First Communion

Last week at church, my son took communion for the first time. This was a really exciting moment, as we had been attending this church since last fall, and he had always refused. He is allergic to the gluten in the wheat bread normally offered, but that wasn't the reason. Our pastor had long since obtained a gluten free host and had offered it Sunday after Sunday along with the sacramental grape juice, but he had never betrayed the slightest interest.

Then all of a sudden last Sunday, he indicated that he wanted to take communion. It caught us unawares and unprepared. The pastor had neglected to put out the gluten free host that time, probably thinking my son would once again refuse. After all, he had offered it month after month, and the answer had always been the same. No. But this time, almost as if he was a bit miffed at not being included, he stepped forward and gestured towards the plate with the unleavened bread on it with a questioning look.

Everyone froze. We stared at him to make sure we understood what he wanted. After a moment it sunk in. He wasn't refusing this time. He wanted to participate in communion with us! Our pastor ran to the closet where we store such things, and quickly located the gluten free host and ran back to the communion table. He placed a few gluten free wafers on the plate, then carried it to my son with the goblet of grape juice. Slowly and deliberately, as he had watched us all do on so many Sundays, my son picked up the gluten free wafer, dipped it in the grape juice, and popped it in his mouth. It was an amazing sight to behold, and we were all rapt by it.

Why did my son suddenly decide at that moment that he wanted to take communion for the very first time? The truth is, I may never know. My son has autism and a communication disorder, so it can be difficult to discern his thoughts and feelings. One thing I do know though - this was a definite sign that he wanted to belong. And it was also a sign of trust. My son has issues around food that make it difficult for him to eat around people he does not know well, or if he doesn't feel safe. And it's common for him to refuse to taste something edible, even when he's reassured that he's not allergic to it.

The fact that we had attended this church for so long made this event that much more remarkable. It took ten months for my son to get to this point. Change is slow with autism. I'm sure a large factor in his level of comfort and trust increasing is the fact that this church is exceptionally inclusive of people who live with disabilities. My son belongs to a church that values him as a whole person of spirit, a church where he sees many people with disabilities and their family members at every meeting. They welcome him, and he welcomes them. His pastor is the father of a boy who also lives with autism. I'm sure that helps too.

Drumming at Church

But probably the most important reason my son feels he truly belongs in this church is that his behavior is not judged, criticized or ridiculed there. If he feels like staying clear across the room, far from the group during the singing and instrument playing and talking - he does. If he feels like laying on pillows on the floor right in front of the pastor during worship - he does. Anytime he makes a sound, no matter what's going on at the time, there is an accepting response from the pastor or from some other member of the congregation. He can wander into the middle of the bible study to show mom his new craft project anytime he wants. No one bats an eyelash and the pastor doesn't skip a beat.

While I can't be sure how much of the communion ritual my son understands, time has taught me that he understands a good deal more than he appears to. Regardless, I am certain that he feels accepted, included, welcomed. We both do. And he doesn't have to change who he is for that to happen.

Jesus took some bread and blessed it. Then he broke it in pieces and gave it to the disciples, saying, “Take this and eat it, for this is my body.” And he took a cup of wine and gave thanks to God for it. He gave it to them and said, “Each of you drink from it, for this is my blood, which confirms the covenant between God and his people. It is poured out as a sacrifice 

to forgive the sins of many.

Open Gathering Christian Church is a new church 

of the Disciples of Christ (Christian Church) in Bellevue, Washington. 

Pastor J.C. Mitchell is also a member of the board of Bridge Disability Ministries.

Just Go With The Flow

This interview/article is a continuation of the Caregiving Project of our Roots 'n Wings Support Group for people who live with physical disabilities.

I recently interviewed one of the people we serve at Bridge about her experience with caregiving through the years. Her name is Ardis Lawrence, and she has been actively involved with Bridge for well over two decades. Ardis has had cerebral palsy since birth, so caregivers have always been in the picture for her. Now in her 60's, she looks back on her life and contemplates how interwoven caregiving has been with the fabric of her daily existence.

Ardis had family caregivers as a child, and lived at home with her parents through high school. She grew up accustomed to needing help, and having caregivers to help her. But as her parents aged, the roles gradually changed somewhat. She found herself doing more of the reminding as her parents ability to remember declined. She also took on some of the chores she could handle when needed, like doing the family laundry the time her mom had foot surgery. As her parents' needs increased over time, the family added a paid cleaning helper into the mix, and her sister helped more often as well. In her house, people in the caregiver role were always coming and going.

As Ardis shared the flow of her life history, and how the various caregivers she'd known threaded through it all, I finally got an answer to a mystery. As long as I've known her, which is about five years now, Ardis' email address has referenced a 'farm girl'. I always wondered what that was all about. Why farm girl? Well, during our interview I discovered that her family lived on a dairy farm near Lynden, Washington when Ardis was a girl. I had not realized she'd grown up in a rural area, and her practical outlook suddenly made a lot of sense. Every farmer I've ever known has been nothing if not practical.

Eventually, Ardis’ parents decided to sell their farm and move to Bothell. They bought a house there, and Ardis lived with them. Then, as aging inevitably crept in, the time came when her parents needed to move into a long-term care facility. At that point Ardis began an effort to find housing that would work for her, not realizing what a long and difficult process that can be for someone living with a disability who has never lived on their own. There were some false starts, and she learned the hard way that advance planning for the time parents can no longer provide care and housing is necessary to avoid a crisis.

To begin with, Ardis lived in a series of group homes over about 6 months time, and then tried living in her own apartment in Lynnwood where a paid caregiver came in 4-5 days a week to help her. But after living alone for nearly 3 years, she developed problems with depression and anxiety. So when she was invited by an old friend to move to an adult family home near Mill Creek in 1998, she tried that for awhile. And on it went...

Finally, in 2010 Ardis moved into brand new adult family home, where she was the only resident for awhile. She lives there still, and now shares the home with five other residents. A couple owns this home and live in their own place right next door. In addition, a full-time caregiver lives in 24 hours a day, 5 days a week. The owners have two children of their own living with them as well, so it's a busy place.

While living in her current home, Ardis has been learning to communicate directly with her paid caregivers because her sister and brother-in-law began to have more serious health needs of their own and didn't have as much time and energy to give. Since the caregivers don’t know her as well as her sister does, she has to adjust to the caregivers' way of doing things. Due to her disability, communication can take a long time - Ardis has to repeat herself a lot, and persevere in order to be understood. She is learning to be assertive without being annoying to her caregivers, but it’s a balancing act.

A friend from church she has known for 24 years has done more and more for Ardis over the years, so her sister ended up hiring her to be a part-time caregiver. These days Ardis relies on her to help with shopping, running errands and giving her rides to church, meetings and appointments a few times a week. In fact, this caregiver brings Ardis to Bridge's monthly Roots 'n Wings Support Group meetings.

When asked her preference between family and paid caregivers, Ardis said she likes not having to be so dependent on family members and she’s getting used to having paid caregivers. As she gets older she finds she likes being more independent in that way. 

When asked if there was a difference in quality of caregiving between family and paid caregivers, she said that she liked being home all the time with family when she was young, but as she grows older it’s more important to her to have the independence. She also prefers caregivers who have had mental health training because they can communicate with her in a way that helps her open up and be more candid with people about her feelings.

When asked to describe her worst experience with a caregiver, she described a relationship she had with a caregiver who seemed to be paranoid and often thought Ardis was ‘setting her up’ to get in trouble with the group home that employed her. She also mentioned another caregiver who didn’t believe her when she said she was sick, and got angry at her. Her friend and sister advocated for and protected her, and she lived in her sister’s house for a month before moving to her present home.

I asked her how that felt – not being trusted, not being believed – and she said it had a bad effect on her mental health for awhile, but it forced her to learn to cope.

Because of who she is, because of where she needs to live, caregivers have learned that Ardis is an unusual person – she teaches people how to take care of her. Sixty-five years of living with cerebral palsy and getting used to dealing with caregivers has made her a philosopher. She accepts that things will not always be her way, and tries to see other people’s point of view. Most of all, she has learned to gain more control over her emotions.

When asked about her best experience with caregiving, Ardis shared fond memories of the staff in her first adult family home that were willing to take her on long trips to Whidbey Island. Ardis has also learned much about the world through her relationships with caregivers. She knows people from distant locales and varied ethnic backgrounds. She reminisced about caregivers from Ethiopia, who taught her a lot about their home in Africa and their customs.

To wrap up the interview, I asked Ardis what she would like people to know about caregivers in general. She said, if she could find a caregiver that could meet 90% of her needs, that would be a good thing! But she also knows she couldn’t be a caregiver herself, because she would try too hard. She would be too much of a perfectionist with details. She doesn’t feel the best caregivers get hung up on the details. In her opinion, they need a more relaxed attitude than she has. They need to be able to just go with the flow.

As we finished the interview, I found myself reflecting that we could all probably stand to...sometimes...just go with the flow. Many of us spend much of our lives trying to impose our will on people and things around us - often without success - and possibly that energy could be better spent in another way. If going with the flow makes one a better caregiver, where else might it be beneficial in our lives? As always, the Farm Girl Philosopher with her practical, homespun wisdom left me with something to chew on.

Only God gives inward peace,

    and I depend on Him.

Psalm 62:5

Note of Interest:  Ardis is one of the original members of Roots 'n Wings, and 
had the honor of paying tribute to our founder, Rev. Henk Wapstra, 
at our 2014 Breakfast of Champions.

Warmth for Winter

It's cold, wet and mostly dreary lately. Typical for this time of year in the Pacific Northwest. Despite the fact that I'm originally from Alaska, I'm really not crazy about the cold weather. And I'm especially not crazy about immersing myself in cold water. But I have a teenage son named Lucas who lives with autism, and he can tolerate swimming in very cold water - much, much colder than I can. I'm often amazed at his tolerance for cold. But even he is forced to wait now for spring to come so he can swim outdoors again.

 

Lucas asks me every day to promise that the sun will return and that he will get to go swimming in the lake again, and I promise him "Yes, Lucas. Yes, the sun will return and I will take you to the lake to go swimming again." And he holds on tight to that reassuring promise of the sun's return so he can bask in its warmth again. 

Lucas of the Lake

Yes, winter is the time of year that we must cling to our memories of the warm sunshine and hang on tight to the promise of spring. But, despite the cold, I was recently warmed by an article written by a frequent attendee at our Sunday Evening Celebrations - only from the inside. I'll share it with you today in the hope that this sunshine for the soul will warm you as well.

Got Some Summer Fun? by Alex Motteler

On a sunny day in July, people with wheeled contraptions gathered for a field day at Lake Washington High School. Bikes, wheelchairs, and other devices were the means with which we could get around the track. Unloading into the parking lot, we were directed to a barbecue near the track where the games would be held. After a meal of hamburgers, hot dogs, and chips, it was time to begin the big games. Some of the older people just stood in the sidelines while most of us chose to go onto the track and participate. Split into four teams: red, green, yellow, and blue; we were ready to take part in these crazy activities. While we were doing this, people were putting on sunscreen and preparing for a big day in the sun. Most chose to participate while others chose to sit on the sidelines and watch the craziness. It was a great day!

In a relay race style, the teams made their way to various stations. Playing a silly game at each station, our wheelay team made the rounds. There was a cheese puff toss, where a teammate put shaving cream on, so we could throw cheese puffs at a team member; a hoop hooping game, where we had to dodge people throwing water balloons at us, an obstacle course for our contraption to navigate, and an event to see if we could blow a bubble. Additionally, we finished the day with a victory lap. Running around the track of the high school, we celebrated another successful field day. Medals were handed out since we were all winners. We were all thankful to have sunny weather. Although there wasn’t the Bridge birthday hat, we were all made to be special. It was a blast for all participants!

The barbecue and games made for a wonderful afternoon to catch up on friends, enjoy the outdoors, and be competitive. Well, maybe not the latter part. Where else can you throw cheese puffs, rush through a water fight and navigate obstacle courses? Each summer Bridge does an extended celebration where we play “wacky” games. When summer comes, there are no excuses for not being outside and doing things.

Wacky Wheelays was only the first outdoor event hosted by Bridge Ministries this summer. At Game Farm Park in Auburn, another summer Barbeque with a karaoke machine occurred. Silly songs were sung as we ate hamburgers grilled by Sunshine Ministries. We even had a chance to celebrate anybody who had a summer birthday. Volunteers worked the grill as people got up to the karaoke and sang. Carrying the message that God’s love is for all of us, we enjoyed listening to the songs that people were brave enough to sing into the machine. It was a great way to spend time outside!

Alex waiting in line for the relay race & raring to go!

It is like a bridegroom coming out of his chamber,

         like a champion rejoicing to run his course.

It rises at one end of the heavens 

         and makes its circuit to the other;

                  nothing is deprived of its warmth.      

Psalm 19:5-6