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!

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.

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. 

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!

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.)