The Language of Music

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It's been awhile!
Our annual summer retreat was a few weeks ago, with the theme of "Spread your Wings, Share your Gifts!" We talked about some very particular gifts- the Gifts of the Holy Spirit, and naturally we also talked a lot about our own gifts and talents.

A greatly anticipated aspect of this year's retreat was a talent show.  Participants signed up to do a variety of things- stand up comedy, puns or other jokes, dance, a Darth Vader impression, one participant displayed a puzzle she had put together, another recited three of his favorite Scripture passages, and even provided a copy for everyone to take home.  The vast majority of folks signed up to make music. One played the ukelele, another is part of a drum line and played a song for us, but most wanted to sing.  The overwhelming response to this really made concrete something I knew intellectually and even personally but had not seen so clearly before.  Music is a language that breaks down barriers!

My sister is deaf, but something that has always fascinated me is how much she LOVES to be at live concerts.  She loves to watch the musicians, and when she is able, to see and touch the instruments. Clearly Mary is not alone in this- it was pure JOY to watch folks, Deaf and hearing alike, enjoy and dance to Mariachi music at Pastoral Week.  There are actually music/dance clubs that are specially outfitted to appeal to a Deaf clientele.  Music is something so deep and integral to us that it really seems to transcend even our sense of hearing.  What more evidence do we need of this than the absolutely gorgeous video of Mandy Harvey's audition on America's Got Talent?

  At the retreat what I saw so clearly is the voice that music gives, in a particular way, to folks who have difficulty communicating in other ways.  The young man who played the drum for us, is primarily non-verbal- yet he knew exactly which songs he wanted to play and was positively joyous as he played- perfectly in time I might add!

And then there is Joseph, who doesn't speak much and what is does say is largely repetitive.  Joe seemed shy to sing at first, but then asked us all to "sing with him" and ended up getting everyone to join him in a rousing "You are my sunshine".

Another young lady stunned us a short time later when we opened up the floor for a little karaoke.  Jenny is not non-verbal, but like Joe the majority of her speech is repetitive.  Well, she asked for a song- "I'll Never Break Your Heart" by the Backstreet Boys- and then as the song began proceeded to take the microphone and belt.out.every.word. With tone- and pitch! As she was singing, the man who is in charge of her care taking services stepped in and literally did a double take when he saw her.  As he began to videotape, I asked if he had ever seen her do anything like that- to which he shook his head and said never in the six years he has known her.

We had singers who can't read, but can remember lyrics, and hold a tune better than I can.  There were singers who were new to the retreat, and shy, but once they stepped up there for a duet with a new friend they had huge smiles on their face.

I worried, because people were so bravely standing up to do something they love, that I would need to give the "if you can't say anything nice..." speech- but I never did- there was simply never a need.  The response was always along the same vein- high-fives, a hearty and genuine "good job!", and plenty of sensory-friendly ASL applause.

So, what's the point of all this?  What does a Backstreet Boys song have to do with catechesis?  Well first, I'd like to encourage you to make room for music in your life and in your classroom.  Music improves memory (how many commercial jingles can you remember before you remember your short grocery list?) Music engages us and can provide stimulus on several different sensory levels.  We well know that music provides words for feelings and relationships that can be difficult to express even if you don't have communication challenges!  This is doubly true when we try and express our love for God.  Beautiful melodies arouse curiosity and help us sense and express our experiences and emotions in a depth that words alone cannot.  Something expressed so wonderfully in this powerful scene from "The Mission".

Sure, there was a lot of country songs, Disney favorites, and pop hits like the Beatles, but after a little while, the request came... "Let's sing some more Jesus songs".  Truth, beauty and goodness lead us back to their source in God, and in music we find a perfect pathway.

Which brings me to one of the most cherished moments of our weekend- the sing along with Sr. Cathy.

        

The Mystery of Being Human

Psalm 139:14

If you ever need to hear how immensely precious you are, read Psalm 139.  Just ponder for a moment the image- even better- the reality of someone who knows you so thoroughly and loves you so completely and unreservedly.

If we could view ourselves through the eyes of that Person... what would we see?  Would we WANT to see? And would we believe what we saw if we did?

We live in a society that has largely lost its sense of wonder at the unique and unrepeatable beauty of each person.  Consider this for a moment... we believe and we teach that EACH of us is created in the image and likeness of none other than GOD himself!!  Fashioned uniquely after His own likeness and heart, which we see in the flesh in Jesus of Nazareth.  Now THAT is something to wonder at!

Wonder... rapt attention or astonishment at something awesomely mysterious or new to one's experience. 

But we live out human existence day in and day out... and we have years of learning, which is why we smile knowingly, or perhaps don't even pay much attention when a child is so absolutely captivated by a shadow or a weed, which has just been presented as if it were a diamond.  It isn't anything new... is it?  

I think the key to wonder is that word "mystery".  A mystery, far from being some dark and sinister thing, simply means that there are things we cannot fully understand and so we cannot fully explain, which includes ourselves.  Walker Percy expresses this well, with his typical tongue in cheek:

"A stranger approaching you in the street will in a second's glance see you whole, size you up, place you in a way in which you cannot and never will, even though you have spent a lifetime with yourself..." (Lost in the Cosmos, pp. 7-8)

At a training the mother of a little girl who has Down Syndrome put it beautifully: a child is "like a gift that you carefully open over time, and allow him or her to reveal themselves." In this way, wonder respects the mysterious reality, not trying to fit it into an understandable box, or claiming to have all the answers, but simply gazing in astonishment.

Once we begin to do this, there is one thing we can be sure of: prepare to be surprised!  Those around us will do and say things we could never predict or expect- no matter how long or well we know him or her.  My mom shared a great example just the other day- she and my dad awoke in the morning to find that my sister had made herself cozy on the couch, with a blanket and a fresh Coke, and for the first time, had used the remote to turn on the TV. 

How many times have we heard stories of someone or other "beating the odds", or achieving something against all expectation. I wonder if perhaps our expectations are too low.  Perhaps we are too bound to the definitions, to what we see on the surface- to the diagnosis, and have forgotten that the person before us is in many respects an unknown with their own potential to be revealed and developed.  In this case, our work becomes to watch and learn, to nurture, and finally to simply gaze in astonishment at what flowers.

Each of us is wonderfully created, and the One who created us knows each step of our lives, each breath we take- each hair on our head.  He knows and loves us who are created in his image as he knows and loves Himself.  Maybe today we can begin to look on ourselves, and each other with fresh eyes- to see as He sees, and to appreciate anew the awesome mystery of each and every person and each and every day.

You formed my inmost being;

you knit me in my mother's womb.

I praise you because I am wonderfully made;

wonderful are your works! 

My very self you know 

                                                             (Psalm 139:13-14)

Mom Says it Best... 5 Easy Steps to Reaching Out to Youth with Special Needs and their Families

I recently had the pleasure of taking part in a Pastoral In-Service for Youth Ministers and PAREs in the New Albany deanery.  The focus of this in-service was reaching out to youth with special needs and their families.

In the first part of the in-service I talked about autism, some of the gifts and challenges a youth minister or PARE might encounter, as well as some tips to help make it easier for these individuals to participate.  Lots of info, and truly, I hope it helped!

But then in the second half of the in-service, Anne stood up and began to share about her family's experience in the Church with her 25 year old son, who has Down Syndrome.  And she blew it all away.  It wasn't that we weren't saying essentially the same things... it was just that marvelous case of experience managing to cut through all the extra words and just expressing what is real.  And these are the five things she recommended to any parish to support these individuals and their families.

 

1. Invitation:
Many families are rather isolated, some have had bad experiences, others may not even imagine that active parish life is possible.  This is why the personal invitation is so so crucial- and it may take several invitations before they are ready!
Also, model welcoming and belonging!  She spoke of an experience when her son was an infant, at Christmas Mass when her pastor came, picked up her son and gave his homily with him happily sitting on his lap.    

2. Communication:
Open two way communication with parents or caregivers will ensure continuity and support for one another!

3. Collaboration:
Simply put, being open to possibilities and trying different things.  Even if the answer is "You know, I'm not sure.  Lets put our heads together and see what we can figure out to make this work."

4. Education:
Learn about different disabilities.  This will remove some of the mystery, and give tools to better support to those individuals.  

5. Flexibility:
Try and try again, and just know that it's OK if it's just a bad day, and that lesson is not going to get done.  And, she mentioned, that this is most definitely a two way street :-)      

Quality of Life

"We only have one life, and it's worth living it well" Bl. Chiara 'Luce' Badano



A couple of times recently the topic has come up about the concern over what "quality of life" a person has, or will have.  Often this question circulates around a person who was given the diagnosis of a terminal illness, or a person who has a disability, chronic illness or pain. Now... I'll admit, I scratch my head over this one a little bit, mostly because this worry is a little foreign to me and my experience. That said, it is the language of our culture, and though the premise of it is flawed it does express a valid concern, so lets begin with a working definition...

"Health-related quality of life (HRQoL) is a multi-dimensional concept that includes domains related to physical, mental, emotional and social functioning. It goes beyond direct measures of population health, life expectancy and causes of death, and focuses on the impact health status has on quality of life. A related concept of HRQoL is well-being, which assesses the positive aspects of a person’s life, such as positive emotions and life satisfaction." [my emphasis]  http://www.healthypeople.gov/2020/about/foundation-health-measures/Health-Related-Quality-of-Life-and-Well-Being

Before we begin, I'd like to point something out: "focuses on the impact health status has on quality of life" [i.e how we function physically, mentally, emotionally and socially].  This seems to me where the primary flaw in the "quality of life" language lies- it is at it's heart purely subjective, the answers depending primarily, I would argue, on a person's state of mind at the point they are asked the question.  A person who is otherwise perfectly successful and healthy, can still be desperately unhappy and dissatisfied in life.

It might be helpful to take a look at some examples, First is Blessed Chiara 'Luce' Badano.  She was known for her luminous eyes and smile, the care and love she showed to those around her, even as bone cancer slowly took her life.  Each moment of life, to her last breath, was so important to her that she refused morphine for two reasons: to offer and unite her suffering with that of Jesus, forsaken on the cross, and because she wanted to be lucid.  One of her more well known quotes is "At this point I have nothing left.  But I still have my heart, and with that I can always love".

There are also people who are not beatified, but who live life to the fullest each day.  Nick Vujicic was born without limbs.  He suffered bullying, and dealt with suicidal thoughts.  If asked, he will tell you, of course he would LOVE to have arms and legs, to be able to hold and hug his wife and son, to walk and run.  BUT he would add, he has realized that having those things has not necessarily made someone happier, or a better person.  What brings someone joy is real hope, hope in the Father who loves us unconditionally and who has a plan for each of our lives, that we continually get up in the morning and work to know and live.  

Another example is Bethany Hamilton.  For any who may not be familiar with her story, Bethany was 13, and on a track to become a professional surfer, when she was attacked by a shark while resting on her board, and lost her arm.  Her struggle to gain perspective was real, as was her determination to get back in the water and compete- something that took a group effort, hard work, adaptation, and even experiencing failure.  Her experience in Thailand, which you get a glimpse of below, was one of her 'aha' moments in shaping a new perspective.  She also found out from a surprising outpouring of support, that her very visible determination and struggles were providing a lot of inspiration for those in a similar situation who were not so visible.  In the movie, toward the end she is asked if she could go back to that day, would she still go surfing?  Her response is that she would not change what happened to her because "I've had the chance to embrace more people with one arm than I ever could with two."

It is extremely worrying to think that critical decisions could be made based on how well we are able to function physically, mentally emotionally or socially (usually compared to what we perceive as optimal functioning) or out of fear- fear of pain or suffering, fear of being dependent on others for care, fear ultimately, of death.  

Now to get a little more personal.  This is Mary, my sister- isn't she pretty? 

When she was 18 months old, she contracted meningitis that despite doctor visits went undiagnosed. This culminated in a stroke, all of which left her deaf, blind in one eye, with seizures and cerebral palsy-like effects on her left side, and also greatly slowed her intellectual development. Providentially she was so young that she was able to relearn much of the motor skills she had been developing, and continue to learn to the point that in many ways she is quite independent!

Yet, the reality is she requires full time, personal care and always will.  Her ability to communicate has been very much affected, though she's gotten very good at expressing what she needs/wants, it still can take a lot of guessing, especially when something seems to be wrong and it isn't a simple physical need.  

Here's the thing though- Mary is happy, and outgoing.  She loves being around people, and people for the most part love being around her.  She is intuitive to the feelings of others, and generous with her million watt smiles and hugs.  Mary makes you feel like a rock star when she sees you for the first time- whether it's been a few days or a few months.

Our lives have been greatly shaped by Mary's presence in our family.  We have learned compassion, and patience, we have learned to look at people beyond the surface, just to name a few.  We have seen what pure joy and love look like.

Our value is not based on what we can do, and contribute to our families and society.  A priest recently asked a wonderful question in his homily that I have thought of often since... "What can we do to increase God's love for us...? Absolutely nothing."  Our dignity and value is based in the fact that we ARE, We are here, and fearfully and wonderfully made in HIS own image and likeness.
Life, and one's quality of life is more than our physical, mental, emotional and social status, and our sense of well-being or lack thereof, though no doubt, these factors ARE important.

This perspective is challenging for sure.  It has to come from a place of faith and trust, that there is a Creator and that He is good, and wants good for us, and has a plan and purpose for each life.  It has to come from a place of hope- understanding that there is more ahead than just this life, an ultimate destiny each of us is called to.  Most of all it comes from love- real selfless love- first and foremost God's love for each one of us, and our love for Him, and for one another.

Reconciliation and Persons with Disabilities

"In this sacrament [of Reconciliation], the sinner, placing himself before the merciful judgment of God anticipates in a certain way the judgment to which he will be subjected at the end of his earthly life.  For it is now, in this life, that we are offered the choice between life and death, and it is only by the road of conversion that we can enter the Kingdom, from which one is excluded by grave sin."                                                                                                                                                      (CCC 1470)

Not infrequently when the subject comes up, the response- sometimes even by a priest- is to downplay the importance of the Sacrament of Reconciliation in the lives of persons who have disabilities.Variations of "what sin could he possibly have committed" or in general speaking of our friends in almost angelic terms.  This attitude is first of all, not realistic, and ultimately does our friends a great disservice.  So, I'd like to spend some time talking about how this sacrament is not only applicable, but essential in the lives of persons who have special needs.

This attitude is commonly directed toward folks who have an intellectual and/or developmental disability.  And to be sure, the US Bishops do tell us, "only those who have the use of their reason are capable of committing serious sin" (Guidelines for the Celebration of Sacraments with Persons with Disabilities 23)  So, yes, some individuals can be safely assumed to never have committed a serious (mortal) sin.  

That said, even young children and individuals with an intellectual disability, are often aware of having done something wrong and experience to some degree feelings of sorrow and remorse (contrition).  These individuals may not be able to specifically describe their sin, but are most definitely aware.   

People who have disabilities are just that- people.  They have moods, challenges, good days and bad days, a range of emotions and behaviors, some of which are in their control, others that aren't.  They are affected by how they feel physically and emotionally.  The difference is as one catechist so perfectly puts it is their transparency.  These individuals do not have the ability to put up the masks that most of us can- if they are having a bad day, you will know it, if they are joyful, they want to share it, and you will know what they are thinking.  

I heard a story recently that is a perfect example.  Lisa is on the autism spectrum and very attached to one of her catechists.  One day, this catechist was not able to give her as much one on one attention as she wanted.  Lisa became very agitated, and had an outburst that ended with her aide having to come and get her, and her shouting "I hate (catechist's name), I hate (catechists name)" as she left.

The next day she, with the help of her aide, called that catechist, said said she was sorry and told the catechist that she loved her.  

The US Bishops tell us that "As long as the individual is capable of having a sense of contrition for having committed sin, even if he or she cannot describe the sin precisely in words, the person may receive sacramental absolution." (ibid 23)  

In fact, even those "who cannot experience even minimal contrition, may be invited to participate in penitential services with the rest of the community to the extent of their ability" (ibid 23) 

And communication skills are not a barrier.  The bishops tell us that "sorrow for sin is to be accepted even if this repentance is expressed  through some gesture rather than verbally"  The priest is simply asked to act with prudence and discretion in asking questions and assigning a penance. (ibid 25)

But WHY... why is it so important that this sacrament not be neglected or downplayed for these individuals?  To begin to understand this, I'd like you to take a close look at this picture from our summer retreat.  For some context, Fr. Dan is speaking about reconciliation, and will next move to the chapel for anyone who would like the sacrament- or even just to talk.  Notice how intent the faces of these individuals are as Fr. Dan shares his own story, and talks about healing relationships, and how God is always ready to forgive us.   

In baptism we are given God's own life, new life in Christ.  Yet, just as our bodies still experience suffering, illness and death, so this new life can be weakened or lost by sin.  Jesus came as a healer: "physician of our souls and bodies".  Often, as in the case of the paralytic, Jesus healed physically through spiritual healing- the forgiveness of sins.  (cf. CCC 1421) 

The call to holiness and the choice of life and death is for all.  Sometimes- as in the case of infants and individuals who will never reach the age of reason, their parents speak for them, obtaining the grace of the sacraments- choosing life.  The great majority of people, however- those with disabilities included- do have at least some awareness, and a sense of contrition, and so need to be formed for this sacrament in a manner appropriate to them, and to have access to it.  Reconciliation is part of each person's call to holiness and constant conversion- working to conform our lives more and more perfectly to Christ, our model.  Which is why it is strongly recommended to confess even venial sins. 

Regular confession helps us to form our conscience, and provides grace to fight against any tendencies toward sin we might have. Reconciliation provides an opportunity to receive guidance, and for satisfaction, doing what is possible to repair any harm done.  Unquestionably individuals who have disabilities are faced with temptations, stresses, challenges, frustrations, irritations and hurts each day- just as we all are.  The Sacrament of Reconciliation provides the grace and strength to face these temptations and challenges with virtue, and a means to repair their friendship with God, to seek forgiveness, when they respond in a way they know is not right.  

So, ultimately persons who have disabilities need Reconciliation for the same reasons we all approach the sacrament... 

• Reconciliation with God, and a recovery of grace
• Reconciliation with the Church
• Remission of eternal punishment brought about by mortal sin
• Remission, at least in part of temporal punishments resulting from sin
• Peace and serenity of conscience, and spiritual consolation
• An increase of spiritual strength for the Christian battle (CCC 1496) 

         

Sharing Your Story

I was preparing to give a talk as part of a panel on multicultural ministry, which included special needs.  I had an idea, and months to prepare it, and over those months went through any number of approaches, statistics, photos, teaching methods etc...

I think it was about two weeks prior when it suddenly hit me how to start this talk, and from that moment on it was a much smoother process- though it had most definitely taken a different turn. Finally I found myself standing up to present and this is how it began: 

"I'd like to introduce you to a very special person, my sister Mary..."  the room was pretty much silent as I told, well, part of our story- to tell the whole thing would take much longer than 17 minutes!

I told my family's story to illustrate what is possible when a parish embraces as one of their own each member of their community: love, mutual help, sacraments- all from a parish without an inclusion ministry or a program for adaptive faith formation.  The reaction is what I did not expect- people were so happy to hear about Mary, they related to my family's story and took in the rest of the talk (which was much more informational) in a completely different way.  So, totally unscientific and off the cuff, I wanted to share some of the good reasons to share your own story.

Empathy: Isolation is probably one of the easiest pitfalls for a family who has a member with special needs.  Yet, we all have a need not only to be heard, but to be validated and to know that we are not alone- and dare I say, not crazy, in our experiences and feelings.

Hope: It is so easy for families to get mired down in daily tasks and struggles- and particularly when your family includes a member with special needs, often life can seem chaotic, but really does have a rhythm all its own. Families and individuals do not always know, or sometimes need to be reminded of all that is possible- participation in liturgical ministries, faith formation and sacraments, parish projects or events, just to name a few.  To know that there is a place they belong and that the gift of the sacraments is available to their family member can be a beacon of hope, and a life preserver.

Because bulletin announcements don't work- nor do surveys in the pew...a personal story or invitation is the BEST way, hands down, to engage others, and get people to come to any event, program, etc... this can be an opportunity to reach out to other families you might already know from your neighborhood, or school or work or...???

You and your experiences have something to teach!  Talk about hard won wisdom... and you never know where someone is on their journey of faith, and struggles they may have, you never know when someone may need to hear what only you can say- or show.

Building a community: Each individual who speaks up and makes themselves known helps a parish get to know themselves a little better.  By sharing your story, you can be part of that.  As a result, the parish is better able to plan with you, instead of guessing, or worse, assuming there is no need, and so better meet any needs there may be.                    

"The Disabled Disciple"

Some of my reading lately has gotten me thinking about discipleship and what that looks like for a person who has a disability.  You know what?   I have come to the conclusion that, frankly, it doesn't look all that different than it does for anyone else!

Let's start with some common denominators... 

First, each of us is created in the image and likeness of God, our Creator.  In this fact, EACH life, EACH person finds his or her greatest and sure dignity.  

We are created unique, with variations of individual abilities.  Each of us has our strengths.  Each of us has our weaknesses-  in other words, we are all in one way or another disabled.  Some weaknesses, some fragility, are easier to disguise than others.  In fact, the definition the National Catholic Partnership on Disability (NCPD) gives for disability is "the normal and expected outcome of the risks and stresses of the living process"... huh. 

When a person is baptized and confirmed, we are each given the same Baptism in the name of the Father, the Son and the Holy Spirit, the same outpouring of the Holy Spirit, the same priestly, prophetic and kingly mission- the same mission to evangelize "to make disciples of all nations" [Matt. 28:19].  There are no conditions placed on these things- Jesus did not say "Go therefore and make disciples of all nations, baptizing them in the name of the Father, and of the Son and of the Holy Spirit... unless you or they cannot walk, or see or read or...".

Let's think about this for just a minute... Jesus spent a sleepless night being interrogated, was beaten nearly to death, THEN given a large wooden beam to carry, which he was nailed to.  In a very real sense Jesus- GOD- was disabled.  What was he doing during this time?

He was the totally loving Son of the Father- and obedient to the Father's plan and will to his last breath. 

He was teaching- telling the women not to cry for him, but rather to look to their own hearts, and those of their children- even his cry of "My God my God why have you forsaken me" was not so much a cry of despair, as a reminder of ultimate hope and trust- referencing Psalm 22, which any Jew listening would immediately recognize.   

He was forgiving: both to those who were in the midst of enacting his cruel punishment, and extending mercy and hope to the repentant thief who was crucified next to him.  

He loved!  He gave himself totally, even his greatest treasure- his Mother-to us, and gave us to her.

In what seems to be his weakest moment, Jesus achieved redemption and salvation for us all, and through that moment came the greatest hope anyone can ask for- love, mercy, and eternal life. 

Were there certain things he was not "able" to do at that point?  Absolutely!  Among other things, I'd imagine Jesus was not running- or even walking, he would not have had breath enough to sing.  Yet, with everything he had, to his fullest capability, he loved the Father, he loved those around him, and continued his work.  This is something anyone can do, no matter the situation in which they find themselves- and no matter how much or little time he or she is given.  

You may have heard of the story of baby Shane Haley, who was born just about seven months ago. When he was prenatally diagnosed with anencephaly, his parents decided to make the most of their time together- forming a "bucket list" of places and people to visit while he was in utero, and sharing their experience and memories with their friends and family on social media.  Their witness reached further than they could ever have imagined, with nearly a million followers, and their story was featured on many mainstream, national news channels.  What was their witness?  That of a family who love one another, who recognized the beauty and life and dignity of their child, who had no guarantee of life outside his mother's womb.  His short life- which included baptism, has brought attention to this beauty and dignity for others in similar situations.  as the epitaph on his headstone attests, "there is no foot too small that it cannot leave an imprint on this world"  

We all need help along the way- companions, and cheerleaders and champions to help- and sometimes insist- that we grow to our fullest potential.  In this too Jesus is a model- he had his parents, his helper Simon, and faithful companions even on his journey to Golgotha.

In my work I have encountered individuals who witness to discipleship in such amazing ways- a man who is simply a radiant light of joy and faith.  He was a medical student before suffering a traumatic brain injury in a car accident that also killed his fiancee- and also had to work to regain mobility after being struck by a car just a few years ago.

I have listened to a young woman cantor at Mass, who a handful of years ago had difficulty drawing breath enough to speak.

I watched and listened as a young man who is blind, and on the Autism Spectrum, confidently walked up to the ambo and proclaimed the reading beautifully.

One group prayed with a participant who was was going in for surgery for cancer, and celebrated with her when the treatments were completed.

At our retreat last year, we had an incident wherein one of our participants, who was most likely a little over-tired and over stimulated, hit another- more than once.  In checking with the man who had gotten hit, he was most definitely shaken up, but quickly said he hoped the young woman (who acted out) was OK, and readily forgave her when she came over to him later and apologized.

Our lives are complicated, joyful and sometimes painful- and all of us have weaknesses, disabilities if you will.  What I hope you have seen here, is that there is SO MUCH to learn from those who cannot mask their fragility and disability, that they are called and desire to serve, and that they, and we, need companions on the journey of discipleship, to encourage each other in developing and sharing our gifts, and to walk alongside each other in our need.         

"Where is the star?" Following the Model of the Magi

The Holy Father's homily today was very poignant.  In it, he presents the Magi as models for all of us who seek The Light, and the temptations we face in our journey- that of our own perceptions and expectations, which can deceive us, and the temptation to miss, or reject the humility with which God comes to us.  In the tiny, helpless baby they recognized the One they were seeking, a recognition symbolized by the gifts they brought.

Adoration of the Magi

Pope Francis said something which got the juices running: 
"What is the mystery in which God is hidden? Where can I find him? All around us we see wars, the exploitation of children, torture, trafficking in arms, trafficking in persons… In all these realities, in these, the least of our brothers and sisters who are enduring these difficult situations, there is Jesus (cf. Mt 25:40,45). The crib points us to a different path from the one cherished by the thinking of this world: it is the path of God’s self-abasement, that humility of God’s love by which he abases himself, he completely lowers himself, his glory concealed in the manger of Bethlehem, on the cross upon Calvary, in each of our suffering brothers and sisters."

He is talking about a real stumbling block- something unexpected which challenges the way we view the world, and in a particular way, those around us.  Humility, littleness, real suffering and difficulties, and God in the midst of it all.  That really is a curiosity, a mystery worth thinking about for awhile... God- all knowing, all powerful, eternal- choosing to come as one of us, a newborn infant who needed all the care and protection of his parents, who grew up as we do, learning, working, loving, tempted, suffering and dying. 

Ecce Homo (Behold the Man)

This mystery is very much among us, and the same stumbling blocks we trip on, grasping for understanding- violence and exploitation of all kinds, war, homelessness, even illness and disability.  The people who live in these situations are different expressions of the same path that was foretold and brought into being in Bethlehem and ultimately on Calvary- that of humility.  It was in humility that God revealed Himself, and in which he still does.  

So what's the point of all this?  Well, really a question: what do you see when you look around you?  What do you see and feel when you see a homeless person slouched against a building or at an intersection or when you look into the face of a refugee, or a person with an intellectual or developmental disability?  I can tell you for myself, it is difficult to see faces, eyes, personality- it is hard to not be uncomfortable, to know what to say, and certainly to have much expectation. Yet there is something I have learned: these are people who know, among many other things, something about humility.  Each time we are with our special friends, we learn about joy, gratitude and patience, about providence and perseverance, and about taking care of each other- and a million other things we are always amazed by and which I would say, are the fruit of humility.

Did you read the story about this man, who was given $100 and then followed to see what he would do with it?  Well, as expected, he went to a liquor store.  Then, to the great surprise of his follower, the man came out with a large bag of food, which he proceeded to share with others. 
The point?  If we allow preconceived ideas, our own perceptions of how something should be, to lead us, we can be deceived, we can miss reality.  Without humility we miss the light, which leads us to The Light, the Truth, and which is revealed to us in the little ones, the suffering ones, in those from whom we might least expect it.  

This doesn't make much sense compared with the things we are taught to value.  This is the shift in perspective the Magi had to make, and which is also our constant challenge, as Pope Francis reminds us:   
"The wise men entered into the mystery. They passed from human calculations to the mystery: this was their conversion. And our own? Let us ask the Lord to let us undergo that same journey of conversion experienced by the wise men. Let us ask him to protect us and to set us free from the temptations which hide the star. To let us always feel the troubling question: “Where is the star?”, whenever – amid the deceptions of this world – we lose sight of it." [my emphasis]

Reflections on An Advent Dialogue with the Sick

This weekend I had the joy of beginning Joseph Ratzinger/Pope Emeritus XVI's short book The Blessing of Christmas.  The first part of this book is An Advent Dialogue with the Sick.  There is such a great wisdom and love in his words that just lifted my heart, so I wanted to share some of it with you.

First, though Benedict XVI is speaking to those who are sick, I found myself thinking of all the ways we can be isolated during this time- those who, like my husband and myself, are far from their families, those who are new to the area and have not built up a community of friends, who are in group homes or care facilities, those who work long or odd hours or solitary work, or who struggle with seasonal depression to name a few.  All of these things can prevent people from being able to share in the joy others feel at this time of the year.  In fact, in one way or another, I would imagine this is something we can all relate to, and he presents Advent as "a medicine for the soul that makes it easier to bear the enforced inaction and the pain of your illness. Advent can help us discover the unobtrusive grace that can lie in the very fact of being sick." [or isolated]

The word "Advent" (adventus in Latin) can actually be translated as "presence" or "arrival" (cf Ratzinger).  Typically that is not the first thing we think of: we think first of the waiting, or anticipation of the arrival.  This lends to a different focus- the word is intended to show in a very real way God's presence and closeness, his love- and the blessing he brings in his presence.  Benedict tells us, "in general terms, when they used this word, they intended to say God is here. He has not withdrawn from the world. He has not left us alone. Although we cannot see him and take hold of him as we do with objects in this world, nevertheless he is here, and he comes to us in many ways."

 

Roger van der Weyden The Visitation



When we are sick, isolated or lonely, we are taken out of the rush and routine of typical daily life, where there is little time- and frankly often little encouragement to reflect and make conscious and intentional choices in our external activity and inner life.  Benedict tells us "When I am sick I am obliged to be still.  I am obliged to wait.  I am obliged to reflect on myself; I am obliged to bear being alone.  I am obliged to bear pain, and I am obliged to accept the burden of my own self. All this is hard."  Yet, this is where the time of Advent can be especially full of blessing and meaning, especially for those who are sick, or who are feeling lonely or isolated for any reason.  Essentially what we are talking about is a visit- a visit from one who knows us and loves us more deeply than we can imagine, and who desires to come to us personally. 

 

In this sense, this time, difficult as it really is, can be seen as an opportunity, and Benedict challenges us to see it this way: "The Lord has interrupted my activity for a time in order to let me be still."  He proposes that it is in the stillness that God is waiting for us, and not only that but USING it.  He says, "we rebel against it, this is not only because it is painful or because it is hard to be still and alone: we rebel against it because there are so many important things we ought to be doing and because illness seems meaningless. But it is not in the least meaningless! In the structure of human life as a whole, it is profoundly meaningful. It can be a moment in our life that belongs to God, a time when we are open to him and thus learn to rediscover our own selves."  [my emphasis]

Myself, I begin to imagine the possibilities for someone who has a long-term illness, or who perhaps has more solitary work, or who has yet to build a community.  I have been inspired by the examples of the saints, and the stories of those who strive still, such as that of Kara Tippets (check out her blog at http://mundanefaithfulness.com/).  Benedict poses this question... "If I learn to accept myself in these days of stillness, if I accept the pain, because the Lord is using it to purify me- does this not make me richer than if I had earned a lot of money? Has not something happened to me that is more durable and fruitful than all those things that can be counted and calculated?  I hope I can remind myself of this when I'm fretting because I'm home by myself for a few hours on a Saturday morning because my husband is proctoring a test, or when I wake up at 2:45 am with back pain.  It is a moment, an opportunity I have been given, and He is there, waiting. 

I won't say this is true in every case, but often I have noticed that when a person is chronically ill, or feeling lonely and isolated, small gains, good days, little gestures of genuine friendship, become a beacon of light, and a moment to celebrate.  These memories also remain, and they have the ability to sustain us in the hard days when we are not feeling consolation.  They remind us of the truth that we are loved, that we are not really alone, and that there is good.   

 

Benedict ends with a great challenge, and a reminder:
"Perhaps we should try an experiment.  Let us understand the individual events of the day as little signs God sends us.  Let us not take note only of the annoying and unpleasant things; we should endeavor to see how often God lets us feel something of his love.  To keep a kind of inner diary of good things would be a beautiful and healing task. 
The Lord is here.  This Christian certainty is meant to help us look at the world with new eyes and to understand the "visitation" as a visit, as one way in which he can come to us and be close to us."

**If you are interested in reading the book yourself, here is a link: http://www.amazon.com/Blessing-Christmas-Joseph-Cardinal-Ratzinger-ebook/dp/B003UNLARG


Advent: A Sensory Heaven

I love this time of year... there is such an air of anticipation, light, music, decoration; it is just a feast for the senses!  This makes it a particularly good and easy time to share the story, and point out some ways to use things many of us are already using and doing to share the experience with those who have special needs...

 

The Wreath:

  There is SO much teaching you can do with your Advent wreath! Starting with the colors of the candles, purple for Jesus's kingship, and repentance for our sins, and rose for joy. Some like to focus on a theme for each week: though none are required, typically you will see themes of Hope, Peace, Joy and Love. With the shape and if it is made of evergreens- you've got a nice little reminder of the eternal life we hope for.

 

 Creche:

  There is not a much more visual (and tactile) way to keep our hearts in the reason for this season, tell the story of the Incarnation, and also teach about the preparation and anticipation that by using a beautiful creche.  There are a couple of ways you can do this, I have seen people put pieces out one by one, over the course of the month, or have it all out, but wait until Christmas to place baby Jesus in the manger with a prayer.  Some have their Wise Men travel around the room, arriving at the creche on the Epiphany- which is also a good way to emphasize not only our own journey to Jesus, but also that Christmas is a season, and not just a single day :-)  If you are able, it is worth investing in a creche that can be safely manipulated, but does not look like a toy.  You will be amazed at the story telling and arranging you see. 

 

 

Advent Calendar:

There are many different kinds of Advent calendar, which is wonderful because you can find one that best suits your needs.  There are some calendars like this that are more visually based: each compartment contains a magnetic figure to add to the scene in the middle, which allows you to introduce and talk about each person, animal or object one at a time.  Then, throughout the month we slowly see the picture emerge, which again, is an opportunity to talk about preparing and

anticipation. 

A calendar like this one could almost act as a simplified Jesse Tree, but requires a little more reading and focus than the one above.  For each day there is a small booklet, which can then be hung on a tree as an ornament.  In each booklet is a bible story, a song, or a prayer which can be read, sung or prayed together.  The stories are simply, but well written, and so are very easy to follow and read aloud.  I will say this, having used this calender in a classroom setting: this one can be difficult to use in a large group, if they are one that needs or will push to see the pictures right away, only because the booklets are very small.  I can also attest to the fact that it is durable! :-)   

 

 

Of course you do not have to buy an Advent Calendar... a perennial favorite is the Advent Chain- this was made clear by the absolute joy my religious ed class had this past weekend creating a chain to help decorate the children's activity area for our festival! One really nice thing about this is how personal it is, plus you can also make action oriented, and colored according to the weeks of Advent, Christmas colors, or many colors if you choose! One neat tradition I have seen with this chain is to include some some small action for each day, it could be service oriented, spiritually/prayer oriented, and also include a few things for enjoyment (like make hot chocolate and read a book with someone or take a walk to look at Christmas lights.)

 

Music:

Music has power to evoke emotion and tell a story, with or without words.  That said, does it sometimes seem like "O Come O Come Emmanuel" (beautiful and rich as it truly is) is about the only Advent song in existence?  This is one album that brought some beautiful, different and surprising songs to my attention.  I highly recommend supporting the Sisters and purchasing the CD, but if you just need one song, or want to listen first, pretty much the whole album is on YouTube.  These songs convey a quiet beauty, stillness and longing that complements any Advent prayer time or lesson.   

 

Also, especially considering some of the feast days we celebrate in December, you can never go wrong with a Marian hymn or song- have you heard this one?

You can even find some surprises on what seems to be a secular Christmas album! (Gotta put a plug in for this one too- but won't spoil it, check it out on YouTube, and I am guessing if you don't know Pink Martini it might take a little getting used to, but will quickly become part of your Christmas-time repertoire)

OK, OK, no more song videos... on to the final part I'll mention today: a Jesse Tree.
The Jesse Tree is named as you probably guessed, for King David's father.  It is basically a way to trace salvation history (and the lineage of Jesus) visually and scripturally, and beginning on December 17th, with the O Antiphons, the anticipation intensifies, and we examine some attributes of Jesus (i.e wisdom of God, key of David...).  Again, this is a wonderfully visual way to explore salvation history- it is scripturally rooted, but naturally breaks the story into "bite sized pieces".  Each day a (usually pretty short) Scripture passage is read, and the ornament with the corresponding symbol is hung on a bare tree (branch).  You can take as much or as little time as you have to explore the symbols, but it is pretty much guaranteed the ones you do this with will remember the story :-)  There are many ways to make these ornaments, this is the pattern I followed:  http://healthy-family.org/free-jesse-tree-advent-patterns/ but if you are feeling crafty, this will at least tell you the symbols to include, and scripture passages :-)
 

Next week we'll talk about some good books to share during this time! 

It's Been Awhile! Review of "Produce: Where Hope Grows"

 

In honor of Down Syndrome Awareness Month, I thought it would be a good time to bring attention again, to a certain upcoming movie.  "Produce" is actually not scheduled to come out until next year, but screenings were scheduled at the Down Syndrome Convention (with the star present, no less!) and I was able to see it there.  It is one of those movies that could very easily get 'passed by' in the theater line-up, but it brings a powerful message, and is one that shouldn't be missed if you have the opportunity.  Now, since it isn't out yet, I don't want to be a spoiler, BUT it is important to know a little about the story.

 

Produce follows the very unlikely friendship of Calvin and Produce.  Calvin is a former professional baseball player in a small Kentucky town.  His career ended when he suffered a panic attack at the plate, and since then has basically been 'skating by' in life, and in his relationship with his daughter, using alcohol to self-medicate.  That begins to change on the day he met a young man named Produce, working in the produce department at the local grocery store.  Produce has Down Syndrome.  With his upbeat attitude, persistent presence, conversation,questions and invitations, Calvin slowly begins to respond, and the two form a friendship. 

 

This friendship slowly begins to affect other parts of both Calvin and Produce's lives. The openness that Produce shares with Calvin trickles into Calvin's relationship with his daughter.  Calvin in turn with his stronger personality, supports Produce in his goals, and things he wants to learn, and in demanding respect from others.  Produce in his transparency, challenges Calvin in his fears, faith and the choices he makes, and ultimately Calvin and his daughter offer a friendship that really becomes more like a family.

 

I will be completely honest.  This movie will not blow you away by it's cinematography or writing.  It is a homegrown, grassroots labor of love.  What will without a doubt leave an impression is the obvious care with which it is done, and the heart of this story: the characters you come to know, the friendship that grows and sows life and hope in the lives of many others. It is also a strong affirmation of the dignity of each person, regardless of their ability- to see each person as a person, with their own story, strengths and weaknesses.   

 

So, in conclusion, keep your eyes open for this movie to come out in 2015, and see it if you are able!  You can follow their news at their website: www.iamproduce.com and on their Facebook page: "Produce: Where Hope Grows"  

 

          

The Function of Dysfunctional Behavior

 

 

Screaming, (excessive) crying, physical or verbal aggression, not following directions, running or climbing inside, interrupting, and yes, inappropriate language and undressing.  Have you thought of someone you know yet?  These behaviors can be disruptive, add tension and 'electricity' to any environment, and frankly, could probably test the patience of a saint.

 

I remember a horrible tantrum I was faced with in my second year of teaching- screaming, crying, kicking, the whole nine yards.  I was getting emotionally charged myself, and extremely frustrated.  Finally, almost in desperation, I asked him "what's going on... is there something you need?" Shuddering breath and tears, then "I'm hungry". After catching my breath, and marveling for a moment at what had just happened, I took him by the hand to help him up, and got him a snack. Afterward, all I could do was remind him to tell me when he was feeling hungry.   

 

I wanted to share a few helpful things I've learned along the way for approaching behaviors like these.  A helpful place to start is to distinguish the type of behavior you are observing: a "behavioral excess" like aggression, screaming or crying, a "behavioral deficit" (lack of skills) like communication, or academics, or directions or "inappropriate impulse control" like running inside, climbing on furniture or interrupting (cf. Stacy Taylor, MA, BCBS).   

 

Behavior has a purpose.  Behavior produces consequences.  There is a reason the person is engaging in the behavior, and they have continued to do it because IT WORKS.  It is communicating something that the person perhaps doesn't have the language or social skills to express appropriately. So the most important question to ask is "why".  Are they seeking attention, avoidance, access to some reinforcer, or to some sensory or physical need? 

 

SO, the first action is to make sure that any physical needs (sleep, food, water, bathroom, temperature), are met.  Also, consider any potential medical issues, like pain, sensory issues (including hearing and vision), stomach issues, or even PMS.

 

 

The consequences of the behavior either reinforce and strengthen it, or will weaken the behavior, so our reactions are very important in reinforcing the behavior we want to see, and building and keeping a good relationship based in trust. 

 

1st: Be specific as to what the behavior expectations are- and model it! 
Some people do need more modeling and help to know and do what is appropriate.
 

2nd: Be consistent.
Calm language and consequences that are consistent with your expectations takes time and practice, but they are crucial for building trust, avoiding power struggles and to de-escalate.
 

3rd: Focus on reinforcing positive behaviors, and positive consequences.    

 

Put Behavior In Context

Particularly if there is a recurring behavior, take a record of four things:

• what the setting was (where, what time of day, who... etc.),
• what occurred immediately before the behavior,
•  an objective description of what the behaviors are, and
• what happened immediately after the behavior

 Knowing the setting and what happened before can help you make changes to prevent behaviors.  An objective description of the behavior helps to target specific behaviors/skills to teach, as well as appropriate behavior to reinforce.  The final step is to develop a plan of consequences for when a problem behavior occurs, and when the desired behavior occurs.  This step can take some trial and error, and input from the person and their parents, or previous teachers/care-takers on strategies and motivators can be invaluable.   


Finally, it is worth taking a few seconds to calm yourself before responding to a problem behavior or conflict.  If you jump into an emotionally charged situation without being calm, most likely what will happen is that "gasoline will be added to a fire" and not only will you not respond the way you want to, but it will escalate the situation.  So, again, it is worth taking a few seconds to breathe deeply (even if it is just as you are walking over to the situation), say a quick prayer- and even self-talk if you need to "I am ok, I am safe, I can do this" but especially breathe.  The moment to calm keeps blood and oxygen to your brain instead of your muscles (for flight or fight), so you can stay in an executive state of mind, and ready to respond and problem solve.  
Hope this helps!

Making Prayer a Sensory Experience...

"For me, prayer is a surge of the heart; it is a simple look turned toward heaven, it is a cry of recognition and of love, embracing both trial and joy" St. Therese of Lisieux

The most beautiful thing about prayer is that it can be so incarnational- using our bodies, our senses, and of course concrete sacramentals to aid us in our response to God, who lovingly reaches out to us.  This is especially important in working with people with special needs, including ADD-ADHD and ASD, for whom repetition, movement, visuals and tactile experiences are such an important part of how they learn best.  So here are some things that can help especially bring out this sensory, incarnational aspect of prayer...

To get started, it's always easiest to begin with things that are usually present anyway.

Dim lights and Candle Light: we all know how mesmerizing candle light is.  This is a very easy way to encourage an atmosphere of the sacred and to direct attention and focus.  It is also HIGHLY symbolic of the presence, light and knowledge of Jesus.  Artificial candles do not give the same effect, and so, with safety precautions taken, real candles are best. 

Beads: There is something deliberately meditative and soothing about the movement of running your fingers over beads.  Beads have been used in prayer for centuries, and in many different religious traditions.  The Rosary and Divine Mercy Chaplet can be said using the same beads- and by the way, usually include other visual reminders which can be mini lessons- namely a crucifix and a medal.  The Divine Mercy Chaplet also has the beautiful image of Jesus to meditate on as one prays.  There are lots of methods for making a full rosary, or decade string, which is not only a good way to talk about how to pray the rosary or chaplet, but also personalizes it, and can then be blessed.  Here are a couple!  

How To Make Knotted Cord Rosaries
How to Make Sacrifice Beads/Rosary Decade

The Stations of the Cross: This can be found in every Church.  Not only is there a visual for each station, but movement from station to station, to 'travel' along the journey with Jesus.  Outdoor/walking Stations are also powerful in that space allows for larger, sometimes more tactile images to reflect on.  

Music: having chant, taize, or other meditative music playing softly, or available on headphones is soothing, encourages the atmosphere of the sacred, and personal meditation and prayer.



Sacred Art: We are blessed with a rich tradition of icons, statues and paintings.  Paintings are wonderful ways to communicate a story without words.  Icons are rich in symbolism and doctrine, as they are meant to be a "window to heaven" truly making present the person or event depicted.

 

Statues, especially figures that might later be gently handled, are also wonderful sensory additions to prayer, as they remind us of the presence and intercession of those who have gone before, the communion of the faithful, which also includes those in Purgatory and in Heaven.  One example is these small statues from Joseph's Studio (and carried by many Catholic book/gift shops) are beautiful, and made of resin, so they can safely be handled.  (On a side note, they also distribute the Fontanini nativity pieces, which are made of the same material.)   

http://www.roman.com/products.php?line=josephs-gifts-renaissance-general

 

Art Supplies! Some really do think, focus and express themselves better in pictures- their mind works in images, and having art supplies like paint, markers, available really is the best way to evoke a personal prayer.

 

Incense: this might be something for people to get used to, but there is wonderful tradition here,  recognizing something that is holy, of our own prayers and small acts ascending to God, as well as a pleasing smell.  This also tends toward an atmosphere of the sacred.  

 

Prayer Sensory Bins:

might include sand, water or oil, and/or or other applicable objects smooth rocks, shells, objects which invite touching, along with a scripture passage or picture to look at to lend toward making connections, relaxation, and meditation.  

 

Hopefully this gave you some ideas, and got the juices flowing... what other sensory experiences have been helpful in your prayer?