Church: 5 reasons why you must minister to families affected by special needs

You must minister to families affected by special needs

Church: 5 reasons why you must minister to families affected by special needs

This last weekend, I got to speak to a church about special needs ministry. It was such a valuable time for them and for me, I thought I’d share some key thoughts.

Here are 5 reasons why you must minister to families affected by special needs…

1. It’s in the Bible

  • 2 Samuel 9: David and Mephibosheth. David took in his friend Jonathan’s son who had special needs and brought him to eat at the King’s table.
  • Mark 2:4: A man who was a paralytic wanted to get to Jesus for healing but couldn’t, so his friends lowered him through the rough to meet Jesus.
  • Luke 14: 12-14: Jesus commands us to interact with the special needs community

12 Then He also said to him who invited Him, “When you give a dinner or a supper, do not ask your friends, your brothers, your relatives, nor rich neighbors, lest they also invite you back, and you be repaid. 13 But when you give a feast, invite the poor, the maimed, the lame, the blind. 14 And you will be blessed, because they cannot repay you; for you shall be repaid at the resurrection of the just.”

 2. It’s missional

Matthew 28:18-20: The Great Commission 

18 And Jesus came and spoke to them, saying, “All authority has been given to Me in heaven and on earth. 19 Go therefore and make disciples of all the nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, 20 teaching them to observe all things that I have commanded you; and lo, I am with you always, even to the end of the age.” Amen.

Some disability statistics:

-600 mil people world-wide are affected by disabilities.

-About 50 mil people in the US are affected by disabilities.

-Almost 13% of children in America have a developmental disability.

-1 out of 68 are diagnosed with Autism

-1 out of 691 live births result in Down syndrome.

So, we are talking about a large community of people and a huge mission field right here in our back yard.

Also, a lot of families affected by disability don’t/can’t attend church.

*I asked people who have kids with special needs on my Facebook page if they attend church. Here’s what some of them said: 

-My son was 4 and not yet fully toilet trained. A church volunteer who was unfamiliar with my son told me he couldn’t be checked in to Sunday School because he wasn’t toilet trained. It was Easter weekend so the line to check in was long and other parents were waiting behind me. I felt so embarrassed and hurt that we left the building and haven’t been back. That was two years ago. Just thinking about going to church makes me panic.

Another parent said:

-I worry he will disturb people, and to be honest I don’t like the looks I get from people. I have gotten the angry look, shhh’ed, and the pity look. The last one is the one that hurts the most – my son is a gift, not one to be pitied.

And this:

-Our church rallied around us when we were pregnant with our child with Down syndrome but since we  had him, its been one saddening experience after the next, mainly because the volunteers are spread thin and uneducated in acceptance and inclusion… One time our child was put in a plastic bin in the corner for children’s church while the rest of the kids learned about Jesus.

Brothers and sisters, this should not be.

3. It’s good for the church

Diversity is essential for the heath of the local church. 

Paul talks about the church being one body with many members in 1 Corinthians 12:21-23:

21 And the eye cannot say to the hand, “I have no need of you”; nor again the head to the feet, “I have no need of you.” 22 No, much rather, those members of the body which seem to be weaker are necessary. 23

The so-called ‘weak’ members are necessary for the health of the body. Also, if we are honest, aren’t we all weak at some point? Jurgen Moltmann said “Congregations without disabled members are – to put it bluntly – disabled congregations.”

Including people with disabilities makes a church healthier. Gifts like compassion and service are exercised. A theology of suffering develops. Our church in Chicago discovered that by serving those with special needs we learn to serve everyone better.

4. It’s good for individuals

It gets you out of your comfort zone. Francis Chan, in his book Crazy Love: Overwhelmed by a Relentless God said “But God doesn’t call us to be comfortable. He calls us to trust Him so completely that we are unafraid to put ourselves in situations where we will be in trouble if He doesn’t come through.” 
If the idea of ministering to and becoming friends with people who are different from you; say, people who have disabilities, scares you or makes you uncomfortable, than you should absolutely do it.

5. And lastly, It glorifies Jesus

The glory of the Gospel is revealed through ministry to and with individuals with special needs. It’s not just that God commands this, or because the church functions better with it, or because individuals are sanctified through it, but because this ministry glorifies and honors Jesus Christ.

Think about the gospel. Jesus accomplished the work of redemption not by strength but by weakness. Poverty, loneliness, pain, suffering, death, rejection, homelessness – all were part of the Savior’s life. Should the church try to be what Christ wasn’t? Of course, there is also power and glory of Christ. But they are revealed in our weakness lest we boast in ourselves.

1 Corinthians 1:27

27 But God has chosen the foolish things of the world to put to shame the wise, and God has chosen the weak things of the world to put to shame the things which are mighty.

God is glorified in our weaknesses, because then he is strong. The works of God are displayed in our brokenness. And we all are broken, every single one of us, outside of Jesus.

I care about special needs ministry

It’s personal. My family needs help/respite/spiritual care. My children deserve to be valued, loved, and served by the church. My children should also serve, just like any other person who is part of a community. Individuals with special needs are important to the church.

Church: This is how to greet my child who is nonverbal

Church: This is how to greet my child who is nonverbal

Nonverbal child greeting

Today I had the pleasure of being a guest on one of the most popular Christian shows on the radio: Midday Connection.

The host Lori Neff and I talked about my story (and my book Sun Shine Down), and about the specific challenges and joys in the lives of families affected by special needs.

We discussed what churches can do to support children with special needs and their parents and siblings, which got me thinking about our youngest daughter, Evangeline.

Evangeline has Down syndrome and autism and is nonverbal. Some of her go to behaviors (rocking, mouthing things, pulling hair, and ignoring people) can be alarming for those who have never met her.

And a lot of times people don’t know how to talk to Evangeline or how to interact with her, so they don’t.

I understand. You don’t want to say or do the wrong thing.

I find this especially in church settings.

So church, this is how to greet my child who is nonverbal:

1. When we walk into the building, please don’t give our family ‘the deer in the headlights’ look because you are unsure what to do. Even if you are unsure, hide it. Instead, welcome us warmly.

2. Welcome ALL of us. Attempt to make eye contact with me, my husband, and my children, even the daughter who will not make eye contact with you. This says, ‘I see you. I’m glad you are here.’

3. Don’t speak louder than normal to Evangeline. She’s not hard of hearing.

4. Don’t assume she doesn’t understand you or what is going on because she does not speak. My daughter picks up way more socially than you would imagine. Also, ask if she is utilizing another form of communication such as sign language or pictures.

5. Ask us if we have been to the church before, and what we think our children would like to do during the service (stay with parents, go to Sunday school, etc.)

6. Follow our lead. If we talk about Evangeline’s special needs, then feel free to ask questions to learn more about the dynamics of our family.

7. Don’t speak slower to Evangeline than the rest of us. Again, she understands.

8. Don’t be offended if our daughter ignores you. She struggles socially and her eye contact is sporadic at best.

9. Also, don’t say hello to her and then ignore her the rest of the time.

10. And don’t solely pay attention to Evangeline and ignore our other children. They all need a little attention. We don’t want Evangeline to be ‘special.’ Just treat her like you would treat any other new child to the church.

11. If we want to try a Sunday school class, take us to meet the teacher, and if there isn’t a program or buddy in place to help her that day, lay out our options for the morning with grace, whatever they may be (she stays with us, someone will come in a shadow her, we may have to stay with her for this week). But make sure we know that if we decide to come back, we can all brainstorm to have a plan.

12. Make it clear that you really are glad we came to church and that you hope the church can (if they don’t already) make certain modifications and alterations that help us all to feel comfortable and ultimately grow closer to Jesus.

Churches don’t have to have a full-blown special needs ministry.

But in this day and age, odds are many families with special needs will walk through your doors. Train your hospitality team how to greet them, and have a basic protocol of what to do to help them feel welcome and comfortable.

Believe me, we’ll be thankful for it.

Resources that can help your church with special needs:

Joni and Friends

Key Ministry

The Inclusive Church

If you’d like to listen to me on Midday Connection, here it is!

World Down Syndrome Day according to Polly, an 8 year old with Down syndrome

World Down Syndrome Day is Saturday, March 21st

Did you know that Saturday (3/21) is the 10th Anniversary of World Down Syndrome Day? People all over the world are doing their part: speaking in classes, passing out brochures, posting about it on Facebook, to make sure the word gets out. People with Down syndrome are more like the rest of us than different.

My daughter Polly, 8 years old, explains Down syndrome…

Polly and I put together a little video to help celebrate! We’d so appreciate it if you would share it. In Polly’s words “Down syndrome just means you need a little extra help.”

To learn more about World Down Syndrome Day, check out WDSD 2015 and A Day in the life with Down syndrome.

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And have you seen our book Sun Shine Down? I wrote this memoir about Polly’s birth and diagnosis of Down syndrome while we were living in Kiev, Ukraine.

You can read an excerpt of it on NoiseTrade right now!

Happy World Down Syndrome Day!

Letting go of self-sabotage

Letting go of self-sabotage on the special needs journey

It took Polly, who was born with Down syndrome, a long time to walk. When she was around two and a half years old, her physical therapist loaned us a stander; this wooden contraption that looked like it may have been used for torture at some point in the past, designed to strap kids in while standing upright to build muscle mass, you know, the stuff that is critical for one to stand and walk. Because of the existence of an extra chromosome in Polly’s make up, she experienced extreme hypotonia, i.e. low muscle tone and gross motor challenges proved difficult and frustrating for our girl.

Our assignment was to strap Polly up in the stander for three hours a day, every day. Did I mention she was two-and-a-half?

At first, surprisingly, Polly was indifferent. I would tell her, “Polly, time to stand,” and hold out my left hand, palm down flat, two fingers from my right hand making an upside down V on top of the surface.  Polly would shrug her shoulders and we’d began the various steps required to get in the stander.

Soon after, though, she grew combative about standing. This is where the sabotage emerged. She figured out how to hike her little rear up over the thick leather strap that circled her middle, thus creating a ledge to sit on while she was supposed to be standing. She pulled the Velcro strap apart one handed, attempting to free herself. Eventually, it was all out war. Polly kicked the stander, pulled off the strap, and tried to push over the large wooden base. Thankfully I always got to her in time and she was unharmed. She made it clear she was sick and tired of the stander.

But we plodded on. Polly’s inability to walk frustrated her even more than that blasted stander, and I, being her mother, knew the grueling assignment was for her greater good. So, I made sure she ‘did her time.’

Letting go of self-sabotage on the special needs journey

Friedrich Nietzsche said, “What doesn’t kill us makes us stronger.”

Then why do I sabotage so many things in my life that ultimately will strengthen me? I ignore my Bible for Facebook. I focus on what other children are doing and compare them to the things my children aren’t even close to doing. I pick fights with my husband, and snap at the kids. I kick, I undo, I push.

The special needs journey can be difficult. Our daughter Evangeline, eight years old (Polly’s sister), has autism and Down syndrome. She is no where close to potty training, and her sensory needs, at times, causes her to lash out and bite, and scratch, and pull hair. I find myself at my wits end. I’m exhausted and unsure of how to help her. I’m unsure of how to help myself.

In the New Testament, the Apostle Paul writes about these struggles:

For I do not do the good I want to do, but the evil I do not want to do–this I keep on doing. -Romans 7:19

I can’t speak for you. But I know that if I continue to ignore good, profitable, and God-honoring things in my life, my proverbial ‘standers’ that help to strengthen and encourage me, I will lack muscle desperately needed, the muscle provided by God, to parent my children well.

I will sabotage myself and my family.

And that’s not what God has for me. That’s not what God wants for any of us.

So, let’s all learn from Polly, today. If you are a Christian, abide in Christ. Stay in his word, even when you’d rather peruse the Internet. Talk to others about your struggles. Kiss your spouse. Hug your kids. Tape scripture on your refrigerator… Do whatever it takes to let go of our sinner’s sabotage that Scripture says so easily entangles.

I’m trying… I’m failing a lot. But I am trying some more.

After a while, Polly gave up on sabotaging her stander. She grew stronger, and started climbing stars, pulled herself up on couches, and stepped out again and again, one shaky, muscle building step at a time, to a fuller life of participation and joy.

I want that for me. I want that for you, too.

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. –Philippians 4:7

*This post was first published on specialneedsparenting.net. 

Zemanta Related Posts ThumbnailHave you had a chance to read my memoir about Down syndrome Sun Shine Down? If not, you can find an excerpt Noisetrade or pick up a copy of your own on Amazon.

Get Your JOY Back: An Interview with Laurie Wallin {Giveaway}

Some studies report as many as one out of every four families in the U.S. has a child with a special need. Parenting is stressful even when a child doesn’t have a physical, mental or emotional difficulty. One can imagine the stress on special needs families. Laurie Wallin meets these parents right where they are in her new book, Get Your Joy Back: Banishing Resentment and Reclaiming Confidence in Your Special Needs Family (Kregel Publications/January 27, 2015/ISBN: 978-0825443398/$13.99).

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Wallin strives every day to live out her message for families: that no matter the challenge, in Jesus they can have joy and confidence. Get Your Joy Back is full of biblical insights and practical strategies to help parents recognize and shed the resentments that leave them spiritually, emotionally and socially drained. Wallin sugar-coats nothing but addresses issues with honesty, humor and — above all — hope.

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Q: Get Your Joy Back comes from a very personal place for you. Tell us about your family.

I’ve been married for almost 16 years to a man who’s a tech whiz with a wicked sense of humor and an Asperger’s diagnosis. That keeps us on our toes as parents of special needs kid because their challenges exacerbate his and vice versa. But the loyalty inherent in his wiring has also been an immeasurable gift and stabilizer for me as his partner in our family. We have four daughters, ranging in age from 6 to 13 years old. Two are foster/adopted with a half-dozen medical, developmental and mental health special needs. We daily attempt to balance our pre-teens’ mood disorders (as if pre-teens weren’t already moody), therapeutic appointments, communication with teachers and “normal” family stuff like sports, making meals, doing homework, brushing teeth, wiping up spills and my desire to lock myself in a closet and watch entire seasons of Downton Abbey in a single night.

Like most parents reading my book, we wanted to be parents but never sought to parent high-needs children. When we adopted our older two, the papers said the girls were healthy, rambunctious toddlers. Their special needs became apparent throughout the following two years, as did their resourcefulness, emotional depth and tendencies toward art and living-room tickling matches.

Q: What makes Get Your Joy Back stand apart from other books written to special needs parents?

It’s not about the kids. It’s about the parents — the primary caregivers, specifically. There just isn’t much out there for the people who are parents of these special kids. Our lives become about getting our kids the best possible care, and we can nearly become invisible. It effects our health, life expectancy, quality of life, relationships, careers . . . and we often feel like that’s just how it is and there’s nothing to be done about it. This book says, from a fellow parent in the trenches: “You’re still there. I see you. And you matter, beyond your role as Mom or Dad.”

Q: What did you mean when you said this book will help parents “stop the madness”?

The madness is the treadmill on which we find ourselves as parents. The “keep trying harder, keep ignoring what hurts you, keep putting off your needs, keep doing, doing, doing” treadmill. This book gives parents permission to get off that treadmill and provides the practical tools to release resentments, lower stress and replace unhealthy thought patterns with ones that restore joy in their lives and relationships.

Q: Why do special needs parents often feel so isolated?

They’re isolated by their child’s needs and schedules, as well as by misunderstandings with people they know.  Every family is constrained by a 24-hour day, and even for families without a special needs child, there aren’t enough hours in the day to get everything done. However, for parents of special needs children, instead of the occasional doctor’s appointment or meeting, these families’ days are full of trips to therapists, doctors, pharmacies, meetings at the school and calls to work with insurance providers and medical suppliers.

Many of the parents I interviewed for the book have also felt judgment and misunderstanding from peers, churches and communities, such that they shy away from pursuing relationships. That was one of the primary reasons for writing this book: to invite weary parents to see a way out of the stress and isolation so they can feel whole and thrive again.

Q: Why is it so important for special needs parents to take care of their own well-being?

Airlines instruct passengers that when the cabin pressure changes and oxygen masks drop down, we’re to put on our own before helping anyone else with theirs. We lose that principle somewhere in the life-and-death, post-traumatic, stress-inducing experiences we have as parents of kids with special needs. At some point the diagnosis is made and our child’s new normal begins to form, but ours never does. We stay on high-alert forever. We know our kids depend on us, but we don’t translate that into giving ourselves permission to take care of ourselves enough to support that load.

Q: Do you have moments when you aren’t sure you can make it through the day? What gets you through?

It’s a more unusual day when I DON’T have moments like that! So, yes. How do I make it through while my teen who has bipolar disorder and learning disabilities is melting down over three math problems, and her sister needs my attention because her seizures are outrunning her medications? I do it doused in reminders of God’s grace, listening to inspiring music, the audio Bible, even spoken word slam poetry from my favorite Christian artist. (Notice the theme? Audio. I’m able to stream it while doing all the other parenting stuff, if needed.) I do it by talking to God like He’s standing there with me, complete with griping, begging, crying or whatever is needed in the moment.

I do it by getting a little more sleep on the hard days, eating balanced meals (and setting a timer if I have to, so I don’t dip too low on the blood sugars), getting into the sunshine every day, using lotions with scents that evoke calm, drinking tea and having a super-secret stash of salted dark chocolate with almonds.

I also applied to public programs for respite and money to assist in having a trained caregiver in the house who isn’t just there for my kids; she is my right arm in whatever way I need help in the house or if I just need a time out to walk a few laps around the block.

Q: You interviewed more than 70 families when writing Get Your Joy Back. What was the most common theme you heard while talking to them?

The most common response is that they felt misunderstood, by family, friends, church, professionals and even their own spouses. Being misunderstood leaves many feeling hopeless because they don’t feel sharing their needs or struggles will even matter.

Q: While you are very open about your struggles, that wasn’t the case for the majority of the parents you spoke to. Why do you think they had such a difficult time talking about their issues?

I believe it’s because as Christians we’re trained not to feel bad for too long because if we do, we either 1) don’t have enough faith, 2) didn’t pray enough or 3) must be the problem that’s bringing such trouble to our families. Somehow the unspoken doctrine, which many parents mentioned in their survey responses, is that you can struggle in church, just not too loud, too long or in ways we can’t explain away with Christian-isms.

After a while, parents get to a place where they don’t even acknowledge their hard feelings. They convince themselves they’re OK and nothing is too hard because they’ve grown accustomed to making it sound OK (read: Christian/faithful enough) to people they’ve tried to talk to before.

Q: You talk in the book about forgiving your child. Have you found that idea to be controversial in any way?

Yes, that’s bothered some people — mostly people who are still struggling with what we were just talking about. But also because the second we let ourselves say what we grieve about our child, we feel guilty for even thinking that. After all, it’s not like our child planned or asked for this or wanted to make our lives hard! We don’t realize that by censoring our emotions, we’re not being more spiritual; we’re being dishonest and short-circuiting the healing God will certainly bring when we take an honest look at the challenges.

Basically, any controversy I’ve encountered thus far hinges on the fact that typically, as westerners, we don’t understand healthy grieving. It feels so uncontrollable and so undefined . . . like a black hole. When it comes to our kids, that translates to “I don’t want to even THINK about my negative feelings about my child or her condition because then Pandora’s box might open and swallow me whole. My family needs me. I can’t take the risk to fall apart.” That kind of thinking robs us as parents of the joy on the other side of healthy grieving.

Q: What is the number-one thing you hope Get Your Joy Back does for special needs families?

I hope the book breathes joy and confidence into the deepest, weariest places in their hearts and lives and they leave it feeling recharged and hopeful in relationships at home and beyond.

Learn more about Laurie Wallin and Get Your Joy Back at www.lauriewallin.com and on FacebookPinterest or Twitter.

To win your very own copy of Get Your Joy Back, head on over to our Facebook page to enter or simply comment below with your favorite way to get your joy back! Ends February 1, 2015 at 12:01 a.m. CST!