The Dokko-Kim’s, 2008
This is my family. Over the last ten, post-diagnosis years, these fine folks have looked for excuses to line our pockets, knowing full well we have gaping holes in them. My parents have provided us with uncountable financial support, particularly during our chaotic Early Intervention Years, when we hemorrhaged money for therapies ($7,000.00 a month out-of-pocket.) St. Patrick’s Day? Bam. A hundred-spot for each grandchild. We’re not even Irish. Chinese New Year? Bam. Red envelopes. We’re not Chinese, either.
My mother cooks, freezes and ships us Korean soups and chicken teriyaki in Ziplocs. She knows I despise cooking, and have no time, patience or energy for it.
The (Manual) Preggo Palanquin, 2006
My brother is of similar ilk. In 2006, he took me on an all-expense paid trip to New York to watch Broadway musicals. He wanted to give me a break from autism, before baby number two arrived. I was seven months pregnant at the time. So he rented a manual wheelchair to schlep me across Midtown (not a wheelchair friendly place) for a week.
Whenever we’re in town, he pulls out the stops. Koreans don’t say “I love you,” as much as we cook it. He’s a foodie/chef so we’re feted to Michelin-star meals, and the nephews are trotted off to Disneyland at every opportunity. One time, I told Justin we had no money to buy a particular toy (I can’t remember what). He muttered under this breath, “Then I’ll ask Unka Brian…”
My new sister-in-law (married all of 2 weeks in the 2008 photo above) quickly caught on. She donated her $300 noise-cancelling headset to Jeremy (who has sensory issues with crowds and noise) on a Disneyland trip. I can’t even tell you how much of a difference it made.
None of my family members were particularly called, passionate or even remotely interested in Special Needs. But they support and sacrifice for us to such extraordinary extent. Why?
Because it’s what you do when you’re in a family.
When one part suffers, every part suffers with it
To this day, none of the Dokko’s are autism experts. But they are experts in caring for us. What impacts us, impacts them. So they just picked up and did whatever they could think of, according to their respective gifts and love languages. Even the smallest gestures mean so much.
Like in every family, there are things you do because one person is more qualified to do it. In my family, I do the cooking, while my husband does the all BBQ-ing. I don’t even know how to turn the grill on, and vice versa. We all have our specialties and designated roles.
On the other hand, there are things that everybody needs to pitch in and just do, just because there’s a need. If something fell to the floor (not yours) and you’re the one to walk past it, you pick it up. If someone left the light on (not you), you turn it off. This applies to adults and kids. Why?
Because it’s what you do when you’re in a family.
Spiritual Family: When one part suffers, every part suffers
Just like with my wonderful family, spiritual family ought to work the same way. When there’s a pressing need, fellow members in the Family of God should help each other out, out of care and concern for each another.
You may already have a designated role, commitment or specialty, whether it’s singing in the choir, ministering to students or calming screaming babies in the nursery. Don’t worry. Supporting a Special Needs ministry doesn’t have to be your life calling: You just have to be aware of the need, and have compassion and willingness to step in and help.
Because it’s what you do when you’re in a family.
Especially in our San Francisco Bay Area, the Body of Christ is strategically positioned to minister to special needs families. According to Joni and Friends, there are 1.5 million people affected by disability in the Bay Area. We are a well-known “cluster” for autism, with an incidence rate far higher than the CDC’s national average of 1 in 50 children. Chances are, you and your kids will interact with someone affected by autism or special needs. Whether it’s out in the community at Costco, on the playground or on campus, it’s a statistical certainty.
Credit Mercury News, UC Davis
How would you respond to your child’s questions, “Why is that kid like that? Why does he do that?” In a culture rampant with peer bullying, how would you coach your students to respond to their differently-abled peers? How would you model unconditional love and acceptance? How would you include families like mine in your fellowship activities? We cannot give what we do not have. If we are not settled or equipped in these matters, we will have no wisdom or guidance to impart on our children.
Meanwhile, many are dying from despair, lacking encouragement, support or Hope. Where does our help come from?
Church inclusion
A welcome sight for eSPECIALly sore eyes!
In spite of these staggering numbers, few churches are adequately prepared to receive families like mine (although that tide is turning. They have been scrambling to ramp up to meet the need. THANK GOD.)
I speak from personal experience. Because my son has autism and needs 1:1 support at all times, families like mine often get turned away or “wait-listed” from regular programs. We are unable to walk in to children’s ministry or student program, like a typical kid or family would. There’s just not many churches we can attend.
About 90% of Special Needs families are unchurched. More often than not, we just don’t bother coming, or we can’t. Not unless we’re assured that a church truly welcomes us (e.g. we hear from a friend or read on a website that they are special needs-equipped.)
That’s 90% of entire families, times 1.5 million individuals. In the Bay Area alone. It’s ironic and tragic, since God Himself originated the concept of inclusion,
Just as a body, though one, has many parts, but all its many parts form one body, so it is with Christ… As it is, there are many parts, but one body. The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” On the contrary, 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. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment…”
“Let me know how I can help!”
I get asked this all the time by well-meaning friends. I also often hear, “I want to help, but I just don’t know how.” Now, I get that supporting special needs kids might be intimidating (no one understands better than I do. In 2004, I was suddenly informed I’d have to raise one. No Take Backs.) We all fear what we don’t know or understand.
So here is one timely, God-given solution. Here’s how you can help…
BASS: Called to serve
On March 7-8, 2014, the annual BASS conference will offer an unprecedented Special Needs track of 12 practical workshops, to encourage and equip church leaders to intentionally welcome families affected by special needs.
BASS, Bay Area Church Workers Convention
Keynote speaker: Amy Fenton Lee, Special Needs ministry consultant, blogger of The Inclusive Church and author of Leading a Special Needs Ministry.
Cost: $49/Individual Registration. Free for church members with group registration
Contact: Debbie Lillo, dlillo@joniandfriends.org or (408) 252-4160
Here’s a summary of the workshops. For more details, click here or on each link below:
Friday, March 7, 2014
- Using Technology in Special Needs Ministry – Stacy Hodge
- Loving the Family Impacted by Special Needs – Amy Fenton Lee
- Autism: A Family and Church Perspective – Diane Dokko Kim
- Adapting Curriculum for Special Needs – Kris Volkir
- Including Teens with Special Needs in Your Church – Stacy Hodge
- Special Needs FAQ – Amy Fenton Lee
- Welcoming SN Families with Compassion – Debbie Lillo
Saturday, March 8, 2014
- Autism and the Church – Debbie Lillo
- Building a Special Needs Ministry Team – Amy Fenton Lee
- What Autism Spectrum Disorder Has Taught Me About God: Insights From Research And Practice – Cynthia Zierhut
- Surviving to Thriving: Engaging Different Learners – Amy Fenton Lee
- Special Needs Parent Panel– Debbie Lillo and Kris Volkir
The Joni and Friends SF Bay Area staff has truly stacked this year’s presentation team. I’m honored to be a part by presenting a workshop on the unique challenges faced by families affected by autism, and how churches can understand and support them more effectively.
Whether you’re an ASD family or trying to support one, let me know if you have any suggestions or questions. What do you as a SN family, wish churches could understand? Or, what do you as a SN minister/volunteer or leader, wish SN families could understand?
WE are His workmanship, created for good works in Christ
Come get trained and equipped to do good works in Christ. The harvest is great, but the workers few. Especially in supporting families affected by special needs – and especially in this unique part of the country.
Even if you can’t attend BASS, always remember that little gestures mean a lot to families who are hard-pressed. Take a cue from the Dokko’s: Offer a meal, take the siblings out, or volunteer at a church respite event, so weary parents can get time off. Kickstart a GoFundMe account to send a family to Joni Camp. Or at least tell them such a thing exists! Donate equipment, services, or even join a fundraising walk:
Color Me Rad to raise funds for Pace Autism School. TEAM JEREMY is doing it again April 5, 2014. Come join us!!!
Every gesture communicates, “We care. When one part suffers, every part suffers with it.” There are countless ways to learn and to help. Just as there are many love languages, and just as many gifts in the Body of Christ.
Because it’s what you do when you’re in a family.
…But God has put the body together, giving greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.”
~ 1 Corinthians 12:24-26
In the next post, read how serving in Special Needs Ministries benefits volunteers and churches.
Are you a Special Needs family? What do you wish churches could “get”?
Are you a church leader or volunteer? What would you like to understand about our families? What do you wish we understood about you?
Do you plan to attend BASS? If you know of others, please share this post. Clarity on the WHY’s must fuel the HOW’s of doing Special Needs ministry.
How can you be a blessing to the Body of Christ? How can you support and give greater honor to a part that lacks it?
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