Deacon Dan Wright

Where Teaching and Diaconate Meet

It's not often that I find myself in the news. Certainly with the kind of news we might see nowadays this can be considered a good thing I suppose. 

However, recently I was honored to have been selected to be profiled on one of the local Austin news programs for my work as a teacher. During the interview I was asked to explain what a deacon is and does. My comments about it were somewhat brief, so I was delightfully surprised to find that once the editing was done my role as a deacon took the forefront. 

I share this positive human interest story with you, and as always I seek your continued prayers that the work I do truly will always make a difference. Again, I am honored--but perhaps even more I am humbled and called to an even greater degree of Christian service.

Eight Year Old Autistic Student Arrested

Here is a mind-boggling story if I ever saw one.  Having formerly been an elementary special education teacher (now working in a high school), I couldn't help but feel appalled.  Furthermore, being the parent of 10-year-old who has a very similar condition as the child in the news story brought it painfully close to home.  I sympathize with the child's parents.

The mother of an 8-year-old autistic girl who was arrested after a scuffle with her teachers said it was horrifying to watch her daughter be led away in handcuffs from her northern Idaho elementary school.

Police in Bonner County, Idaho, charged the girl, Evelyn Towry, with battery after the arrest Friday at Kootenai Elementary School.

Even though prosecutors dismissed the case Tuesday, the family is considering legal action against the school. They say their daughter was physically restrained to the point of causing bruises and is now tormented by memories of the incident.

Spring Towry said she got to the school Friday just in time to see 54-pound Evelyn -- who was diagnosed at age 5 with Asperger's Syndrome, a high functioning form of autism -- being walked to a police car with two officers at her side.

"She started screaming 'Mommy, I don't want to go! What are batteries? What are batteries?'" Towry said. "She didn't even know what she was arrested for."

Towry, who lives in Ponderay, said Evelyn told her that she had been refused entry into a school Christmas party that had been delayed until after the holidays because of a string of snow days, because she refused to take off her beloved "cow costume" -- a hoodie with cow ears and a tail.

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From the viewpoint of being both a parent and a teacher I can't begin see how things got so far out of hand that the police had to be called.  Typically school officials--both administrators and special education teachers--are required to undergo a yearly training to learn the warning signs of, and responses to, behavior that's about to get out of control.  Typically also, there would be a crisis team or perhaps several individuals trained in non-violent means of addressing such behavior. 

Often kids with an autism spectrum disorder will grow strongly attached to objects.  It was likely that this was the case with the girl's cow costume (it sounds like it may have only been a jacket).  Taking something away from a child with autism can amount to taking away something as important as a body part in the estimation of the child.  It's difficult to understand why there wasn't awareness of this.

I know that it's easy to sit back and say what could have been or should have been done, and I know well the difficulties that educators face in working with children who have cognitive and neurological disabilities.  However, I also know that when there are students who are prone to acting out their behavior, whether it's because of communication difficulties or something else, there must be a plan in place to address it, and I've never even remotely heard of the police having to be called to handle an 8-year-old who has a mental disability. 

I find it hard to believe that no one knew the student well enough to have such a plan in place and to realize that the student's response to an either/or ultimatum would not be the same as it would with a neurotypical child.

Perhaps what bothers me most is that somewhere there is someone--someone in authority--who believes that the correct response to the disability-related behavior of a second or maybe third grader is to have her arrested for it and charged with a crime.

Secondary Drowning

This week I have actually been preparing myself to blog this summer on topics other than autism and disability--I still have the intention of writing on scripture and spirituality this summer; however, another story caught my eye--one that had a tragic ending. 

I'm including this on ddw.org for a couple reasons: first, I want to create awareness this summer of something that many, if not most of us, may not have been aware.  Secondly, I believe as Christians we share a spiritual good when we pray for the dead and for their family members who mourn.

I don't know that it really has much of anything to do with the story that the little boy had autism--it's just that those of us who are parents of autistic children share a special connection that goes as deep as the heart.  It only reminds me of all the times through the passing of summers that I've watched my Dominic splashing around at the pool.  I know that kids with autism have to be watched--protected--more than typically developing kids.  Sometimes, watching doesn't help.  I guess that's why I always ask for the guardian angels to be near:

As Cassandra Jackson watched her 10-year-old son Johnny splash around in their neighborhood pool last week, she had no reason to believe anything was wrong -- let alone that her son was slowly drowning.

"He seemed to be fine," Jackson, 41, told ABCNEWS.com from her home in Goose Creek, S.C. "I noticed nothing out of the ordinary, other than him taking a little bit of water in and coughing and then calming down."

Jackson estimated that Johnny had been in the pool for 45 minutes and had been wearing floatation devices on each arm, in addition to being monitored by an adult in the pool, as well as herself and a friend watching from pool chairs nearby.

But less than two hours after getting out of the pool, Johnny had defecated in his pants twice and was complaining of being tired.

After being bathed and dressing himself, Johnny walked to his bed unaided, leading his mother to believe that he was simply tired from playing in the water.

But shortly after leaving him to nap, Jackson discovered her son unconscious and his face covered in a foam-like substance.

"My friend went back into the room where Johnny was sleeping and noticed what appeared to be cotton balls stuffed in his nose," Jackson said of what turned out to be the foam from his nose and mouth. "She asked if I put them there and I said no -- I went in and saw him and screamed for help.

"I rolled him over and his body was very limp and I realized he'd soiled himself again and was very purplish-blue looking," said Jackson, who then called 9-1-1. "His tongue was really swollen, too."

Johnny suffered from cardiac arrest on the way to the hospital, his mother said, and was pronounced dead upon arrival.

Berkeley County Coroner Glenn Rhoad examined Johnny's body after the incident and told ABCNEWS.com that the preliminary autopsy showed the cause of death was asphyxiation due to drowning. Rhoad added that the boy had a lot of water in his lungs.

While Johnny had been diagnosed with Attention Deficit Disorder and autism, there is no reason to believe that either condition had anything to do with his death, the coroner said.

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Johnny, sleep in peace.  May the Lord Jesus who loved little children hold you forever in his arms.

Autistic Student Voted Out of Class

Here's another one--must be the season.  I believe that as Christians we have a moral responsibility to promote justice, which means advocating and taking a stand where and when we find injustices.  Part of that is working to create awareness also, and to point out injustices where they occur.

Often we must accept the difficult task of being pushed far out of our comfort zone to protect the rights and human dignity of the weakest members of our society.  When it comes down to where I want to stand on the day of judgment, I'd rather have it said that I opted to take the side of the poor little ones--whatever the cost.

Officials say they've reassigned a kindergarten teacher whose Port St. Lucie, Fla., class "voted out" a 5-year-old boy who is being tested for a form of autism.

After the boy misbehaved last week, teacher Wendy Portillo "decided to bring him in front of the class and let the other kids tell him what they didn't like about him, kind of ridiculed him," Michelle Steele, a police spokeswoman, tells the Palm Beach Post.

The newspaper says students then voted 14-2 in favor of having the boy removed from Portillo's classroom.

"He was incredibly upset," Melissa Barton, the boy's mother, says in an interview with the Port St. Lucie News. "The only friend he has ever made in his life was forced to do this."

A school spokeswoman says Portillo has been removed from the classroom pending the outcome of an internal review.

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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.

Catholic Parish Bans Autistic Child

After a month-long break from blogging to finish up school year work and prepare for my summer break, I anticipated that would return with something on a more uplifting note.  As I read the story posted below, my emotions ranged from deep sadness to outrage.  The words of Jesus from Sunday's gospel echoed in soul, "Not all who say to me 'Lord, Lord' will enter the kingdom of heaven."

Among the many things to find truly appalling in the story, the fact that the child's mom was issued a citation on Mother's Day for taking him to Mass stands out.  Tears should pour from heaven.

BERTHA, Minn. -- Carol Race thinks it's important for her 13-year-old son to be in church on Sundays for Catholic Mass.

Leaders of the Church of St. Joseph once felt the same way, but not anymore. They say Race's autistic son Adam is disruptive and his erratic behavior threatens the safety of other parishioners.

The northern Minnesota church has obtained a restraining order to keep Adam away, an action that has been deeply hurtful to the Race family and has brought them support from parents of other autistic children.

"My son is not dangerous," Carol Race said. The church's action is "about a certain community's fears of him. Fears of danger versus actual danger," she said.

In court papers, church leaders say the danger is real. The Rev. Daniel Walz wrote in his petition for the restraining order that Adam--who already is more than 6 feet tall and weighs more than 225 pounds--has hit a child, has nearly knocked over elderly parishioners while bolting from his pew, has spit at people and has urinated in the church.

"His behavior at Mass is extremely disruptive and dangerous," wrote Walz. "Adam is 13 and growing, so his behaviors grow increasingly difficult for his parents to manage."

Carol Race said Walz's claims are exaggerated.

"He's never actually injured anyone," she said. "He's never knocked down anyone. He's never urinated on anyone or spit on anyone."

Carol Race was cited for attending church May 11 in violation of the restraining order, and faces a hearing Monday. She says she can't afford a lawyer and will defend herself in court. A lay mediator is scheduled to meet with her and church board members on Wednesday.

Autism is a developmental disorder that affects a person's ability to communicate and interact with others. It is more severe in some people than others. Adam has limited verbal skills.

Walz did not return calls seeking comment, but Jane Marrin, who works for the Diocese of St. Cloud and is acting as a spokeswoman for the parish, said the church board tried working with the Races to find "reasonable accommodations." That included offering a video feed of Mass that could be watched in the church basement.

The family refused all suggestions, she said.

"It's a difficult issue," Marrin said. "There are no easy answers."

Carol Race dismissed the church's suggestion that Adam watch a video feed in the church basement, saying that "does not have the same status as attending Mass. Otherwise we could all just sit home and watch it on TV and not bother to come in."

"It's considered a sin in the Catholic church not to attend Mass on Sundays and every holy day of obligation," she said. "And that's what this is about. I'm just trying to fulfill my obligations."

Adam is one of five children. The family's home in nearby Eagle Bend has separate study rooms so the other children can read books and use crayons that Adam could otherwise destroy.

Carol said Adam has two favorite spots in the house, the prayer room and the kitchen table. "He likes to eat," she said, laughing.

Adam is prone to anxiety attacks. Carol said some of those outbursts force members of the family to sit on him to calm him down, or restrain his hands and feet with a strip of felt.

In his court petition, Walz said that after one service Adam got into another family's car, started it and revved up the engine while there were people in front of the vehicle.

"Adam's continued presence on parish grounds not only endangers the parishioners, it is disruptive to the devout celebration of the Eucharist," Walz wrote. "I have repeatedly asked John and Carol to keep Adam from church; they have refused to do so.

"In fact, Carol told our parish council that she would have to be dragged from church in handcuffs if I tried to keep Adam from attending Mass," he wrote.

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There is a lot more that can be done in the way of offering support than forcing a kid to watch Mass on a video from the basement.  Forcing someone to sit in the basement is not a reasonable accommodation by any stretch of the imagination--It's discrimination.

As someone who works daily with autistic teenagers, and as the parent of an autistic child, I have several questions.  Has the diocese, consulted an autism expert, or has anyone done as little as having contacted the school to discuss what support they use in the classroom?  Did they consider paying a trained person to sit with him (there are people who do this--I know several)?  Has anything been done to educate parishioners about autism?

As my wife was leaving for work this morning I could sense her sadness over having learned about the story.  I told her, "Look at it like this, it's another diocese--not us."  She was quick to correct me, "No, it is us.  This hurts the whole Church."  Indeed, when this kind of thing happens it not only hurts the family who must suffer through the ordeal of not being understood--not loved--and not accepted.  It also hurts their parish, their diocese, and when it makes the news it hurts us all.  On a spiritual level it hurts us regardless of whether it is news or not.  It is a situation that cries out for justice.

I think it is interesting to juxtapose this story with the fact that in 1941 young Joseph Ratzinger had a 14-year-old cousin--a few months younger than he was--who had Down Syndrome.  The cousin was taken away by Nazi authorities and presumably killed under Hitler's euthanasia program for the disabled. I know what John Paul II had to say about people with cognitive disabilities.  In light of the incident with his cousin, I'd like to see Pope Benedict also say something.

In the past, at the masses where I do not serve at the altar, my wife and I have chosen to sit in the back of the church with our children, including our autistic son--I think from now on we'll sit in the front.

 

Wrongly Creating a Connection

In the days before pro wrestler Chris Benoit killed his wife and child and hanged himself, the couple argued over whether he should stay home more to take care of their mentally retarded 7-year-old son, an attorney for the wrestling league said Wednesday.

“I think it’s fair to say that the subject of caring for that child was part of what made their relationship complicated and difficult, and it’s something they were both constantly struggling with,” said Jerry McDevitt, an attorney for World Wrestling Entertainment. “We do know it was a source of stress and consternation.”

McDevitt said the wrestling organization learned from the couple’s friends and relatives that the Benoits were struggling with where to send the boy to school since he had recently finished kindergarten.

He also said Benoit’s wife didn’t want him to quit wrestling, but she “wanted him to be at home more to care for the kid. She’d say she can’t take care of him by herself when he was on the road.”

The child suffered from a rare medical condition called Fragile X Syndrome, an inherited form of mental retardation often accompanied by autism, McDevitt said.

Read the whole story here

What is predictable about the above story is how the press was quick to make a connection between Benoit's actions and his child's disability.  Does it somehow make Benoit's crime less terrible or even excusable that he and his wife had to care for a child with a cognitive disability?  Exactly what is WWE trying to say?  Don't say it's the steroids?  Don't blame wrestling?

While parenting a child with disabilities has great difficulties, as I can attest, what happened was not the child's fault.  Undoubtedly, as a society on the whole, we often fail at supporting the families of children with disabilities.  However, the case of the Benoit killings has nothing to so with the availability of services.  Nor did it have anything to do with the child's disability.  The point to keep in mind is that there should be no more sympathy shown toward someone who murders his child who has a disability than one who murders his or her child without a disability.

Researcher Dick Sobsey has documented an increase in the murders of children by their parents...in relation to well-publicized and sympathetic coverage of the murders of children with disabilities. Articles about the alleged murder of a person with a disability should not contain more about the disability than about the victim as a person.

...what will be accomplished by saying that murderous feelings toward disabled children are common? Will this increase the acceptance of children with disabilities in our schools and neighborhoods? Or will the public conclude that kids *that* horrible are better locked up? What is the end result when parents say feelings of murder or desperation are "the norm?" How will it affect the small percentage of parents struggling with the despair? Will it give them strength or help them leap off the abyss?

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New Book Available on Teaching Social Skills to Children with Autism

Applied Behaviour Analysis (ABA) is a successful educational method for developing social and communication skills in children with autism...and this book explains how and why.

Get information here,

And here too.

Autism Movement Seeks Acceptance, Not Cures

Michael John Carley is trying to change your image of autism. He has autism and he's happy just the way he is. He thinks that might surprise you.

Get the story from NPR here.

Also, follow the "listen" link for the story on All Things Considered, which includes several personal profiles of people who "celebrate" their having autism, including the story of Amanda Baggs who writes on her blog about autism.