October 23, 2007 11:21 AM
Starting a church group for parents of kids with disabilities - reader needs your input
Hi Barbara,I had emailed you a month ago, or so, about our daughter Tullie who has Down Syndrome. We go to a large church in Seattle. It's also a very young church, the average age of an attender being 25ish. Tullie was the first child (that we know of) born with a disability or special needs at our church. In the last two years, we've had other children born, or families beginning to attend, with children who have special needs and the need for a support group or aids in Sunday School is becoming apparent. So, I'm spearheading a new ministry at church for families. Right now it'll mostly be support for the families and a time to talk, cry, share, and encourage one another. Not a time to feel self-pity for ourselves, but a time to be thankful for what God has done for us and for the precious gifts that He has given us.
My question to you is, have you heard of other churches doing this sort of thing? Does your's have a ministry like this? I'd love to know more of what churches do and how they do it. Maybe some of the activities that they do together, talks that people have etc.
Any ideas would be great! Thanks so much for your help!
Maybe ask if other folks get support from the church in a group setting within the church on your blog???
Thanks!
Michelle Bates
Michelle said I could pass this on. I never have had the experience of a church group for parents of kids with disabilities and I think it's a great idea. However, in 1997 I wrote (in World magazine) about the invaluable experience I had in an Easter Seals group where mothers like me shared:
Entertaining angelsWhy we need to learn to appreciate "the least of these" | Barbara Curtis
In 1992 God gave me Jonathan-a beautiful baby boy with 47 chromosomes, almond-shaped eyes, and the syndrome named by Dr. Down that would launch me into a dimension I never knew existed.
On the other side of the looking glass, Jonathan and I embarked on many new adventures. In our weekly Easter Seals play group, we sang songs I'd been singing with my seven other kids for years, only now we used sign as well. I gazed around the circle at the other mother/infant pairs, knowing I was seeing things fresh and new-not as I would have seen them before Jonny.
There was feisty, one-eyed Christopher, whose head was swollen and asymmetrical, and bossy one-year-old Anna, who resembled a 12-pound old woman. Gabriella was blind but oh-so-curious, and Sam and Jenny, though they both had cerebral palsy, were no more alike than any two kids with brown eyes.
Their mothers' lives had been irrevocably changed by the birth of the child that brought them here. All were in some stage of coping.
In our discussion group, Christopher's mother sobbed. Her husband was becoming more and more withdrawn. She knew the statistics: 80 percent of marriages end in divorce following the birth of a disabled child. But she had a more immediate problem: She couldn't bear to take her baby anywhere and see the horror in people's eyes when they saw her first son.
Anna's mom felt the same. She struggled with whether or not to get pregnant again. The genetic counselors were not sure whether Anna's disorder was chromosomal.
Jenny's mother dealt with guilt; she wondered whom to sue. Her home birth had gone awry. Delays getting to the hospital compounded the problem, and now her daughter's future would be different from what it might have been.
For two years we met, supporting each other through our children's operations, subsequent pregnancies (resulting in three healthy babies in the group), and stresses in our marriages. We rejoiced with those who rejoiced and mourned with those who mourned.
Although I was the only Christian in the group, for two years I had a sanctuary where I found more love and compassion than I was able to find in my church.
It's not as though my brothers and sisters in Christ didn't help us. During Jonny's serial hospitalizations they brought gifts and meals, entertained our kids, and spent hours in prayer.
And yet, as a mother of children with special needs (we have since adopted two more), I face this fact: No matter how much I regard my special kids as special blessings, it remains difficult for those outside my experience to share my enthusiasm.
The contrast between the isolation I felt within my church and the warmth and encouragement available from support people outside-my play group, Easter Seals workers, and speech and physical therapists-threw me for a loop.
As Jonny got older and ready for school, I was ashamed to discover that Christian schools lag years behind public ones in accepting and supporting children with special needs. One reason, of course, is money. Public schools get money from Christians and non-Christians to fund their programs, and inclusion programs are expensive.
But another reason is attitude. In 1 Corinthians, Paul says, "Those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor" (12:22-23). Sadly, however, most Christian schools have refused to face their responsibility to provide for the education of children like Jonathan.
The result of this discrimination-no matter how it may be rationalized-is this: While public-school kids have for years been learning to accept and feel comfortable with special-needs kids, Christian kids for the most part have not had this opportunity. And neither have their parents.
How does that lack of contact and comfortableness play out in the life of the body of Christ? I look down the road at what lies ahead for Jonathan, and often I don't like what I see. We need to take to heart Hebrews 13:1b-2: "Do not forget to entertain strangers, for by so doing some people have entertained angels without knowing it."
I lived most of my life as a person with limited capacity. God gave me an angel to entertain-to broaden my perspective and enlarge my heart. Through Jonathan, God showed me how little he cares about our intelligence and physical appearance, how much more he cares about the things we "normal" people will never be able to measure.
Looking back, I know that it must have been me God saw as disabled.
That was ten years ago and things have changed a lot in many churches. I love Michelle's idea - and was wondering if anyone out there has had experience with a Christian support group.
Michelle, I say go for it! And I hope you let us know how things go in the group you start!
Posted in Church Issues, Disabilities | Permalink
Comments
I am involved in a group called Mom's Moment that is for moms with special needs kids. It has been my lifesaver over the past 4 years dealing with autism, pdd-nos and ADHD. This was not a church group, but even so it was such a lifeline for me. I think having a group at a church would be wonderful! I'd say go for it. I know our group has a topic or theme for each monthly meeting which helped to steer our conversations. That may help you out in the planning. Best wishes to you.
Posted by: Janelle | October 23, 2007 11:50 AM
I don't have any suggestions, but I just wanted to encourage Michelle to please do this. Many children have "hidden" disabilities.
My son is neurologically atypical - he looks fine, his deficits only become apparent later (trouble transitioning, he is unable to read fluently at age 9, etc.) We are mostly able to 'cover' for him, but often we will stay home or skip services if he is having a bad morning. A support group, knowing we are not alone, or having trained workers would make the difference between our attending services as a family and staying home. You would not know that by looking at him.
Posted by: Milehimama | October 23, 2007 1:33 PM
The church I used to attend in Simi Valley (Cornerstone Church) has a "Special Needs" childrens' ministry. I don't know much about it, but you can get more information by getting on their website (cornerstonesimi.com), going to "ministries" and then to "special needs." The woman who heads this program up has her email addy posted and perhaps can assist in getting a program started at your church!
Posted by: Carina | October 23, 2007 10:55 PM
A friend of mine wrote a book entitled, "Same Lake, Different Boat: Coming Alongside People Touched by Disability" that you may want to check out.
And when I checked to verify the subtitle on Amazon, the "better together/buy this book with" resource was entitled, "Let All the Children Come to Me: A Practical Guide Including Children with Disabilities in Your Church Ministries."
I'd also encourage you to check out Joni & Friends and see what they might have available.
Thank God for our children!
Blessings,
Tara B.
Posted by: Tara Barthel | October 24, 2007 8:26 AM
Hi!
McLean Bible Church in Virgina has a big ministry like the one you are thinking of starting. Here is the link http://www.mcleanbible.org/pages/page.asp?page_id=15709
Fourth Presbyterian Church in Bethesda Maryland also has one.
http://www.4thpres.org/pages/page.asp?page_id=9016
Hope this helps!
Angela
Posted by: Angela | October 24, 2007 1:44 PM
Here is the link to the program my church has for special needs kids. I'm sorry, I don't know more about this particular ministry, but if you click on the contact us link, I'm sure someone would be more than willing to help you out.
http://www.firstnlr.com/templates/cus1stassemblynlittlerock/details.asp?id=25969&PID=307646
Posted by: Joani | October 24, 2007 2:48 PM
Dear Michelle, I e-mailed a good friend who had a similar group at our church for several years. Here is her response; Hi Jane,
Interesting enough I started a small group many years ago at St. Lukes when the boys were young. I held it in my home and it started out once a week at the beginning and then we met every other week. I always started in prayer and served coffee and desert and also had wine which we all wanted or needed after the week circumstances we all lived through. My group went on for about 3 years and kids grew, people moved and just as most small groups do they fade out. Three years helped get many of us with children with disabilities through life in great support. Times when gals thought they just couldn't bear another time of sharing, actually came to the evenings meeting and left feeling better because someone else in the group had a worse experience that week. Of course all that was shared in the group was kept in the group. I really felt it was something that was needed because we had so many moms who struggled with children with disabilities and it helped many. I also gave out note books, recommended reading material, shared tapes of information, even bought mugs for all involved entitled "How am I feeling today" with tons of different facial expressions all over the mug. It was good and all those involved enjoyed, we also had gals in the church who brought friends from outside into the group. If you are thinking of doing something like this I highly recommend it -I'm sure there are many moms that could use the support just as I did.
Best of luck....love you,
Hope that helps
Jane Duquette
Posted by: Jane Duquette | October 24, 2007 4:39 PM
