Weekly Update...On The Road to Emmaus Home

 A Week in the Life of Emmaus Home....

                                                       Is pretty amazing!

Our core members and participants have truly been "out and about", as per usual this week.

I thought it would be nice for you to see a sample of our schedule... What's it like to be a core member at Emmaus Home?

Monday:
Our core team visited ShopRite so they could buy food for lunch, then they came back to the Day Program in Aston to prepare something delicious in our kitchenette.

Tuesday:
Dance therapy is a favorite for everyone!

Wednesday:
In the morning we visit out music therapist, and then hand out food at Anna's Place in Delaware County. Anna's place is a Fransiscan organization in Chester that ministers to people down on their luck. They serve meals, teach classes, and help people mind, body and spirit.

Our Emmaus Home core members go there weekly to volunteer and give back to the community.

Learn more about Anna's Place here.

After that we all went to The Ritz 5 Theater in Philadelphia to see the long-awaited documentary about L'Arche founder, Jean Vanier, and his communities all over the world.

This was a deeply moving and beautiful film, and everyone should see it. I can only describe it as a slow journey through life with Jean and his friends. It doesn't have suspense, action, or much drama, just beauty and love.

If you have a loved one with a disability and you'd like to give family or friends a glimpse into your world, please share it.
Watch the trailer, then go see for yourself!

Thursday:

Thursdays are spent at the John Heinz Wildlife Refuge, not a bad place to be in this beautiful springtime!

Friday:
Art therapy begins the day, followed by a trip to the mall to practice our shopping skills, followed by lunch at a restaurant.

It's a beautiful life at Emmaus Home!

Emmaus Home Core Member Nick Steals the Show With His Talk 

at Philadelphia City Hall in Front of Hundreds of People!

A panorama shows the crowd at the opening celebration of the art show.

As part of the opening celebration for the Philly Autism Project Art Show at City Hall, Emmaus Home core member Nick spoke about his experience with art and what it meant to him.

Public speaking, especially for such a large crowd- could be a challenge for any of us, but Nick absolutely stole the show and blew everyone away!

Of course it was ambitious to have a core member with Autism speak in front of a large crowd, I think many of us involved were nervous in the weeks leading up to the event. However we kept Nick's best interest in mind- always mentally prepared to say, "This won't be beneficial for him, he cannot speak at this time." However he was very excited, and the performer in him came through!

The takeaway for me was about limitations. Along the way, we were all nervous, thinking, "Can he do this? Are we putting too much pressure on Nick?"

Of course, we gave Nick the option and free will to decline, but he was happy to do it. He knew he could back out at any time, but he also knew he had our support. We helped him write his speech, helped him practice, and encouraged him.

After the speech, his family were so appreciative that the Emmaus Home staff intuited that he could do this.

This is what sets Emmaus Home apart - we do not set limitations that do not have to exist. We want our core family members to achieve their greatest potential, all they need is opportunity and support.

Nick, along with fellow Emmaus Home core member Kevin, both had their artwork featured in the art show. Their work is encased in glass, along with the exceptional work of many other artists with intellectual disabilities, at City Hall now through April 27.

We could not be more proud of both men, and it was a very positive experience for all!

For more information visit Philly Autism Project Art Show Website by clicking here.

It's definitely worth a trip!

Kevin at the YMCA

At Emmaus Home we try to make regular exercise a priority. According to the Autism Society, a program of exercise and fitness is important on so many levels. To quote:

From an educational and life skills perspective, our job as parents, teachers and professionals is to regularly identify an individual’s areas of need and address them in the most adaptive way possible. There is a reason so many students have difficulty in a standard classroom setting. The focus on taking tests rather than “learning how to learn” leads to skills that are not necessarily applicable to future needs and goals. For fitness programing, my hierarchy tends to look something like this (in order of importance):

1. Develop, maintain and enhance movement skills
2. Pair exercise and physical activity with reinforcement to ultimately make the activities themselves fun and part of a lifestyle
3. Increase initiation and creativity skills through exposure to various modalities of exercise (different equipment and activities)
4. Support socialization through small group activities that include elements of teamwork and helping behaviors

For those with autism who often have difficulty attending to a task for durations longer than 10 or 20 seconds, creativity and socialization behaviors are not an immediate goal. It is far more. (Read more.)

To help our work with God's children at Emmaus Home, please donate HERE. May the Lord reward with eternal life all who do good to us in His Name. 

Philadelphia Autism Project Art Exhibit

The art works have already been submitted but the show is open to the public. Emmaus Home will be there. From the Philadelphia Autism Project:

 In honor of Developmental Disabilities Awareness Month, the Philadelphia Autism Project is launching the first collaborative art show Philadelphia: A Spectrum of Experiences.  Artists of all ages from the autism community in Philadelphia and surrounding counties are invited to submit for inclusion in the March – April 2018 exhibit.  This inaugural event is aimed at recognizing the talent of individuals with autism and increasing awareness of autism within the Philadelphia community. (Read more.)

Mass for Persons with Disabilities

From the Archdiocese of Philadelphia:

The Annual Archdiocesan Eucharistic Liturgy with Persons with Disabilities, The Deaf Community, Family, Friends and Caregivers: This annual Liturgy is held once a year at the Cathedral Basilica of SS. Peter and Paul at 18th and Benjamin Franklin Parkway, Philadelphia. Archbishop Charles Chaput, Archbishop of Philadelphia is the principal celebrant and homilist.  A light reception is held following the Mass.  All are Welcome. Save the date. This coming year the Mass is scheduled for March 24, 2018.  We encourage parish participation and individuals/parish groups to volunteer in assisting with all aspects of the Mass and reception. (Read more.)

From the Archdiocese of Philadelphia

Office for Persons with Disabilities & the Deaf Apostolate

1. Please assist in inviting families and individuals to this annual Mass. Parish groups or individuals who wish to assist with the Mass or reception are asked to contact the Office for Persons with Disabilities.   For more details or to register go to www.opdarchphilly.org or click here.

The Annual Archdiocesan Mass Honoring the Gifts of Persons with Disabilities, The Deaf Community, Family, Friends and Caregivers is Saturday, March 24, 2018 at 10:30 a.m. at the Cathedral Basilica of SS. Peter and Paul at 18^th and Benjamin Franklin Parkway, Philadelphia.  Archbishop Charles J. Chaput, O.F.M. Cap., will be the principal celebrant and homilist.  There will be a reception immediately following the Mass featuring entertainment by Santino Dragon New Year Brigade.  All are Welcome.  To RSVP go to www.opdarchphilly.org, or call the Office for Persons with Disabilities at 215-587-3530.

2.       Spring Contact Meeting for the Office for Persons with Disabilities, April 28, 2018: The workshop will consider how to foster active participation in worship for children with disabilities and their families.  The disability contact/advocate for each parish is asked to attend. Clergy, parish staff, parents and other parish volunteers are welcome to attend. For more details or to register go to www.opdarchphilly.org or click here.

You Belong - How to Foster Active Participation in Worship:   This workshop will be offered on April 28, 2018 from 9:30 am to noon at the Archdiocesan Pastoral Center. Parish Contacts for the Office for Persons with Disabilities and other parish leaders are encouraged to attend. The presenters are: Dr. Geralyn Anderson Arango from Holy Family University and  Gilian Lally, a Behavioral Specialist.  For the flyer or to RSVP go to www.opdarchphilly.org, email: opd@archphila.org or call 215-587-3530.

3.      Mothers of Children with Disabilities Retreat, May 1, 2018:  Click here for the online flyer and registration.

Mothers of Children with Disabilities Retreat:  Tuesday, May 1, 2018 at Malvern Retreat House, Sr. Suzanne Mayer, IHM will direct a retreat for mothers and grandmothers who are raising children with disabilities and also those who have adult children with disabilities.  Fr. Jim Olson will be the celebrant for Mass.  There will be time to pray, reflect, and chat with other mothers.  To register on line go to www.opdarchphilly.com. For more information please contact Malvern Retreat House at 610-644-0400 or the Office for Persons with Disabilities at 215-587-3530. 

Sr. Kathleen Schipani, IHM
Director, Office for Persons with Disabilities & Deaf Apostolate

Archdiocese of Philadelphia

222 N. 17^th Street, Philadelphia PA 19103
215.587.3913 phone /267.507.1215 video phone
sr.kschipani@archphila.org

www.opdarchphilly.org / www.deafcatholicphilly.org / www.religoiusASLapp.com

 

Summer in the Forest

We at Emmaus Home love the 2017 film Summer in the Forest. From the film's website:

Like countless others Philippe, Michel, Andre and Patrick were labeled 'idiots', locked away and forgotten in violent asylums, until the 1960s, when the young philosopher Jean Vanier took a stand and secured their release - the first time in history that anyone had beaten the system. Together they created L'Arche, a commune at the edge of a beautiful forest near Paris. A quiet revolution was born. Now in his 80s, and still at L'Arche, Jean has discovered something that most of us have forgotten - what it is to be human, to be foolish, and to be happy.

SUMMER IN THE FOREST invites us to abandon the rat race and forge new friendships. Amid the ancient trees, Philippe, Patrick, Jean and the others welcome us into their lives. If there are rules to break, they will be broken and if there is a truth to be told, they will tell it. Michel reveals his war torn past, Andre is desperate for a date, and young David will prove himself a hero in the fight against the forces of evil. (Read more.)

Cooking Class at Emmaus Home

Cooking class is an excellent way to develop fine motor skills, practice following directions, and other practical and necessary skills as well.

To help our work with God's children at Emmaus Home, please donate HERE. May the Lord reward with eternal life all who do good to us in His Name.

Opening Doors

From Tech Inclusion:

Another area is accuracy; accurate information is vital if you are a traveler with a disability. I have Spinal Muscular Atrophy and have very specific needs when it comes to traveling, which I communicate clearly. Yet it can still be incredibly difficult to find accessible places to stay you can trust. For example, property owners have told me their apartment is step-free, but forget about the small step up to the front door — which my wheelchair can’t ignore. My team will focus on developing new policies and features to ensure accessibility information is as accurate as possible.

And we won’t stop there. I want to make sure that accessibility is at the heart of every element of our company and our community, whether it’s accessible experiences or any other new specially adapted product.

Moreover, we’ll use our global resources to cater to people with disabilities beyond mobility, working closely with every community to ensure our platform is welcoming to as many people as possible. Lastly, we’re committed to making sure that Airbnb is a great place to work if you have a disability, and will be launching new initiatives to increase the number of applicants with disabilities.

It is a bold, ambitious agenda, and a necessary one. Even 25 years after the UN International Day for Persons with Disabilities was declared, we remain in the early stages of a tectonic shift in how people with disabilities are treated. We cannot allow another generation to pass without fundamental change. (Read more.)

Weight and Autism

From Spectrum:

The research so far hints that obesity in people with autism is different than in the general population. For one thing, weight problems in autism seem to follow a specific course: The pounds start to pile on at a younger age, and persist into adulthood more often. Many people on the spectrum have heightened senses, plus a fondness for routine, which makes them averse to new tastes and textures and susceptible to unhealthy eating patterns. And motor and social impairments, along with an affinity for screens, can limit physical activity.

Unfortunately for children like Nicholas, there is little appreciation of these differences as yet, and weight management programs are almost exclusively geared toward typical children. “If you have special education every day after school, how are you going to fit in sports?” asks Sarabeth Broder-Fingert, a pediatrician at Boston University. “If you have a kid who’s nonverbal, having a conversation about nutrition isn’t going to work.”

Some researchers are adapting programs to help children with autism expand their food choices and be less sedentary. The data trickling in suggest that these nascent programs offer benefits beyond physical health: In some young people with autism, they can also boost social functioning and self-esteem. (Read more.)

Learning to Thrive

From the News and Observer:

Had I known more about autism, I think I’d have recognized it earlier. The signals were all there from the beginning – the speech delay, the inarticulate moaning, the arm flapping hop-step he does when he’s happy. He could name every planet in our solar system and tell you what each one was like before he could respond to his name. He could tell me the difference between a meteorite, asteroid and comet before he could tell me what he wanted for lunch.

When he still wasn’t progressing typically by age 3, our pediatrician recommended screening him for learning disabilities. I was terrified, but I was also desperate. When it came to connecting with my kid, all my instincts were wrong. Kisses hurt. Hugs were OK, but only sometimes. A conversation was comically out of reach. I’ve always loved him. But I didn’t know him. I wanted to know my son.

After seven months of doctor’s visits, a panel of specialists came back with their verdict, and I hated every one of them for it. Of course I’d known a diagnosable problem was possible. Getting a diagnosis and getting help was the whole point. (Read more.)

Read more here: http://www.newsobserver.com/news/local/news-columns-blogs/article194143669.html?utm_content=bufferea680&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer#storylink=cpy

Emmaus Home at the Franklin Institute

Emmaus Home recently had an exciting outing to the Franklin Institute. It is important for our adults to be in a such a fabulous learning environment with others to practice social skills and increase the thirst for knowledge.

To help our work with God's children at Emmaus Home, please donate HERE. May the Lord reward with eternal life all who do good to us in His Name.

Ben Franklin

The Franklin Institute

The Giant Heart

Technologies to Lessen the Distress of Autism

From Behavior Imaging:

While the incidence of autism has risen precipitously in the last decade, one thing hasn’t changed much. It is still enormously expensive to provide ongoing education and therapy for autistic children. One proven treatment for autism is early and intense educational intervention. However, for many parents, that intervention is cost and/or distance prohibitive. In some areas, there are few or no options for after-school care or babysitting.

The increased incidence of autism paired with an ongoing dearth of professional resources means that families often wait for weeks or months for an appointment and must travel to the nearest major medical center for care, sometimes over great distances. As they wait for meaningful care and instruction, the family faces a host of risks.

In the paper, we said:

The constant vigilance to protect one’s child, one’s family, and one’s partner as well as one’s self can leave parents irritable and on edge indefinitely. These symptoms may cause clinically significant problems in daily social and occupational functioning, both from the perspective of PTSD and other physical and mental/behavioral health perspectives

(Read more.)

Kevin at the Surrey Center

Here is Kevin of our Emmaus Home family, working at the Surrey Senior Citizen Center as a volunteer for the first time. We are so proud of him!

Finding a Sitter

From Healthline:

The first place — and, arguably, the easiest — most special needs parents look to is within their own families and friend groups. Trust them? Absolutely! And they work cheap! But as grandparents age, or aunts and uncles move away, it can be difficult for parents to tap into that existing network. Additionally, you might get the sense (whether rightly or wrongly) that you are “imposing.” But, honestly, if you had abundant resources for your child care needs, you wouldn’t be reading this post anyway. (Read more.)

Early Diagnosis of Autism

From The Herald Sun:

Researcher Dr Megan Clark said sometimes parents and the medical community were hesitant to diagnose a child as being on the autism spectrum too early in life. “Currently in Australia, only 3 per cent of children are diagnosed as early as 24 months,” Ms Clark said. “We found, of the children diagnosed early, 73 per cent continued to meet the criteria for autism from toddlerhood through to school age, so it is possible to conclude that an early diagnosis is reliable and stable.”

The study found three-quarters of children who were detected early went to a mainstream primary school, compared with 57 per cent ­diagnosed later. “Often, one of the first questions around diagnosis is: ‘Will my child be able to attend a mainstream school?’ And our findings are encouraging for parents,” Dr Clark said. “Autism is a lifelong condition, but we know early intervention improves children’s ability to communicate and their cognition.” (Read more.)

Parenting an Autistic Child

From The Mom Kind:

Often times, we find ourselves doubting our parenting skills.  There’s this automatic shame you feel for not better handling a situation. This embarrassment for feeling sad. It is so hard not be hard on yourself.  As parents, we want the best for our children.  We want them to be the best person they can be and to live a happy, fulfilling life.

All too often, this expectation overruns us parents. The constant juggling act it takes just to make a trip out of the home can be overwhelming.  When we are feeling weak, this is when we feel as though we’ve failed.

The key thing to remember, their diagnosis doesn’t define who they are.  It’s okay not to explain their diagnosis everywhere you go. It’s also okay to do so as well.   Sometimes, you will feel like a warrior. You can conquer the world single-handed. Yet other times, you feel run over.  As if nothing at all can go your way. (Read more.)

An Autistic View of the World

From Mummy Est.2014:

I have to admit that lining things up has been something J has done so long that I can't remember when it started. It definitely wasn’t one of the first signs that concerned me. My concerns were his regression in his communication to the point where crying or laughing were the only real forms his used. He didn’t react to his name, or sounds the same as others his age, and he would develop ‘obsessions’ (it started as opening and closing doors, drawers, cupboards and you couldn’t stop or face a day long meltdown). Once he spent 15 minute opening and closing the same door in church.

J’s lining up started with lining cars up. He was very specific and would put them bumper to bumper and facing the same way. He would get frustrated if any of them were knocked or removed. When out and about he would line up sugar and sauce packets in the restaurants/café. I wasn’t overly concerned, after all that’s the way cars drive isn’t it? Following each other in a row? The problem we had was that at this point cars and vehicles was the only toys he would play with. We didn’t know how he’d react to other resources. Soon after we found he would line pretty much everything up-magnets on the fridge, stones in the garden etc. (Read more.)

Autism Acceptance

From the Herald Sun:

Researchers from the University of Surrey have observed that when there is a lack of acceptance around the needs and preferences of autistic students in mainstream learning environments, they feel “limited” and “different”. They internalise the negative attitudes and reactions of others and unrealistically compare themselves with students who are neurotypical — as distinct from developing a sense of what they’re capable of.

I’m autistic, and the fear of not being accepted has shaped the person I’ve become. Wanting to seem “normal” often takes precedence over what might be better and safer for me. Rather than saying no, I’ll act like I’m enjoying brunch out at a restaurant, even if a quieter space would make it easier to connect with friends and family. If I feel besieged in a crowd, rather than slowly finding a way out or meditating to stay calm, I’ll spend most of my energy ensuring that I don’t appear to be affected. Which doesn’t mean that I’m not. It just means that I’m pretending not to be. And doctors have congratulated me for that. They have commended what they describe as my “adaptation skills” and the ability I have to not seem autistic. (Read more.)

Life After Special Ed

Are schools doing enough? From Disability Scoop:

Schools are legally obligated to create meaningful post-schooling plans for students with disabilities as part of their Individualized Education Programs, or IEPs. Under federal law, special education students must have transition plans in place by age 16 that include work, school and independent living goals that a student would like to achieve. Several states require schools to start this process at age 14. But Kate’s education failed to set her up for higher education or a career, as is often the case with special education students. Her experience after high school shows how important legally mandated transition plans and services are — and demonstrates how hard it is to do them right for all students. (Read more.)

Night to Shine

Friday, February 9th - 7:00pm
St. Malachy - Actors' Chapel
239 West 49th Street

Register HERE.

Night to Shine is an unforgettable prom night experience, centered on God’s love, for people with special needs ages 14 and older. On one night, February 9, 2018, more than 500 churches from around the world will come together to host Night to Shine for approximately 90,000 honored guests through the support of 175,000 volunteers! - Night to Shine Website

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Watch Last year's highlights here.

The Emotional Weight of Autism

From the beautifully written blog Finding Cooper's Voice:

After almost seven years I’ve learned how to ask for help when I need it. I had too. I was drowning.  I’d been called a martyr one too many times. I’d been accused of doing it all by myself. And maybe that’s true. But in my defense, I truly believed I was the only person that could help my autistic son. I used to think that no one would ever truly take the time to understand him or decipher his needs. I thought that no one could handle his screams or hums. Or that no one would take on the burden of changing his diaper. His needs were so intense I figured it was just easier if I did it all myself. When Cooper turned six I had completely burnt myself out. I wasn’t sleeping. My back was so messed up from carrying his 65 pound body. I was anxious and irritable. I was always sick. I was drinking way too much caffeine during the day and one to many glasses of wine at night. (Read more.)

Many mothers must often leave their jobs in order to take care of special needs children, which can lead to poverty. From HuffPost:

 I’ve been asking my community of moms who have children with disabilities what they do about paid work. Many moms do work when their kids are young – this is when daycare spots for kids with disabilities are more plentiful – if they can get to the top of the long wait lists. Other moms have teenagers and have been forced to opt out of paid work. And some have flexible employers – although these types of employers are sadly the exception. Yet others piece together a freelancing life, picking up work here and there, like I do now.

Many families slowly inch their way towards poverty. We bleed money every month. Ironically we need a higher income even more than we did with any of our other kids. We pay for our son’s therapies out of pocket and we need to save for his adulthood because of the abysmal government rates of disability assistance that loom in his future.

“I left my job I had for 20 years when my son started high school, too,” one mom told me last week over coffee. When he was younger, they had cobbled together care with grandparents, but their son’s needs became more pronounced when he hit adolescence and the grandparents inevitably aged – the arrangement no longer worked. So the mom had to resign. (Read more.)

Social Anxiety and Performance Fears in ASD

From Medical Research:

Approximately 40 percent of youth with autism spectrum disorder (ASD) are diagnosed with a co-occurring anxiety disorder.  Social anxiety is a common presenting problem for these youth. Youth with ASD and increased social anxiety have heightened threat sensitivity, particularly in relation to performance fears, as measured by a brain signal response called the error-related negativity (ERN), which measures response to errors. The threat sensitivity-performance fears association remained even after controlling for anxiety symptoms other than social fearfulness. (Read more.)

ADHD and Autism Diagnosis

From Health Beat:

 Like most 7-year-old boys, Darren Meeks loves to play with his monster trucks and ride his scooter, but Darren knows he's different. "I'm autistic, so I'm more sensitive," he said. Darren was diagnosed with autism at age four.

"He was diagnosed with ADHD a year later," said his mom, Myranda Meeks.

"Forty to 60 percent of children with autism also have attention deficit hyperactivity disorder, or ADHD," explained Dr. Geraldine Dawson, the director of the Duke Center for Autism and Brain Development. Dawson said it's unknown why the conditions tend to overlap, but she said children with both may get a delayed autism diagnosis.

"In fact, those children are 30 times more likely to be diagnosed with autism after age six," she said. So, researchers at Duke University are conducting a study that focuses on early detection.

"We're going to be following 9,000 children from the community," stated Dawson. Researchers will measure the brain's response to information to help them better understand the link. "We want to see whether treating the ADHD symptoms will allow the child with autism to better benefit from early intervention," Dawson explained.

Myranda admitted life has changed after the dual diagnosis, but Darren is thriving in school and has lots of friends. (Read more.)

Holiday Memories

Emmaus Home had a wonderful trip to Philadelphia where we visited the Christmas village at city hall. The holiday season may be over but the joy our men and women bring is something that lasts all year long!

The Loneliness of Autism

A mother speaks. From Finding Cooper's Voice:

For me autism is frustrating. And exhausting. And heartbreaking. And dreadfully hopeful. And painful. And above all a process. A slow process that crawls along with glimpses of the future. Autism is expensive. And SO unbelievably time consuming. Autism can take your time. It can suck up hours after hours of time.There are so many parts that go into parenting a special needs baby. And it’s different for everyone. But to be perfectly honest, for me, autism is mostly just lonely. It’s quiet a lot too. I pick Cooper up from school and there are no conversations about his day. No desire to show me what he made that day or to tell me what he wants to do when we get home. I’m mostly just sad because I don’t know this little boy. And I might never. I am grieving for a child I’ve never known. (Read more.)

A Death in the Emmaus Home Community

Anne's mother was called home by Our Lord on Christmas Day. Please pray for the repose of her soul and for her grieving family.