Sayin’ it

“I want you to know, brothers, that what has happened to me has really served to advance the gospel…”

We’ve been reading Paul’s letter to the Philippians in my Bible Study.

Paul was specially called by God to preach the gospel. And yet he constantly found himself imprisoned; he spent roughly six years of his ministry as a prisoner. He was put to death in Rome after his last incarceration. Why would God do this, allow such confinement of the man he appointed to proclaim His Word?

“This is my gospel, for which I am suffering even to the point of being chained like a criminal. But God’s word is not chained.” (2 Tim 2:8)

When Rhema was born we, like most new parents, sent out a birth announcement. Brandon explained the meaning of her name:

Rhema (pronounced ray-mah) is the Greek word God uses to describe the living, soul-stirring communication He uses to reveal Truth to individuals.  It is the “rhema” that draws each person to salvation.  Romans 10:8-9, 17 states, “The word [rhema] is near you; it is in your mouth and in your heart, that is, the word [rhema] of faith we are proclaiming:  That if you confess with your mouth, ‘Jesus is Lord,’ and believe in your heart that God raised him from the dead, you will be saved…consequently, faith comes by hearing the message, and the message is heard through the word [rhema] of Christ.”  It is our prayer that Rhema will be used as God’s instrument to communicate the Truth of God’s Word to many souls who need to hear the message of hope and forgiveness of sin through Jesus Christ.

We gave her a middle name after her great-great-grandmother who spent many years praying for all of her children and grandchildren to come to faith. We hoped Rhema would be a bold witness to everyone around her just as her great-great-grandmother had been.

It’s funny looking back. We had such big plans for her (we still do). Before she was born we’d already envisioned who she would be and how things would go. Our purposes were good, just what we thought God would want our purposes for her to be. When she was diagnosed with autism and a seizure condition that assaults the speech and language centers of the brain – we felt duped, offended, disappointed that God would allow our good dreams to be crushed.

Over the years I’ve come to understand that God’s dreams for my children are far bigger than my own. Indeed I’ve seen that “what has happened to her really has served to advance the gospel.” Some have encouraged me, saying that I speak for her through this blog. Yes, I record the stories and share what God is teaching me through it all. But I believe that she speaks (and will speak in whatever form that may be – writing, pictures, etc.) for herself. God’s word is not chained by prison walls or epilepsy or autism.

Years ago I also saw myself serving and ministering in very specific ways. Since then my own failures have left me constantly battling feelings of guilt, unworthiness, and the whispers in my head that I’ve no right to speak. But I am strengthened by this fact: if God can spread His Word across continents and decades through a jailbird and speak Word through a girl without words, then He can still speak through bumbling me.

Even now Paul’s joy and courage embolden me, and Rhema always inspires.  So I say (if you are still reading at this point):

Jesus loves you. He takes away the pain of sin and death and gives Life. If you will trust him, He will meet you and say, “I have loved you with an everlasting love. I have swept away your sins like a cloud, I have scattered your offenses like the morning mist. Oh, return to me, for I have paid the price to set you free.” I am so thankful for grace, that we don’t have to be eloquent or deserving or even good to gain Christ, we just have to believe.

That’s gospel truth.

Chicken nugget love

“Help one another, is part of the religion of sisterhood.”
~Louisa May Alcott

.

I often write about how Hope is good sister to Rhema. I’ve shared stories about the things she has already sacrificed in her short life because of her sister’s autism.

Rarely do I highlight the ways Rhema is a blessing to Hope.

Sisterhood for my girls is very different from my own experiences with sisters. My sisters and I are very close, and there was a time I grieved that my daughters would not have that kind of relationship.

They exist in a silent camaraderie, their lives one long parallel play session. Their chairs are always side by side – at the dinner table, in the car. They take baths together. They give hugs (well, Hope hugs and Rhema tolerates). There is an honest togetherness about them.

But Rhema has never spontaneously said Hope’s name (she has trouble with the sounds). They’ve never played on the playground with each other or had a sleepover or attended a show together or shared in pretend play. They’ve never shared a real conversation with words.

Yet Hope has no doubt that Rhema loves her. It’s as certain as the morning. Since their love is not always expressed in typical ways, I’ve wondered how Hope is so sure.

It came to me at McDonald’s.

Hope has a long list of food allergies, including wheat, but over the years she’s developed a tolerance to McDonald’s chicken nuggets. If the breading from the nuggets is removed she can eat them without having a reaction. I used to spend too much time carefully de-breading Hope’s nuggets, until one day Rhema quietly took over the job. (She’d been paying attention all along).

For the past couple years, without fail, Rhema meticulously peels and nibbles off every little piece of skin from those nuggets. (Eight nuggets in total because there are 4 nuggets in a Happy Meal and they both get Happy Meals. Sometimes they get Mighty Kids Meals with 6 nuggets apiece, so that’s twelve nuggets total!) And then she tosses the chicken (can we call it that?) onto Hope’s plate. She never eats the whole nugget – she saves the chicken for Hope.

She even used to go so far as to dunk the nuggets into Hope’s ketchup for her. Rhema detests ketchup; she knows Hope loves it. But Hope actually prefers to dunk her half-chewed, skinless nuggets into the ketchup herself. So Rhema has learned to back off and just throw the nuggets onto her plate.  

We’ve all agreed that Rhema is the fastest and best chicken-nugget-breading-chewer-offer in the world. Makes me so proud.

Rhema teaches Hope in ways that Hope is not even fully aware of yet. She never shows jealousy, she’s always willing to share, she’s observant and patient, steady as a rock. She makes the people in her life better for knowing her. She is a good sister, a faithful companion, a gift to Hope.

I wish everyone in this life a sister-friend who will eat the skin off your nuggets if you need her to.

These Words…

‘These words are spirit and life…’ (John 6:63)

I have long loved a tradition in our church of presenting Bibles to second graders. Each Bible has the child’s name on it, and it’s signed by the pastor. It’s a rite of passage, many of these children receiving their very own Bible for the first time. As the children stand before the congregation I believe they get the message that the entire church is supporting and encouraging them on their journey of faith.

Several weeks ago we received an invitation via e-mail for Rhema to participate in the upcoming Bible presentations. I stared at the e-mail suspiciously for a good ten minutes not knowing what to do. For a moment, I honestly thought I’d received the e-mail in error. I’d forgotten that Rhema would be a second grader now if she had been in a typical school setting. And it never occurred to me that she could or would ever be a part of the church ceremony.

For days I hemmed and hawed, rehearsing the can’ts and won’ts in my mind. She won’t be able to stand still. She can’t even sit in the sanctuary for 10 minutes. She won’t understand what’s going on. She can’t even read. Isn’t the whole point of this to entrust Bibles to children who can read and understand?

Finally, I mentioned it to Brandon. “Do we want Rhema to participate?”

“Of course!”

“Oh.”

Then I knew. Of course. Of course she would go to the front of the church and accept her Bible just like the others. It would be different for her, yes, but meaningful still. Her Maker, limitless, His imagination and purposes so much bigger than mine.

And this is what I’ve been praying for and talking about for years – to see a more inclusive Church, one that ministers to, embraces and celebrates people with special needs. I’m so thankful for the church communities of which my family is a part.

A Bible for Rhema. Who can say if she’s listening or understanding? Nevertheless, we’ll read it to her. While she’s running and spinning around the room. We’ll pray it over her as we tuck her in at night. We’ll write it out and post it on her door. We’ll say it to her in moments of discouragement and moments of triumph. Because no other word has power like this Word, to teach, heal, encourage, save. Because the word “rhema” means God’s Word spoken, revealed. Because words will come and words will go, but the Word of the Lord stands forever.

As it happens, I was out of town the day of the ceremony. But father, sister and grandmother were  there. Brandon walked her to the front and sat with her on the front pew while the others stood and the Pastor said a few words. And then, at just the right time, Rhema received her Bible, the most important book she’ll ever hold.

The name

 

I’ve been studying Abram in the book of Genesis.

Abram. The name means exalted father, which once seemed like a cruel joke. Because he was not a father at all.

It was his heart’s desire to have a child, an heir.

And at the ripe old age of 99, God made a covenant with him and said He’d make him a father of many nations. His descendants would be as numerous as the stars in the heavens. He changed his name from Abram to Abraham. “-ham” means “many” or “multitude.” Thus Abraham = father of many nations. The name was given to him before his son Isaac was born. But Abraham, against all hope believed in hope. His name was a promise.  

.

Rhema. The name means spoken word, which once seemed like a cruel joke. Because she has autism and LKS, two conditions that make it very difficult for her to speak. At 6.5, she is considered pre-verbal. But like Abraham, I’m believing in the God of hope. Her name is a promise.

Is there something you’ve long prayed for, waited for?

.

After some discouragement over loss, it’s good to see the gains.  

And I had to share… 

her daily list of words (prompted and spontaneous) from school:

(Her wonderful teachers had to use both sides of the paper!)

.

I’ve started calling her Rhemaham.

Girl of many spoken words.

Green

“Rhema, want pop?” I ask.

“Pop. Pop!” she says.

We’ve been doing this for forever, it seems. It was time to change it up. Just for kicks, I held two Mighty Mini popsicles in front of her, one was orange and one was green, and I asked,

“Rhema, what color do you want?”

Without missing a beat, she replied,

“Gwee! Gwee!”

Omigoshomigoshomigosh! Rhema wants green! She knows her colors. I can’t believe it!!!

I grabbed her and kissed her. I did the happy dance and couldn’t wait to tell her teachers and therapists. She’s learned her colors! I was so excited that when she finished the popsicle, I got out two more. One red, one yellow.

“Rhema, what color???”

“Gwee! Gwee!”

(Insert record scratch.)

Ok, hold on, kid. Let’s try again. I waved the red and yellow popsicles in front of her eyes.

“Rhema, what color?”

“Gwee! Gwee!”

I got out two more popsicles, this time orange and purple.

“Rhema, what color?”

“Gwee! Gwee!”

“Is… is that your final answer???”

She lunged for a popsicle, and with that my green balloon burst and made a whining hiss as it deflated. She’s 6.5 years old. You’ve been working on this stuff almost every day for 5 years, and she still doesn’t know her colors, shapes, letters, numbers. You’re toast, you’re nothing but green, moldy toast.

I gave her all of the popsicles and walked away.

Later when her therapist T came to the house, I watched her work with Rhema on a coloring activity. T has often said Rhema knows so much more than she’s able to show us. T, like me, simply believes that Rhema is brilliant.

“Do you think she knows her colors, T? Sometimes I’m sure she does. But it’s so hard to know what she knows. Maybe she gets a certain word or idea stuck in her head and it’s hard to get past that. Maybe she’s trying to say one thing and thinking another?  What do you think? Does she know her colors?”

T said thoughtfully, “One thing is for sure. She’s getting there.”

I thought back to a year ago when a doctor fired simple questions at Rhema that she could not answer. And he asked us, ‘what question does she answer?’ And I had to say, “Nothing.”

Well, now, look at my girl. She can listen to a question, “What color?” And she can answer it. With a color, an appropriate response!!! My mind is racing with the possibilities of the questions she’ll learn to answer, “What’s your name?”, “How old are you?”, “What is the sum of all the positive integers?”, “What is Shakespeake’s favorite breakfast?” (The answer to the last one is Green Eggs and Hamlet. Get it?)

Oh, how far she has come. How could I forget to be thankful? Thank you, Lord!

Yes, she’s getting there. 

.

Airports, autism, anarchy

How cool moms like Angelina, Heidi and Victoria do it. I look EXACTLY like this when I travel:

 

.

I once tried to pitch the good Lord an idea. It went like this:

Dear God, I was really impressed with the breastfeeding thing. Love the supply and demand idea – the more you nurse, the more milk you produce. And there’s the weaning process – during which the body actually secretes a hormone that sends a signal to the brain that the milk isn’t needed and milk production gradually shuts down. Genius! God, I propose that mothers of two or more young children and/or mothers of children with special needs grow an extra arm! With a hand attached.  It can grow right out of the elbow. When the kid(s) get older and the extra arm isn’t needed you can treat it much like the weaning process. The extra arm can just wither up and fall off the elbow. Amen.

Brilliant idea if I do say so myself. And Monday at the airport is my case in point.

I had a backpack, a carry-on suitcase and a booster seat. If I put the backpack on and balanced the booster seat on the suitcase that left me one free hand to hold on to Rhema. “It could work,” I said to my brother-in-law, Joel, as he dropped us off at the airport.

Rhema is not fearful of new situations like some kids on the spectrum. She doesn’t always know where she’s going or why she’s going, she just knows that she must. get. there. So it was at the airport.  Me, with the luggage in one hand while holding on to Rhema for dear life as she sprinted up and down the escalators. Escalators are on her obsession list and Logan Airport was paradise, she was bent on riding every single one.

Joel went with us as far as he could – to the security check point. The poor man (so dear to me) looked like he was dropping us off at the edge of Hades. I gave him a quick, brave smile and nodded goodbye. I had our boarding passes out, but my ID was in my wallet in my purse in a pouch in the backpack on my back. I could slide said backpack off my back onto the floor and even stoop down while holding the carry on suitcase and the carseat and Rhema-trying-to-escape all with my pinky finger. But to open said backpack and fish out my purse and then my wallet and then my ID… well, that would take two hands.

At which point Rhema broke free and took off running like she was late for a popsicle handout. She slammed into a metal signpost and cut her ear, but she barely slowed down. I had to leave all of our stuff in the line, run and catch her and bring her back. She got away from me twice.

Try as I might, I could not manage to get my shoes off, her shoes off, the laptop out of the backpack and into one of those trays, and the carseat and the carry-on luggage onto the belt and get us both through security. I’d told one of the security dudes that Rhema had autism, but no one was helping us.

Then Joel was at my side.

“I got a pass. I can go with you to the gate.” Oh thank you, BRO!

A woman in line who had witnessed the whole ordeal was very perturbed. She said to Rhema in a huff,

“You need to learn some discipline. You need to learn to listen to your parents!”

My nerves were already frayed.  “She has autism,” I informed her as Rhema yanked me away.

By the time we got to the gate I had to check the suitcase and the carseat. I had wanted to avoid going through baggage claim (for obvious reasons), but there was no way I could handle it all. I should have known, should have planned better. But I just thought/hoped that she would be calmer this time (she’s flown before).

On the plane our struggles continued. It was a ‘full flight’, and Rhema kicked the living daylights out of the seat in front of her. She slid the window shade up and down, up and down… and then the tray table in front of her, up and down, up and down. The entire flight. (When the flight attendant calmly explained to her that all tray tables and seatbacks had to be stowed in their upright and locked positions for takeoff and landing, Rhema was unmoved.)

For good measure, she dumped her apple juice in my lap.

As the plane descended I wondered which was a more frightening prospect: the plane blowing up or Rhema and I trying to get through baggage claim.

Of course we couldn’t stand there and wait for our luggage like “normal people.” Of course we had to run up and down escalators, during which Rhema scraped the back of her leg. Of course we were the last two souls at the baggage claim area late at night with no suitcase or carseat in sight. Rhema was at the end of her rope, and I could not make her be still or sit down. She fought me. She kicked me. She pushed me.

I had to go potty, I was famished, I was weary in body and spirit. And then she got up and ran toward a group of soldiers. She had been running all afternoon, not seeming to see anything or anyone around her. But she saw soldiers in desert fatigues and ran to them. Is she looking for her Daddy? Is that what she thinks this is all about? I will not cry, I will not cry.

After we finally found our luggage, we went to the restroom. Now normally I never go to the bathroom (myself) when Rhema’s with me. Too risky. But this time I couldn’t hold it. So while I sat on the germ-infested potty-chair, I held Rhema’s hand and begged her to ‘stay with me.’ But my darling child managed to undo the lock on the stall door. The door bust open, and she bolted… with me in mid-stream. Now, I ask you, what’s a girl to do? This girl kicked the door shut, finished her business and hoped for the best.

Thankfully, I found Rhema drinking soapy water out of the sink.

I won’t bother to mention all of the gory details. Like the fact that we had to wait 20 minutes for the shuttle bus for the rental car to come. (Rhema has a waiting ABA program at school – she’s up to a whopping 3 seconds. Do you know how many seconds are in 20 minutes?). Or that I tried to feed her some rice while we waited outside for the shuttle… and she spilled it… and tried to eat pieces of rice off the pavement like she was starving… and burst into tears when I stopped her. Or how one of the businessmen observed that she was ‘quite a handful.’ Or that she tried to climb into the shuttle bus driver’s lap while he was driving.

When we finally stumbled into our hotel room at 11 pm, I had a message from my husband that simply said Ps. 34: 17-18.

“The righteous cry out, and the LORD hears them;
       he delivers them from all their troubles.

 The LORD is close to the brokenhearted
       and saves those who are crushed in spirit.”

It was late, but I pulled up Kari Jobe’s My Beloved on the iPod, gathered my girl in my arms.

And we danced.

This dream does not tarry

“For me writing has always felt like praying…”
~Marilynne Robinson, Gilead

.

A couple weeks ago I blogged about Rhema learning to trace the letter “R”. I wrote about Heather, her OT, believing in her and the dream she had that Rhema would one day write her name independently. I believed with all my heart that that “one day” would come, but I knew it would be in the far-distant future. I settled in for the long haul (-standard procedure where Rhema’s concerned), happy to have a reason to dream again.

 .

So I was totally not ready for a miracle when I picked Rhema up from school.

Jenny, one of her teachers met me at the door.

“I don’t know if you’ve gotten an e-mail yet. But you’re going to receive a video we recorded.” She paused. “Rhema traced her entire name independently today.”

I stared at her, confused, and my heart started pounding.

She must be mistaken. Rhema is still just learning the R, and that took months!

Maybe I heard her wrong.

Or maybe I heard her right.

But, oh, don’t make me hope… because in this moment I want nothing more than this.

She was wiping away tears, and wonder and gratitude filled me up and began leaking from my eyes.

“Come back to the classroom. They’re going to have her do it for you.”

I cried. I did. Right there in front of people. Nose running and everything. 

. 

There’s a song that our old youth choir used to sing based on Habakuk 2:1-4.

“Write the vision, and make it plain upon tables, that he may run that readeth it.”

I’ve always loved the phrase “write the vision”, and even dared to hope that blogging might be something like that. The writing out of faith like a prayer, recording the good, hard lessons, waiting, and then watching Him give what we don’t deserve and do “immeasurably more than all we ask or imagine.” Thank you, Lord.

.

Some may watch the video clip of Rhema tracing her name and think it insignificant. They won’t know the hours and hours it took to get her there, and that some said it couldn’t be done. They won’t know the happy tears her teachers and I shed as we watched her trace with no physical prompts at all. They might not even notice that her pencil grip is still immature and her E needs a lot of work. They won’t realize that we still have a long way to go before she can write (instead of trace) independently, but that she just took one super-sized leap toward that goal.

They won’t understand how my girl wrote the vision, made it plain.

And gave us a little more hope to run on.

.

Our summer with a honey bee

This past spring, my sis and I took the girls to a park. It was a gorgeous day after a few days of rain, and Rhema was ready to run free. Before I could stop her she tore across an open field. The ground was still wet and she splashed through mud with abandon. I watched for a few moments and then gathered my energy for the chase. In the far distance I could see two figures lying on a blanket, and Rhema was making a beeline for them. I took off running across the field, calling after Rhema in vain.

I knew I was not going to make it in time.

When I reached the couple on the blanket, they just sort of stared at me, dazed and confused. They seemed frozen by surprise. The man was lying on his stomach. And my silent, six-year old, muddy girl was straddling him, sitting on his back.

I half expected her to dig in her heels and say, “Giddy up.”

As I pried Rhema off the man’s back, I did not offer an explanation. Just a quick apology to the woman for… “interrupting.” Before either could say a word, Rhema took off, and I raced her back across the field.

Oh the looks on their faces! My sister and I laughed until our sides hurt.

.

Soon after that I got serious about finding someone to work as an aide for Rhema for the summer. We needed someone to just be with us. To go to the park or the zoo or the pool with us; to help keep Rhema engaged at home or in the backyard.

I interviewed a number of people for the job, and knew within seconds that Melissa was our girl. She had no experience working with a child with autism, but her compassion made up for her lack of knowledge, and she naturally seemed to know how to relate to Rhema. She quickly became a student of Rhema, observing her, making note of her patterns, asking me lots of questions. I told Melissa about Rhema’s tendency to bolt and wander, and her lack of a sense of danger.

“I need you to stick with her,” I said.

Has she ever. When Melissa is with us, Rhema never plays alone. If Rhema goes down the slide, Melissa goes down the slide with her. If Rhema jumps in a bouncy house, Melissa jumps in the bouncy house with her. At first I wondered how Rhema would handle the “intrusion”, having to constantly interact with someone outside of school. But it’s been great for her. And great for us. Instead of chasing Rhema, I’ve had the opportunity to carry on conversations with other mothers at birthday parties or give Hope more attention or just take a deep breath. We’ve been able to embark on many summer adventures because Melissa has been with us.

She’s dodged puke two out of three times, and she keeps coming back.

Once we picked her up on the way to the park. Our plan was to just get our feet wet on the beach, and Melissa was dressed to go out on a date later that evening. I was discussing snails with Hope when I looked up and saw Rhema hightailing it into the ocean. A moment later I watched Melissa recklessly plunge in after her. When she caught up to her, Rhema jumped in her arms and they both stumbled in the water. They emerged completely drenched. Ahh, love her, I thought. She sacrificed her date hair and outfit just for us.

Recently, after a long day at the pool, we dropped Melissa off at home. Hope, whose level of understanding never ceases to amaze me, said in her three-going-on-thirty way,

“Thanks Melissa. We couldn’t have done this without you.”

Yes. Thanks, Melissa, for a great summer. We couldn’t have done it without you!

Happy Birthday!

One Year Later: A Father and His Girls

One year ago, Brandon sat on the couch with Rhema before she left for school. He held her and explained that he was going away for a while. Rhema seemed completely oblivious – it was just another day. She had no idea that she would not see him for so long. Brandon was thinking ahead to when she would realize he was gone. He wanted her to know somehow that he had not left her.

When her school bus came, I let him take her out. I stayed back, not wanting to intrude on his goodbye to his girl. But I know he was praying that God would keep her safe. I heard the driver call out, “You’re in our prayers!”, and the bus pulled away.

I cannot pretend to know how difficult that goodbye was.

The night I went into labor with Rhema, I was alone in a bedroom in my parent’s house and I journaled my way through contractions. Brandon was deployed then to Iraq for a year, and I was concerned that he would miss out on key bonding moments with his firstborn. I wrote a prayer in my journal:

May she be the apple of her father’s eye. As he is apart from us, Lord, give him a supernatural, blessed connection to Rhema that will always be. Thank you, thank you, oh thank you my Lord for giving her to us.

Despite the frustrating barriers of autism, the lack of spoken language, and two years now of separation, God has honored my prayer. Rhema and her father have a uniquely special bond. Sometimes I think she understands the idea of father better than anyone simply because of who he is. He settles her, and in an unpredictable world that does not often make sense, she trusts him. If he is there to love her, she’ll be o.k.

They always just pick right back up where they left off – as if no time has passed between them. When he came home last May for two weeks of R & R, we met him at the train station. I let Hope run ahead to greet him while I stayed with Rhema in her carseat. Rhema was fiddling and fighting with her buckle, ready to bolt. For a moment she did not notice the hands trying to help her undo her buckle. But then she stopped, looked up and saw him. A wave of laughter overtook her; she threw her head back and giggled herself right into his arms.

Brandon's homecoming in 2005

Brandon's visit in May 2010

 

That morning a year ago, Hope and I watched Brandon load his bags into the car. He had already explained to her why he had to go away for a while – “To pre-tect us!” she would squeal enthusiastically. To us, Hope has always been like a prized exhibit in a museum. Too precious. A rare, irreplaceable gift. She brings us inexpressible joy, and when you’re away from her you feel like you’ve missed out on something. I don’t know how to go a day without her Hope-ness.

I didn’t know how my husband was going to manage a year without it.

When it was time to go, he said, “Give me a hug, Hope,” arms outstretched.

She came running, and as she wrapped her arms around his neck as tight as she could, she said,

“I’m giving you a big DINOSAUR hug, Daddy!”

And I watched the man hold her and weep. In over a decade of marriage I’d never seen a hooah-hooah-fly-helicopters-jump-out-of-airplanes-soldier cry like that.

This past year Hope had her first first day of school – lost her baby fat and grew tall – turned three – had asthma, swine flu and pneumonia – learned to write her name- learned to swim – turned into a princess and became a fashionista – prayed for her Daddy everyday.

This past year Rhema changed schools and medications-  turned six – learned to ride a bike – healed from lead poisoning – learned to say many new words – learned to trace the letters R and H – lost her first tooth – matured into a lovely young girl.

We cannot wait for the day when he comes home to stay.

B, I thought you might like to see how much your girls have grown up to this past year:

Writing dreams

I keep this little stamp around as a reminder… 

that anything is possible.

.

At an IEP meeting a year and a half ago, a member of Rhema’s team stated that she would be taught to use a stamp with her name on it.

It sounded great, but at the risk of sounding completely clueless I had to ask,

“What exactly is the purpose of teaching her to stamp?”

Someone explained that Rhema would probably never learn to write so she needed to learn to use a stamp with her name on it instead.

The meeting continued. More goals and strategies were discussed. But I couldn’t tell you what they were. I was still shell-shocked by the words “probably never learn to write.” Brandon and I had been so focused on trying to help Rhema communicate vocally – it had not occurred to us to think about writing. I just assumed that she would learn to do it in her own time just like everything else. I did not know that the possibility had been ruled out behind my back. She won’t be able to write? Really?

At some point I found my voice and brought up the stamp goal again. They assured me that they weren’t giving up on writing. It was just that her pre-writing imitation skills were not progressing as they’d hoped. With a stamp she could learn to label her papers and other items.

It felt like they were giving up to me. She was just five years old then – how could they already know that she wouldn’t write? But what did I know? I went home, licked my wounds, tried to re-adjust my expectations.

Fast forward to this year’s IEP meeting. Rhema is in a new school. Heather, the occupational therapist, presents some testing results and goes over Rhema’s OT goals. One of them is:

Rhema will trace her first name, using age appropriate lettering…

I am surprised. I feel unsteady as all of the emotions from the meeting at Rhema’s old school come back full force. Where did I put that dream? That she would write? I had long since packed it away in my suitcase of “Dreams Deferred” for my girl.

Heather has no way of knowing how much this IEP goal means to me.

There is much discussion over the goal, and a liaison from the school district challenges Heather about it several times. She says that she does not want us to have unrealistic goals on the IEP.

I feel the tension in the room. It seems to me that Heather’s professional reputation is on the line, and I think that she’ll back down or at least agree to adjust the benchmarks, lower the expectations.

But Heather is not intimidated. She calmy and confidently says,

“Rhema can do it.”

I keep my poised face on, but I’m all kinds of crying inside. Ready to bust out in a tearful rendition of “To dream the impossible dream” from Man of La Mancha.

Because this is it. This is what I’ve been hoping for, praying for. Because all Rhema needs is for people to believe in her and think big for her. (Her mama included.)

.

It’s been six months since that meeting, and Rhema is learning to trace the letter “R”. Today I observed Heather working with Rhema. She started off by prompting Rhema gently at the wrist. By the end of the session, Rhema was tracing the “R” independently!! It was amazing and thrilling to watch.

full prompt

no prompt

Heather told me she had a dream that she came to work one day and Rhema was independently writing her name. In the dream, she is so happy and excited that she calls another teacher over and they record it all on video.

“One day,” she says. “It will happen.”

“Yes. One day,” I say.

I have no doubt.

 .

And I keep a little, “retired” stamp around. To remind myself that anything is possible.

 

Rhema's "R", traced with no prompt!

 

Thanks for giving me back my dream, Heather.

.

.