All that I have

I don’t know how to say this
I don’t know where to stand
I don’t know where to put my feet
or where to put my hands…

I think we’ve figured out
this world is bigger than you and I
We’ve exhausted our wealth of knowledge,
have no more answers for mankind

And we’ve had every conversation in the world
about what is right and what has all gone bad
But have I mentioned to you that this is all I am?
this is all that I have

And I’m not trying to judge you
no that’s not my job
I am just a seeker too
in search of God

Somewhere somehow this subject became taboo
I have no other way to communicate to you
that this is all that I have
this is all that I am

And I would like to share with you
what makes me complete
I don’t claim to have found the Truth
but I know it has found me

The only thing that isn’t meaningless to me
is Jesus Christ and the way He set me free
And this is all that I have, this is all that I am
It’s all that I have and it’s all that I am
It’s all that I have and it’s

all

I don’t know how to say this
I don’t know where to start
just know that I care for you
and I’m speaking from my heart

~Sara Groves, Conversations

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A recent conversation among an amazing group of mothers about

church and autism

has prompted me to be so bold as to say…

If you are local (live in Massachusetts), I want to invite you to come to church with us.

If you or a family member has special needs, I believe you will find our church very accomodating, careful, friendly, helpful. I’ve blogged here, here and here about how the church has embraced and supported my family with our many special needs.

If you are interested in the invitation… or the conversation…

email me at rhemashope@gmail.com .

I need to not forget

We’re moving.

My husband received military orders today and it’s officially official. Brandon will be coming home from Iraq sometime in October or November. (Thanks to all of you who have asked!) We’re on the home stretch of a 15-month deployment!

In December we will move to the DC metro area.

This is not what I wanted.

This has been our home for four years. Hope was born here; it’s the only home she’s ever known. My family is here – my parents and younger brother. My dear twin sister and her family are here- we’re just not meant to be apart. Our community and church are here. It breaks my heart to leave behind people I love dearly.

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And then there’s Rhema.

(Isn’t that always the line? She will always be my subject to approval, my special consideration, my exception clause.)

After three years of tweaking it and working at it she is in an outstanding learning environment. Her school, Futures, is the best of best. Her therapists outside of school are excellent; they know her, teach her and love her so well. Her neurologist of four years cares and understands a little-understood seizure disorder and how it affects Rhema better than anyone.

Everything is in place, and Rhema is thriving. It is finally as it should be.

But we are moving.

We’ve tried just about everything to stay, but, apparently, it’s time to go.

I’ve done my research, I’ve called schools and admissions people in Maryland and Virginia. It’s been discouraging to say the least.

Friends, I’m being called to task on everything I’ve said on this here blog.

And I need to not forget

~That, simply, I believe God loves my daughter more than me and He’ll take care of her.

~That He has always faithfully provided for our every need.

~That if I rehearse His gracious deeds of the past, I will find light for the present. Hope for the future.

It goes something like this:

 

“God, our little girl has autsim. We need the best services, teachers and therapists you got.” Check!

“God, we need our girl to get into a special school NOW, but it has a five-year waiting list.” Check! (We got in in three months).

“God, our little girl has a rare seizure disorder and we need to find a way to treat it.” Check!

“God, we want therapists who are willing to work with her on weekends. Oh, and we need some money to pay for it.” Check, check!

“God, Brandon is deploying for a year. We need help!” Check, check, check!

“God, we need a respite care provider. Oh yeah, and some insurance coverage.” Check!

“God, now we need to move Rhema to another new school. Can you do it?” Check!

~That He will do it again.

~That His plans are better than mine. “In his heart a man plans his course, but the LORD determines his steps.” Prov 16:9

~That a bad attitude is not helpful.

~That cherry blossoms in bloom are, admittedly, pretty cool. (I’m reaching here.)

~That I can lay every fear, every heartache at His feet. And He is my strength and song.

So do not fear, for I am with you;
       do not be dismayed, for I am your God.
       I will strengthen you and help you;
       I will uphold you with my righteous right hand. (Is. 41:10)

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If you believe these things with me, will you do me a favor in the weeks ahead?

Pray that I remember. Remind me to remember.

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If you have any connections to the DC area and know of any good autism programs, therapists or doctors, please e-mail me at rhemashope@gmail.com.

Our Autism Beginnings, Part 2

As Rhema remained silent and distant, I continued my research about speech delays and autism until one day I found the end of the Internet. I was sure I’d read every article and visited every discussion board that existed on the topic. There was no blood test for this thing. And there seemed to be a lot of other mothers out there in cyberspace doing the same thing as me – wondering, worrying, comparing their child’s behaviors with another’s.

I let myself entertain the idea that maybe, just maybe Rhema might have somehow gotten a little sprinkling of autism-like dust on her. But I reasoned that if we could get her to age three without any professional saying the A word out loud, then we’d be home free. I learned the screening questions for autism and came up with good excuses for why she did not point or play with her toys appropriately, why she was fixated on string.

We moved back to the States and spent time visiting my husband’s family, and it became painfully obvious to me that Rhema was very different from her cousins. There was no denying the significance of her delays. I called my sister on the phone and finally uttered the word out loud, “Rhema’s acting like she’s autistic. I… I just can’t seem to reach her!” My sister cried with me on the phone. (I’ll never forget it – June 4, 2006 – that same day my dear sister hung up the phone with me, drove herself to the ER and was diagnosed with MS.)

A couple months later I met up with a couple other mothers at the park. Their children played together, walked and talked nicely and ate healthy food for lunch. Rhema never seemed more hyperactive and isolated. I was uncomfortably pregnant, and a sweet friend would get up and chase Rhema down for me every time she bolted. I stood among the others and watched my girl. It was such a beautiful day, the sun was shining, the fields were velvet green. Rhema ran in dizzying circles on her toes, her head cocked to the side, her eyes half-closed.

And I knew. Finally, I knew.

It was time to stop fighting the truth and instead fight for her. Time to stop fearing the label. Time to get the help she needed.

That night, in the middle of the night, I woke up my sweet husband. He knew she was a little different, he had been concerned, but he didn’t know. I didn’t want to break his heart. I didn’t want to tell him that something was wrong with the precious girl I’d given him. Another baby was growing inside me, and there was a chance she could have it, too.

It did break his heart. But he did what he’s always done well. He took my hand, prayed to Jesus, made a plan, and loved his girls as best he could.

A month later we had an official autism diagnosis. A few months after that Rhema was diagnosed Landua Kleffner syndrome, a rare epilepsy. (I write about that here.)

I’d love to say I handled it well. I plastered on a smile, went through the motions. But I spent a good year angry, bitter, and disappointed in God. I felt like the child I thought I had had been stolen from me; my dreams for her shattered. I did not lean on my husband enough, the man God perfectly gave to walk beside me – instead I grieved alone. I was jealous of typical mothers and their typical children and their typical lives.

Slowly God began to demonstrate His faithfulness to us in the midst of the pain. He provided a community of friends, teachers, therapists, doctors that have stuck with us like glue. He began to teach us about compassion and perseverance and thankfulness and real faith — lessons through our nonverbal daughter that resound loud and clear. Certainly, there’s still heartache, but there’s more grace and strength to bear it. There is much struggle and work, but there is genuine joy in the journey. There is acceptance, but there is also expectation that God’s got a bigger, better plan than we can imagine. That He is going to boggle our minds through this little girl!

He already has. 

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Helpful sites:
Autism Speaks ASD Video Glossary
Assessment test for PDD (pervasive developmental disorder)
Autism Speaks First 100 Day Kit

Dresspectations

Rhema went through a phase in which she was extremely sensitive to various types of clothing. She loathed socks and shoes, shirt sleeves had to be pushed up, and pants with buttons or zippers or anything “heavy” were not tolerated. No hard or scratchy materials, no tags. 

For her, dresses were absolutely out of the question.

But in my mind, she had to wear a dress to church on Sunday. That was my thinking, anyway. From the moment the ultrasound technician declared she was a girl, my mother and sisters had stocked the closet full of beautiful, elegant dresses. Nowadays, people do not really get dressed up for church, but I grew up in a culture where you always wore your Sunday best to service. It was not about vanity; it was about revering God and trying to give God your best. Even though church happened once a week, every Sunday service qualified as a special occasion.

O.k., so it was about vanity. For me for Rhema, at least. She’s the granddaughter of a pastor, for heaven’s sake. She may hurdle the pews, color her face with an ink pen, spill juice, stick her head in a wind tunnel and mess her hair Medusa style, but she was going to do it in a fancy dress, dagnabbit!!!

And so the battle would rage on Sunday mornings. I would launch a surreptitious attack:  

1) Give her a popsicle

2) Ever so casually slip on a tagless, cotton T-shirt

3) Quickly come from behind and throw her dress over top, hoping the fabric would not offend.

It would offend. She was like a pig in a dress, contorting, thrashing, tantrumming and nearly ripping the dress off, popping buttons, tearing lace. Then we would repeat the steps, she and I. If I managed to get her buckled in her carseat with a dress on, she would disrobe as soon as she was free.

Finally, one morning during Dress War, Brandon said quite simply, “Just let her wear pants.”

What????!!!!

The thought had never crossed my mind. He gave me a look that said, ‘It’s not the end of the world.’

We were already late for church and I was battle weary, so I finally waved the white flag of surrender.

I knew it was my pride.  Rhema was already so obviously different.  Her special needs made her different. Her diet made her different (she’s the only kid with GF pretzels while the others eat animal crackers). I didn’t want her to be the only girl without a dress on.  Especially when she had a closet full!

She was down to one or two pairs of “soft” pants that she actually kept on (sometimes). She always wore them to school, so they were worn and faded.

But for months she wore those same pathetic pants to church every week. One child at church always liked to point out that ‘Rhema wore that last Sunday.’

It sounds silly now, and it was.  But my mind was set on the way things should be.  So many of my expectations for my “perfect” family and my “perfect” kids seemed to be crushed, and this dress thing was something I was trying to hold on to like a stubborn child [thanks, Shanda!]. Truly, it was me who was done up on the outside, but undone on the inside.  “The LORD sees not as man sees. Man looks at the outward appearance, but the LORD looks at the heart.” 1 Sam 16:7

Looking back, I am now grateful that this is one of the small ways God had to humble me.  Of course, there have been other expectations for her life – our lives – that I have had to re-adjust (such as “typical” kidnergarten — that was a hard one for me).

But lately, my focus has shifted to see all the ways God goes beyond my expectations. Rhema is my shining example, and every day she makes me proud. More times than not, she manages to do something I think she’s not ready for, and she does it well. Just when I think I’ve got her figured out, she’ll surprise me with something new. 

At first, autism crushed my expectations. Funny thing is, now, my expectations are greater than ever before.

My soul, wait thou only upon God; for my expectation is from Him. Psalm 62:5

Rhema on Easter 2009. Check out those shoes!
Rhema on Easter 2009. Check out those shoes!

What I Didn’t Know

I did not know that it was useless to pretend it wasn’t there.
I secretly knew for many months that she was touched by autism. But I hoped that if no one noticed – that if we could “just make it to age 3” with no one saying the word out loud – that we would have somehow escaped its grip.

 

I did not know that some people never speak.
When she first started getting speech therapy I recall saying to my husband, “We should stop worrying so much! I mean, I remember kids in school who had trouble talking. They would get pulled out of the room to go to Speech class… but they turned out just fine. Everyone speaks eventually.”
But in fact, 8 in every 1000 men, women and children are unable to verbally express emotions, feelings and needs.

 

I did not know that it might not go away.
Soon after Rhema was diagnosed at the age of two, I attended a conference. During the break, a woman sitting next to me showed me a photo of her 11-year old daughter who had autism. I was confused and disheartened. What is she doing here? Why would she be at this conference? Is her 11-year old still affected? I had just assumed that my child would outgrow the diagnosis by age 3 or 4.

 

I did not know that three years later she would still seem to have no concept of holidays and birthdays and how that would sadden me. 

 

I did not know that there might be more than meets the eye when a child is melting down in a public place. And it just might not be a sign of a spoiled kid or bad parenting.

 

I did not know that “smart” people had children in special education classes.

 

I did not know that the standard definition of autism leaves so much out; that it is indeed pervasive. (But how could they include it all?) That a disorder that impairs a person’s ability to communicate can also mean feeding issues, sensory disorders, sleeping problems, behavioral and anxiety issues, learning disabilities, motor problems, seizure disorders.

 

I did not know that I was not exempt from suffering… and that one day I would be thankful I was not exempt.

 

I did not know how sweet it is to offer a sacrifice of praise and song of hope when your heart has been broken.

 

I did not know that “faith never looks so grand in summer weather as it does in winter.”

 

I did not know that God could truly give me beauty for ashes, strength for fear, the oil of joy for mourning, and peace for despair. (Isa. 61:3)

 

I did not know that I would be blessed to meet such extraordinary people as a result of my daughter’s disability – people that have enriched our lives and shown us the closest thing to the perfect love of Christ.

 

I did not know that throughout the daily struggles of mothering a child with special needs, I could truly look to God and His Word to provide grace for every moment, to sustain my soul and refresh my spirit.

 

I did not know I could be so brave.

 

I did not know that my husband and I could go so low, weather this continual storm, and still find a greater intimacy.

 

I did not know that God could speak through a child with no words. But He does. Everyday.

 

Thank you, Lord, for teaching me the things I did not know.