Adam's Pew

Following my post this morning on the story of Adam Race being banned from his parish, I was alerted to an organized response already underway called Adam's Pew.

You may follow the link above or read the excerpt below.  Part of the story that I did not include in my blog  earlier today hinted that something was underway already in the way of support for the Race family. One family, the Rupps, brought their autistic daughter from St. Paul to occupy the pew where Adam normally sat. 

Libby Rupp reportedly said that she feels that the case against Adam is mostly about not understanding autism.  While she said that she can understand why some people might be uncomfortable around Adam, she never felt in danger around him. 

I have to reiterate, having been around people with autism for a number of years now, that much of what is needed is simply understanding, and perhaps a shadowing ministry in the parish.  For going on four years now my wife and I have provided a similar ministry, although it is for providing religious education for children with cognitive disabilities, including autism, rather than shadowing at Mass.

Indeed tolerance and understanding will go a long way, and it is true that autism does not typically manifest itself as a small boy flapping his hands and talking quietly to himself.  Sometimes people with autism are loud; sometimes they urinate on themselves or in a public place depending on their severity.  Sometimes they hit others and sometimes they bolt and run.  I've seen it all, and I've seen it all in my son too.  Nevertheless, I want to welcome people with autism at my parish.  I want it to be known that kids with disabilities can serve alongside me at the altar--and it's true that they do even now.

Last Sunday before Mass started I noticed a child in the congregation on the very back row wearing what looked like sound-proof headphones.  She was having a royal fit as we were getting started and she continued to scream right through my homily, but funny enough people didn't seem to be bothered and neither was I.  God must granted us all a bit of peace.  I'm really glad that child was there.  Word has gotten out that St. Thomas More parish is autism friendly--I pray we keep it that way.

Here's the excerpt from Adam's Pew:

Adam's Pew is a response to the highly publicized May 2008 story in which Adam Race, a 13-year-old boy with autism, was banned from his church.  Adam’s parents received a restraining order from their home parish of 12 years.  Every Sunday for years, his family sat in the last pew.  This pew was reserved, at Adam’s family’s request.  The arrangement lessened any disruptions Adam’s symptoms may have produced.

When news of the restraining order spread, several families of children with autism pledged to occupy the pew every Sunday until the Race family was restored to their faith community.  It will take most of the families several hours to reach the Church in the small town of Bertha, Minnesota.  Currently, the restraining order remains in effect and the Race family will soon enter into mediation.  Their goal is to once again become welcome in their home parish.

Adam Race’s story has inspired passionate discussion among countless people regarding the various facets of this case.  Nationally and beyond, many families are not attending church because they don’t feel welcome.  The story’s quick spread points to a profound need to establish an atmosphere of welcome and acceptance in churches everywhere.  Thus, Project: Adam's Pew was created. 

Without much planning, effort or cost, Project: Adam’s Pew is a simple tool for church leaders.  Through broadening awareness, a church can reach out to those feeling previously unwelcome and those hesitant to attend church services due a family member’s disability.  Project: Adam’s Pew is not meant to replace or compete with other inclusion programs developed by many denominations throughout the country.

Comments

[Gabrielle]

dd, I've never left such a long comment anywhere, but here goes: after reading your previous post and the comments, and now this post, it seems to me that if people choose to concentrate on "rights", then there are "rights" on every side of this issue - the rights of the child, of his family, and of the members of the congregation.

If we choose to look at this story concentrating on charity, again, we could say that the parish lacked charity for the child and his family, but also that the family is lacking in charity towards their fellow-parishioners, if it is true that they are endangered.

I find his mother's comments and actions on the subject of endangerment to be contradictory. She readily admits that they have to segregate him at home, using separate study rooms, so that her other children can have some peace and quiet and not have their belongings broken, yet she refuses segregation elsewhere to protect other peoples' safety or property. She also admits that they sometimes have to physically restrain him at home, yet won't admit he is a danger in the church (or in someone's driver's seat).

She also refuses the church basement feed option, saying that's not the same "status" as going to Mass, etc., and that he needs to fulfil his obligations as a Catholic, and that's why she's doing this. But I don't think (correct me if I'm wrong) that any Catholic with cognitive challenges is committing a mortal sin (as she says) by not attending Mass.

But you know what bothers me most about this particular case? Has anybody asked the child what he would like? His mother says that his favourite place in the house, apart from the kitchen, is their prayer room. I imagine this is for a very good reason. Is anyone concerned about this child's spiritual life, his communion with God, or are they just concerned with dragging him to church because it's his "right" to be there? If my child were autistic and prone to anxiety attacks during Mass, but loved being at home in the prayer room, I would stay with him in the prayer room on Sunday morning while the others were at Mass, have a family member bring Holy Communion to him in a pyx, and attend another Mass myself later. I have a feeling that this child is going to be used as a Catholic poster boy for autism, and nobody is sincerely concerned about the most important thing, which is not fellowship at all costs, but where he finds himself in God and God in him; in his prayer room.

[Christine]

If my child were autistic and prone to anxiety attacks during Mass, but loved being at home in the prayer room, I would stay with him in the prayer room on Sunday morning while the others were at Mass, have a family member bring Holy Communion to him in a pyx, and attend another Mass myself later.

So you are saying, then, that this woman with this severely autistic child, who has limited resources and no outside help, should just buck up and go to Mass twice and get over the exclusion of her child? It is easy to sit back and say that's what you would do - but I know from experience that when Autism hits your family, the grief and isolation can be utterly exhausting and profound. Trust me when I say that anything you think you would do is probably NOT what you would wind up doing.

For the record, I don't support the media circus that the Rice family has chosen to create. However, as the mother of two autistic children who has encountered ignorance within the walls of a Catholic church and chose to work it out privately with the Pastor, I feel I'm in a better position to explain why this woman is probably feeling this way.

Autism is a disorder of isolation. Every day, I walk out onto my front porch and know that all the families around me send their children to the normal school assigned to the neighborhood - while two short buses come to my home. One takes my older son to a county special needs school for children with more severe impairements. The other takes my younger son to a different neighborhood school where they've begun an "inclusion program" where there are two teachers per classroom. He is barely impaired and needs little support but he'd be lost in a mainstream classroom.

When you have to run around delivering your child into "special programs" and specialists who aren't paid for by insurance because autism isn't covered, while the regular people around you get to go around doing regular things and being minimally inconvenienced by their lives (all the while complaining to you that THEIR lives are so complicated)... after years and years of this, it begins to "get" to you. You crave normalcy. You want SOMETHING simple that everyone else has and takes for granted.

A lot of people assume that the Church, that is supposed to be a place of unconditional love and acceptance - where you would expect tolerance and people following the example of Christ - is the place they can try for that slice of normal.

When I tried to enroll my younger son into a regular religious education class at our parish (after trucking my older one into the city for the "special needs" program relgated to a delapidated city church in a neighborhood quickly turning ghetto), I signed up to be an assistant in the class with my son. When I told the teacher that he had Asperger's syndrome, she smiled and said it was no problem. Four days later the director of Religious Ed called me to say that the teacher "couldn't handle" my son (even though he had done NOTHING wrong and was well behaved) - even though I was going to be in the classroom - and that I needed to switch him into the special needs program at the ghetto church.

Not given a chance because of his label, after only one week and no incidents in the classroom.

A two hour, tearful meeting with the Pastor got my son back into the regular program, after a kindly Nun also, after meeting my son, said that he had no business in the special needs program. He did beautifully in the regular class - with his non-disabled friends from school - without me being in the classroom.

But that ignorant cathecist still has a classroom.

I do not know what the answer is for the Rice family... I pray that God's grace helps heal what has happened in that church. But as someone who is not affected by autism, Gabrielle, please don't suppose what you would do in this woman's shoes.

Autism is more common than AIDS, Cancer and Diabetes combined. 1 in 150 children have autism. 15 years ago the incidence of autism was 1 in 10,000.

I think God is sending these children for a reason. I know that despite the trials I face in a world that is very cruel that there have been many gifts and my son's autism has also brought out the best in some people. Where I see ignorance, I have also seen Holy Spirit shine through the eyes of kind strangers.

I don't know what the answer is but I believe that with the grace of God this has happened as an opportunity for us to be more understanding.

[Deacon DW]

Wow. Thank you, Christine, you brought tears to my wife's eyes. I know your frustrations--we parents of children with autism tend to see things in a different light.

[Carol Race]

Deacon Dan, thank you for taking interest in this story and for being willing to take in special needs children to the Church. It really makes me feel like these sufferings we have gone through are worth it if other kids can be accepted in the Church.
It's interesting how people can make such judgments of another's intentions and character just by reading a news column! News reporters and editors print only what they want you to hear. Much of what I told them was not reported. They want the story to be simple, yet highly controversial, so they have to print only the material they choose to support that goal. Unfortunately, many people fall for it.
To get to the point: My son does have severe autism. This does entail having to restrain him under any number of conditions. However, we are experienced 24/7 working with him for more than 14 years now. He poses no danger to others while we are with him because we know him and can forsee most everything he is likely to do. He once was put on a psychotropic med which made him much worse, and no, we didn't forsee that. We won't do it again. Poeple don't realize the incidents reported by the priest, if they took place at all, (many of them didn't) took place several years back and levels of intervention were put in place by us parents to prevent these from happening again, which were completely effective. If the whole thing were written out in a time-line with matching interventions, I think it would clearly show that Adam's family has done and is doing everything possible to work with Adam and the congregants are not nor were in any real danger. Adam is not segregated at home. I do want my other children to have some of that "normalcy" however, that most other kids have, even a bit of luxury, by having study rooms of their own. I highly value education also. I expect my kids to get straight A's if they are capable. Their study rooms are probably more about that than they are about Adam. Adam is well-integrated into our family.
Another important thing people don't realize is that the vast majority of the parish had no idea that there was even any issue with Adam in church until the publicity hit. Fr. Dan refused to allow us to talk with the congregation about it, he refused to even talk with us about it. The people he consulted with were primarily a handful of people in the parish and when he got ideas for accomodations he didn't like, he told everyone (the parish council and diocese) that I refused them. In fact, to this day, I still don't even know what those ideas were! Is it so hard to accept that a "personable" priest like Fr. Dan is capable of such things? We have seen decades of priestly sexual abuse which is so much worse than this, yet we still uphold every priest like he were infallible? I am willing to forgive Fr. Dan, however, he needs to come to the point where he takes responsibility for misleading the congregation, the diocese, and the rest of the world.
I did not choose to do the publicity except for the fact I had no alternative. I forwarned Fr. Dan and the diocese that if it came to an arrest, there would be publicity involved. I was willing to work things out from the start. I had even asked the Bishop to send in another priest for me to work with as I discovered Fr. Dan's mindset from the beginning was to expel Adam from church. I was not given another priest to work with, I was not offered any meetings that I could safely participate in where we could discuss the issue, and the parish was not invited to offer their views. Those who supported me were intimidated from speaking publicly in my support. Most of the parish had no issues with Adam coming to Mass for many years.
The good that has come of this is that the Church has become more aware of the need to welcome kids with disabilities, and other people, even non-disabled, who don't fit the stereotypical Catholic (ie green hair, body piercings, etc) All need to be welcomed and all need to listen attentively to God's word to become charitable to one's neighbor, and love God above all else.
Carol

[Pia]

God bless you and your family, Carol.

[Althea]

Pius people with pius children. Watch me suffer through this burden given to me by God. Let me impose on all the suffering I have. Reality stinks! Families with handicapped children (yes, I said it) have difficulties. Families without disabled children have difficulties. If a child that is throwing a temper tantrum and is perceived as "normal", the parent is expected to remove said child from the presence of the public until the behavior is changed. Why should parents with "normal" disabled kids not be expected to do the same? To the mother of two disabled children - what's wrong with attending two Masses? One for your child that you love and one for you. In the name of piety. Also Ms Carol - is this about Adam or about your sad ability to accept that Adam is severely handicapped? It seems you are upset because you can't have a normal life. Your life is normal for you and Adam. There are expected behavior from you as the caregiver that equates respect for others as well as for Adam and you. What's wrong with the separate room in the church that possibly will besimilar to the "prayer" room in your home for Adam? Are you afraid of the stigma for yourself? I bet if possible some of the normal teens would be sitting there with you and Adam in support of the respect offered to others. I feel no sympathy for you, Ms. Carol. You are taking this thing way off course and others like you are following. If you are this disruptive on your journey to piety, how were you before you started?

[Patti C]

Dear Deacon Dan,
I am posting a little late, due to having had family members pass away in 2009 and 2010.
There are several sides of the autism issue. I am an intelligent, high functioning autistic with Asperger's Syndrome.
I am very sensitive to noise, and that includes ringing cell phones and screaming on phones, and people like Adam.
Just because you could tolerate someone with noisy misbehavior in church does not mean I can.
As a competent, highly intelligent more responsible autistic, I try to move away from noise. But it's not always possible.
I enjoy a quiet, reverent service and there is a time and a place for everything.

[DW]

For those who need quiet I think the best thing is to find a Mass to attend where it is quiet. If we can't tolerate people whose disability causes them to be loud then we should make an effort to find something that better suits our needs. I think the situation is analogous to tolerating a crying baby. I typically direct folks who have children that are loud because of their disability to the Masses where there are lots of loud children and babies anyhow.

[Patti C]

DW,

I see you finally commented on my post. I am DISABLED due to LOUD NOISE.

Let's say I go to a normally quiet service, and a screaming person who moves around a lot disrupts it.

I am a high functioning autistic and know to move. But, it instantly upsets me and drives my blood pressure up. It ruins my day.

Whose disability is more important?

A liturgical church service normally has order, though some other churches do not and have noisy free-for-alls with no beginning or end.

My own disability is much more subtle than that of a squirming, squealing lesser intelligent Adam.

I have as much rights as he does. Some people might regard me as more responsible for myself, but a sudden loud noise next to me can make me scream in certain circumstances. Because I am clearly more self-responsible than he is, I am more likely to get arrested for being upset.

Some problems have no simple answers.

I say if it's a traditionally quiet service, the participants are entitled to ask disruptive people to leave.