Mommy Mode

I recently reconnected with a dear friend from college (…my grudging thanks to Facebook). We were so goofy in school.

She came into town this weekend and spent a whole day with us.

My friend is beautiful, smart, single, extremely accomplished, currently working for a top law firm in Seattle.

When I picked her up from the airport, I asked her if she “wanted to go potty.” (She later told me that I asked her several times that day if she wanted to go potty).

At home, I gave her a Dora popsicle.

And I made her take a nap.

When we went out to eat, I, lost in conversation, unwrapped her straw and put it in her drink for her — just like I would do for any one of my kids.

 

Oh dear.

 

She, being such a good friend, laughed it off and said it felt nice to be “babied.”

When I told my sister about it, her response was: ‘You. have. serious. problems.’

Oh dear. (And I say ‘Oh dear’ now.)

I think somehow… somewhere along the way… I actually grew up and became a … mother.

Hi’s and Bye’s

“Communication is difficult without the grasp and execution of appropriate greetings and responses.”

 

Rhema’s after school team of therapists have introduced a greeting program. That is, Rhema is prompted to actually say hi or bye appropriately. Eye contact is preferred, but currently not required.

I am thrilled about the new program, but surprised at the emotions it has uncovered.

When Rhema was younger, she would not acknowledge others around her. A marching band in the living room might not elicit a response. Greetings were completely lost on her. Even today, unless you are a familiar face – with a goody perhaps – she will not “notice” if you have entered the room. 

I remember I would pick her up from the nursery with the other moms, and the children would squeal and yell their parents’ names. My child would not look up from the piece of string she was flapping.  Brandon and I went away for a weekend once, and I missed Rhema terribly.  When we returned, I was overjoyed to see her, but she seemed unfazed, indifferent – as if she could take or leave me.  Then there were the times when a therapist would ask her, “Where’s Mommy?” I would feel self-conscious and silly, hoping that she would by chance look in my direction.

I realize that with Rhema’s new greeting program, I still feel the pain of what I perceived as her rejection of me.

Today Mr. Tim (one of the best ABA therapists I have ever known) met us in the waiting room, ready to take Rhema back for her session.

“Say bye-bye to Mom, Rhema.”

“Bye bye, Rhema.” I sound cheerful, but I am raw and vulnerable.  I do a little wave and wait. And wait. And wait.

Mr. Tim prompts again.

“Say bye-bye to Mom, Rhema.”

Rhema does the wet noodle, dropping to the floor.

I begin to feel a little self-conscious, standing there, in front of the other moms in the waiting room. These mothers totally “get this.”  They understand. But I think that surely all of their children happily run to them at the end of a therapy visit and say “Hi, Mom!”

Mr. Tim stands Rhema to her feet, and I stoop in front of her.

She won’t look at me.

“Bye, bye. Rhema.”  I wave.

She begins to climb me. As if I am a rock wall.

Mr. Tim rights her again and gently tries to get her to look in my direction.

“Say bye-bye to Mom, Rhema.”

Oh Tim. It’s o.k. We can give up now. Time’s a-waistin’…

But Tim won’t give up.  He prompts her again.

Finally, she manages a “Buh buh buh.”

O.k. good enough. Thanks Tim. Thanks Rhema.

“Try again, buddy,” Tim coaxes.

Rhema turns her head back and forth. She is fidget queen. Clearly, she wants to break away from Tim’s grasp and run.  This is so hard for her.

“Try again, buddy.”

Finally, finally. It comes out. In her sweet angel whisper.

“Bye. bye.”

“Good job, Rhema!” And off they go, leaving Mom a tad emotional.

 

Brandon was laughing at me because I was trying to find “God greetings” in the Bible. Greetings are so important – anytime you study a foreign language some of the first words you learn are hola and adios, amigo.

I believe with all my heart that God longs to commune and communicate with us… that He does not hide His face… that we are never rejected… that He said “Hi” and started the conversation a long time ago.

But there seems to be no place in the Bible where God just sort of shows up with a ‘Hello’ or ’Yo’ or ‘Wazzup.’

Well, maybe there is a place. In Matthew 28, there is a hi and bye of sorts. After Jesus has risen from the grave, He greets His disciples, “All hail.” According to commentaries I’ve read, the word hail here means rejoice – ”a term of salutation connected with the word joy –  joy at his resurrection and at meeting them again.” 

So the one documented God-greeting I found in the Bible simply means… rejoice. How perfect. Every time my children greet me, I will try to remember the Lord’s simple salutation: Rejoice!  And I will rejoice. (Rhema’s ‘hi’ is certainly reason for joy, but I will also rejoice in the fact of a risen Savior!)

At the end of that chapter and book (Matt. 28), Jesus also says “Bye bye” (before his ascent to heaven).  The last part of His “Bye bye” is: 

“And surely, I am with you always, even unto the end of the world.”

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!

Mother Stuff

I remember the first time I dragged myself to a “support group meeting.”

I was a new special needs mom, and the whole night, I could not take my eyes off the other mothers.

 

Their hair was combed.

They seemed sane.

They were organized.

They were knowledgeable.

They were strong.

They were beautiful.

They could cry.

They could laugh.

They were still standing.

 

I remember thinking, “Oh.”

 Maybe…  just maybe… I can do this.

And that was a dose of hope and courage and purpose I greatly needed.

 

So thankful I get to experience this fierce, protective, undying, unconditional, heart-soaring, heart-wrenching, give-your-life-for, crazy mother love.

We know, there is nothing like it. 

And to think that God, who is Love, created this kind of love. (1 John 4:7-12)

And to think that He loves my girls even more than I do (Luke 11:13). Boggles the mind.

 

As I sit in the waiting area of Futures Behavior Therapy Center, I meet all kinds of mothers. Younger, older, tired, brave, moms of multiples, mom beating breast cancer, mom with a mission. Our children so different and so alike; they span the spectrum. Experience links us.

I am particularly honored to be a part of this club.

 

Autism File Magazine

Running In Circles

We had a beautiful, sunny afternoon free last week so I drove the girls over to the playground. 

The playground was a little crowded.

This was the first time we’d been to one since last fall. I always get a little nervous when I’m on my own because it is difficult keeping up with both girls. Brandon, in fact, does not like me to take them to parks by myself. What if Rhema runs away or darts into the street? What if you can’t give Hope the attention she needs?

Here we go, I thought.

Rhema headed straight into the middle of the playground. I saw her look over to the swings, which were all occupied by older girls. Instantly, she dropped to the ground and began crying in a high-pitched voice.

I knelt beside her and spoke to her softly.

Finally, she stood to her feet. She looked around quickly, frantically. She ran to the edge of the playground, wailing all the way. Then she began to run in circles around the playground.  As she ran, she calmed herself, focusing on her hands bouncing in the air.

The whole time we were there, that’s what she did. Run in circles around the playground. Kids jumped, climbed, squealed and played hide and seek. And Rhema ran in circles, never able to come in and enjoy the swings and slides.

A few times I tried to interrupt her, re-direct her. I grabbed her hands, I tickled her, tried to coax her over to a climbing structure. But she brushed me off and stuck to the predictable – running laps around the playground.

She’s done this before. Once, before we knew her diagnosis, my sister, mother and I took her to a wading pool. “She’ll LOVE it. She loves the water,” my mother had said. But somehow it was too overwhelming and Rhema never put toe to water. Instead, she ran in circles.

Oh, my girl. How much of her life is spent on the periphery. As I suspect for many children with special needs, she seems so close yet so far away. She wants to take part, she wants to play and have fun. I know it.

But some days, it’s just beyond her reach. It’s just too much. It’s just too hard.

But she’ll keep trying, she’ll keep coming back.

Before long she will come in from the edges, she’ll play and jump and climb and swing and soar. 

She’ll get it.

And again I will be inspired by the strength, resilience and resourcefulness I see in these children to make it in the world.

Autistic Leading

When she wants something she comes and takes me by the hand and leads me into the kitchen. Then she thrusts my hand toward the freezer. That’s her way of telling me that she wants a popsicle. Or, if she wants to go outside, she leads me to the door and pushes my hand toward the door knob. Every day, she does this. Many, many times a day.

It’s called autistic leading, and it’s regarded as a “primitive” form of communication.

Sometimes autistic leading gets on my nerves. Because I’m usually busy blogging doing something important when my hand is suddenly hijacked and I’m dragged to the freezer. Because she is so very persistent, and even though I’ve already tried to explain that, no, you cannot have another popsicle because you have not eaten dinner, she insists on dragging me to the freezer over and over again. Because sometimes I wish for the life of me that she would “just use words!”

Bad mommy confession time. In moments of frustration, there have been times when I have removed my hand. That is, I stick my hand in my pocket or behind my back… I do not allow her to take my hand and lead me to the refrigerator. When I have done this, her ability to get what she wants – her primary means of communicating what she needs – is removed. It’s almost as if I have rejected her, cut her off. She crumbles to the floor in frustration, and she cries. It breaks my heart every time.

So I let her lead me.

Even if when we get where we’re going the answer will still be ‘no’. At least I know she was able to communicate her wishes.

It makes me wonder how often I have removed my hand – cut off communication – when the Father wants to lead. The well-known Psalm 23 says “He leads me beside quiet waters, he restores my soul.” How often do I miss out on those quiet waters because I refuse to follow, because I will not be led? Communing with God and taking His lead is not so complicated really. Maybe for starters, it just means we unclinch our fist and hold out our hand.

Know That I Am With You

My husband recently received official orders to deploy to Iraq this August. (He was originally scheduled to leave in May, but now we get to spend the summer together before he departs.)

I have been thinking about how to prepare our daughters for the 15-month separation. Although he has been to Iraq before, this is our first go at it with two children at home. (During his first deployment, Rhema was born.)

I have a slew of articles that detail strategies for helping young children cope with deployments. All of these articles naturally assume that the child has the ability to speak and understand language.

Hope will miss her daddy sorely, but I know she will be o.k.

It’s Rhema I wonder and worry about. How do I explain? Do I even try to explain? She will be aware of his absence, but she won’t understand where or why he’s gone. It’s typical for children to display more behavior problems when a parent is deployed. Will this be the case for Rhema (times ten)?

Brandon and I work hard to connect with Rhema when she is in the same room. It takes significant time and effort. How will Brandon maintain a connection when he is several time zones away? She does not do phones. When she was a baby, Brandon sent a few tapes. He used an old tape recorder and read her Bible stories and told her all about Iraq. I suppose we’ll try that this time around. Even if she does not understand what is being said, at least she’ll hear his voice. We’ll try video as well, but I don’t know if it will hold her attention.

I read an article about an airman who organized a 5K run during Autism Awareness month while he was deployed to Iraq. He had a young son at home with autism. He was able to raise thousands of dollars as soldiers, sailors, airmen and marines in Iraq participated in the run. The father’s motivation for the event:

“If I cannot be with him to support him and participate in his therapy, I want him to know, one day when he can understand, that wherever I am and whatever I am doing, my heart and soul are with him.”

Naturally, that statement gets to me, and it reminds me of a love story. One in which the Man loves so much that He lays down His life. He breaks down the wall of separation. His ministry is reconciliation. His very name is Emmanuel. God with us.

The Father says to his child: It may seem like I’m far away, but I have not left you. You may not understand it all right now, but no matter what you may face, I am with you! Not for a moment have you left my heart, my thoughts, my love.

“Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.” Romans 8:35; 38-39

“…And surely I am with you always, to the very end of the age.” Matt 28:20

“Never will I leave you; never will I forsake you.” Heb 13:5

 

And so, we take heart!

No Cheap Blessings

Several weeks ago I got an e-mail from an old friend. He was telling me about his 9 year-old daughter Allison, who was troubled by a belief that her teacher didn’t like her. She explained to him that her teacher (who gives stars for positive behavior) used to give her tons of stars. Allison was one of the leaders on the star board. But then all of a sudden the stars stopped coming for Allison, while other kids continued to get lots of stars. Some kids had gotten 15 or 20 stars since she last got a star. In her dry spell, she went from near the top to absolute bottom. When pressed, she confessed that okay, “there was this one ne’erdowell kid who had fewer stars than her, but among the human kids, she was dead last.”

Allison’s father suggested that they pray that she would find favor in her teacher’s eyes. So they did. The next day he asked her, “Did you get a star today?” She said that she did (her first star in like 10 days). When he cheered, she protested, “But EVERYONE got a star today. It was a star for everyone because we were good.” He said, “I understand what you’re saying. But we prayed to God for Him to help you to find favor in the teacher’s eyes. If she truly didn’t like you then she would have given everyone BUT YOU a star. Right?” (She begrudgingly said, “Yes.”) Her father continued, “Don’t cheapen God’s blessing. He answered your prayer today.”

Allison went on to get stars every day for a week, and she pulled out of last place. She came home one day and exclaimed, “Daddy, this is DEFINITELY God!”

What’s so special about this little girl and endearing about this story is that this occurred during the week when Allison’s mother received a diagnosis of breast cancer. And yet, Allison can still recognize the blessings in her life (like stars) and can proclaim with a knowing in her heart, “This is definitely God” as He moves on her behalf.

 

Why did I share that little story?

Lately, I’ve been troubled with something JoyMama illuminated recently. Elvis sightings. It’s a one-time utterance or action that comes surprisingly out of nowhere, and then disappears again. Or it’s something new and exciting that Rhema will do for a time, such as say hi or yeah, and then without warning she will seemingly lose the skill.

I hesitate to tell friends about Rhema’s progress sometimes because they do not understand the nature of these things. When I tell someone, she said Hi, they are so happy for us all assuming that the “language explosion” has finally come.

(I realize that this is not just something that affects kids with classic autism. My friend has a son with high functioning autism, and she told me that on a recent vacation they were absolutely amazed because he acted so typical. For a couple days, she and her husband caught a glimpse of “typical” in their son.)

Although we have come to expect that these things will go away, these glimpses – the Elvis sightings-  leave us a little baffled, heartbroken and discouraged each time. Perhaps the hardest part is knowing that we won’t know when the last time will be that we will hear the word or see the action (- some other form of communication such as signing or consistent eye contact). We live waiting for the other shoe to drop.

Allison’s story about the stars was well-timed for me. First, I think I need to learn the same lesson: don’t cheapen God’s blessing. Like streams in the desert, God has allowed me rare insight into my daughter through these Elvis sightings. I’m learning to be thankful for them, as they are, pure and simple. Thankful that each “Elvis sighting” is just a little dollop of encouragement to keep pressing on. Thankful that the gains and setbacks keep us humble, keep us from taking anything for granted. Thankful that we know how to cherish the little things.

Again, I’m thankful for this space. That I can write about the unexpected, out-of-the-blue, blow-your-mind gains. And that there are friends who will cheer each step forward (even if there are two steps back). Friends who help us celebrate each and every little victorious moment, even if it is just for a moment.

I want to change my own demeanor and language starting right here, right now.

Instead of telling you,

“I think Rhema’s been saying “Mama” today (she’s home sick), but I know it’s not going to last…”

I’m saying, “Rhema’s been calling me Mama today…

This is DEFINITELY God!”

Inextricable

Recently the school called to say that she was doing something really strange with her hand. She held it rigid against her chest, wouldn’t use it. It seemed like she’d lost some mobility. They wanted to know, ‘Is this a pre-cursor to a seizure?’

But I didn’t know.

I drove the 45 minutes to the school to pick her up early. A school nurse came out to talk to me. She believed Rhema was having absence seizures. Rhema had been “out of it” all week. ‘Is this the result of medication changes? Is she coming down with something? Is this just a bad week?’ Yes? No? Maybe all of those things? Maybe none of those things?

I don’t know.

She is constantly moving, and she needs constant supervision. I’ve had conversations with God about making me younger, stronger. I’ve suggested that He grow me an extra, bionic arm.

I had to laugh at a recent IEP meeting when someone commented that my almost 5-year old is still treating people as if they are jungle gyms. She’ll climb right up your legs and do a backflip. And she’ll swing from the shower curtain rods. And eat soap. And paint herself in butter. Where will I find the energy to keep up with this child?

I don’t know.

I’m not creative. I’m not organized. I’m not a “natural” teacher.

What God was thinking?

 

After the IEP meeting, my head was swimming with I don’t know’s. With everything that she needs to learn, are these the right goals for right now? Are these goals going to stretch her, challenge her? Are they realistic?

There was a stack of annual consent forms to sign (not the IEP). I quickly flipped through them and signed my name with an unsteady hand as uncertainty wreaked havoc in my mind.

Someone in the room looked up. “Hi Rhema.”

I turned around in my chair.

There was my girl…

Standing in the doorway in her purple coat and pink backpack. I had not seen her yet. I had been escorted into the meeting before I had the chance to see her in her classroom.

“Hi Rhema!”

Not looking at me, she smiled. But the smile was for me. She came in and sat down in the chair next to me. Her eyes were averted, but the soft smile never left her face. Cindy Crawford mole above her lip. Exquisite.

All my love.

I reached over and held her hand…

So many things I don’t know.

But then there are moments when I just know with everything in me that I was always meant to be her mommy. And she was always meant to be my girl.

 

Just like this.

 

 

Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. Phil 1:6

Is It Enough?

The final scene in the movie Schindler’s List is one I will never forget. The war has come to an end, the factory workers are finally free, and Oskar Schindler is preparing to leave. Instead of feeling happy, he is troubled with guilt. In spite of all he has achieved he realizes that maybe he could have done even more. (It’s such a moving scene. To view, click here.)

Schindler: I could have got more out. I could have got more. I don’t know. If I’d just… I could have got more.
Stern: Oskar, there are eleven hundred people who are alive because of you. Look at them.
Schindler: If I’d made more money… I threw away so much money. You have no idea. If I’d just…
Stern: There will be generations because of what you did.
Schindler: I didn’t do enough!
Stern: You did so much.

Even though only two lives are involved – that of my darling girls – sometimes I feel like Schindler.

For Rhema, I sometimes worry that even with all of the hard work we’ve done: the treatments, therapies and interventions, the meetings, the fundraisers, the prayers – that somehow we’re still not doing enough. I recently read an article in the New York Times in which an autism mother says, “If not for speech therapy five or more days a week for six years he would not have the limited language skills he now has, which enable him to speak in short sentences, make his needs known…” And my initial thought was Oh no. Maybe Rhema’s not getting enough speech therapy. Maybe that’s why she’s not talking! (Later on when I thought about it, I remembered that she actually gets speech therapy six days a week. So chill, girl).

A mom of a teenaged boy at Rhema’s school told me she feels free from the guilt imposed by Bettelheim’s ridiculous “refrigerator mother” theory, but there’s still this incredible pressure on mothers to save our children. (She cited a certain US magazine cover from October 2008.) She said that if the child does not make huge gains, there’s this notion that the mother didn’t do enough.

If you’re like me, time and money (as in ‘We’ve run out of time in the day’ and ‘We’ve run out of money’) eventually stop you from doing every therapy out there, but you still wonder if XYZ therapy or JKLMONOP therapy might help your child. At the end of every successful IEP meeting I walk out full of anticipation, yet always hoping, wondering in the back of mind if it’s enough.

For me, it all has to come down to trust. Do I really trust God with my child? Can I do my best and trust him to do the rest, to “fulfill His purpose for her” (Ps. 138:8). Can I trade in the blame, guilt and self-doubt for the promises: “But my God shall supply all my needs.” (Phil 4.19), “lt is better to trust in the Lord, than to put confidence in man.” (Psalm 118:8), “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.” (Phil 4:6)

I know for certain that the interventions in which we have invested for Rhema are beneficial and important. We will continue. But I’m learning not to be driven by guilt or fear to just do more. My friend Carrie is such a good example for me. She gives her daughter her best, she gets her daughter what she needs, and she does it all without getting wrapped around the axle. She relies on God in gracious simplicity, knowing it’s not in her power but in His strength.

Is not God enough for thy need, or is His all-sufficiency too narrow for thy wants? Is His heart faint? Is His arm weary? If so, seek another God; but if He be infinite, omnipotent, faithful, true, and all-wise, why gaddest thou abroad so much to seek another confidence? Why dost thou rake the earth to find another foundation, when this is strong enough to bear all the weight which thou canst ever build thereon? Wait thou only upon God, and let thine expectation be from Him. —Charles Spurgeon, Morning and Evening

Will all we do for our kids ever be enough? Maybe not.

But guess what? God motions me to lean in for a whisper.

“It’s O.K…

Because she’s mine.

I will take care of her.”