Welcome to therapy land. (aka "why does Zoe need therapies?")

Nope, not therapy for me, though I'd be up for some Jubala Village Coffee therapy with any of you if you're interested. (Any takers?)

Zoe is beginning physical therapy (for gross motor skills) and occupational therapy (for fine motor skills). Or, in hipster special needs momma lingo, PT and OT.

I usually focus on what she can do, but some people have asked, "Well, if she's doing so well, what's the therapy for?" Well, she's 11 months, but she was born approximately 2.5 months early. That means we look at what she can and can't do in comparison to a typical eight month old. (Special needs etiquette lesson of the day: "typical" is usually the preferred term for kids without special needs.)

Right now, a typical eight month old - per the Mayo Clinic - can do a lot of things Zoe can't: roll both ways (she can, but she doesn't like to because it's laborious), sit up (not even close yet), scoot or rock or crawl (nope), use both hands well (her left hand does okay, but her right notsomuch), pick things up with a pincer grasp (nope, she's a fist girl), and so on. We'll work on those last two in OT and the others in PT. In between therapy appointments, we'll do home exercises.

In both OT and PT, we'll do lots of stretching (which we do daily with her too) because she - like many kids with cerebral palsy, Zoe's official diagnosis - has increased tone in her muscles. To use an analogy, think about the last time you had a muscle spasm in your leg in which everything got tight and you had trouble relaxing. That's kind of like what happens with Zoe, except it's not that severe and it's a constant issue. After stretching time - which she doesn't love but does tolerate - she is visibly relieved and obviously more comfortable.

An amazing trait of our sweet Zoe, though, is her tenacity. She is smart, and she gets frustrated when she can't do something that she wants, like when she wants to drop a toy to pick up another but her grasp tightens instead of loosening. She is motivated to do more, which can help a lot...

...however, this also means that she knows what she doesn't want to do. Consider tummy time for babies. You probably didn't think about it this way, but it's a physical therapy exercise we do for all kids. Some don't mind it; some hate it. But we do it anyway, because it helps.

For Zoe, some therapy activities she likes, and some she hates. We know, even if she doesn't, that they are all helpful, so we keep it up.

"What?" she says. "You're going to keep doing those exercises I don't like?"

On another somewhat related note, I find that adoptive and special needs parents alike tend to be a bit prickly. If you Google "what not to say" and "adoption" or "disability," a whole lot of hits come up: nearly a million for "adoption" and more than half a mil for "disability." While a bit of language etiquette can be helpful, it can also make people outside of the adoption and disability communities scared to say anything, out of fear of an unintended insult crossing their lips.

I'm not easily insulted, and if I ever am (or have been), I'll tell you kindly and in person (rather than passive aggressively using you as a "what not to say" example on my blog). So do you have any therapy-related questions? Or other special needs- or adoption-related ones?

(I'm not prickly, I promise, so ask away.)

a rambling post in which I'm asking for the favor of friendship

Yesterday evening a friend texted me and asked what I was doing that night. I'm not sure what fun thing she was going to suggest because I had to text back, "Resting in bed. I have some sort of bug." (In retrospect, I think something I ate didn't agree with me, but still: no night out.)

This morning, Zoe girl woke up with a fever. She has the same cold that her brother and sister last week, but I thought she was over it on Monday. She's not. The playdate I was going to have with another friend today? Cancelled. 

It's days like this that I have to fight for joy.

I can handle being benched for an evening or a playdate, but I've been down this road before, and I'm a bit scared. My body broke after Jocelyn was born, with one autoimmune disorder and then another and then crop after crop of infections as we learned that some treatments made me dangerously susceptible to opportunistic illnesses. (Those treatments and I are no longer on speaking terms, so I'm mostly healthy nowadays.)

While the autoimmune disorders aren't going anywhere, I've figured out a nice combination of dietary, lifestyle, and pharmaceutical choices that make life pretty normal. Praise God! But from not long after Jocelyn's birth in 2007 until around Robbie's first birthday in 2010, I spent three years in daily pain. Those years are a blur. It's hard to recollect much when every movement of every minute of every day hurts for more than 1,000 consecutive days. I praise God for all He taught us in those indescribably difficult years (for example, this post and this one), but my heart grieves over them sometimes. While we've found a happy place with my health stuff, I haven't figured out how to mend the friendships the painful years stole away.

That's why I'm scared. 

It's hard to be friends with someone who is sick. Friends had to put up with cancelled plans and apologies and more cancelled plans and more apologies and... well, you get the picture. I can speculate at all the reasons, but the fact is that many friends gave up. Eventually, many people stopped making plans with us, and I was too scared of having to cancel again that I stopped too. Our friendship was too hard, for them and for me.

No one but Lee and God saw my lonely tears in those years.

As promised to Israel in the book of Joel, God has fulfilled the promise to "restore to you the years that the swarming locust has eaten." We have friends, some who rode out those tough years with us, some who we've met since, and some who we knew then but know much better and more sweetly now. But...

It can be hard to be friends with someone who has a child with special needs. I know this from stories shared with me by parents from our church's Access Ministry. I'm starting to see a bit of that. For starters, as we get started with multiple days of therapy each week for Zoe, I know playdates are going to be hard to come by. I am too tired by evening to want to go out most of the time, but with driving Jocelyn to and from school (which I cherish) and getting therapy time in for Zoe, I don't know where friends will fit. Sundays are full of church activities, and most of my friends seem to do family activities on Saturdays.

I fear that I'm starting another season of life in which friends will be lost. 

If we are, it is 5000% worth it. (Yes, 5000%. I never was keen on the rules of math.) Zoe is worth it. Adoption is worth it. Following God's call for our lives is worth it regardless of the cost, because He loved us first and considered us - sinners, though we were - to be worth the cross.

But can I ask you a favor?

Would you try to ride through the stormy part with us? Would you be that community I admitted I needed in this post? Would you see through the second or fourth or eighth cancellation of plans and understand that I'm trying? Would you be willing to look past the smile on Sundays and wonder if that same smile is on my face during the lonely days in between? Would you get that I'm tired and might not be up to reaching out to you myself and extend sweet grace by picking up the phone or sending the email, even if I didn't reply to the last email or phone message?

Would you be my friend, even when it's not easy?

Thanks.

 

Including ALL People in the Church (from my #D62012 Nuts & Bolts of Special Needs Ministry session)

Special needs ministry can be done well at any church that is willing to include ALL people in the church by:

Adapting
Loving
Looking

(See how I did that? Yep, an acronym. In order to speak at a church conference, you have to prove that you’re able to use at least one. I got bonus points for having three in my first session, and I’ll share the others later this week.)

Adapting

•        Any degree of special needs ministry in your church will require a willingness to change. Sometimes physical environments – the building, the room set-up, the parking – needs to change…
•       …but more often than not attitudes need to change. The best way to change attitudes is with God’s truth. Here are my eightfavorite Bible passages (and one I don’t often use) related to special needs ministry.
•     Other aspects of ministry – such as curriculum choices, measures of success, volunteer recruitment, and teaching – need to change as needed too.  

o   Volunteer recruitment.
We tend to measure need by the number of kids in a class. For example, if we have two classes with no Sunday school teachers – a large class and a small one – we usually prioritize getting the large class covered because it’s easier for subs to teach a smaller class or to combine the smaller class with another class. However, this way of thinking isn’t always helpful. It is just as valuable to find the right person to be paired with one child who needs support as it is to find the right person to teach a class of 15; God’s economy doesn’t measure the work of the person with one child as more or less important than the work of the one teaching the full class.

o   Curriculum choices.
I can’t tell you the perfect choice that will work for all kids, students, and adults with special needs, but some good features to look for in a curriculum or to add to what you’re already using are visual aids, music, movement, teaching time broken into smaller chunks instead of long stretches, and a clear, consistent, and predictable schedule. (In our adult class, we use the Access curriculum from Lifeway. In our children’s and students’ ministries, we use the Treasuring Christ curriculum, for which I write special needs strategies.)

o   Teaching time.
Here's an example. I recently emailed our children’s discipleship pastor about the need for visual aids – even a few powerpoint slides – during his large group teaching time at our kids’ Sunday night program. The cool thing is that while I asked for this to help one child with autism in the group, it will also benefit most of the other kids and improve the teaching time for all.

o   Measures of Success. 
Fair doesn’t mean equal. Let's identify the core biblical truth we intend to impart in each lesson, andaim for all kids to grasp that, even if some don’t get all the nitty grittyextra tidbits in the story. Let’s learn to celebrate every milestone – a partially memorized verse, even if the other kids memorize five verses during that time; eye contact with a classmate; the first day that a child who is prone to elopement (that’s the fancy special needs word for wandering off or running away) doesn’t try to leave the classroom.

Loving

When we interact with people affected by disabilities, we can show love through:

• Safety. Churches should be safe places, emotionally and physically, for families affected by disability. (I’ll expand more on this in tomorrow’s post.)
• Friendship. Don’t look away or avoid people with disabilities. Get to know them, beyond their disability. Be a friend, and let them be a friend to you. Talk about sports or clothes or church or music or whatever other topic you might talk to any other friend about.
• Confidentiality. We keep the details of their diagnosis and challenges confidential. Those who are involved with teaching need to know them, but otherwise let the person be a person first. None of us wants to walk around church wearing a sign that says “My biggest challenge is [fill in the blank]” so don’t do that to people with disabilities in your church by sharing openly about their stories without permission. (Remember: It’s their story, not yours.)
• Presence. I get to go to my first Miracle League baseball game this Saturday. A young friend of ours is playing, and I might get to see another friend and his family there too. As a dad said in one of Marie Kuck’s D6 sessions, "Just be there and be incarnational in that way." (To be honest, though, I’m not going there with the aim of being incarnational. I just really, really like hanging out with our little friend and his family.)
• Joyful service. One mom told me, “We’ve never been asked to leave a church because of my son’s disability, and I’m thankful for that because I know that sort of thing happens. It’s just that… well, at other churches they make us feel like a burden.” Families affected by disability need to know that church is a different sort of place, a place where we are happy they are there and we care about them.

Looking

You want to look for the kids and students and adults who are not being physically included and who are not being spiritually included.

Physically included: The most obvious (yet easiest to ignore) families who aren’t physically included are the ones who aren’t present at all. If your church doesn’t reflect or exceed the average prevalence of disability in your area (for example, if you’re in the US and your children’s ministry doesn’t have one child with autism in approximately every 88 children), then you need to examine why.

Another kind of family who isn’t physically included at your church could be one who selectively attends, coming to worship but not Sunday school or vice versa.  If that’s due to their preference, fine. However, if it’s because they aren’t able to attend church (perhaps because of sensory overload) or because they aren’t able to attend Sunday school (perhaps because a child needs more help than your church provides for those with disabilities), then you’ve found an area in which you might be lacking physical inclusion.  

Spiritually included:  Once we’re physically including people with disabilities, we are often tempted to stop there. However, if our aim – for example – in children’s ministry is for all children to know Christ and grow in Him, then that means we’re aiming for more than kids simply showing up. Therefore, we ought to also aim for more than the physical presence of people with disabilities throughout our church. (Pat yourself on the back for physical inclusion, though! That’s a good first step. It’s just not your last one.) Consider, what is our goal for all typical members of our church? Are we upholding that for the members who have special needs? Look for the places in which your church is falling short and figure out what you can do to bridge that gap.


What other ideas do you have for ALL people to be included in the church?

My 8 Favorite Bible Verses for Special Needs Ministry (& The One I Usually Don't Use)

When I'm training volunteers, talking to new families, advocating for our ministry within the church, or speaking at conferences, these are the eight verses I use to emphasize the calling that each church has to include all people.

John 9:1-3 

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him."

What I love: 

that Christ saw the man first, that those who had been spending time closely with Christ still didn't have a right understanding of theology and disability, that Christ makes it clear that disability is not a punishment for sin, and that God has a purpose in disability

Luke 14:12-14 

He said also to the man who had invited him, “When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you. For you will be repaid at the resurrection of the just.”

What I love:

that people who know Christ are called to act differently and unexpectedly, that God is inviting us to have a party that includes people of all walks of life, and that we are called to serve without expectation of reciprocation

Psalm 139:13-16 

For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.

What I love: 

that God creates all life purposefully and that life begins in the womb

Mark 10:14-15

But when Jesus saw it, he was indignant and said to them, “Let the children come to me; do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.”

What I love: 

that Christ welcomes all, that He rebukes the disciples for keeping the children away, and that He esteems child-like faith over adult intellect

Mark 16:15 

And he said to them, “Go into all the world and proclaim the gospel to the whole creation.

What I love: 

that people with disabilities are part of the whole creation

1 Corinthians 12:12-27 

For just as the body is one and has many members, and all the members of the body, though many, are one body, so it is with Christ. For in one Spirit we were all baptized into one body—Jews or Greeks, slaves or free—and all were made to drink of one Spirit.
For the body does not consist of one member but of many. If the foot should say, “Because I am not a hand, I do not belong to the body,” that would not make it any less a part of the body. And if the ear should say, “Because I am not an eye, I do not belong to the body,” that would not make it any less a part of the body. If the whole body were an eye, where would be the sense of hearing? If the whole body were an ear, where would be the sense of smell? But as it is, God arranged the members in the body, each one of them, as he chose. If all were a single member, where would the body be? As it is, there are many parts, yet one body.
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.” On the contrary, the parts of the body that seem to be weaker are indispensable, and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together.
Now you are the body of Christ and individually members of it.

What I love:

that every part of the body of Christ matters and that we're all in this together, no matter how strong or weak we seem

Exodus 4:11 

Then the LORD said to him, "Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?"

What I love:

that God reveals a theological mystery here, taking credit for disability (i.e. He doesn't just allow it, He authors it, even if we don't understand the purposes)

Romans 3:23

for all have sinned and fall short of the glory of God.

What I love: 

that in this verse and all others, "all" includes people with disabilities... and the gospel applies to them as well as me, because all of us are sinners in need of a Savior

...and the one I don't use often.

Matthew 25:31-46. 

I won't paste the entire passage here, but this is a oft-quoted "least of these" story told by Christ. I don't have a problem with others using it, but I don't usually use it in special needs ministry trainings. Why? Well, I find that my listeners immediately identify as the ministers (us) and consider people with special needs to be the least (them). Considering that all of us are broken by sin and all - with and without disabilities - gifted to contribute to the body of Christ (see the 1 Corinthians passage above), it is often unhelpful to cast ourselves into separate camps. Instead of always ministering to "them," how about "us" and "them" acknowledge together that we're all the least of these and join together to worship the King of kings?


What are your favorites? Did I leave off any verse(s) that you find useful as a disability ministry leader or a special needs parent?

links I'm loving in disability ministry (on unexpected wisdom, being asked to leave church due to #autism, and faulty divorce stats)

A four-year-old with disabilities provides the best advice of all!

Finally little Krista walked over and said (I can still hear it today), "Guys, we need to pray about this."

The Tale of Two Churches

I was escorted out of a church service yesterday with my 9-year old autistic son. Despite the fact I had heard of this sort of thing happening on the news more than once, I never expected it to happen to me.

A scientist responds to 'Fetal Flaw'

Disability (I will not use the word defective) is not easy, but it is not a reason to kill a human being.

Book: Special Needs Ministry for Children

A new version of this good ol' special needs ministry staple (formerly titled Special Needs, Special Ministry; I reviewed that version here) just came out from Group.

Pastors: That Divorce Rate Stat You Quoted Was Probably Wrong

Christians aren't the only group to be misrepresented. Parents of special needs children are victims of this as well. But as pastors who are charged with proclaiming Truth (with a big T), we must also commit to proclaiming truth (with a little t).

Book: Your Special Needs Child: Help For Weary Parents

I'm not familiar with this book, but a publisher who was at D6 sent me a tweet about it after I had to leave earlier. Here's part of the description: "Steve Viars helps parents of special needs children to be authentic before the Lord about their pain, guiding them in thinking biblically about their challenges and God's promises." (I do wish the title used person-first wording, though.)