It’s 2:30 am and she’s shrieking and running circles in her room. I sit up in bed, realizing that she’s been doing it for at least a half hour. Got to get there, I think as I groggily rush down the cold hallway, before she goes to the bathroom on the floor.
As I open the door, my eyes take a moment to adjust. But I already know the scene. The light is on. She has ripped all the blankets and sheets off her bed. A page from a coloring book, is torn into tiny pieces like confetti on the floor. She is unclothed, running wildly around the bed, lost, completely lost. And I’m too late. The floor is her toilet bowl.
This is the version of autism that grieves me. The version that still devastates me.
Will it always be like this?
In my disheartened, half-awake state, I clean her and the mess. Put her pajamas back on. Put the sheets back on. Put her back in bed. Turn out the light. I go through the motions, knowing that moments later, she will undo it all. There will be no sleep tonight.
*
It’s 10 am and I’m rushing to her school for an emergency meeting. God, give me the words. Let this be the right decision. I will tell them why we think it’s best for her to be transferred to another school. Such a hard decision. She’s attended this wonderful school for children with autism ever since she was three years old. We are indebted for life.
But it’s time for her to be in a place of great expectations.
I practice what I will say. “We underestimate her so often…”
My mind drifts back to just hours before when I looked upon her and saw nothing but a helplessly, hopelessly brain-injured child, hyper and isolated.
I falter.
And then feel the hand of God steady me. Catch my tear.
“I just know there is so much more. There’s more in there, in her. No, even more than we think! I just know it. We’ve only scratched the surface. She’s shown me there’s more.”
Please dear God, help us find the way to unlock what’s inside.
*
After the meeting I stop in her classroom. I see her before she sees me, and I love her all over again. And then, she tentatively gets up and comes over, laughing all the way. I stoop, and she, the giggling girl, tries to climb me. “Hi,” I say. “Hiiii,” she mimics in a high-pitched voice. It’s the first real greeting in a really long time, and I treasure it.
I doubted you for a moment, my girl. But I’ll never stop believing there’s more extraordinary for you.
“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us…” Eph. 3:20
How true, so much to unlock. May God lead you to the keys.
Oh honey – follow your gut. You know your girl. And she WILL fly.
I agree with Jess, follow the instincts the Lord has given you.
What they said. And hugs and prayers from me to boot.
You sound strong and sure, and the school will respect you for doing what’s best for your girl. Rock on!
Jeneil, My heart was led to a song by Kimberly and Alberto Rivera; it’s called “More” and is on their “The Longing” CD. I tried to find a clip of it to send you, but I couldn’t. If you want to e-mail me your address, I’ll send you a CD.
Love you,
K.
Try to get her into NECC. She sounds like she needs a very tight program and their toilet training program is wonderful too.
You know she is a sentient being. All therapy, special diets, hope and most of all love, slowly awaken her. With these kids, you have to battle low expectations. You know they understand and feel everything. They just can’t tell you. Plus, it is good to shake it up a little. New imput. Poo, in the night, alone is the worst. Been there, done that. Praying for you!
We had wild shrieky-giggles in the early morning today too (though not the rest of it). What phase is the moon in?
A place of great expectations — that sounds wonderful. SHE is wonderful. A great big hug and “Hiiii” to your sweet girl, and to you too.
Follow your gut – you know what is best. Keep those great expectations for your girl – she will rise to them. Big hugs.
Yes, yes, yes!
You are the best mama for Rhema. You know what she needs and you’re not afraid to get it for her.
Your strength gives us all strength.
love.
Isn’t it amazing the range of emotions we experience in any 24 hour period? Cling to the Truth.
thanks…
what more can I say? It’s the only word that sums up how I feel about your mothering love.
thanks.
peace~elaine
These aren’t random extraordinary moments, they are an unfolding, one petal at a time.
The highs and lows of parenting a child on the spectrum.
Dev thinks he deserves fresh sheets daily so he’s been up wiggling his worm out and peeing on the bed. I told him lookie here Mister Man this ain’t the Ritz!
You know what’s best for darling Rhema. If you feel she isn’t being sufficiently challenged then it’s time to move on.
You know what happens when our kids get bored and it’s not pretty.
xoxoxxoxox
Jenn
As an in-home ABA therapist…
Go you! I applaud you for knowing your child and taking the necessary steps! I am praying for you and all who come in contact with your precious girls! I wish I could give you a great big hug but I guess I’ll have to wait until we’re both “home.” Take care, my Sister. You inspire me.
- B
what roller coaster. You are so wise and strong. And add me to the chorus of “go you!”
How did the meeting go? Did they agree with you? Do you have a specific school in mind already picked out for her?
Natalie
hi natalie,
yes, we do have a great school picked out for rhema. we are hoping and praying that we will be able to transition her soon!
Beautiful — you know in your gut what is best for Rhema. And she will rise to the challenge.
(So sorry about the poo in the night. I was up scrubbing with you, friend.)
Oh, wow. The hard times sure are hard, but it’s just part of the picture. Hoping that your quest for more extraordinary comes to pass. Hugs.
That’s the scene of our son’s LKS over and over. It seems to have gotten under control….for the moment.
We too have a hard meeting for an IEP in 3 days. Hard because we have to face the SSN teacher and tell her we don’t believe she’s a good match for our son. She’s too firm, not flexible, not understanding for the strange combination that comes with LKS.
Hard because my hubs has to work and I have to find the strength alone…..
This has really touched me. I don’t want to sound corny, but I am so grateful to the blogging world to find others who share this life with us. She’s blessed to have you.
You are amazing and strong.
You know all sides of her
and love her the whole night long
You know the best is yet to come
And in the meantime
You’ll build her a stage
And in the meantime
You’ll feel some rage
And in the meantime
You’ll find her place to perform
You know the best is yet to come
You just need a little sleep
You just need to build some stairs
You just need to get some hugs
And you’ll find them everywhere.
xo
I have no idea what you go through on a daily basis, but just reading this little snippet makes me feel for you.
You sound like a great advocate for your daughter. I hope she blossoms and proves to the world that there really is “so much more” to her.
Never, EVER doubt your girl.
Trust me.
Hi there. I saw your comment on the blog “Running in Circles” and wanted to share a recent social story I blogged about: http://ifonlyihadsuperpowers.blogspot.com/2009/10/therapy-thursday-not-getting-chosen.html
As always, i am so deeply touched by your posts, your faith, your mothering, your writing, your soul.
Turn that corner darlin’… Never, ever accept anyone who might underestimate what Rhema is capable of..
It’s time! I’m praying. And I’m here if you need.
xo
You are living, loving proof that we parents are our children’s best advocates. I’ll be praying for Rhema’s successful transition!
Love.
There is sooo much more that we can see in Rhema. “We walk by faith and not by sight.” It helps to see it sometimes, and sometimes Rhema gives you just that; little bread crumbs of hope that will lead you to the miracle time after time.
I am praying for you, Neily and the girls. I will pray that this whole transition goes well for you and for Rhema and all the teachers and therapists involved. It’s all in God’s hands.
P.S. A day has not gone by that Mr. Nylis doesn’t loving ask for Rhema and “Dope”. I think he’s in love
There is sooo much more than we can see in Rhema. “We walk by faith and not by sight.” It helps to see it sometimes, and sometimes Rhema gives you just that; little bread crumbs of hope that will lead you to the miracle time after time.
I am praying for you, Neily and the girls. I will pray that this whole transition goes well for you and for Rhema and all the teachers and therapists involved. It’s all in God’s hands.
P.S. A day has not gone by that Mr. Nylis doesn’t loving ask for Rhema and “Dope”. I think he’s in love