Merry Christmas

"He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him."
Isaiah 53:2 

It goes, perhaps, without saying that the special needs community (persons with special needs, their families, friends, and service providers) is as diverse as the rest of the world, and as such, the views on how to include, what to include, where to include, etc are as varied as the number of people in the community. 

But it is not just our political, cultural, and religious backgrounds that cause us to differ in our approaches to inclusion, it also has a  lot to do with what sorts of special needs we are dealing with.

My son Ben has Down Syndrome plus. (My nomenclature, offered without apology). His cleft lip and palate, severe heard defect along with various co-morbidities that accompany such physical diagnoses, affect his abilities to hear and to speak. His speech and hearing have over time isolated him enough from even the typical peer interactions that more healthy youths with Down syndrome are able to enjoy, that he has acquired the additional label of Obsessive Compulsive Disorder.

Now, all this to explain where I fall on the special needs spectrum in terms of how my approach to disabilities came about.

I do not have one of those "YOU CAN DO IT IN SPITE OF DOWN's" sons. My son will not lose 60 lbs and suddenly become a handsome body builder with Down's. He will not, through my "Asian mom-style" teaching suddenly become the only kid with Down's in his high school to pass a non-modified consumer math class. Nor will he take a small speaking part in the school play to "prove" that he is really just like the rest of the kids in high school.

It may feel good and natural for parents with extraordinarily talented Trisomy 21 kids to have their daughter with Down's be a cheerleader, or have a son sing the national anthem at a big sports event. I am not discounting the pleasure of such an exhibit (for the disabled person, his or her family, and his or her friends). Some may even find such feats inspiring, and if so... why not enjoy the inspiration?

For me, however, and perhaps, also, for others who are dealing with a more severe and complicated battery of challenges, this 'just like us' mentality, which is demonstrated by getting one exceptional person with Down's to do or act the way typical peers act, is not only discouraging, it is out of reach. 

Not only is it out of reach, the 'just like us' mentality can also, without meaning to, devalue persons with disabilities who will never achieve such a 'just like us' moment. The humanity of a person with special needs cannot/should not be measured by (parent, school, services)'s therapeutic abilities to support a disabled person to perform at near-typical levels in one isolated splinter skill. Not only does such an achievement not 'typicalize' the person with disabilities, over-valuing narrow therapeutic foci runs the danger of only valuing persons with disabilities when they overcome a deficit. It also runs the danger of devaluing other persons with the same disabilities who cannot attain that one splinter skill at the same levels of performance. 

My humanity cannot, indeed should not, be evaluated based on the skills sets I have been fortunate enough to acquire, given my physical, emotional, intellectual, and spiritual gifts in life. Any one of my gifts can be 'snuffed' out in a moment of misfortune, no matter how gifted I might have been at birth and on.

My humanity, your humanity, the humanity of all persons, including those who -- to a greater degree than most of us-- struggle with physical, intellectual, developmental, and emotional challenges lie in their being born human. Our respect for the value of all human lives must begin and end there, regardless of whether they can walk or talk, regardless of whether they can regulate their emotions, count to 100, or feed themselves.  

Life matters, and yes, we all matter, but some of us are more at risk for not mattering, namely those who have been mistreated, misunderstood, ignored, and devalued. 

He came to us as a little child, humble and helpless. There was 'no room' for him at the Inn. He was not valued, welcomed, or noticed.... because ....

"He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him."

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.