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.   

Welcoming Persons with Special Needs in Church - Part I Youth Groups

Ben on the banks of the Severn River, USNA, 2013.

Have you ever been alone, really, really alone in a HUGE CROWD of people who are having a blast? Many persons with special needs live like this every day, feel like this, no matter where they are at, even in Church youth groups.

I have been musing for a long time on what it means for the church to include persons with special needs – or for that matter, what it REALLY means for the Church youth group to include everyone.

This is not an indictment of my church, which does as well as any other church on this issue. This is a commentary from the 'inside' to people on the outside as to a few ideas of how churches can include special needs persons in their activities without singling them out for an annual 'special needs event'. 

(Special needs events, while useful as fund raisers and for raising awareness, are in my opinion sometimes even damaging. They give people who attend a sense that they -- compared to others -- have 'done' something for special needs, but when the event is over, they, along with most everyone else at the event go home, FEELING GOOD, while persons with special needs are just as segregated and ignored as ever).

Today’s church is very segregated. We have age-segregated Sunday School, and then we have support groups for singles, for married couples, for college students, for young professionals, for young moms, for the elderly, or for those recovering from addiction, gambling, divorce, illnesses, etc. Much like businesses do it, churches ‘target’subgroups of the population and then ‘sell themselves’ to that group. That is how churches grow, by appealing to splinter groups with needs in society.

Nothing wrong with finding ways to get people to go to church, don’t get me wrong, I am all for that.

The problem with the age, ability, interest group mentality is that it often leaves out persons with special needs, who often when it is all said and done are so uniquely alone that they would comprise an interest group of ONE.

Some churches do successfully reach out to persons with special needs and do adult special needs events or youth special needs events, and that usually works for subgroups like persons with Down’s who are at about the same ability, or other persons who comprise a decent sized group, who have the same abilities roughly.

But for most developmentally young persons or adults with special needs, not only are there not enough of them at most churches to do a class or an event just for them,  more to the point, they are SO segregated most of their lives that what they really yearn for is not another once a year special needs event where they are center stage for a few minutes. They really just want to be part of a larger group. They don’t ask much; they just want to be included – i.e. recognized as human beings, the same way anyone else would.

My son, for example, LOVES to be included in everything, but because he has ‘needs’ that are … ahem… ‘special’, there are many things he cannot participate in either because they are too mentally or physically demanding and he does not have the capacity to keep up, or because they are too loud and too stimulating for his ‘autistic tendencies’. Recently he darted out of such an event at lightening speed. Something triggered him in the midst of the excitement of the young people around him --- something told him that everyone else was loud and laughing and having a good time and that he was SO not part of it, he just had to get out of there.

So what does it look like to include persons with special needs in our churches? 

1.    Less age segregation, more integration of everyone from the 90 year old with the walker to the 3 year old who can just about play Candyland with some proficiency.

2.    Center an ALL inclusive activity around

a.    Eating, and letting the person with special needs bring something he can share or serve to some of the people there.

b.    Simple dancing  (like Greek line dances) in a way that wheelchairs  or persons in chairs can feel part of too

c.    Fun singing (everone can sing)

d.    Various games, some of which anyone can play.
(Uno, Bingo, sack races, Monopoly Jr., Sorry) (Not super competitive loud games)

e.    Prayer time with candles and a quiet atmosphere

f.    throwing balls (big, soft, easy to catch balls)

g.    writing with chalk on a sidewalk

h.    baking cookies for college students far away

i.     writing cards of thank you or of encouragement.

j.    Clean up projects

k.     Raking leaves in the neighborhood

l.     Christmas caroling

m.  A simple nature walk

n.    Serving at the local food bank

o.    going to a G rated movie

And stay away from really competitive acitivities that get kids hyped and make kids who cannot keep up feel left out. Focus more on caring and compassion, on making room for those who do not ‘naturally’ fit in as well, and challenge the more gifted young persons of the congregation to ‘invent’ ways of including those who don’t naturally fit.

Make it structured (youth with limited communication skills are often lost in a group, and even more so if they perceive that everything around them is loud and chaotic).      

Try to find ways for the youths with special needs to ‘lead’ once in a while, be that showing everyone the way to where they are going, serving part of the food, or calling everyone to order with a big whistle.

Make it short enough that there is a clear end point to the activity, where youth with short endurance can leave without feeling that they were pulled out in the middle of something that everyone else got to continue in. Once they are gone,  typical youth can linger longer as they choose.

And one thing Ben’s teacher  at high school recently suggested to me: ‘front load’ the youth with special needs. I.e. tell him and his caregivers in advance what the topic for the evening is, so the caregivers can help the youth with special needs participate and feel included right from the beginning of the event. For example, if a person, like my son, communicates through a communication device, the device can be programmed in advance with 2-3 things he is going to say about the topic, so that he actually has a living chance to feel like he is talking with the rest of the group.

Youths with special needs BELONG in our churches, and if they belong, we need to make room for them. 

Making that room is difficult because it requires forethought. It is not enough simply to assert that Ben is welcome there 'any time', when the fact is that most activities are not inclusive enough for him to participate in, and also, he cannot be there without a support person to help navigate his emotional mayhem if things get loud and he does not understand what is going on.

In order for Ben to even begin to function in a group setting, we/I/the leadership have to make sure that nobody is too loud (or he runs away and hides), that we have ways of making him feel that he contributes to the group (or he will think that every time anyone laughs, they are laughing at him), and finally, I have to pick only events where there is no overt competition or hype, or he simply cannot handle the experience. (This of course means that he cannot come every time, but perhaps we can have a few events every year that are closer to his needs where he can come and join the group as an equal participant). 

Ben does best when all ages are included, that is, when the atmosphere is collective and collaborative, not competitive. And seriously, I think that is more so what the church is about than it is about competition. (IN fact, WHEN should church ever be about competition?)

I wonder, for every Ben who cannot function in a competitive environment, how many young and otherwise ‘normal’ boys and girls likewise sit and cringe because they feel left out, and frankly embarrassed at their inability to fully participate in the games and activities  that are super fast and super loud.

The Church is a house of prayer where we worship God corporately, be we young, old, big, small, able or not able. That corporate spirit should permeate every activity the church undertakes – that sense that we are all here, we are all welcome,  and there is something for all of us to do to feel part of this family. 

It is not enough for me to SAY that someone is welcome. If a person is on my doorstep and I tell him he is welcome to walk in, but I don’t gesture, open the door wide, show him a seat, and offer him, at a minimum, a drink, my actions are in fact belying my words. He is not really welcome because I have not made room for him.

 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.' Matthew 25:40

Special Needs and Worship will be the next installment.

Benjamin, Music, and the future

What is it about Disney movies and their songs that make us want to sing along? If you have ever seen this hillarious spoof from Navy Baseball and enjoyed it...

...you should add to your list of fun video clips to watch >>Tangled with Ben singing "At last I see the light"<<  I am referring to the music in this scene:

I absolutely must record and post that video one of these days. :)

You see, I used to find it kind of funny to watch Ben 'sing' along with music he adored. He sings about one note, he is loud, and he is totally animated and swallowed up in the action, but today as I walked in on Ben and that touching scene in Tangled, my eyes were filled with tears. Here is a scene depicting a person who has finally gotten to see that which she has always dreamed of--and that at the same time that she is about to discover that a person she loves, loves her back. This is what we, at least in the western world, have for centuries depicted as the height of life: beauty, goodness, and meaning all at the same time, in company with persons we care about. It does not get any better than that. It no longer struck me as funny, but it seemed to me that he was not only entering into the song and its words, but that those moments are for him not only enlightening but soul filling. When Ben sings, he is the happiest of all.

I wondered what it means to him to see the light, what it means for him to experience the familiar beautiful music, to sing along with it. -- I wondered what happiness and light means to him long term. He looked happy in that moment, very happy, and he has the blessed lack of self-consciousness that when he is happy like that, he just sings and moves, and he doesn't care one rat's tail (or rear end, for that matter) what you think about his expression of happiness. And I wonder what I can do for him to help him live through many such moments.

You see, I am busily trying to figure out (as much in consultation with him as he is capable of) what his future looks like past high school, how to obtain guardianship of him in 3 short months when he turns 18--all those long term decisions that will largely define his life far into the future, including after I am gone, if he outlives me-- and even if he does, where will he live and how will he live when I am too old and do not have the strength to take care of him. 

This summer I have 3 tasks

1. apply for and go to court to solidify the guardianship (pricetag $500 to $2000 depending on whether I decide to revise my will at the same time).

2. apply for an extension of his medicaid so it does not lapse when he turns 18.

3. Apply for (and likely get denied) the Medicaid waiver for physical disabilities for Ben -- likely he will have to stay on the waiting list for the one for the developmentally disabled.

But money and legal issues aside, what does his future look like? Job wise, dependent care wise (someone taking care of him while I work), and otherwise?

I see him with music, and I think music is one of the things that makes him the very happiest, and music is going to be a big part of his life, I hope.

In church, he would LOVE to sing in the choir. In fact, a week ago, when I was at choir practice, I was trying to figure out why the basses sounded so bad, when I realized Ben had snuck up there and was 'singing' with them. The basses did not have the heart to tell me to remove him and put him back over in the pews to watch. When I did remove Ben, he was more than mildly disgruntled. He loves to sing. 

Also, in church, when he is not an altar boy, he has his copy of the director's score, and he waves a pencil in beat to the music every week. Thankfully the Orthodox service is mostly sung, so for all 90 minutes, he can 'direct' most of the service from his pew. His sense of tempo is good, and his direction (though I know it distracts some) is his way of singing, and he does it with all his heart. He so totally copies our choir director's motions, all the way down to how Richard used to cut off the diction of a 't', or hold a note while the decons chant their litanies. He can follow his own director's book because he knows how to read, and of all the people I know that go to church, none know more precisely where we are in the liturgy than Ben.

In the car, I am always tuned to KVOD (unless they are fund raising) and Ben beats to Mozart, Beethoven and Offenbach everywhere we drive. At home, his favorite movies are musicals, and you should see him STEP IN TIME when he watches Mary Poppins. The floor is rocking. He really gets into it. 

We have taken him to live concerts, to musicals, to theatre performances, but I actually think, if I ever dare go outside the box and figure out where to bring this about, that he would love Karyoke, he would love acting and singing in a play, he would love being in a band and in a choir. But that requires shattering boxes and stereotypes of what I normally do and don't, what school and other places will and will not allow, etc.  It requires boldness, asking, trying, as well as innovation to make it happen -- music for Ben, at least some of the time.

In the meantime, I am left with the memory of his singing this morning: his radiant face entoning "I see the light", and wondering if I will be able to help him increase those precious moment of beauty in the life plan I am trying to orchestrate for him.

To wrap up. Ben and I recently saw the latest Disney, Maleficent. And while there is an academic critique that could be made of its details, plots, and where it falls short (academics can always find such -- and it has been said that there is a reason that nobody ever raised a statue to honor a critic) the one thing that movie really got right was 'true love'. The thought that it was not the young man's kiss that restored her, but the kiss of a loving mother (mother figure -- not even her real mother) seemed so very true to me. Romantic love can be fleeting (or for some it can last) but the love of a mother for her children is true and enduring.