certain times box, a don't take too much food box, a don't hog the swing box, and worst of all, the no hitting box... all these things that we OUGHT to be able to do, the kid with special needs and even the adult with special needs will not always be able to fold up and crawl into the box. And when he fails to fit in the box, the social cost to him is high as there is great disapproval from the majority of people, and with that disapproval comes the sense that ' this is a simple box to get into, even HE ought to be able to do this .'
And then there is the parent -- and that is me. The parent does not always take it well when you decide to take on her child---especially not when he was doing no harm. Mom's attitude is that any time he is not harming something or someone, and if he is otherwise having a good time, -- pardon me, but 'screw the rules!!'.
Momma Bear comes out.at you--especially if her kid ran off and hid after you decided to escalate an encounter with him.
Remember ... and I just read this in a book called Special Needs and the Church.... remember Mom spends all her time fighting the school system, the social services, the right for junior to participate in all sorts of age segregated stuff, so when she finds junior thwarted at Church, she goes on auto-pilot and brings out all her fighting skills that she uses for him in the rest of the world. Yes, she OUGHT to do better in church. Yes, she ought to be patient and kind and understanding... but she too is exhausted, tired of the same old same old ever fighting for her child's rights to live and breathe around other human beings, tired of always being on 24/7 call because unless she is near junior most of the time, something will happen, and someone will think junior ought to be able to do something he cannot do, and as a result, she will WISH she had been there and not taken that ten minutes to herself to chat with a friend while junior ran off.
No, it's not usually that bad all the time, but these things come in seasons, and they come with certain personality types who for one reason or another think that mom isn't doing enough to keep junior reeled in. You know it with typical kids as well. There are always people who think you don't do what you ought with your kids. Multiply that by 10 when it comes to a developmentally disabled kid who might slug another person (yes, I agree it's unacceptable, but it happens) or who might accidentally expose him or herself because his social skills and sense of where to scratch what is not particularly heightened.
Mercy !! And I will end with this diagram (Carolyn Vance's) .Text is from Shakespeare's Merchant of Venice.
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