Thursday, November 3, 2016 6:30 - 8:30 p.m.
Thursday, November 3, 2016 6:30 - 8:30 p.m.
It is difficult to locate large-print Missalettes. Theough there may be more of them provided by publishers, we wanted to share the one that we found that is available.
It is published by
Here are the results from the national survey on disabilities and parish life that was run in 2016 by the Center for Applied Research in the Apostolate. Click below for the report, downloadable as a pdf.
For a feature length article on this report and its findings, click below and read the America Magazine Juily, 2016 issue.
Click here for prayer service.
To join the Prayer Service call 800-791-2345, then enter 90398#.
Join NCPD in a Prayer Service on the National Day of Prayer for Mental Illness Recovery and Understanding October 4 at either 3pm or 7pm Eastern. This is a chance for persons with mental illness, their families and friends to join in prayer especially in places where no other prayer service is planned or for those who cannot easily get to a prayer service. Join us for an experience of prayer and community. The Prayer Service will be available for download on the NCPD homepage before the service. If you register below (optional) we will email you a pdf of the prayer service beforehand.
Learning to Walk On Our Own by Tim Tucker
His first two steps at a little over a year old ended with him falling face first onto the floor. A complete and total faceplant. He discovered at the same moment we did that at the time he lacked the reflex that most everyone has of putting our arms out in front of us when we fall.
This, rightfully, made him reluctant to try walking again. Plus, as we would later learn, he had enough sensory issues to make walking specifically, and living in this world in general, a most challenging feat.
So, much to his credit, he adapted and created his own way to get around. As long as he was touching something that itself was securely stationed on the ground, he would put his hand on or around it and walk. This ranged from people's hands to walls to furniture to parked cars. If the distance to the next stable object was too great, he would drop and crawl to it, stand up again, hold on to that object, and keep going.
We would go on half-mile walks together, me holding his hand. He wore out multiple pairs of slipper shoes (the thin, leathery, slip-on things that have next to nothing between the kid and the ground) because he needed to feel everything about the ground underneath him to feel safe.
Then suddenly one day - at almost his second birthday - he let go and took a couple of steps in a sort of walk-lunge to a couch. Hours later, he took a few steps in the bathroom where a wall or counter was never more than a step away.
Then two days later, he was running around the house unfettered and free.
Somehow, something wonderful triggered inside him - belief.
All along, you could tell it wasn't that he didn't want to walk; it more seemed that he didn't trust the world yet enough to do it. And then something aligned within him, courage won out over fear, and he took his first steps on his own out into an uncertain world.
I think about how often I do this myself. I fall on my face. I doubt. I'm afraid. I find safe things to hold on to. I move from safe thing to safe thing. I start trying to move around again, but I only do it when things are grounded and secure. But eventually something in me triggers that first free step out on my own two feet. Then I take another.
And then, just maybe, I find myself running.
We'll all fall again. My son has, I have, we all do. It's inevitable. It's just how life works. But we know we fell face down and got up before, and we can do it again.
I would say that when he gets in our recliner and rocks and smiles that then he is content with how things are, but I really don't know. He simply can't tell us.
His most direct engagement with us is when he scripts something between single words and short phrases and wants us to repeat them back. Most of them even to us are cryptic at best. Sometimes he finds this hysterical. Sometimes it's part of his need for order. It is almost impossible to glean from the scripting how he feels. There seems to be little, if any, correlation.
He participates in things when he feels like it, which isn't often. He protests in some way much of the rest of the time. Sometimes a situation is so overwhelming that he completely panics. As he closes in on 11 years old, it seems like more and more that the world is not a place he feels that comfortable in. But at least in his routines and rituals, he has carved out a path in which the world makes more sense to him.
The change to get here has been gradual. I simply don't know what to make of it. He is changing more and more. But I have at least learned that this is neither good nor bad. It just is.
We can challenge him to break out of some routines and try new things without too much protest beyond screeching and stomping. But sometimes, he becomes so overwhelmed and scared that he goes into full-fledged panic. Awareness of safety is non-existent, and he is too big and strong to control and keep safe in certain situations. And most of the time, I have no idea what is going to happen.
We don't do this because there is anything wrong with routines and rituals. They can normalize life for him. We just don't want him to be so stuck in them that he can't do anything else.
I really just want him to be happy, to become the fullest expression of who he is and can be. I don't know if I'm helping him do that - at all.
There's nothing wrong with him. Let's get that part straight. Things just seem to be so hard for him.
The desktop background on my computer is the two boys playing on the living room floor, sort of half wrestling, both smiling. That feels like so long ago. Their interactions have changed. Our younger son tells us he feels like the big brother now. I don't know what all to make of that either.
I know the better question to ask is whether this really is how he wants to be and do and live in this world. Maybe it is. I truly don't know. It just seems to me like this isn't where he wants to be.
There is so much you and I cannot know about our kids. But whatever I can or cannot know, I at least know what I can keep doing.
I can keep loving him with all my heart.
I can do the best I can to help him be and become the person he wants to be, even if so much of that remains a mystery.
Then I can try to trust that this will get us there somehow.
It's not the clear answer we want, but it's a start.
The conference in Rome, Living Fully 2016 - Disability, Culture, Practice and Faith was attended by people from around the world: individuals and families living with disabilities, service providers, clergy, lay pastoral ministers and theologians. The premise, purpose and proposition of the event is that disability is part of being human and that persons with disabilities are each a person first, not “special” or different. This does not diminish the struggle that comes with disability in life, but it does remove the medical language that defines it as a condition to be diagnosed and cured. The Archdiocese of Newark was represented by myself and Mary Beth Walsh with her son Ben and husband John, with Mary Beth and I presenting as well.
In “Don't Worry, He's in a Perpetual State of Grace!" I challenged sentimental stereotypes of persons with disabilities that undermine relationship and participation, as well as increase a sense of isolation for individuals and families living with disabilities. For inspiration I suggested looking to the model of Jesus, where accounts of transformation occurred within individual encounters. So we should focus on the person before us, getting to know the person, which includes learning about his her gifts as well as support needs. Further, utilizing evidence-based practices facilitates this and participation.
In “Autism, Culture, Church: From Disruption to Hope,” Mary Beth pointed out that experiences of autism often contradict the sentimental view of individuals with disabilities and acknowledged that the experience of disability is varied, can be messy and raises challenging questions of faith for individuals, parents, families and the Church. As a Church we need to respond in actions of love and welcome, even if we do not have words for the answers.
In “Taking Ben to Church: Lessons Learned,” Mary Beth shared her family’s experience of acceptance and affirmation at their parish, St. Joseph Church in Maplewood, NJ. From the children, to the person in the pew to the parish leadership, she felt that difference is valued and affirmed
I facilitated group conversation on some of the presentations through the lens of Jesus challenging structures of status quo, as reflected in Mark 2: 1-12. This is the story of the friends who take off the roof of the home where Jesus was staying, digging through it and lowering their friend who was paralyzed through the hole created to meet Jesus. Though this is often considered a story of healing, it is primarily a story of conflict which challenged existing power structures, and also affirmed the power of the faith of the friends.
There were many wonderful presentations, but one in particular by Liam Waldron, “Living Fully: The Challenge of Loneliness,” pointed out that loneliness is a universal human experience, one that is often magnified for individuals and families living with disability. A memorable quote from his presentation for me is, “Loneliness persists where love is absent. Yet, love is not invented every day, but built through the patterns developed over time.” The implication is clear, as a Church, universal and within each parish, we need to think of how we can respond to this real need.
There was further US presence by Jan and Martin Benton (NCPD), Sr. Kathleen Schipani (Archdiocese of Philadelphia and President of NCPD Board), Maggie Rousseau (Archdioceses of Atlanta) and Mary O’Meara and her husband Terry (Archdiocese of Washington DC). US sponsors for the event were Our Sunday Visitor, NCPD, Loyola Press, Friendship Ministries and the Jack Del Rio Foundation.
It was an inspiring week of possibilities that I hope we can continue to carry forward here. Prayers from families in the archdiocese were forwarded to Pope Francis along with the prayers from our liturgies in Rome. It was difficult to say good-bye after four great days together. The last day of the conference everyone was together to reflect on the past few days and identify what each of us would like to take back to our local church, as well as what we wanted to suggest to the universal Church. This included individuals with intellectual and/or developmental disabilities, clergy, religious and lay pastoral ministers, family members, theologians and service providers. A striking petition from closing prayer one day, “A quest for participation is not enough, we will be taught by one another.” May it be so, that we are all are living fully in the Body of Christ.
Please see photos below to capture some of what transpired.
Also, the links below shares coverage by Rome Reports, in English and Spanish. http://www.romereports.com/2016/07/05/three-day-living-fully-2016-conference-in-rome-celebrates-human-life-and-the-disabled ￼ Three-day Living Fully 2016 conference in Rome celebrates ... www.romereports.com July 12, 2016. Pope Francis sent a telegram with his condolences for the victims of the train accident that occurred in southern Italy. The Pope says he shares the ...
Executive Diretor Janice Benton and Kate Fialkowski presented at a luncheon roundtable at an interagency conference on ending domestic violence held at the Catholic University of America in July, 2016.
Click below to read the presentation by Kate Fialkowski.
Here is a handy parish resource guide for disability ministry from the Diocese of Harrisburg. Many thanks to Ginny Duncan Director of the Office of Ministry with People with Disabilities, for sharing with NCPD! Download for free at link below.