Category Archives: Childhood Apraxia of Speech

what she said

She was not surprised to find me crying. After 9 years in this house, Rylie Joy knows her mamma cries at commercials and when she’s mad, when she’s hurt and when she’s laughing too hard to breathe. Basically, every day. I cry for world justice and shelter animals every day.

But this was a sad and silent cry- I had just learned that Ry’s friend had lost her dad over spring break. I was overcome with grief for the family’s loss, with anxiety for the sweet children at home, with thanksgiving for the teachers who showed up on a terrible day to stand with their student. For 800 reasons, the tears came.

And so, I explained to Rylie that I was sad for her friend. I asked her if she wanted to talk about it, but she shook her head.

She left to find her shoes but stopped with her hand on the doorknob…

And in her broken prose she said,

HARD. 

And I said, “What, honey? Hard to know your friend is hurting?”

Mom, she said.

Hard to 

KNOW

what 

to do.

And then she left.

If there had been any hope of me collecting myself before that conversation, it was gone now.

My God, my God,

Yes.

It is hard to know what to do.

And I still do not have the answers.

I do know this: she must see me grieve. My children must see me cry and question and fight and cheer and worship in every kind of circumstance. I do not want them to be afraid of being unsure, of being sad, of being small in such a big, broken world.

One day they will come up against that shadowy world without me, and I do not want them to be surprised. I want them learn and practice and know that there is life on the other side. I want them to understand that THIS, this hard-to-know place, THIS is where it gets real. Only in this place can they see the necessity of the Gospel.

If we could right every wrong, if we could heal every wound, if we could explain every mystery… we would have no use for Christ. But we cannot.

There are actually things we cannot fix, and it is a terrible realization.

I will not accept an education from the news or video games or fairytales. No, they will learn about heartbreak and salvation from me. They will learn that the process is messy and inconsistent and wild and dumb. But they will see a real person live a real life, and they will know it is possible to trust God even when we have no idea what he is doing.

Let them apprentice grief by walking through it with me, in the safety of a transparent village.

Let them meet an unexplainable, unforgivable wrong…

Let them stand in the fury of a heart they have willfully hurt…

and let the process be familiar because they saw me do it, too.

And it was hard and beautiful and too, too long.

But it was possible.

world

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2nd grade (part 2)

I have always been a letter-writer.  It’s how I process. While I realize this letter is directed at a specific person in our lives, I think it’s important for me to say things publicly… both easy and hard. It is an act of accountability on my part, not an attempt to teach parenting or relationship etiquette or special-needs love. For me, it’s just talking, out loud. Parenting, out loud. Living, out loud. Without writing, out loud, I tend to hide.

2nd

Dear teacher,

Welcome to Team Rylie! I know you have 20 other hearts to teach and love and guide this year, but there is one that is most special to me. I thought some extra insight in Ry’s life might help you understand the importance of what you do every day for our family.

You are my eyes, my ears, hands, feet, and heart at school. Don’t ever hesitate to tell me anything. Every tiny piece of information you give me helps color in a blank picture of life for Rylie outside this farm. Keep some secrets for yourself… some private jokes between you and my girl. I won’t be jealous of that bond. I want Ry to meet and know women who are trustworthy, funny, smart, and kind. I have tried for almost 8 years to open the gates to her village. Just know that anything you share is gold to me.

While I’m writing this, Rylie is in her room. She’s crying. This is actually really normal for us… which doesn’t make it awesome… just normal. She’s not mad. She’s just exhausted. All fifty pounds of her has given everything it has to walk, talk, and learn in the last eight hours in 2nd grade, and there’s simply nothing left.

I don’t want you to feel bad about that. I just want you to see- to hear, because she can’t physically tell you- that she’s giving you everything she’s got. All her laughs, all her balance, all her energy. She’s using it. She’s not holding anything back. She’s not saving it for later. School is the highlight and majority of her life right now, and I want all of her best THERE.

It will get better at home. As the schedule sets in, as the routine surfaces, as the dust literally settles, her little body will get stronger.

Let me give you some hints for our Rylie Girl.

(and let me remind myself)

She loves a job. Give her a job any job, and she’s money. She’s serving, she’s productive, she’s busy, and she’s happy. She thrives on being needed, being helpful. You want to re-focus her? Give her a job. You want to motivate her? Give her a job. You want to calm her down? Give her a job.

She gets hungry. Her body is burning calories just staying upright. Like, ACTUALLY staying upright. Her vestibular system is in overdrive 24-hours a day. Balancing emotions, academics, and friendships is all extra. She may need an extra Clif bar or banana here and there (and there and there) to keep her body working for her instead of against her.

The girl is always telling a story. In the absence of words, she uses her body to show love, joy, frustration, excitement, boredom, hunger, and humor AND she does it within 2 inches of the person next to her. This makes her hands sometimes deadly but always telling. I know (OH MY WORD I KNOW) this can be a difficult thing to navigate, especially when you have other hearts to consider. I know. Remind yourself and others (and me, please) that she’s doing the best she can with what she has at the moment. When she’s shown more, she’ll learn more. When she learns more, she’ll give more.

She dresses herself. I take no credit or blame.

Rylie loves to write. Take notes. Make lists. Copy signs. She saves paper, scraps, paper scraps, and anything that might be able to be paper or a scrap later in life. Writing and paper and pencils are freedom for her.

Sometimes, in spite of 12 hours of sleep, a full breakfast, and everything else right in the world… it will just be a bad day. Fierce hugs, a new pencil, and a lot of grace are the ticket here. Also, maybe a dance party. That girl can dance.

She will learn math and reading, Bible and science in your class. She will also learn how to ask questions, to say ‘I’ instead of ‘me,’ and to let others go first. She will practice manners and grace, music and conflict resolution. She will navigate being the favorite and being left out. Ultimately, these life skills and experiences are more valuable to me than any test score or IEP goal. Teach her to love and be loved. The rest is bonus.

I know that it will be both a joy and a challenge to teach Rylie this year. You will say that’s true of every student, but I know. She trusts you. She believes you. She covets your wardrobe.

And so do I.

All of it.

I am so glad we’re on the same team. You are a FORCE, and you were made for this.

Thank you for what you do.

Love,

Rylie’s mom


I am forever sorry.

I.
trail ride

She was almost but not quite to the point of no emotional return. Her horse, Juliet, knew a lightweight when she felt one and took full advantage… stopping to graze whenever she wanted, veering off the beaten path. For 30 minutes, all 48 pounds of Rylie dug deep and pressed on. But then, it was too much. From 2 horses back, I could hear the anxiety in her voice as she commanded Juliet to, “WALK ON. NO GRASS.” I could hear the tears behind the effort, and I knew we were near the end.

Our leader, Jess, encouraged Ry to keep going. I kept Rylie talking about cows and Colorado, cousins and swimming for as long as I could. But after another 15 minutes of stopping and starting, Ry’s eyes had started to leak and her body was slumped in defeat.

Jess grabbed Juliet by the pony-lead and kept the line moving, instructing Ry to hold on to the saddle horn and keep her eyes forward. She wasn’t upset in the least, but I found myself biting my tongue.

I wanted to yell, “I’m sorry!”

“I’m sorry. Some things are really hard for Ry. It’s amazing that she’s doing this! It’s such a huge big amazing thing!”

I wasn’t worried about Rylie. I knew we’d bring her around, that she’d muscle through… I knew she’d do this. But I desperately wanted to explain to our leader and the other two guests.

To the grocery check-out clerk.

To the lifeguard at the pool.

To the other moms on the play ground.

I’m sorry.

I’m sorry she’s standing so close. She’s trying to memorize you.

I’m sorry we’re interrupting your lunch.

I’m sorry we’re making your job harder.

I’m sorry.

But the trail didn’t give me the chance that day to lay out the full scene that day. It did give me plenty of time to think, though.

Sometimes ‘I’m sorry’ is really, really important.

And, other times, it cuts life short. ‘I’m sorry’ robs people of their chance to be amazing, to do their job, to show grace, to walk with me.

I think I would rather be thankful than sorry. If we can make it through to the end of the melt down, the ceremony, the trail ride, the dinner… what I’d like to say is, “Thank you.”

Thank you for handling an awkward situation with grace.

Thank you for loving on my family and my child.

Thank you for doing your job well, whether easy or difficult.

Thank you for stepping up to the plate.

Thank you for lending a hand back there.

Thank you for being a great example.

It’s not my job to apologize for every instance of awkward or hard or annoying. Not every time. That’s just life, and we’ve come to expect too little of others… and of ourselves.

But I will, I absolutely will, go out of my way to encourage decency and beauty and simple effort. Because we’ve gotten a little low on that end, too, amen? So, call it when you see it. ‘Thank you’ doesn’t have to be anything but sincere. No flowers or extra tips or hand-lettered gift tags. The simplest effort with the greatest impact is your voice, your brave and shaky voice, stopping for two seconds, making eye-contact, and saying, “thank you,” out loud.

I’m on it.

P.S. Rylie? That girl finished a 2-hour trail ride on her own horse in the mountains of Colorado. We did not have to turn around. We did not have to get off the trail. We just had to make a few adjustments. It was a beautiful, beautiful thing.

II.

summer 2014

For years and years, kind friends and family and even strangers have asked if there’s any kind of donation collection for Miss Rylie Joy. The answer has always been no. We use state-provided therapy for speech and occupational/physical and what the state doesn’t cover, we pay out-of-pocket. Out of pocket expenses have been specialist evaluations, equine therapy, music therapy, and other doctors that insurance just hasn’t come on board with as of this century. Rylie walks unassisted and was blessed with an iPad for school-use… so there aren’t really any big, huge, amazing things that we’d love to have to make life easier.

BUT.

There is one thing that would make life super fun: a bike. And, not just any bike… a cool tricycle with a basket and brakes that are easy to use. A tricycle that doesn’t scream ADAPTIVE EQUIPMENT! CHILD WITH IMPAIRED MOTOR DEVELOPMENT ON BOARD! A tricycle that would allow Rylie Joy to ride with her friends and be the super-cool seven-year-old that she is… .while giving her a little more time to work on the balance aspect of two wheels. A tricycle would let her body practice the braking and starting and stopping without mastering balance at the same time (a perfect storm of overwhelmed-ness for most kids… Ry especially).

I want to buy Rylie a bike.

And I want to know if you’ll help me?

They aren’t cheap. And then you have to ship them. And then you need a helmet and OF COURSE a bell and streamers. But beyond the price of the thing… there’s the magic of simply coming together as a community of friends and pitching in $10 or $20 or $300 or $2.50 and making a sum larger than the parts… of doing it together because we can. You have cheered this girl on since before she took her first steps. What a joy it would be to give her a brand-new, shiny, YOU CAN ACTUALLY RIDE THIS bike- not on her birthday, not on Christmas, but on a random, ordinary, perfect day.

It’s a risk, I know. It’s not absolutely necessary and it’s not saving the world. It’s just something beautiful and fun and helpful for our girl. Honestly, that’s not something I want to do alone. It’s kind of too big for me… and I’m not talking about price. I’m talking about holding happiness. It’s meant to spill over and be shared.

So, do it with me.

If you’re in, head here:

Or share this link: http://www.gofundme.com/hotwheelsforrylie

I’m not sorry for asking.

I am so incredibly excited to say THANK YOU. Thank you for loving on my girl in this remarkable, tangible, memory-making way.


progress

PikesPeak

Five years ago, I watched Rylie sit on the steps of the gym pool. I silently begged her to get in, to splash around, to jump in with improper form and her hand holding her nose. But, she only wanted to sit. After a few minutes, the echo of the room was too much and we left, but not before her hands were clamped tightly over her ears and her body was a wet noodle of distress.

Four years ago, I took Rylie to a junior high basketball game. We had just made it to the opposite side of the gym when the buzzer went off signaling a time-out and Ry turned ghost-white. We cheered from outside the double-doors, but not before 2 more buzzers and me carrying a terrified, sobbing child back through the crowd.

Three years ago, I took Rylie to the zoo. We saw as much as we could and then stopped for snacks and a potty break. Three years ago, those crazy Dyson hand dryers were a new and fabulous invention… but no one expected the jet-engine flow of air to be triggered every time someone opened the bathroom door to stand in line. Parents and children, typical and special needs, terrified and annoyed… we all left. Immediately.

Some of this sensory and speech life is so predictable. You prepare for it, you bring extra snacks, you board last, you use key words, and sometimes your day resembles typical. But there are always the surprises you can’t account for. The perfect storm of tired, hungry, and scared that elevates a tantrum into a breakdown. The highway of emotions that has no exit. The effect that has no cause. The constant battle for solid ground. You find yourself afraid of grocery stores and potential traffic jams, circuses and cracks in the sidewalk outside your door. What will break today? 

Last week, I watched Rylie splashing in water up to her shoulders. The pool was sloped and she lost her footing. As a friend and I sprinted to the edge ready to jump in, we watched as Rylie took a deep breath and started kicking furiously. She made it to the side without our help and without panicking. Once on dry land, she cried… because it was scary. But she cried for 5 minutes. We didn’t have to leave. We didn’t have to sit in a dark room. We just had to take a break and redefine the boundaries. Rylie went right back in.

Today, Rylie rode with us up a mountain for an hour and then back down again. The return trip was full of thunder and lightening and a road without a guard rail. Instead of hiding on the floor of our van and shaking with anxiety, she searched for light in the sky and scanned the hills for sheep. Her hands were still over her ears, but there were no tears, no wailing, no panic.

Tomorrow, I will take Rylie back to that same zoo and, no doubt, we will have to stop for a potty break.

I’m not afraid.

She’s not growing out of her challenges.

She’s growing into herself.

She still breaks down every day. She still choose physical over emotional strength. She still, at age 7, speaks at a 2-year old level. She still hates hand dryers and random buzzers. But she knows her limits a lot better now, and so do I. So much is still unknown,

but I am not afraid and she is not going to break.

And that is progress.


as long as she’s healthy

R&K

 

AS LONG AS SHE’S HEALTHY.

That’s all we want. It is the mantra of every parent-to-be. We don’t care whether it’s boy or girl, we just want him or her to be healthy.

Our entire vocabulary shifted when Rylie Joy turned 20-months. She was healthy, yes, but she was not typical. She was functional, yes, but she was not thriving. She was perfectly fine, but she wasn’t. Was she healthy?

My first concerns were school and independence and long-term capacity for speech and learning. Seven years into this journey, I find that my prayers have changed. I can do therapy drills and we can alter medications. We can drive to appointments and we can monitor food intake. There is actually so much that can be done to assist the health of our children.

What I cannot do is make another child love my child, and it is the ache of my heart for her to be safe outside the farm gates. Somewhere after the grief of diagnosis and the passion of therapy to increase quality of life, my priorities changed from wanting better test results to knowing her heart was safe.

As long as she is loved.

Please let her be known and be loved.

[This is not the end! I’m so blessed to be a guest over at Making Us Whole today. Please click over to read the rest of the story.]


pretty mystery

[lyrics by Eric Taylor, sung by Lyle Lovett]

Rylie Joy,

We hear so little about the simple things in your day… whether your shoes fit well or you like your lunch, whether a friend hurt your feelings or your teacher made a funny joke. The big things we know because we ask and we follow up… but the small things are secrets locked inside of you. You use all of your words to explain the big things in life. These smaller details are secrets trapped inside you, tangled in sentences that are just too much to wade through at the end of a day.

I wonder, then, if you can understand the joy it was to read an email from your librarian late Thursday night giving me a glimpse into your world away from home:

I witnessed a precious moment today in library. Rylie usually sits in the front by me as I read to their class. Today, I started library by randomly picking one of their self-published books to read to the class. I told them we would read one of their books each time they come to library before reading the library book. They were excited and wanted to read more. The kids struggled to focus on the Olympic non-fiction text so I hid their books behind my book stand. Suddenly I noticed Rylie slowly moving behind me to their hidden, self-published books. Rylie quickly sifted through the class books and put hers on top. I asked her to join us on the rug and promised we would read more another day.

As she moved to her seat she spotted A, sitting in the back-arms crossed, face frozen in a serious pout (She was mad at a friend). Rylie moved to a spot next to A. With a look I can only describe as maternal, she cracked her neck, leaned in and looked into eyes. A ignored her. Rylie wrapped her arm around her shoulder and looked again into A’s face (deeply concerned). A melted. Her arms uncrossed, her pout disappeared and she began listening to the story. Rylie checked her face again, noticed the change and moved her arms back to her side.

Typically, Rylie moves a bit in library- sometimes to get a better look, or to point to a picture and some days just because she wants to move. Today was different. Rylie planted herself by A the rest of the time, providing the best sort of comfort- friendship. Truly the highlight of my day!

And of mine, Love.

What a pretty mystery you’ve suddenly turned out to be, Rylie Joy.

Ry 7

Your lack of words has heightened your emotions in all directions. You soar and plummet while I try (and fail) to hold the ground steady around you. You push and I pull. You crash and I burn. I wonder what you will remember from these years… these incredible formidable years when your heart is changing and growing and finding its own rhythm. Truly, there are many moments when I think you will save this world from the status quo… and still others where you could raze a house with your door slamming. I wonder what you must think, Child, as my demons fight alongside yours. Some days we are a symphony and others we are a train wreck.

But then. The fever breaks and you speak through laughter or forgiveness or- now- writing… and I hear this:

IMG_1964

You and I. 

We are capable of so much more than it seems in our darkest moments.

And we are so much more than the sum of our awkward and difficult parts.

Thanks for the reminder, Love.

Big wins for both of us this past week.

I’m always on your team.

Mom 

God, being rich in mercy,

because of the great love with which he loved us,

even when we were dead in our trespasses,

made us alive together with Christ.

 Ephesians 2:4


Rylie Joy is seven.

AVbook

Wednesday night, I asked Curt to write down a number between 1 and 17… and he picked 3, which is Corrie! Yay, Corrie! I’ll get this in the mail to you. Probably with the Christmas cards 🙂

Thanks for commenting Monday, Folks. It was fun to hear from you.

Rylie Joy!

I need to tell you a story, Child. A story for you to keep close at heart.

Can we talk a little about Esther? Esther was a queen. She was also a Jew, but that was a secret. Her uncle asked her to keep quiet, and she did. But then one of the King’s men realized her family’s secret and wanted to punish ALL the Jews by killing them. It wasn’t safe anymore, and Esther had to decide whether or not she was going to be brave and confess to her husband that these people… these people who were going to be killed… these people were actually HER people, too.

It was a great risk. A matter of life and death.

As she thought about what she was supposed to do, her uncle reminded her: “who knows whether you have come to the kingdom for such a time as this?” (chapter 4, verse 14)

Esther was a queen behind the gates. She had a secret, a burden, that would either kill her and her family or save everyone. Was she brave enough to risk it and confess or would she stay silent and watch her family disappear? Was she willing to use her position to help those on the other side? Was that maybe exactly why she became queen in the first place?

As a woman, you will hear this story over and over in your life. Esther is a champion not only among woman but all mankind. She is an incredible example of God’s timing and provision… and, what’s more, His desire for us to be courageous in Him and for Him.

You, child? You are my Esther.

You don’t realize it, but you have the potential to set people free. Free from expectation and standard. You were born with the ability to disarm and communicate. Oh, child. What many wouldn’t give… many with a voice that works perfectly fine… to be able to connect like you do.

I would never expect a disability to come with so much power, but I see it every day. You, behind your gates, are helping us on the other side see a better way to live.

You know, Esther did tell her husband, the king, that she was a Jew. She took a big breath and she did it. And the king changed his mind. She used her position as queen to save those who had no say in the matter.

My prayer for you, Ry, is that you would continue to fight hard. That you would be brave. That you would know we are all learning from you, a child who struggles to speak.  So many have learned so much from such a little child.

It has been this way throughout history.

sparkleRy

Here’s to you, Rylie Joy.

The girl who loves horses and purple and gym class. The kid who hoards notebooks and pencils and homework busy sheets. The child who eats like a linebacker but can’t break 45 pounds. Here’s to you. The kid who can work any gate on the farm, wash 2 dozen eggs, and pet 500# cattle without blinking. Here’s to you.

You are seven today, and you are fierce. You love unconditionally, you dance without shame, and you cry until you are empty. Stand in line and take your place among the chosen. Teach us to laugh and be brave and love desperately again.

You, Little, are a healer. You are a clown. You are a feeler, and you are a fighter. But above all these, you are the daughter of a good King. Never be afraid to approach Him. Never doubt the gifts He has given you. And never, never hold back… because you, with Him, move mountains every day. You have, indeed, been chosen for such a time as this.

I love you.

Mom

Past birthdays:  Ry is bornRy is 1Ry is 2Ry is 3Ry is 4Ry is 5. Ry is 6.

My favorite Rylie story: the story about the fish.

What’s your favorite Rylie story? 

[family photo above by the incomparable Trace Dicocco]