Seriously, I'd like to know your answer.
On Wednesday, I'll be speaking to a group of folks at a family ministry conference. One session is about the basics of special needs ministry (including starting and sustaining one), and the other session is about successful outreach events that serve the entire family, primarily focusing on respite care.
(Quick Webster moment: Respite care is kind of like a parent's night out or a mother's morning out event. I know most Christians can name a church in their area that offers one of those programs. However, this kind of event is designed to offer time away for caregivers of those with disabilities, usually - though not always - children.)
I know about articles like this one that liken the stress of a mothers with autism to combat soldiers. I know about studies like this one that show that family-focused care can make more of a difference than medical care for the individual child. (Granted, that one is about colic not disability, but the principle still applies.) I've read stories - like this one in which a mom describes stress so extreme that she "broke" and once hit her son (who has autism) a couple years ago - of heartache and exhaustion and feelings of hopelessness and depression and anger and more.
(You should read that last one. Really, you should.)
I love the list here sharing five realities for special needs parents: We're tired. Our brains are constantly busy. We're lonely. We know more about our child's condition than most doctors. We're fragile. (Thanks to Amy Fenton Lee to posting it on The Inclusive Church's Facebook page)
All of those tidbits offer great insight into why we ought to meet families affected by disability where they are, which is often a place of survival, and meet practical needs. But I'd love to know what YOU think about this topic.
What would you - as a church leader, a special needs parent, someone who cares about people with disabilities and their families, a volunteer at a respite event - tell the leaders I'll be addressing next week?
Our 3-year old son has ASD/SID. Everyday is a challenge and Sunday school is not an exception. Church, for me, is really the only time I'm ever separated from him. It's a much needed break and spiritual retreat/reprieve for me. After a particularly rough day for our son last Sunday, his Sunday school teacher suggested a shadow for our son. She has a young girl who assists her and she suggested her for this role. I was beyond grateful. I was so fearful the teacher was going to tell us our son was too disruptive for the Sunday school class and that I was going to lose the one thing I can count on to give me a much needed spiritual regrouping. I don't have all the answers, but this is just a small example of what our church did for us. I can't tell you In words what it meant to me as the mother of a special needs child.
ReplyDeleteYour story is such an encouragement to those of us who serve in this area of ministry each week! You aren't alone in the fear that your son might be rejected from Sunday school. Many of the parents at our church have confessed that same fear to me. I'm thankful it's not a reality they'll experience at our church, and that your church is like-minded with us in figuring out what is necessary so that we can give parents like you a break.
DeleteThat for many families, group respite is not an option but in-home is. I work with families dealing with Autism and many children really need in-home respite providers who would even be paid through waivers etc., but they can't find providers. Using disabilities ministries to connect families with sitters/respite providers for the occasional home visit can be really effective for families and churches who are aware and can promote such networking with, say, a church announcement board or something.
ReplyDeleteGreat point. My friend Libby Peterson calls this "relational respite."
DeleteTell them THANK YOU, THANK YOU, THANK YOU!! Thank them for caring, thank them for trying. We (parents of disabled child) know there is no perfect program. Unexpected things are a part of our every day life. A break is so refreshing, so valuable, so precious.
ReplyDeleteI have never been thanked so much as when parents pick up their children after our Respite Night! It fills my heart and reenergizes my soul after an exhausting week of event preparation and the event itself.
DeleteA few thoughts as a ministry leader:
ReplyDelete*You don't always see the tangible results because the parents may not always say anything...but trust me it is SO important to them and the health of their marriage/self.
*Make sure the goals of the night are clear and well communicated to the volunteers. It is a great opportunity to bring in a team mentality to the night and helps give volunteers purpose.
*It is a good time to build relationships with the kids in a way that is less structured than Sunday school and often more of their personality comes out.
*Remember to look outside the typical SN volunteer base to help out. Perhaps there is someone in your church who can bake cookies, make balloon animals, paint faces, has a therapy dog, is a whiz at magic or music, etc.that can come in and use their gifts to bless the kids. It also gives the "specialist" an opportunity to work with SN kids that they wouldn't have any other way. This can begin to build bridges/inroads to the overall church body.
*Help the kids to have FUN so they want to come back, or the parents will decide it isn't worth the fight of dragging them there.
*I have enjoyed respite because it a place that I can connect with parents, kids, and volunteers with on a regular basis, even if only for a brief moment. I don't get this on a Sunday morning when I am pulled in different directions.
*Encourage families to invite other families and use it as a great outreach to the community.
*It can be daunting to think about getting volunteers, but God is faithful in providing volunteers. Sometimes he'll just lay it on someone's heart and they will come to you, sometimes they will respond to a senior pastor's announcement, sometimes (& most often) they will respond from a personal invitation. Encourage your great volunteers to bring a friend tp help out. Birds of a feather flock together and chances are that they know someone who could help out and do a great job!
*share encouraging stories of the night with your volunteers so they remember their efforts are valuable.
Oh, I love these tips, Elisha! Thanks for sharing them.
DeleteShannon,
ReplyDeleteCame across your article via a google search on 'disabilities ministry". Though the event is over, I wanted to let you know that I wrote two articles on respite that you/your readers may be interested in:
http://www.dismantlingdisabilities.com/respite-definition-for-the-christian-caregiver/
http://www.dismantlingdisabilities.com/respite-is-not-for-the-lazy/
Overall, the topic of respite is very important: The greatest strength of the caregiver is compassion; while, the greatest weakness is the propensity to keep on showing compassion.
How did your event go?
Blessings as your advocate for the disabled and those who work with them
-Michael