July 18, 2013

Over the Moon


On a Saturday in April, one of my longstanding dreams came true. For many years I've dreamed of working with church and other community volunteers to meet one of the most desperate needs of one of the most under-served groups of people living with disability out there - respite for families living with autism. Year after year as we planned transition retreats for families with special needs youth transitioning from school to adult life, my voice must have felt like the drip, drip, drip of water torture to my co-workers - "respite, respite, respite - there is nothing you can do that would be more meaningful or helpful to these families than providing respite!" Well, finally this April I got a chance to see this dream come to fruition. Bridge put on its first Spectrum Respite Retreat for Tweens and Teens with Autism.

Being the single parent of a child living with autism and a communication disorder, I know the challenges and needs of these parents all too well. Exhaustion is caused by 24/7/365 hyper-vigilance as we try to keep our kids safe and healthy, rarely getting a break due to our broken social services system which has huge holes in the 'safety net'. It's hard to explain what it's like to NEVER be able to turn off the fretting and worrying, to have difficulty getting enough sleep - or even resting while asleep.

Most parents of kids with autism are plagued by anxieties the average parent could never even imagine dealing with. Some have kids who have to be watched like a hawk or they will wander off and end up in danger, some have kids who are bullied at school, some have kids who will tear up anything they can get their hands on, and others have kids who self-harm. These vulnerable kids are often extremely anxious as well, which can cause outbursts of violence if their behavior is not watched closely and managed carefully by knowledgeable people during all their waking hours.

One of the hardest things about offering respite for parents of kids with autism is simply that they're good parents. They love their kids dearly, and want to make sure they are safe from harm. So they aren't willing to leave their kids with just anybody. The very idea of leaving them with strangers seems at first blush totally ludicrous to a parent who knows just how complex their needs are. I knew that would be a hard sell, no matter how desperate the parents were to get a break - but I still wanted to try.

Our first step was to advertise the upcoming retreat. I designed a flyer that I hoped would entice parents to at least call for more information. We distributed the flyer through the primary conduits of information to local families of kids with autism - email listservs, disability websites, community calendars, etc. Then when the parents called, I spent as much time as necessary talking to each one, even if it meant hours. I told them I was the parent of a teenager with autism myself, and understood their feelings. That went a long way toward thawing their reserve. I learned everything I could about their child: What they liked, what they disliked, their common behavioral issues, how they communicate, etc. As the parents talked, I took notes. Aside from intake, I also developed a registration process geared for this type of event and the people we would be serving.

In designing and executing the kids' program we partnered with other community disability, faith and volunteer organizations. From Seattle Children's Autism Center we got input and resources for our program for the kids, as well as behavioral coaching for volunteers on the day of the event. Bethesda Lutheran Communities and HeART of the Spectrum each provided an activity station appropriate for kids on the spectrum. Band of Brothers Northwest provided volunteer support, including a buddy for each of the kids to hang out with, and they recruited several members of Redmond Chorale to join them. Holy Spirit Lutheran Church of Kirkland hosted the event, provided funding and a team of volunteers. We also had several of our wonderful Bridge volunteers helping out as well.


We planned to use the entire downstairs of the church for the retreat, including the large preschool classroom, the library, the theater, and the wide hallways. This better enabled us to control points of exit - vitally important since some people with autism tend to wander. The activity stations were set up the night before the event, with tables and chairs spaced out to avoid crowding, which people with autism often find stressful. It was our intention to put as little pressure on the kids as possible, letting them wander from activity to activity as it suited them. People with autism can get stressed out by transitions from one activity to another, and we didn't want to spike any behavioral outbursts by forcing transitions when they weren't ready.

Before the participants arrived, a training session for the volunteers was held in the theater. They were coached on the common characteristics found amongst people with autism, and how to interact successfully with these sensitive folks. Then the volunteers who were to be buddies were assigned their buddy, and each was given a lanyard to wear around their neck. The lanyards held cards that had the name of a registered kid, 10 helpful things to know about them, and 3 suggestions for dealing with behavior. With these lanyards around their necks, each volunteer buddy would have helpful information at their fingertips throughout the retreat. The next step was for the volunteers to take a tour of the activity stations to familiarize themselves with the options they would have. Thus prepared, the volunteers waited for their buddies to arrive, the lights were dimmed and everyone quieted down - noise and bright lights can also be quite stressful to those on the spectrum.


As the participants arrived, a photo was taken of each kid with the parent(s) who dropped them off, and their names were written on it. This was to ensure that they were given to the proper person when they were picked up. Many of these kids were non or partially verbal, and could not tell us whether the person picking them up was their parent. Since we didn't all know every family well, we were taking no chances. Each kid was introduced to their volunteer buddy, then they all went downstairs together - buddies together with parent(s).

The first stop was the PECS (Picture Exchange Communication System) station. Here each child was given a cardboard strip with a row of Velcro tabs on it. They then chose from Velcro-backed pictures of each available activity and decided what they wanted to do, and in what order. Putting them on the cardboard strip in a row, they created their schedule for the day. The PECS strips are a common feature of special needs classrooms and programs, and most kids on the spectrum are familiar with them. They make kids with autism feel less anxious because they know what to expect, and they also give the kids a feeling of control which is reassuring. They had the option of changing their schedule anytime they wanted to, so they weren't locked in if they changed their mind.


The kids chose from a variety of activity stations including: Trampoline jumping, board games and toys, Disney movies, Game Boys, taking a break in a tent full of pillows or on the giant bean bag chair, creating an art project, a Sunday School activity or sensory activities. They also scheduled when they'd like to insert a lunch break, and there was a designated place where they were free to eat the lunch they'd brought with them anytime they wished. During this process the parents were telling the volunteer buddies anything they felt would be helpful for them to know in dealing with their individual kid. Watching anxiously to make sure their young ones were ready to launch, they gradually peeled away one by one - going off to do their chosen activity for their 3 hours of freedom.

I'm not going to lie and tell you this thing went off without a hitch. There were definitely hiccups in the plan that required rapid decision making, change in direction, and adaptation to real time events. There were moments when kids were stressed out and needed to withdraw, but we anticipated that and provided places for them to do that. Being in an entirely new environment with a bunch of total strangers is not easy for a kid living with autism. But amazingly, only one child had to leave altogether due to high anxiety. We're hoping next time we'll be able to smooth his arrival experience and enable him to stay for the entire event. The thing is, every time we do one of these respite retreats, we'll get better at it. But for a first try, we didn't do too badly: 20 parents got a break from the demands of parenting a child with autism, and 22 kids on the spectrum had a 3 hour program of appropriate activities. On the whole, the feedback from kids and parents was that they had a pretty good experience and they'd do it again.


The feedback from the volunteers was also good. Overall they felt this was a very rewarding way to spend part of a Saturday. I heard over and over as they left that they wanted to be invited to participate when we do another respite retreat. It was clear that they could definitely see the need and felt good about being able to contribute in that way. 

As for me? Well, I'm just over the moon.

For more photos please see our Facebook photo album.


July 2, 2013

What moves you?

Shared by former Bridge Chaplain Dave Emery

As I move away from Bridge, I realize again a number of things which may be worth sharing here.
Saying goodbye is not as important as saying hello. We are frequently moving through life with change and loss. I am quite amazed at how those I love with disabilities are great examples of this. In so many ways they show us that change is a way of life not something to be avoided ignored or feared. Simply seen most of those with disabilities need caregivers to assist them in a few or many ways. Most of these caregivers come and go throughout their lives frequently. Still, the way in which we get attached to people and circumstances is no different here than anywhere else. Often great friendships and bonding take place with these task performers that give of their time efforts and care. Yet, the turnover is extremely high with many of these folks. Letting go and starting all over again happens repeatedly. What I have witnessed and what I commend to you here and now is the way in which new relationships happen at a deeper level more quickly for most, and what a real benefit it would be for all of us to learn this as well.

Unpaid friendship is a gift.  Those of you who have gotten to know me over the last few years know how crucial I feel companionship truly is. People who walk beside us and don't try to fix us change us shape us or solve all our problems are a rarity and an incredible blessing when they appear and join us. Accepting us as we are. Sharing in silence and listening to us even if there are no words is such a blessing. Feeling with us what we face along life's journey; without taking on our burdens sorrows or hardships is amazing. Choosing to see us, listen to us, accept us, put up with our idiosyncrasies and differences, and staying with us even when we sometimes push them away or ask for too much is incredible. These are those we can really be ourselves with and truly party and celebrate with in such fun ways.

Some have said that if you aren't moving forward you are moving backwards. I say that is nonsense. Most of us just don't want to move. We stay where we are as long as can trying to keep everything the same and doing the best we are able. Yet, we find out this is impossible and frequently we keep doing it anyway even when it is awful, just because we believe this is what will keep us happy even in our misery. What funny human beings we are. Moving is imperative not just because it is unavoidable, but mostly because it is life giving. The song I Dare You to Move by Switchfoot says this as well as anyone can. What happens when one can't move. Those with physical challenges still move. They do so as much and as often as possible because it is so life giving for them. See the reality is that this is a brand new day, and how we choose to live it really is our choice. I hope you will be moved to closer relationships to others yourself and what is beyond us.

The simple truth is that every time I am with someone else I see someone amazing. I hear of life in a different way. Whether the encounter is brief energetic long depleting or even redundant it is someone else there connected engaged interacting and present. This is in itself worthwhile blessed and exceedingly meaningful. It may even make a difference to the other person as well. WOW!

No matter how this moment finds you, I trust you find this moment God Breathed!!!  I pray this day moves you in direct connection with others and God's amazing grace.

March 4, 2013

An Invitation to Invite

Bridge's Executive Director, Jack Staudt, recently gave a Temple Talk at his home church, Holy Spirit Lutheran (HSLC). Here he invites his fellow congregants to join him in thinking about how to invite people who live with disabilities. 


Compassion and Disabilities 
HSLC Temple Talk                                                 
February 17, 2013

What is Compassion ? 

It is = Empathy = Kindness = Concern = Consideration …. + Love.


LOVE… a word I regard as necessary in a conversation about Compassion … is a popular word in the Bible.

The word “Love” is in the King James Version 280 times– and in the New International Version Bible 508 times. (Perhaps our more modern translations see our God as even more Loving?)

I am going to share with you some thoughts about compassion and love for people who are perceived to be, different from 'us'. As you may know I work for Bridge Disability Ministries, and I am a member of the Holy Spirit Inclusion Ministry. So my message in this Temple Talk, is about compassion for those among us who live with disabilities.

What about Love, for those who appear different from what we call “normal”, those who live with a Disability. Are they to be less loved?  Our Lord gives us a clear instruction in I Cor. 12: 21-22, NIV:


People with disabilities make up the single largest minority in our country. They are also the poorest the most unemployed and often most dependent upon others to live a full and rewarding life. Because of these limitations they are also the most isolated, and the most invisible population. But this minority group is also one that you and I can become part of today.

All of us as members of Holy Spirit Lutheran Church can be very proud of the inclusive nature of our congregation. This church has become far more inclusive, far more receptive to those who are different in any way … and yet the same in every way … in the eyes of our Lord Jesus Christ. But there is more that we can do.

I'm going to quote some thoughts that come from a book written by a former Pastor and a person who has spent many years in service to people living with disabilities; The Lost Mandate:  A Christ Command Revealed,  by Dan’l C. Markham.

“It’s a real surprise to learn that of the 35 recorded miracles of Jesus in the New Testament, three were people Jesus raised from the dead and nine were miracles which broke the natural laws of physics – including turning water into wine, feeding the 5000, walking on water and calming a storm. The remaining 23 miracles involved people with disabilities: six involve mental illness and the remaining 17 involve physical issues such as blindness, deafness, paralysis, a withered hand and leprosy. That gives a clue to the heart of God for people with disabilities and an indication of the priority He gave them. In fact there are 43 direct references to disability ministry in the Gospels and many more indirect references – 16 in Matthew, 9 in Mark, 16 in Luke, and 2 in John…”  *
One of those references is in the story of the Great banquet in Luke 14:


In The Lost Mandate, Dan’l Markham says this Bible passage in Luke is central to our understanding of Jesus call to serve and to love our neighbors.
“The Holy Spirit might be saying something like this:

'Go out with my fervor to bring the lost into my house, my Church. And make sure you go with priority and with the greatest zeal to those who are the most marginalized - the poor and those affected by disability, who are the poorest of the poor.   There is no more important task for you to undertake for me.' " *

So you might ask, “What does this mean to me, what am I to do? Holy Spirit Lutheran is already 'Inclusive' of all people”.

Again, from The Lost Mandate I found this insight:
“…. Ministry (and church mission support) is made a reality by offerings of time, talent, and treasure.  … Pastor Billy Burnett, of Joni and Friends, adds the all-important word to this list –  touch. Disability ministry is much more than providing wheelchairs and retreats for people affected by disability. It ultimately is personal ministry to people with disabilities, bringing them into our circle of life both socially and spiritually, and seeking permission to be brought into their circle. It is most importantly “being with”. *


So I leave you with this final thought. Let's break up the word compassion, and think of it as two words, Come and Passion. Let us invite people to Come and then display the Passion to engage them. Go out, as the Master instructed, and invite those who live with disabilities to the banquet of joy in Holy Spirit Lutheran Church, and bring in those who might not feel invited, those who have not yet been welcomed.

And then, as Our Lord Jesus commands us, show love for your neighbor, by simply being present with them.

Jack Staudt         
Holy Spirit Lutheran Church

*From The Lost Mandate  by Dan'l C. Markham  (2012-11-26).  

February 6, 2013

Where Everybody Knows Your Name


Ardis looked at me with her bright, intelligent eyes as she labored to express her thoughts. When I had difficulty understanding something she said, she patiently repeated it until I got it. She is in her 60's now, and lives with cerebral palsy. She has a lot of pain, extremely limited mobility, requires the use of a walker to get around, and has difficulty communicating due to poor oral motor control. I've seldom encountered a person with her patience, persistence and compassion towards others despite her own challenges.


Over nearly 20 years of involvement with Bridge, Ardis has met many people she would not have otherwise known. Bridge expanded her world, and gave her an extended family. Originally, she was attracted to the Christian values of the organization, and was particularly appreciative of Bridge's advocacy for people living with disabilities and treating them with dignity. And more recently, she found herself turning to her Bridge family for support during a period of crisis in her own family.

Her sister and brother-in-law are very important people in Ardis' life, and over the years have provided support of all kinds, including emotional support and transportation so she can get out of the house, run errands, and just visit. When her brother-in-law and her sister were diagnosed with serious illnesses one after the other, she became very fearful and anxious about her future. At the Roots ‘n Wings Support group meetings, she was able to work through her feelings of anxiety about possibly ending up alone and isolated as her family had less time and energy for her. She shared her fear of facing her own mortality, and that of those she loves. She was learning to be more independent, talking to friends about her concerns instead of only sharing them with her family.

Ardis said she was very grateful to have a group of friends who ‘get it’ and who care about her to connect with on a regular basis at Roots’ n’ Wings, and a community to connect with at the Celebrations. She likes seeing folks she knows, and going where folks she knows will welcome her. She likes catching up on everybody’s news and sharing hers. She feels better when she shares her feelings and gets caring feedback. And it makes her feel good to make her friends feel better by listening to them, and telling them she cares, sharing her wisdom and experience.

Her family also told her they were glad she had Bridge to lean on during the hard times when they were unable to be there for her. We hear this kind of thing a lot from people at Bridge. We see people going to great lengths to attend our gatherings and participate in the Bridge community. They need to connect with people who both understand and want to accompany them on their journey. A shared load feels lighter on the shoulders, and being truly seen and acknowledged is priceless.


When people ask what we do at Bridge, it can be difficult to sum it up quickly in a way that folks can understand. I recall our Executive Director invoking the TV show Cheers to explain what we do once. Okay, we don’t have a pub and there’s no alcohol in the drinks we serve, unless there’s a bit of communion wine maybe. But I looked up the lyrics to the theme song and found that, once again, it’s not what’s different about people living with disabilities that matters – it’s what’s the same for all of us that counts. And I think most of us can probably relate to these words:


Making your way in the world today takes everything you've got. 
Taking a break from all your worries, sure would help a lot. 

Wouldn't you like to get away? 

Sometimes you want to go 

Where everybody knows your name, 
and they're always glad you came. 
You wanna be where you can see, 
our troubles are all the same 
You wanna be where everybody knows 
Your name. 

January 10, 2013

Dem Bones: Ancient Compassion Revealed

"It's survival of the fittest." "We need to keep the bloodline strong." "Back in the day they wouldn't have been allowed to live." "It's really kinder to put them out of their misery." All my life I've heard people justify cruelty and injustice by invoking these all too familiar phrases when the subject of severe disability comes up. You've probably heard it too. Since the days of anonymous internet postings began, I see it even more. Some of the comments I've seen harken back to the days of  the Nazis who considered euthanasia to be a viable government policy.

English translation: 60,000 reichsmarks - This is what this person suffering from hereditary defects costs the Community of Germans during his lifetime Fellow Citizen, that is your money, too.

Now, I knew I didn't agree with this philosophy, even since childhood. As a Christian I believe it is wrong and abhorrent in the eyes of God. And I certainly knew it wasn't up to me to decide who should live and who should die. But, to be honest, I did have to grudgingly acknowledge that there might be some truth to the belief so many have that people living with disabilities were unwanted, possibly even abandoned, starved or killed, by ancient humans. After all, life used to be very difficult for people in hunter-gatherer societies. I knew that from first hand experience growing up in Alaska.

I've endured enough harsh weather camping outdoors, put in enough long days catching my supper with a fishing pole, hauled enough water, chopped down enough trees for fires, and endured enough scratches among the berry bushes to know - it ain't easy living entirely off the land! Heck, I had Gore Tex and the Army Navy Store, and it was still a lot of hard work! You're lucky if you obtain enough calories in a day to equal the number you work off!


And taking care of someone completely dependent on you in those conditions? Forget about it! Shortly after my kids came along, I pretty much abandoned all that nonsense. Although I enjoyed camping, hunting, fishing and gathering wild berries and mushrooms while I was younger, camping with two young children by myself cured me of any romantic ideas about living off the land I still had. After a week of hauling water from the creek, heating it on a wood stove, and killing myself trying to keep the kids safe, clean, warm and fed, I beat feet back to my modern house in the city - forever after grateful for hot running water, electric baseboard heat, and grocery stores!


So yeah, even though I don't believe we should do it now, I could see how ancient humans might have been harsh and merciless towards people living with disabilities. Especially knowing as I do that many are that way today. As the parent of a teenage boy who lives with autism and a communication disorder, I've unfortunately had plenty of opportunities to see the ugly side of human nature. Therefore it was pretty easy to imagine that people who had to work extremely hard to survive might be even worse.

After lifetime exposure to this grim view of ancient humans therefore, it was with great pleasure that I recently read an article about an archaeological study that flew entirely in the face of that belief. A dig in Southeast Asia revealed a group of Neolithic humans who demonstrated great compassion for an individual who lived with a severe disability - even by today's standards.

The well-preserved burial site of an adult male in his 30's was uncovered and the body examined. It was discovered that he had lived with a congenital spinal disorder that rendered him immobile below the waist and radically limited his upper body mobility. He also had a fixed right rotation of his head and a condition called torticollis (neck twists one way, chin another). It's likely that even chewing would have been very difficult for him.



After examining the skeletal remains thoroughly, archaeologists came to the conclusion that this man could not have survived into adulthood without constant care and nursing. At a time when the average age of death was before 40, he lived a full lifespan. Yet with his condition, I read, he would have been totally dependent on others for every aspect of daily living. Wow! This was exciting! Proof that compassionate humans existed even in ancient societies!

Reading the report of the archaeological dig had me wondering - who took care of this boy well into manhood? Was it his mother? Both parents? His entire family? Did it extend to other members of the tribe? Was it the entire tribe supporting and caring for this man? My guess would be all, or nearly all, of the tribe had to be involved. Judging by my camping experience with my kids, it would have been too difficult for one or a few people to carry the load of his care and support on their own in Neolithic times.

Although it's interesting to speculate on the details, it's clear that ancient humans did have compassion and care for tribal members who lived with disabilities after all. So the next time someone uses one of those Social Darwinist catch-phrases I mentioned above in my presence, I'll just point them to this Neolithic tribe in Vietnam and tell them to think again.

Say, you could try that too! Perhaps if we all do this, people will eventually stop using imagined cruelty among ancient humans to justify real modern day cruelty and injustice. Maybe they'll see that humans have the potential for both cruelty and compassion. Perhaps they'll even realize that we should appeal to the best in each other rather than the worst. Hey, it could happen! It's worth a try.

Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble. 1 Peter 3:8