That my house will be full

“Church is the one place where we should always feel love and accepted, yet it is one of the most intimidating places of all.”
~Jennifer J. Holt, Homelife Magazine, 2011

This past weekend I attended a Disability Ministry conference with two dear friends. The aim of the conference was to help churches learn practical ways to serve people and families with special needs. It was good to be in the company of others who shared a desire to see churches implement creative ways to reach special needs communities. I came away inspired, armed with notes and a new book (Autism and Your Church, by Barbara Newman), and my head swimming with ideas.

I love this excerpt from the book:

It was time in the worship service for the pastor to give the message. As the pastor began to speak, an individual started making noise in the back of the church. Without missing a beat the pastor calmly said, “Some of you might be hearing my friend Marie. Marie’s mom and dad have asked me to tell you that she has Autism Spectrum Disorder. Sometimes the tags in her clothes or a sound she hears really bother her. I appreciate that Marie is my cheering section today.”

A workshop I attended included a panel of 4 adults with special needs sharing about their involvement in church. This was the best part of the conference for me, and I found myself actually whispering prayers to God on their behalf (and Rhema, too) throughout. The panel was asked about positive experiences they’ve had in church, and I noticed that each response had something to do with friendship. It was clear that community and the relationships they’d formed in church were so significant to them.

When the panel was asked about negative experiences in church, a young woman spoke about how she struggled with the music being too loud for her. She said it actually physically hurt, and she often experienced guilt over needing to leave. For years she thought it was her fault. (And at this point I wanted to put my arms around her). She said that now she understands that it’s ok to leave the sanctuary if she needs to and she is learning not to be so quick to blame herself.

Another young woman, with a speech delay, also answered the question about her struggles in church. Each precious word she spoke took effort and I cannot ever forget what she said: “There’s no other kind of me.” I thought of my Rhema. In our church right now there is no other little girl like her. And I don’t know all that she feels, but I know she enjoys being a part of things even if she’s doing her own thing – that is her part. And I’ve no doubt she desires friends and meaningful relationships, as we all do, even though she may not show that longing in a way we might expect. Oh, how I pray that she will experience true friendship in her life.

There’s no other kind of me. Sweet girl, it’s a burden and it’s a gift.

Another question for the panel was, “What can people in church do to make it more welcoming to people with disabilities?” One answer: “We don’t like to ask for things, we are not being picky, we are not expecting everything to be perfect. Just know that it’s a big deal to ask for help.” A young man with Asperger’s said that he wanted people to know that he has what he has and is what he is forever, and that it’s hard.

As I listened, I was suddenly filled with an odd dream, a desperate prayer and an even bigger hope. God, one day can my Rhema sit on a panel like this? Can we hear from her? – what she thinks and how she feels, the good and the hard, anything she wants to share. I don’t care if it’s her own speaking voice or an automated voice or pictures on an iPad, please please help her find a way. Please just let me hear what’s inside.

The panel did a great job, and I hope there will be many more conversations like it in many churches. An oft-referenced Bible passage is Luke 14 where Jesus instructs, “But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Make them come in, so that my house will be full.”

The ones who require extra help, the ones who are too loud, the ones who don’t speak, the ones who are lonely or bullied or overlooked, the ones who cannot seem to reciprocate – God says they will bring blessings! And they are to be given special honor.

Do not let fear or your child’s challenges (or your own challenges) deter you from finding a church home. I have found that many churches have a heart for the special needs community – from putting trampolines in Sunday school classrooms to setting up buddy programs to hosting “Mom’s Morning Out” for women who have children impacted by disability.

Two years ago this happened:

So there’s another thing about church. We always sit in a small pew, in the second to last row, near the door so that we can make a fast getaway when the need arises. I think it can be overwhelming for Rhema still – all the people, the sights and sounds – but her seat, her pew, is predictable and comforting. In the past, if we’ve arrived and people were already sitting in “our” pew, Rhema has attempted to sit on them. When we re-direct her to another pew, she’s completely thrown. She’s even cried.

This morning before church, B and I had a brief conversation about where we’d go if the pew was already occupied. We had a plan.

But when we arrived at church we found this in our pew:

(I “whited-out” our last name for the blog).

No one said anything to us about it. They just noticed our struggle on Sundays and wanted to make it easier. We often worry that we’re disrupting the service. But that little sign spoke volumes to me – that we are loved as we are, that we belong, that we are family.*

Ed Note: If you are visiting a church for the first time, call the church office a week ahead and let them know about your particular needs.

Some articles and resources:
Is Your Church Open to Autism? By Emily Colson
Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families By Amy Fenton Lee
The Inclusive Church blog
Special Needs Smart Pages: Advice, Answers and Articles About Teaching Children with Special Needs by Joni Eareckson Tada

Love after all

I hear a strangled scream from one of my children and then the pained cries of the other. I cannot move fast enough to get to them.

Through many tears Hope explains how she was reading her book of Princess Adventures and how Rhema was sitting on the bed and became upset. How she went over and gave Rhema a hug. (When Rhema is particularly troubled the only person she welcomes touch from is Hope.)

And this is what Hope does when she senses her sister is distressed or overwhelmed – she holds on tight and tells her it’s ok. She doesn’t know why she is distraught, why it happens so often, but that doesn’t really matter to her; she just needs her sister to know that she is never ever alone. And nothing that agitates her or hurts her or scares her or saddens her is bigger than this. This love, this hug.

After the hug Hope goes back to her book. Then Rhema screams and throws her iPad across the room. It smacks Hope in the face, leaves a knot on her head.

Hope cries in my lap. Rhema babbles and hums in the background. No one says sorry but me.

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We head to the kitchen for an ice pack. Rhema comes down minutes later, hunting for cheese in the refrigerator. Hope grins wide -even though it hurts – because her sister loves cheese, that’s for sure. She walks over and reaches up, “Are you feeling better now, Rhema??”

Rhema forgets about the cheese for a moment, leans close to Hope. They do the cheek bump. And teach me what I still desperately need to learn – the way of true love.

Love is patient, love is kind.

It does not envy,

It does not boast,

It is not proud.

It does not dishonor others,

It is not self-seeking,

It is not easily angered,

It keeps no record of wrongs.

Love does not delight in evil but rejoices with the truth.

It always protects,

always trusts,

always hopes,

always perseveres.

Love never fails.

~1 Corinthians 13:4-8

Unbroken

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It was only a matter of time with all the evening outbursts and midnight parties. In fact she’d snapped the wooden frame of her bed several times over the years, and we always managed to repair it. But this last time when I found her sitting atop many broken pieces and splinters, I said, Peace out, homie. The End. You’re Done. (To the bed. Not the child.)

While I was at work our youth pastor kindly came over and moved the parts to the basement for me. A couple days later three friends arrived to determine if the bed was as I said: irreparable.

Side note: Since Brandon deployed last summer the men from our church have taken care of the girls and I so well. From the house to the car to the snow to opening jars of pickles – they have stood in the gap for us. We are so blessed!

The men loaded the bed pieces onto a truck and went on their way.

I began browsing special needs furniture stores online for the toughest bed I could find.

The next day Steve called to say they’d rebuilt the bed… they’d also built a new railing for her… and when could they bring it by?

And I laughed incredulously and thought of God’s intention to heal all the broken things in me. No matter the shattered pieces, there is never irreparable with Him. Only Him. Sometimes He knocks it down, only to build it up stronger.

And if that bed can be re-built and I can be re-made, there is great hope, a happy ending to the story.

One day He will heal and bind all that ails. If not here and now, one day.

I know one glorious day we will be disability-free, pain-free, sin-and-sadness-free. My friend L wrote: ‘I cried when I imagined Rhema, who doesn’t necessarily respond when you call her name, rising up at Jesus’ voice calling her. I pictured her hearing him and responding, unhindered by autism. Autism and epilepsy will be non-factors.’  She’ll lift her head and dance upon gold-paved streets. She will open her mouth and sing praises to her Lord forever.

~Rhemashope, March 2012

*Updated with pictures:

bedassemble bed

Spotlight

In the weeks since Rhema’s hair-pulling/eating returned with a vengeance I’ve been doing some letting go. Her amazing curls have always been precious to me, and perhaps as my expectations for both of our lives shifted over the years, I turned her physical beauty into something of a consolation, something I could control.

After we cut her hair short last year because of trichotillomania, a few friends told me about dreams they had in which she was talking and her hair had grown back. Without realizing it, I associated long hair with health, happier days, and progress for Rhema.

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Even in this, I think God has had something to say about trusting Him, believing He’s at work even though my measuring stick tells me different. And about holding onto Him… not something as fleeting as hair. “The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.” (1 Sam 16:7).

Life with Rhema is making me want to see people better, with God-eyes… and love them.

We were waiting in line in a crowded grocery store, and Rhema could not stand still. I watched her as she weaved between shoppers and carts and rocked and hummed and sampled a few boogers. I saw her mind processing the sights and sounds in her unique way. I saw her hands, shirt and pants stained from the markers she’d colored with earlier. I saw her anxious body still pudgy from the weight she gained while on a particular medication. I saw the thinning hair and bald spots on the top of her head. And she was so genuinely lovely, every part of her, I left my place in line, rushed to her and wrapped my arms around her and held her close.

“It’s time to throw out my ideas of what I thought life would be, should be, and let joy fill up those brand-new vacancies.”
~Emily Colson

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This blog has a Facebook page now! (I’m going to try and type the next line with a straight face. Here goes.) Please like us at http://facebook.com/rhemashope .

:)

Their version

Thanks for your prayers for Rhema! She is still struggling a lot, but as we’ve come to expect on this journey, even on the hard days there are beautiful moments of progress, hope and love that just take my breath away. I’m so thankful God does that for us. We are blessed!

I almost forgot the many hours of early intervention, OT and ABA therapy in which the goal was to help Rhema clap her hands. She could not imitate the action and when our hands guided hers, her fingers would curl in. It seemed to take much motor planning and coordination to flatten her hands and put them together.

But now there is Pat-a-Cake. (In which Hope takes all credit for teaching)…

Their own special version of non-verbal imitation, rhyme and rhythm, associating gestures and spoken words, social play, joint attention, and miraculous, one of a kind sister-love connection. :)

 

Unfulfilled dreams

Many, many years ago my mother gave me a tape that had recordings of Martin Luther King’s lesser-known speeches and sermons. They were fascinating and I discovered that behind the image of the great historical figure, there was a man who simply had a heart for God. He was a man who doubted, who got tired and discouraged in the face of indescribable adversity (- jailed over 18 times, nearly stabbed to death, his house bombed 3 times). But he always came back to trusting in His Lord and standing in courage on his faith.

His sermons continue to speak to me in the midst of my own journey.

Once he preached a sermon entitled Unfulfilled Dreams. I am there now, in the old country church of hard wooden pews and no air-conditioning, sitting in unfulfilled dreams. I am moving to the sounds of Yes and Amen, the tapping of feet, the flapping of cardboard fans from the local funeral home. I am hearing the voice of Jesus, say still to fight on.

Oh this morning, if I can leave anything with you, let me urge you to be sure that you have a strong boat of faith. The winds are going to blow. (Yes) The storms of disappointment are coming. (Yes) The agonies and the anguishes of life are coming. (Yes, sir) And be sure that your boat is strong, and also be very sure that you have an anchor. (Amen) In times like these, you need an anchor. And be very sure that your anchor holds. (Yes, Glory to God)

It will be dark sometimes, and it will be dismal and trying, and tribulations will come. But if you have faith in the God that I’m talking about this morning, it doesn’t matter. (Yes) For you can stand up amid the storms. And I say it to you out of experience this morning, yes, I’ve seen the lightning flash. (Yes, sir) I’ve heard the thunder roll. (Yes) I’ve felt sin-breakers dashing, trying to conquer my soul. But I heard the voice of Jesus, saying still to fight on. He promised never to leave me, (Yes, sir) never to leave me alone. (Thank you, Jesus) No, never alone. No, never alone. He promised never to leave me. Never to leave me alone. (Glory to God)

And when you get this faith, you can walk with your feet solid to the ground and your head to the air, and you fear no man. (Go ahead) And you fear nothing that comes before you. (Yes, sir) Because you know that God is even in Crete. (Amen) If you ascend to the heavens, God is there. If you descend to hell, God is even there. If you take the wings of the morning and fly out to the uttermost parts of the sea, even God is there. Everywhere we turn we find him. We can never escape him.

~Martin Luther King, Jr., from Unfulfilled Dreams

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Just an update

Thank you for the well wishes for Rhema’s tests last week. She was a superstar. She didn’t like skipping breakfast for two days but she went along with it. She obliged us and did the x-rays and even drank a whole cup of barium – yes, she did! – (by way of a 5 ml syringe… it took a long time). But we all have things in life we just will not do. For me, I won’t ever participate in a hot dog eating contest or share my cupcake or bungee jump off the Empire State Building. For Rhema, she will not will not will not lie down on a hospital bed (or examining table). Fuggedaboutit. So that meant we had to get creative, and B and I got to put on scrubs and those cloth hat thingys and go into the OR to help put her to “sleep”.

We’re still awaiting some test results. One thing was confirmed: the kid is super constipated. She takes Ex-lax and Miralax daily and has done so for months. But she’s still constipated, and it may be the biggest reason she’s tossing her cookies all the time. Her gastro said, “Her abdomen is distended, her stomach is not emptying, and she’s just run out of real estate in there. Rhema is one of several patients with autism that I’ve seen with chronic constipation and poor gut motility. I think there’s much for us to learn when it comes to kids with autism and GI issues.”  Yep.

IMG_0690 We did this about 438 times.

IMG_0679“I’m a macho man.” 

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Just cute.