Special Needs in Worship

Ben became an acolyte in 2009, when he turned 13.

Who is here?

The word 'liturgy' means 'work of the people' and in worship we 'work as a people' in prayer and in singing God's praises. We sing, on key, off key, on beat, off beat, and somewhere between here and heaven, angels filter the noises and stream them into pure hosannas and hallelujahs. 

Some of us can already hear that pure angelic sound, the rest of us are still trying to tune our minds and hearts and bodies, so that some day, we too may be able to worship with purity of heart. 

We are easily distracted, and perhaps that is why worship services need to be so long? It takes us that long to tune in and really HEAR, not only the angels, but also God's voice.

It is easier to tune in with the middle-aged lady who sings off key, or with the dad who spends the entire service whispering answers to his three year old's loud questions. Better yet,  it is more entertaining to observe the annoyed elderly lady who is glaring at the three year old. 

Of course you may also find entertainment in observing the ten year old who is kicking your seat, or sigh at people like me who sing too loudly. Your mind may wander to  the harried wife in the back row--is her marriage falling apart, or to the young mom with the baby--is she married?

 Up in the balcony, another kid is pacing the pews. Why doesn't his mother tell him to sit down? And the squealy eighteen month old, whose mother never takes her out, no matter how loud she gets.

And then somewhere towards the left in the back is that  special needs kid, the one who always sits by the aisle, the one who absolutely cannot carry a tune, but who loudly and joyously praises God, partly with his hyper-nasal grunts, and partly with his arm motions, You see, he is pretending that he is directing the the choir from fifty feet back.

By Diane E. Berry

The Ethics of Church

How many noises is a toddler allowed to make, and at what intensity, before his father or mother or grandmother is obliged to take him out of the worship into the hallway or the cry room? And that grumpy teen who did not want to come, the one who doesn't stand when everyone else does, the one who slouches and scowls, shouldn't he be MADE to stand up out of respect?  Or what about the mother who brings cheerios for her baby, and when they leave the pew is strewn with crushed cheerios, which get under your skirt as you slide out of your pew? And did you notice the teen with the mini skirt who goes to the bathroom three times during a 90 minute service?

And then somewhere towards the left in the back is that  special needs kid, the one who always sits by the aisle ... shouldn't he be able to 1. be more quiet 2. keep his hands to himself 3. not say OH NO when he drops his hymnal 4. not push in the communion line?

Tolerance in Church

In church we are all special needs. We are all noisy, wiggly, and our behavior--no matter who we are--will annoy someone. Yes, even if you are the practically-perfect-in-every-way lady, who subtly glowers at the three year old or at the teenager -- your curse is the expectation of perfection, which in God's House -- a hospital for all souls -- is only achieved by the gift of oblivion... oblivion to all but the liturgy. That three year old and the special needs child with autism are your path to sanctification, just as you are theirs.

Special Needs in Worship 

I have been blessed by so many people in church, people who tell me that my son's enthusiastic singing of "For HIS m-uh-uh-uh-uh-ceee en DU-reth forEVer, Alle-LU-i-ah!", or that his waving his arms or the eagerness with which he rushes up to get communion is a zeal for God that inspires them to be equally single-minded and hungry for God.

Our church, as I mentioned above, is liturgical, and while I am not out to bring everyone to attend a high church liturgy at all, I will observe the following things about our particular church that enables my son to stay through the service.

Liturgies have a lot of components that repeat Sunday after Sunday, or that repeat during the liturgical year, like certain songs at Christmas, certain stuff at Easter, etc.  The standard responses at the reading of the epistle and the gospel, the sounds surrounding communion, BEN knows them forwards and backwards and he loves to sing them.

We light candles, we burn incense, we ring bells. There is motion, there is sitting still, there is standing up, there is kneeling down, there is going round and round in procession. We light candles. And then of course there is communion, anointing the sick with oil, waving palm branches, sprinkling with water, etc.  In addition to that there is also the reading of the Bible and the sermon. Those parts are a little more cerebral, but the over-all tenor of the service is that it is for the baby, the toddler, the kid, the teen, the adult, the elderly -- it is for everyone, and as such the service is varied, yet predictable, long, yet with many bright points of expectation for Ben of ... this is when we get to walk up. This is when we get to touch the robe... this is when we get the blessed bread, this is when we process out.   

Ben feels in control because there  is a clear beginning, middle, and end to the service. 

Ben knows the service better than just about anyone else. 

He knows when to say "Christ is Risen", and to respond "Indeed he is risen". He also knows that at Christmas, we say "Christ is born", and "Glorify him". And he knows that on regular days we say "Christ is in our midst", and the response is, "He is and ever shall be". 

Some people are not fond of ritual services. They fear that the meaning goes out of a ritual because it can become rote.  BUT REMEMBER THIS .... for persons like Ben, those little rituals are KEY!! 

Not only can he participate on an even level with anyone else, he actually  participates more than anyone else. And his joy in doing it, brings blessing and meaning to all around him.

At Easter, he says "Christ is risen" to everyone he meets, and it gives him great joy that they respond "Indeed he is risen!" every time!! Here is finally a conversation he can initiate and complete, and it makes him feel part of the community. 

Ben is (I am bragging) perhaps the best, calmest, most obedient and in cue acolyte. HE loves to carry the candles and help the priests, and he does it well, without distraction, because this is what he is all about -- being part of the liturgy -- the great work of the people who worship God. 

In short

In past blogs I have spoken of our difficulties with special needs in church, but I should modify that. We have had issues with Ben and other people during fellowship times.

WE have not had issues with Ben during worship times. 

Yes, there may be some who glare at him--probably are--I used to notice them and feel hurt. I don't any more, at least I try not to. When I can I turn a blind eye to folks who may be annoyed at my son. (After all, they are poor souls who struggle with distractions.) Just like I don't really hear babies screaming (I am just glad they are not mine to deal with :)). I choose to only hear from people who bless Ben, and they are many... very many. 

I never tire of hearing folks tell me how Ben's joy in the service is such an inspiration to them.   

Interacting with the Public

The world is very welcoming to little children with Down syndrome---that is, for those of them that manage to get themselves born. (But that is another chapter for another day, perhaps, perhaps not). Toddlers with Down's are irresistibly cute (as are all little children), but when they grow up, society is uncomfortable with their teenage and adult hood bodies and minds and most people do not know how to interact with them.

Young persons with Down's often feel socially isolated. Everyone else is connecting by play, by talk or in some game that the young person with Down's does not necessarily understand enough of to participate. Nor do most people invite him to join. The person with Down's, however, likes to be around others that are playing, and what better place than to sit on the swing and swing and swing while enjoying the remote company of the kids playing in the sand or on the grass around him while he just swings on the swing set? He is there, somewhat included, and he is having a good time.

So he swings high. He puts as much effort into that swing as he possibly can. It feels exhilarating to be going through the air, up and down, the air brushing his face, and best of all, when he is really high up, he can JUMP, jump off and land on his feet. And then get back on the swing to start the process all over. What better way is there to spend a sunny fall day in November?

But, say parents of younger kids, he is too big for the swing set, and he swings too high, and he cannot look out for younger kids, and they might get in the way of his amplitude, or one of his jumps.

And then there is the issue that he hogs the swing. He gets on the swing and for the 30 or more minutes that he is there, he will just swing and swing, the same way that when he is at the pool he makes an endless series of loops to the water slide, down the slide, into the water, then crawls out, climbs the ladder, back at the top of the slide, and then the delightful 30 seconds of down, down, down, hit the water, and then up the ladder again.

Other kids may know moderation or be pressured by adults to vary their activities from the swing to the sandbox to the slide to the hopscotch. They need to try it all and they need to let other kids onto the swing. AND  most of all, as Barney the Purple Dinosaur told us all... we need to share--and that includes sharing the swing. 

What parents of typical kids often miss is that the young man with Down Syndrome has 15-19 years experience, and that experience tells him that he prefers the swing at the  playground, and that he prefers the water slide at the pool. He doesn't feel a need to TRY anything else, having already tried it all year after year for almost two decades. The swing is it. And that is where he wants to be. The swing gives him the stimulation his nervous system needs to endure the usual social isolation that he often feels--it helps him forget how hard it is to fit into the world, and how difficult it is to break through to other people who seemingly are all connected, something a young adult with Down's never feels, no matter how hard he tries.

Young adults with Down syndrome are precisely that--young adults--no longer kids--or at least on the verge of no longer being kids, just like any other 17-19 year old. 

But in the minds of the public these young adults are ---"forever kids' in the most romantic sense of that term. They are supposedly children in mind and mentality, and as such they get treated like little kids by most people, as if they fulfill people's nascent dreams of eternal innocence. As eternal children, young adults with Down's get corrected and lectured at, and they get saddled with the expectations one would have of a 6 year old kid--- or at least with the sort of talking to that we think we can get away with when a kid is 6: "It's time to let someone else on the swing, Johnny. You have had your turn."  -- That may be reasonable when you are training your 6 year old that the park is for everyone and that there are people waiting their turns, but you would never do that to an adult who was sitting on a swing, nor for that matter  would we-- (not I at least) would never-- do that to our young adult children. We would let them decide how long to do whatever they are doing (like playing Risk till 1 am). We would not interfere with other young adults at church as to how long they throw a football around, or whether they have spent the whole 30 minutes between the church service and the Sunday School playing tetherball. That is their choice. They can manage and moderate their own behaviors, preferences, and spare time.

So also, I would advocate, we need to respect the young adult who is developmentally disabled. He can manage and moderate his behavior and he needs not only his space, he needs our vote of confidence that when he is not doing something that is dangerous or in some way seriously causing discomfort to others, we need not correct his repetitive behaviors or choices. We need to respect the way he chooses to spend his time-- the way we would any other 17 year old's choices.

Some people are not comfortable having anyone that big playing around little children, but by taking that stance, they have made their own world smaller, narrower, and they have barred another human being from being able to enjoy himself the only way he knows how, simply because they do not understand him or trust him.  

I realize I am advocating for the benefits of one, instead of the benefits for the many. I realize that most people are not only uncomfortable with young adults who are developmentally disabled, but actually scared of them because they are different, because they have near adult bodies, and perhaps they have near adult urges, and perhaps they would do something untoward that we would not know how to deal with or stop.... so the thinking is 'best not to let it happen to start with'. 

But where... if I may ask ... where do these young adults (and later older adults) with developmental disabilities belong? 

Like Shylock said about Jews in "The Merchant of Venice", if you poke them do they not bleed, if you tickle them do they not laugh. 

Where do they belong? Where do any of us belong? Who decides?