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.