Tuesday, January 31, 2012

What can YOU do to demonstrate God's love for all people, including those with disabilities?

I thought I had something to write today, with several topics in mind. But as I sat to write, I read something else that I'd rather call your attention to. It's part of a talk John Knight gave recently about disability and the sanctity of life, with this segment offering suggestions for what we each can do to affirm God's sovereignty in disability:
You don’t need to be an expert in disability.  In fact, sometimes that is an advantage.  You can do informal things.  If the Kanowitz family had not adopted us and loved us and persisted in love for us almost 16 years ago, I would not be standing here.  They didn’t know anything about Paul’s disability, but they knew how to love.  Trust God to help you, even if the person does what I did, and that was respond with bitterness and derision. They persisted because they trusted God more than they feared me, even when nothing changed in our hearts or lives for a long time. If God can change my heart, he can change anybody’s heart!
You can speak up when the hard issues are discussed.  The abortion movement assumes one of its best arguments for abortion is that it must be legal, especially late-term abortions, because nobody wants the disabled babies.  Don’t let that lie just sit out there – move into it, get underneath it, love the mother and father, save the baby.  Get the mom into Hope Keepers here at Bethlehem, a group Caryn Turner organizes of mothers and spouses experiencing disability in their loved ones.
You can do simple, one-time things.  When Dianne was so sick from treatment for her cancer, we received meals three times a week (coordinated by two wonderful ladies who selflessly served us for nine months).  Some of those meals came from very young people – and I was encouraged that they had the courage to come to the door of a home that, potentially, could be so sad, so angry.  That cup of cold water will never be forgotten by God himself!
Some of you will be called into even longer term service.  We have families at Bethlehem who have intentionally adopted lots and lots of children with disabilities – talk about leaning into the promises of God.  And we have families who have unintentionally adopted children with disabilities, and they are pursuing, in love, the good of the children God has given them, even with this heart-breaking surprise.
Everyone, put a stop to the cruel words like retard and spaz, first from your own mouths if necessary. I know it is possible for children to stand up to that cruelty, because I’ve seen my own children do so without any prompting from me.
If you live with a disability and have gifts that are not being used, please pray about using them here!
Please don’t misunderstand – there is joy, and the sorrow and the suffering is very real.  I have cried more than I thought a man could cry these last 16 years.  I am not saying there is a straight line between serving families like ours and a light, breezy happiness.  But I am saying there is an eternal weight of glory beyond all comparison coming (2 Corinthians 4:17).  And I take comfort that even the tears are valuable to God.
Psalm 56:8: You have kept count of my tossings; put my tears in your bottle. Are they not in your book?
God is sovereign.  Jesus is Lord.  Your sins are forgiven.  Joy is coming.
To read the rest of John Knight's talk about disability and the sanctity of life or to watch the video of it, please go to his blog. And, when you do so, bookmark it, because God is doing amazing things in John's family and church and you'll want to keep reading his blog to hear/read more.

Monday, January 30, 2012

disability ministry weekly round-up {1/30/12}

My baby girl turned five yesterday. I love her so much, and she and her little brother are great motivations for why I do what I do, even though neither of them has a disability. If either of them had any special needs, I would still want them to know Christ. I would still share His truth with them at an age- and ability-appropriate level. I would still love and cherish their lives, and I would want my community of faith to do so as well.

That's why I do what I do, because I know that the moms and dads of the children and youth with disabilities at our church want the same things for their kids as I want for mine and that the adults with disabilities at our church are each someone's child.

My sweet five-year-old Jocelyn matters to me, to the church, and to God. And so does every other person, regardless of disability status.

Ministering to Special Needs: This article describes phenomenal efforts in disability ministry in New York and includes great quotes and one-liners, like "Every week brought new fears, new disabilities, and challenges, but more importantly every week brought new lessons packaged in some of the most beautiful souls I’ve ever encountered."

special needs {recent observations}: Amy Dolan is a great leader in children's ministry, and this post is the result of research she did in local schools to learn about how to best serve kids in ministry settings. Great insights, and also a great idea that could be helpful to do if you're a children's or special needs ministry leader who doesn't have a special education background!

Beautiful Bethenny: Heather blogs about a little girl in Russia with osteogenesis imperfecta who lives in an orphanage and need a family. Would you consider adopting Bethenny or donating to her adoption fund to offset the expense for the family who I pray will step forward to love her?

Why it is hard to tell the truth in my memoir: Gillian Marchenko is a pastor's wife, mother of four (including two daughters with Down syndrome, one who entered their families through birth and the other through adoption), and skilled writer. In this post, she honestly and vulnerably shares about what she calls her "less than Christian response" to her daughter's birth.

Caring for a sibling with developmental disabilities can be a lifelong commitment: We're not doing much as a church to support siblings yet, other than including them in respite nights and providing them with a one-on-one buddy to make sure they have a great evening. What does your church do to support siblings?

How families can benefit from respite programs: Ever wonder why respite care is a common activity in special needs ministry? Then read this.

A Story Worth Telling: Orange Parents writes about Noah, a precious little guy with Down syndrome whose dad blogs about him at NoahsDad.com. His is definitely a story worth knowing.

How to Raise a Child with Down Syndrome: Advice and Resources: Amy Julia Becker is a great resource  herself, and she has assembled useful information and resources for other parents who have a child with Down syndrome.

The Attributes of God: Tim Challies has created this useful visual tool, which I will use and will be passing along to our volunteers. It may not be directly useful with all of the kids and adults we serve alongside, but it is helpful for us as volunteers to reflect upon the characteristics of the God we serve.

 Churches engaging in disability ministry...
  • "Teach, Bless, Serve," theme for 2012 Archbishop's Appeal: The Archdiocese of Portland includes plans for increased funding for the Office for People with Disabilities. According to the website, "this ministry assists parishes in accommodating the needs of parishioners with disabilities to enable their full participation in the life of the Church. The office offers training and consultation in ways to create an inclusive worshipping community. It also provides pastoral support and advocacy for individuals with disabilities and their families."
  • Special Ministries celebrates 40 years of community ties: This disability ministry in Livingston County, Michigan, was launched by a pastor's wife at St. George Lutheran Church when she started religious education classes for a few high school students with Down syndrome in 1972; it has now become an ecumenical effort with serving 230 people with special needs. 
  • 2012-2013 Preschool Round-Up: This round-up includes a listing for the Garden Academy, a new six-day/week program serving people with autism aged 3-21 that is based at St. Andrew Kim Church  
  • Millville autism support group Puzzle Peace Moms announces 2012 meetings: Mt. Pleasant Church hosts this support group in Millville, New Jersey. 
And, finally, what could be God's purpose in disability? Here's one testimony of what God has done at Bethlehem Baptist in Minneapolis with the life of a boy born with no eyes (and you can read more from his dad, John Knight, here):

Friday, January 27, 2012

every story has two sides. but.

Every story has two sides.


I’ve heard enough first-hand stories from families with special needs about churches who have rejected them.

I’m not talking about stories like “well, they just weren’t sure what to do with us.”

No, I’m talking about conversations like the one I had with one of our moms after respite, when she, with tears in her eyes, told me, “We love the church. My dad is a pastor. But we don’t go to church anymore, because our last church asked us to leave.”

Please take a moment to process that before you move on. Take a moment to consider how you’d feel if you were asked to leave the church because of your eye color or skin tone or height or IQ or some other attribute you can’t control. This child wasn't aggressive or dangerous; they were asked to leave because the children's ministry leaders said his autism was too distracting.

If I were writing about a church that kicked out a family because their son was black, we’d be outraged. But sometimes when I share the stories I hear from the families we serve in Access, someone responds, “well, you can't really fault the church. They probably just didn’t know how to handle it.”

Maybe it’s because I’m dosed up on enough prednisone to work me into a bit more of a ranty state than usual (and to allow my asthmatic lungs to work), but let me tell you what I think of that sort of response: it’s baloney. When church leaders kick out kids who aren’t up to the general education expectations they are used to, they don’t need our excuses.

 They do need grace. And repentance. And yes, training. And prayer.

 When I see tweets like this one (related to this story)

three prayers come to mind:

Jesus, help this family. 

Jesus, let this church learn from this situation, even if the facts being reported aren’t completely accurate. 

Jesus, please come soon. 


Tuesday, January 24, 2012

How much does a special needs diagnosis matter at church?

I'm not actually going to tackle the main question in the title, instead leaving that up to my friend Steve, a special needs ministry leader and pediatric psychiatrist who is blogging about that topic this week. Check it out here.

I can and will answer for our church, though. There's a reason our ministry is called Access. Our aim is to support kids and adults whose unique needs make it more difficult for them to access the community of believers that is the church.

So, does that mean that the individuals have to have a diagnosis for us to help? No, not necessarily.

That's the nice thing about being a church instead of a government agency. We can show love without categories, because Christ first showed us love regardless of our abilities or worth. I was talking with one of our moms about this recently. She's a case manager for kids with special needs who receive Medicaid, so she sometimes has to decide - using the proper federal and state guidelines - which kids are disabled enough to qualify and which ones aren't; it's not fun for her to have to turn a family away. Conversely, I have the freedom to look at the individual in need, instead of looking at a list of qualifying diagnoses, and I love that.

When a child who is new to our church is having a lot of anxiety when being left in Sunday school, sometimes it can be helpful to find a one-on-one buddy to support that child for a month or two. Are we implying that the child has some sort of undiagnosed disability? No, of course not. We're just acknowledging that this particular child needs a little extra support to access his Sunday school class, so we're willing to be there. And we've found that this can be more helpful than having a parent stay each week, because (a) often the anxiety is only present once mom or dad leaves and, on a safety note, (b) parents can only stay if they've completed background checks.

My daughter Jocelyn with Tyler, who has served as an Access helper
When a toddler or preschooler is having more difficulty sitting still or interacting socially than her peers, sometimes we find a helper for the child or provide some extra training to the teachers to help them serve that child well. Does this mean that the little girl will likely be diagnosed with a special need once she starts school? No. That could happen, but it's not our role to even speculate about that... and we don't want to make that part of our role. We just talk with parents about the behavior we're seeing and offer an extra helper as one possible solution to help the child fully access membership in that class. (Usually in this sort of scenario, the child was technically a member of the class before help was offered but wasn't yet able to truly be involved as a full member and classmate until she had the support she needed.)

In both examples provided above, we continually evaluate the child's needs to decide when the support is no longer needed. It doesn't help the child or the teachers to keep a one-on-one helper in place any longer than necessary.

As the special needs community is reeling from the report that the proposed DSM-V criteria for autism spectrum disorders could exclude some who are currently classified, I'm paying attention so that I can be knowledgeable when the families I serve express concern about how this might impact their families.

However, I'm not concerned about how the proposed DSM criteria will affect what we do at church each week. We aren't bound by diagnostic criteria. In serving the Lord, we get to serve people, not diagnoses. 

I love that freedom.

Monday, January 23, 2012

disability ministry weekly round-up {1-23-12}

For me, this week includes meeting with a member of the Joni & Friends - Charlotte team, writing for Treasuring Christ curriculum (I currently write the take-home piece for parents), celebrating my daughter's fifth birthday, revising my master's thesis into two articles to submit for publication in a leading learning disabilities journal, seeking donations of gift cards from restaurants to give to parents for our Valentine's Day respite night, and getting over the cold that's currently kicking my butt (and then catching up on the emails that I've let slide while I've been under the weather). Granted, if that last item doesn't happen, some of the others might not either, so please pray for my recovery!

What's your week looking like?

Please respond to this tweet or leave a comment if you know of any autism-friendly churches in the northern Nevada (Reno, Carson City, Dayton) area. I have a friend who is searching for a place for her family, and I'd love your help. (And yes, I did check the listings in this post, but I didn't find anything.)

When the Children's Pastor is Impacted by Special Needs This guest post on The Inclusive Church is from Kristy Moser, who was a Special Needs Ministry leader in her church before her son Wyatt was born with special needs. Here's Kristy's personal blog.

3 Minute Interview: Andrea Roberts Reece's Rainbow, started by Andrea, advocates for orphans with Down syndrome and other special needs, and I am thankful for that organization and for Andrea.

Blessed By The Dozen A newstory about a mom of 12 including three children with Down syndrome who were adopted into the family.

Disability and The Gospel I'm looking forward to this book, being published by Crossway in July.

Going to Church with My Autistic Brother This post provides a mix of personal experience and ministry advice.

Parents of Children with Special Needs Need to Guard Against Caregiver Stress & Fatigue How can your church help?

Michael Aaron, our Special Angel A little boy was born to Christian musician Aaron Shust and his wife last week, with the surprise (to them, but not to God!) that little Michael has Down syndrome. Would you leave a comment at his blog to encourage him and his wife? Go here for his latest post, and - if you're not sure what to say - here's a post from a different blogger with some advice for encouraging new parents of a child with Down syndrome.

KIDS RAISING PARENTS: Parents, Teach Your Children to Make Handicapped Friends On EpicParent.tv, Christ Spradlin's daughter stepped in with a post last about growing up with a mom who only has one leg. Kylie did a great job!

Noah's Story If you haven't interacted with Rick Smith, aka Noah's Dad, you're missing out. Here's a guest post he wrote for the Orange Parents blog.

An Incongruent Culture My friend Barb of Snappin' Ministries (by the way, Snappin' stands for Special Needs Parent Network) wrote a great post about how we view life.

The Church, Autism, and Apologetics A pastor and an autism dad's perspective on theology, church, and the spectrum.

A Harvest of What Is Yet To Come I never promised these links would exclusively feature links related to disability ministry, and I'm taking a bit of blog owner license with this one: Katie Davis, best known by her book Kisses From Katie, traveled to Uganda for a three-week mission stint at age 18, returned permanently after graduation, and has adopted 13 daughters, including ones with medical needs like HIV. (Hmm, maybe this is related to special needs ministry after all!) And this is her post from last week on the {in}courage blog.

Thursday, January 19, 2012

Favorite special needs ministry gear: JumpStart Trampoline (on sale at Target, today only!)

Every so often, I'll feature an item that we LOVE in our special needs ministry setting. This trampoline will start us off, because we love it and because it's majorly marked down TODAY ONLY at Target.com (get it here for $54.99; I think it was $75 on Amazon when we got ours).

So why do I like this one best?

  • The triangle shape with legs at each corner: It doesn't rock or flip like the round ones we've tried.
  • 80 pound limit: Higher than many others designed for kids that we considered. We've tested it up to that level without problem.
  • Bicycle bar handles: On other trampolines, I've seen kids flip over the straight bar (or at least try to!). You can't do that with this.
  • The noises: Yes, it can be loud and obnoxious, so we remove the batteries if we know a child who has sensitivity to sound is going to be in the room. However, some of our kids love to control the short noises and choose their own. 
  • Wipes down easily: Gotta keep those germies in check!
  • Textured foam hand grips: A lot of our kids like to touch the handles, even if they aren't bouncing.
  • The colors/design: This isn't the most important reason to get something, but I do like the look of it!
It was difficult for me to assemble, but I'm not the most skilled gal in that area. My husband put it together, and even he needed help in one step (I had to hold something while he put a screw in, I think). I don't share that to dissuade you from getting it, because we love ours, but I want you to know that you probably won't be able to whip this together by yourself.

And, finally, how do we use this? Well, we have a sensory break room where our one-on-one buddies can come with the child they're paired with. The room can be particularly helpful if the buddy notices that a child is going to have a meltdown and can change settings before that meltdown happens. In the sensory room, we have this trampoline, some pretend play toys, hand puppets, a variety of sensory balls (some squishy, some spiky, some stress balls, some textured), Benny the Bull (who we got for $20 or $25 on a deal of the day site), and several different sensory bins. Other than the trampoline and Benny, everything in the room was very low cost. I'll post more about those other items in the future!

We also use the trampoline during respite nights, in which it gets near-constant use for three hours. It has held up well!

Wednesday, January 18, 2012

Free online conference this Saturday with a focus on disability, prenatal recommendations, and abortion

I hope to talk with Jeanne Monahan of the Family Research Council later today to get a few more details, but I just found out about the First Annual Conference on Medical Advances in Prenatal Diagnoses.

Please don't let your eyes glaze over if medicine or science isn't your chosen field. It's not mine either.

But most visitors to this blog are at least marginally interested in welcoming people with disabilities into gospel-centered churches, which is what I get to do each week. And you probably know that I have not been shy about speaking against the abortion of unborn children with disabilities, in posts like this one. We, as the church, can't afford to be silent or uninformed on this topic when lives literally hang in the balance.

So when I read the description of this conference (which will be streamed live online THIS SATURDAY...oh, and it's FREE!), I knew I had to share it:

Council on Poor Prenatal Diagnoses & Therapeutic Intervention
Founding Partners: Medical Students for Life, Family Research Council, LeJeune Foundation, USA & Keep Infants with Down Syndrome

First Annual Conference on Medical Advances in Prenatal Diagnoses

The Conference will bring together professionals from many different specialty areas, including genetic researchers, ob/gyn physicians, developmental pediatricians, hospital nursing staff, medical genetic counselors and medical students.  Other invited participants and guests include peer ministry providers, social service support professionals, advocates for persons with disabilities and public policy specialists. 
The goals of the Conference are:
  • affirm the life and dignity of all persons, especially those diagnosed prenatally with a disability or lethal condition
  • review how information about prenatal diagnoses of disability or lethal condition is currently delivered
  • consider how this information might be delivered more comprehensively
  • consider the impact of a new blood test for Down syndrome in obstetric care
  • explain the work of the Council and its year-long engagement on prenatal diagnosis issues
  • review best practices for postnatal care of infants with disabilities in perinatal hospice and in hospital, home and medical daycare settings
An agenda for the day will be available soon. Our host for the day, the Family Research Council (FRC), has limited space, so this first Conference is by invitation only.  However, FRC will be webcasting all general sessions that day, which can be viewed viawww.frc.org.  For more information, contact Jeanne Monahan at Family Research Council, jmonahan@frc.org (202-225-4008) or Peg Kolm, at mlkolm@mindspring.com, (240-994-0603).We welcome your interest and expertise in this effort, and hope you can join us on January 21.

Here's another post about it from LifeNews.com.

Register HERE if you're interested. I'll definitely be tuning in.

Monday, January 16, 2012

disability ministry weekly round-up {1-15-12}

Did you learn anything new this weekend? As for me, I learned how to feed a child through a feeding tube so we can support a new family at our church. (While we don't provide medication on Sunday mornings and ask parents to do that instead, in children's ministry we treat feeding tubes the same way we treat bottles of formula we may have to mix: it's a feeding need, albeit with different mechanics.)

And on to the posts for this week...

Registration for my church's February 11th respite event: If you're in the area, please join us! Note that the main button at this link is for families to register, while volunteers will register by clicking the word here in the line "Volunteers may register here."

Today I Learned Something About Down Syndrome: This isn't a new post. It's over a year old. But it's a powerful account of a man working through his fear of the unknown to see the humanity of a woman with Down syndrome. (Favorite line: "This time I noticed her nametag." I would rather know someone's name than their diagnosis, wouldn't you?)

When Prayers Go Unanswered: Julia Roberts (no, not that one...) explains in this post why she struggles more with answered prayers than unanswered ones.

Your Presence is Requested - 2011 Reflections Jackie Mills-Fernald, the director of Access Ministry at McLean Bible Church, shares what she has learned through a tough 2011 about ministry, programs, and relationships.

D6 Press Release: I'll be speaking at this conference in September on special needs ministry as family ministry. Here's a bit more info!

Great sites for therapy ideas for kids with special needs This post has great info for parents, but it's also helpful - to a point - for ministry leaders. I say "to a point" because implementing special needs therapies isn't our job in the church; sharing the gospel so that all may treasure Christ is. Some sensory tools, though, are technically based in therapy but are also useful - and for some kids, crucial - for creating a welcoming environment.

Tempted to fear? APTAT This post, written by John Knight and pulling largely from a sermon by John Piper, provides a biblical way to deal with fear as a parent of a child with special needs. And don't miss the follow-up: Bitter or angry? APTAT

Is your church listed? Or are you a family with special needs looking for a church? 3 lists of disability ministries If you saw this post of mine early on Thursday, you might have missed one addition. I know these listings don't include all the churches who are welcoming to people with special needs, so please get the word out so that families know that there is a place for them in the church.

Tough topic, yet sensitive responses from Amy Fenton Lee at The Inclusive Church:
Here's one post from a blog I just found, written by a special needs ministry coordinator in California: The Church's View of Mental Illness, and Mine I'll be blogging about a second post of hers later this week.

Should we teach the Bible to those with severe cognitive disabilities? and a follow-up here: Two posts from John Knight (and don't mind the richness of the comments on the first one!)

As Christians, knowing isn't necessary (and it's ok to ask) Yep, another from John Knight. Really, I probably could have titled this post: A week of John Knight's blog, plus a handful of other posts.

Friday, January 13, 2012

VIDEO: How my church made Christmas count (including our December respite!)

This year, our church had a series of opportunities for families to serve our larger community in various ways. We called it "Making This Christmas Count." I'm not sure if it'll become an annual thing, but I sure hope it will.

This video highlights three of those outreaches:

  • Respite Night: three hours of free childcare at our church for families whose children have special needs
  • Gifts of Grace: kind of like an Angel Tree thing in which members bought specific gifts, and then families in need were able to come "shop" from us one night, and 
  • our December downtown Saturday morning outreach: we provide a meal once a month in an area in Raleigh where people who are homeless tend to gather 

Making This Christmas Count from Providence on Vimeo.

Thursday, January 12, 2012

Is your church listed? Or are you a family with special needs looking for a church? (3 online lists of disability ministries)

Looking for a church that welcomes all people, regardless of ability? Wanting to get the word out about what your church is doing? Interested in other churches in your area that are engaging in special needs ministry? Then check these listings out...

Joni & Friends website
Joni Eareckson Tada is one of the longest-serving and most-respected disability ministry leaders, and her organization has on online listing of churches offering special needs ministry. Here's the listing for my church. Here's the link to search for a church by zip code (just scroll down until you see the search box on the right side of the page). And here's the link to go to if you'd like to register for an account so that you can add your church; in order to post your church, you need to agree to their statement of faith, found here (though note that you don't have to print and sign that form, even though it looks like you do; agreeing online is sufficient).

Autism Speaks resource listing
Autism Speaks, in addition to the other work they do, has a list of community resources on their website, and one category is "Religious Resources." You can view our church's listing here, and you can find other listings by going to this page, clicking on your state, scrolling down to the list titled Community and Support Network, and clicking on "Religious Resources." To add your church or organization to the listing, go here; you get to describe what you offer in 500 characters or less, and the resource will post after their Family Services team approves it. If you have any questions about their listing, email me and I'll can put you in direct contact with Ali, the Communications Manager for Family Services.

Interfaith Disability Network "Worshiplink" database
Here's another listing. This isn't limited to Christian churches and ministries, so if you're a parent looking for a place to worship Jesus, take note that you will find churches listed there, but you'll also find synagogues, temples, and mosques. I haven't added our church, but I am about to do so by following these instructions from their website: "If you are a faith community and would like to be added to the database, please e-mail: Mark@Interfaithdisability.org."

Any others?
If you know of any other listings for churches, please let me know and I'll add them to this post!

How can you use these listings?
If you have a disability or have a family member with special needs, these are good listings to check in your church search. (It could even help you find a church to visit if you're out of town on a Sunday morning.) If you are a ministry leader, you can add a listing. You can also turn to the listings to find out about other disability ministries in your area so you can network and learn from each other.

And, finally, see these lists, and be encouraged. Christians care. Churches are welcoming. Christ's love is being shared with and the gospel being proclaimed to all people...regardless of ability.

Tuesday, January 10, 2012

what never gets old? telling a family with special needs, "YES, we would love to have you come to our church"

I shared this on Facebook Sunday night:
I love the excited flutters I get whenever a new family with special needs contacts me about coming to our church and I get to say, "Yes, we would LOVE to have you join us!"

Never. Gets. Old.
When an unexpected email shows up with a parent laying all the diagnosis/needs cards on the table and then asking, "Can we still come?," I get to say yes. I am thankful that the pastors and others leaders in my church share my excitement and are willing to work with me to figure out what it looks like on our end to support each "YES!" answer I get to give.

I love what I do.

Monday, January 9, 2012

disability ministry weekly round-up {1-9-12}

Wow, what a wonderful weekend. (Exhausting too, though, so I'm setting and sticking to some bedtimes this week!) I'll share about some of it this week, but for now it's on to the links for this week's round-up...

Kids With Aggressive Behavior...Is It Ever Okay for the Church to Say No? You need to consider this question if your church wants to welcome those with special needs.

It Could Happen to You Becoming permanently disabled or having a child with special needs, that is. I love the conclusion of this mother's article:
It could happen to you. You too could be so lucky to have a child with different abilities than most. You too could get the opportunity to witness purity of heart on a daily basis. I am beyond thankful that Chrissy happened to me.
How to Survive Being Stared At iamviable.com shared this post yesterday, and it's a great perspective on difference from a dad, pastor, and blogger who was born with a left arm that ends just past his elbow.

This is What a Kid With a Disability Looks Like, Right? Wrong. Every kid is different. And what looks like a stroller to you might be a wheelchair for a small child.

Being Retarded If this won't change your mind about using the word "retarded" to mean "stupid," then I don't know what will.

Requiem Kevan was 13. He was a typical kid, with a touch of asthma, from my church. On New Year's Eve, his mom took him to the ER with a high fever. It was a virus. It attacked his heart. He died on the operating table. In this link, my friend Susan writes about Kevan and about why we shouldn't hesitate to tell kids we love them.

Adaptive Worship Service at St. John's Episcopal Church in Montclair This service began yesterday, fueled by the idea that "church should not be an exclusive club." Here's another article about it. And another.

Small Groups for Adults with Disabilities... Amazing Stuff! From Rick Howerton's NavPress blog.

And please don't forget that I reviewed the e-book Speechless: Finding Grace in My Son's Autism by Sandra Peoples...and am giving away a copy! Click here and leave a comment for a chance to win - I'll be drawing the winner's name at 5pm Eastern today.

Have a great day!

Friday, January 6, 2012

A mom learning to advocate for her child at church and elsewhere {a guest post by my friend Kelly}

My friend Kelly and I met online in a group of women who all were expecting babies around the same time. When we met, she and her husband were serving in campus ministry, and after a couple job changes and relocations, they remain involved in their church. Her son Noah and my son Robbie will both turn three this spring. I am incredibly thankful that Kelly was willing to write about her experiences parenting Noah and allow me to share her words here. (I'm also willing to let me borrow some precious pictures from her Facebook profile! Isn't their family precious?).

There is nothing more frightening, disheartening, and honestly disappointing than finding out that your child has a problem. It seems like from the beginning our son Noah has had a rough go at it. His poor little head got stuck when he was born, and he had pretty seriously jaundice for five days that led to an extended hospital stay. After a few month, he stopped being able to have a bowel movement without help which led to tons of testing and no outcome.

(He poos on his own now perfectly in case you were wondering.)

Then around 9-month he started having seizures which led to more testing. Around the same time we notices he wasn't moving much. Well, he wasn't moving at all. No rolling, no sitting, up, no crawling, no nothing. From there we did physical theraphy to get him moving, and just before his first birthday, he finally crawled. But, alas, we still had very few words. We decided to really focus on sign language. For me it was nothing more than a parlor trick that I couldn't wait to show the other moms. In reality, it would become a tool that right now we live, breath, and function off of day by day.

Speaking of day by day, that little boy is now almost 3 and can speak approximately 3 words on a good day, and very few and far between. We knew something was wrong and had to get him some help. Early intervention came in, evaluated him and scored his verbal communication at the level of a 10 month old. Ouch, that hurt. From there, Noah went into speech therapy and was diagnosed with Apraxia of the Speech.

When I heard that, you may have ripped the very spirit out of my soul.

The very child that captured my heart the night he was born. So beautiful and perfect and now he's been given a label that says although he's wonderful and beautiful and mine, he's also got some issues to work through. It was devastating.

Noah has been in therapy for a month now and is doing well. We can see he's trying to make new sounds, but from what I understand this journey isn't a sprint, it's a marathon. Honestly, I think it's more of a around-the-world-in-4-years kind of things.

It's easy to get discouraged. It's hard when your friend's daughter who is a year younger than Noah can have conversations with her mommy and tell her how much she loves her, but Noah can't even tell me he wants a banana. I long for a time to hear Noah tell me he loves me, heck I'll settle for "I hate you, Mom," at this point. It's a struggle when everyone thinks there is something wrong cognitively with your son but in actuality he's very smart. He understands more than more of his peers do. He's social, and he loves to play with other kids (until they steal his trucks, and then it's on!).

©Jeremiah Daniel Spray
A big word I keep hearing over and over again is advocacy, and as Noah's mom, I have to fight his fights and be his voice. I can stay this isn't my problem area, but at times I may advocate too much. From the beginning of this, I said that no one was going to make Noah feel dumb or behind, and if they did, we were going to have a problem. However, jumping to conclusions won't get me far, and most of the time what I assume could be wrong.

Last Sunday at church we were having a children's program. The week before the director asked if Noah would be a sheep. I was so excited! Noah could participate just like the other children. The Saturday before I recieved a Facebook message asking if I would stay with our one-year-old daughter because the nursery worker had to be in the play. Automatically I assumed they kicked Noah out of the play because he couldn't talk. I was so upset. I cried the night before. From that moment on, I thought Noah was going to be an outcast.

When I got to the church, though, that wasn't the case at all. They just wanting me to hold my daughter during the performance. It was as simple as that.

Wait, you mean not everyone is out to destroy me? I'll think about that more.

Most moms want the very, very best for their children. Most of us work hard to make that happen. But sometimes God throws us a card to play, and through that play we develop into more of what he wants us to be. Eventually I am going to write about what Noah taught me through all this. For now I see he's teaching me trust the Father. He's teaching me to be patient with him and to let his therapy be a priority. Noah is teaching me not to compare him to other children. God made him special, and we get to be better people because of it. Has Noah taught me these things? No, not yet. But we are working on it.

If you don't have a child with problems or special needs, I don't say consider yourself lucky, but consider yourself envied. Be careful of those around you with children that are different. Accommodate them, but make them feel no different than anyone else. I want Noah in age-appropriate classrooms. He should be the sheep at the church play, and when it's time he'll go to Kindergarten with everyone else. Don't treat any child different, because behind closed doors is a mother trying to find her place in her child's world.

Join her in it sometime.

Thursday, January 5, 2012

Kudos to Target. Now, church, it's your turn.

A post I read at the start of this week has gone viral in the disability community, and I love it: Target is 'Down' With Down Syndrome: 5 Things Target Said By Saying Nothing At All Rick, who is probably known better by now as Noah's Dad, shared the picture below from Target's weekend ad. Notice the handsome fellow named Ryan on the far left.

Ryan has appeared in Nordstrom's ads and others, and like Rick, I am pleased to see Ryan's face alongside kids without Down syndrome instead of sequestered into an ad of just kids with special needs, as is often the case. Target included Ryan, but they didn't make a big deal out of it. Their lack of words said more than anything else could have, including that kids with Down syndrome are kids first and that inclusion isn't a big deal but that exclusion would be.

To put it into roughly sketched pictures, Target said we're not going to work with these buckets

because kids with special needs are kids too. In fact, they're kids first, with disability as just one characteristic, like hair color or slinky preference. Separating their ads into the two categories above would make as much sense as doing using the ones below.

 Instead, Target just advertises clothing to kids, in all their diversity.

Now how about us? Consider the areas of your church that display what you care about. Does the bulletin board with children's ministry pictures or the section of your website devoted to family ministry include the faces of those with special needs? Or do you just include those pictures in areas that are specific to special needs? 

Of course, that's not the only sign of how you view people, just like this past Sunday's Target ad isn't the only sign of that company's inclusion of kids with special needs. It is a good indicator though, isn't it?

Is this your church, in which people can only fit in one bucket?

Or do you acknowledge that we are all the church, made richer because of - and not in spite of - our God-given diversity?

I know I didn't include every people group or ministry area in the graphic above, but I think you get the idea. If we're the church God designed us to be, we won't create divisions by ability or disability, choosing instead to "...walk in a manner worthy of the calling to which you have been called, with all humility and gentleness, with patience, bearing with one another in love, eager to maintain the unity of the Spirit in the bond of peace" (Ephesians 4:2-3, emphasis mine).

P.S. Sketching might not be my strong suit, but my four-year-old daughter recognized that the pictures above were buckets, and that's good enough for me. 

Wednesday, January 4, 2012

Speechless: A review and giveaway of mother's e-book about God's grace the first year following her son's diagnosis

Most published stories written by parents of children with autism benefit from the perspective of at least a few years in autism-land. However, that can also limit their ability to write with freshness about the first days and months and year of life with a diagnosis.

Sandra Peoples doesn't have the experience of autism parenting in the long-term, but that's what makes her e-book Speechless: Finding Grace in My Son's Autism helpful. I don't have a child with autism, and as such, I'm limited in my ability to understand the realities of families with a new diagnosis. I can sympathize, certainly, but empathizing is a little more difficult because I haven't walked that road. Sandra and her husband Lee are walking it, and Speechless invites you to come alongside them through meetings and doctor's appointments and financial decisions and education transitions.

Because Speechless only describes their first year, emotions are fresh and honest without the passage of time to dull or sugarcoat them. For example, when they received the diagnosis for James, she admits that it felt as if her life had stopped but that no one around her seemed to notice. As they moved on from that moment, the book moves on too, reading somewhat like a retrospective blog with the end point known but the chapters written in chronological order and in varying lengths.

She admits to prayers that the diagnosis would not be autism and conflicts with her husband about treatment, but she also describes how they have better understood God through the diagnosis and how He has ultimately strengthened their marriage. She lays herself bare, particularly when describing what she calls "the sin of entitlement":
Essentially, I [had] viewed God as a professor [before James was diagnosed]. The Bible was the syllabus. It told me what to do and I did it. Therefore, I earned a grade, or in this case, a reward. My reward should have been typical children. (If I’m being really honest, I felt I deserved exceptional children. (p. 19)

More than just a personal story, Sandra aims higher, letting us see this as a God story and pointing the reader to Him. Here a a few examples of that:
  • "...this book is mostly about God... His grace has never been more real to me than in this last year." (p. 10)
  • "Multiple times every day I had to repeat to myself, 'God loves me. God loves James.' Again and again I said it. I said it until I believed it." (p. 20)
  • "I also have a choice—believe the truth that God loves me, loves my son, and is working for our good or don't believe." (p. 78)
My favorite part is where she provides guidance to friends and extended family members about what to say and how to act. She recommends reminding those who are struggling of the "big hope" and the "little hope," the former being God and His sovereignty and the latter being the dozens of other helpful, hopeful things, like a meal or the promise of a coffee date or a birthday party invitation for her son. And I think all of us need to be challenged by these words: "saying nothing actually communicates... 'I’m uncomfortable talking about this, and my comfort is more important to me than comforting you.'" Ouch. That hurts because I know that I have chosen my comfort over the comfort of others at times.

For me and for readers of this blog, the chapter "James at Church" provides great insight for what we do, and I am grateful that Sandra included this blog in her list of resources. (Thanks, Sandra!)

While I did find the book helpful, I do want to share two areas that I think could have used a little more polishing. Both are minor, but I think it would be unfair not to mention them:
  • Use of statistics: If you've read this blog long, you know I'm a stickler for citations. If you mention a statistic without a source, I'm the first one to comment with something like, "That's interesting. Can you tell me where you found that?" On pages 11 and 26, Sandra uses two of the most pervasive yet least reliable statistics in special needs ministry: that 90% of families with a disability don't attend church (no good research exists on this, but the best available - from The National Organization on Disability - suggests that more than 40% do attend religious services, though that includes other religions than Christianity and that rate is less than the attendance of those without disabilities) and that 90% of parents with a child with autism divorce (not true. while some research supports a higher rate of divorce for parents who have a child with autism, those figures don't even come close to touching 90%). I don't fault Sandra for repeating such oft-quoted percentages, but I have to point out their inaccuracy.

  • Objectivity about treatment choices: While she makes it clear that treatment decisions are complex and family-specific, her explanations of their choices sometimes feels more prescriptive than simply descriptive. She doesn't outright say, "We did this, and you should too," but she does write about what has worked for them with such understandable passion that objectivity becomes difficult. I don't consider this to be a major flaw, but it's worth mentioning, especially because Defeat Autism Now! - which has been a helpful group for the Peoples family - isn't universally loved by everyone in the autism community. (If you're not a fan of DAN, though, that shouldn't steer you away from the book; I just wanted to give you the heads up!)
All in all, this is a moving and candid account of the first year as mom of a child diagnosed with autism, and I am thankful for Sandra's transparency. I look forward to hearing more about how God unfolds their story as the years pass. If you'd like to do so as well, check out her blog!

If you'd like to get your own copy, here are two ways to do it:
  • Win your own copy here! Yep, Sandra is offering one reader of this blog a free copy of the pdf version of this e-book. Just leave a comment, and you're entered!
  • Buy it! Here's a link to the website for the book, which includes purchasing options, including an Amazon link to the Kindle version.
And, if you weren't already intrigued enough to consider getting it, please know that the income generated by book sales will go toward the cost of James' therapy and treatments and supplements. Given that most of that is not covered by insurance, every little bit counts!

Tuesday, January 3, 2012

disability ministry weekly round-up {1-3-11}

I took a bit of a blog break over the holidays, posting less frequently, but I'm back now...as is the disability ministry weekly round-up!

A Year End Prayer for Weary Waiters The year has ended, but the prayer still applies. Come, Lord Jesus! Amen.

Why They Resist Volunteering Some good tips here for recruiting and engaging volunteers in your ministry.

Jill's House CEO on How to Guard Against Sexual Predators Jill's House is the respite care facility affiliated with McLean Bible Church.

When the Pastor's Family Has Special Needs I can't remember if I posted this a few weeks ago or not, but it's a good one and worth listing again.

When Being Nice is Not Enough Mark Stephenson's post about why "nice" isn't the opposite of or the remedy to disability discrimination.

Dear Dad [Tissue warning for this one - have 'em ready!] This blogger writes a letter to her late father about what she learned from his disability, caused by a stroke when she was two, that she is now applying as she cares for her husband Tim, who has ALS. The hardest yet most touching line for me: "I am envious that Tim will join you so much sooner than I will."

Family ready to adopt two children with Down syndrome I love that the good work done by Reece's Rainbow is appearing more and more frequently in the news. Even more than that, though, I love that children around the world aren't being denied a family because of an extra chromosome.

every single day This is a story about my friends Matt and Ginny and their son Eliot and 99 Balloons. (Well, I've only talked to Matt a couple of times and I've never talked to Ginny and we've never met in person, but I think "friend" is the best word to describe them. The other option would be "the people whose blogs I'm currently stalking for adoption news," but that doesn't have the same ring to it. They're in the Ukraine right now, and their fourth daughter Lena - who is loved a whole lot and who has some special needs - will be coming home with them soon!) Read it. Like, now.

Why do disability ministry? For your joy! So true. Great reminder from John Knight.

Pieces of Hope This article was written by a mom of a child with autism to help churches know how to support families like hers. It was published in April 2011, and Home Life magazine featured it on their blog as one of the top articles of 2011.

Four Tips for Surviving (and enjoying!) Church Services with Your Children Written for parents of kids with special needs.

Waite Park ministry holds church services for people with developmental disabilities My favorite line in this story is from a mom of two children with developmental disabilities who launched this disability ministry because "We did not find any place for our sons to grow into discipleship or knowledge of the Gospel at all; I don’t know of any church in our area that is willing to open their doors, gearing things specifically to them."

It Takes a (Christmas) Village to Raise a Child with Autism The language isn't completely clean in this post, but it's a helpful read from an honest momma.

Key Ministry presentation slides My friends at Key Ministry are stepping up their game in providing online resources for churches wanting to engage in disability ministry. I'll post more about what they're doing in the future and how you can benefit, but for now you can check out the slides from several of their presentations.

AAIDD Religion and Spirituality Division December newsletter Note that this organization is not specific to Christianity and includes other faiths as well.

I've seen this posted by both Justin Taylor and John Knight, and it encourages me each time. This video includes part of the address given by Dr. Robertson McQuilkin to Columbia Bible College and Graduate School in 1990, announcing his resignation from the post of university to care for his beloved wife Muriel. She has unable to recognize him three years later and went to be with the Lord ten years after that. (Here's an interview he did with Christianity Today after Muriel died.)