Category Archives: Childhood Apraxia of Speech

Do you hear what I hear?

hear You think I have the wrong photo.  A story about hearing should have a picture of an ear, naturally. But listen… listen to my girl. Listen to her speak.

You will hear her at age 2 and a half.  There are very few words but tons of expression.  You will see that she is thinking. She notices there are cows in the book. She notices that she’s wearing cow pjs. She says ‘eeeez’ for cheese and lots and lots of MAHM (mom) for filler words. She’s in there, and she knows it.

You will hear her at age 4, after 2 years of therapy.  You will hear me prompting every response and you will hear her answer awkwardly but correctly. One-word answers, but with joy. Lots of new words in 2 years. ‘Neigh-neigh’ for horse and purple and Bubba could possibly be the same word… but it’s what she can do. It’s inarguably progress.

And now, she is 6. She speaks like your average 2-year old, but we are MILES, states, and continents from where we started. She has different, distinctive vowel sounds and a regular rhythm.  She is so, so very far behind her peers… but she is moving forward.

It is music to my ears. The difference is stunning. Perhaps you have to have lived through the last four years of therapy to hear it. Perhaps, just maybe, it doesn’t sound like much has changed. I get that. But hidden there in the effort and the smiles and the consonant-vowel-consonant combinations… hidden there is something I have not heard before.

It sounds like possibility.

reading a book (age 2 and a half)

talking about her horse (almost 4)

reading a book (age 6)

doing her vocabulary words (age 6)


out of the mouth of babes

Once a week, Rylie rides at a local barn dedicated to serving children and adults with special needs.  We’ve been on a break since summer because they’ve been swinging hammers and putting up new walls. Oh, how we have missed our horses!

Thursday, we returned… but on a new night at a new time with familiar but new volunteers. As L came to grab Ry and take her down to the mounting block, I took a moment ramble on and on… and on… about some new things Ry’s been working on.

Hi, L! Super excited to be back. Hey- Ry and her SLP have been working on a new word… a word she can say when she wants to say something nice but can’t think of how to respond or doesn’t have the words to respond (you know, she gets stuck… and this give her a chance to participate more than she can now). But, you’ll prolly have to remind her at first. We’re still working on it. What’s your word, Rylie-O?

I turned to Ry, prompting her.

Nothing.

Right. So, the word is NEAT. So, if you guys are walking tonight and you are telling stories, maybe use the word NEAT, you know? Back and forth… so you can practice having a conversation and taking turns. Maybe when she’s posting or makes a basket in the little hoop out there.  You know? Great. How was your Christmas?

Um, it was great, thanks! You know, actually, I’m just in the barn… not in the ring. I’m just walking Ry down tonight.

Right. So all that stuff I said before? Completely unnecessary for you to know. Too much information.

Well, sort of, yeah.

We stared at each other for an awkward second… until the silence was broken by a 6-year old’s voice from beside me:

Neat.

Say what you will about her voice; that child has impeccable timing.


a letter to Carson

Hi, there, Carson!

How are you today? I am fine. My name is Mrs. Mulder… Rylie’s mom. You and Rylie are both in Kindergarten this year, and you both seem to love it. You also get to ride the little yellow bus with Ry because both of our families live out in the country. Do you love the bus? Rylie loves the bus.

I have to apologize to you, Carson, because I only just learned your name. I don’t know all of the kiddos’ names and faces in Ry’s class because I don’t hear the funny (and, oh yes, naughty) stories like most kids tell their parents after school. Much of Rylie’s day is a mystery to me… at least, from her perspective.

You see, Rylie has trouble talking. She has trouble getting her brain to say the words she wants to say. She can’t tell me exactly what she wants for dinner or what songs she sang in school… and she can’t tell me who she plays with at recess or what her dreams were about the night before. Not exactly. The words are coming… boy, howdy they are coming! SO many new words just this year! But nothing like the chatter your mom probably hears.

Anyway.

Kindergarten cupcakes

Carson, I have a story to tell you. I wanted to tell you this story so you will always know that you are AMAZING and wonderful and super, super awesome. See, just before Christmas, Ry brought something special to school and it got lost… immediately. Like, before she even got off the bus. But no one knew what it was because she couldn’t tell anyone exactly what she was missing.

It was a terrible day. Your teacher told me that Rylie came in the classroom crying and pretty much never stopped until I came at the end of the day to bring her home. It was so bad, she said, that she had to give Rylie a time-out while everyone else went to Gym so she could cry and calm down and collect herself. So, she did. And, she eventually felt good enough to go to Gym.

And you know what happened when she got there?

You were saving her a seat.

And she was able to walk over and sit down and join in… and she was able to feel like she had a friend. It is the most wonderful feeling in the world, to feel like you have a friend! A friend who’s excited to see you, who misses you when you’re gone, who plays Lincoln Logs with you during free-time. Thank you, Carson!

Carson, you are a good friend. I hope that I can be the kind of simple, loving, unconditional friend that you are… one who saves seats and plays alongside and waves at the bus stop.

I don’t know if you will know Rylie all your school-life. But, I know that I will remember you. I will remember the sweet heart that you have and how friendship can be easy and forgiving. That’s a remarkable lesson for someone my age… and certainly notable that I would learn it from a 6-year old.

You shorter people are always such incredible teachers.

Thank you, Carson.

Let me know when you wanna talk about prom.

Love,

Ry’s mom


Rylie Joy is 6

In this house we light fires, grills, and candles with a blow torch.

Ry turned 6 last Wednesday… never have I been caught so unawares. This past year has been a whirlwind, with most of the swirling happening in just the last three months. A new school, a new routine, less naps, less free-time, new therapists, more meetings, more evaluations, more packed lunches, more book orders, more homework. It has been a lot to take in, but she has rallied in every sense of the word. Her language is exploding now that she has new people and new friends encouraging her. She has been so very tired, but she has been so very happy.

Her birthday was a bit tricky this year… it was the first day of vacation, the day after a long field trip, and the day before Thanksgiving.  Curt had a normal day of work, and we had a fairly normal day at home. Ry asked to have lunch with her cousins (granted) and pancakes for dinner (granted).  She got some clothes and a hopscotch rug… and both sets of  grandparents scored big at the teacher store with dry-erase flip charts, alphabet cards, and memory games.  It was an unintentionally quiet celebration, but sweet.  She’ll be queen again at school today when she brings birthday cookies for her friends. I’m pretty sure it’s what she’s been looking most forward to… bringing cookies to school.  Not because she gets to share, but because she’ll get to be the teacher for one brief moment while passing them out to her classmates. THAT is Rylie.

On a whim last Tuesday, I yelled out on Facebook for folks to draw Ry a birthday card and send us a photo of it. She received over 50 cards from 3 countries in 24 hours… and I cried at every one.  Emails with subjects like “for our Rylie” and “for my BFF Rylie” and “you don’t know me but I made this for Rylie”… oh man.  It is one thing to know this child and live with her and love her and see how far we’ve come in 6 years.  It’s another thing entirely to realize people all over are rooting for her.  It catches me off-guard every time.  She is everyone’s child.

If there’s one thing that girl loves, it’s seeing her name in print. I’m making a photo book the birthday cards she received by email and snail-mail to put in her Christmas stocking.  If you want to add to the book, certainly send her a note my way by email: katiemulder at gmail

She loves horses, lists, singing, helping cook, swinging on the tire swing, markers, the mini-Boden catalog (marketing geniuses), and anything purple. She knows all her letters, the numbers 1 through 10, and has a tendency to discipline other children at school.  She can write her name!  She can skip!  She’s SIX now, which is a stinkin’ hard number to say when you speak correctly, let alone wrestle apraxia… so we’re working on that.  She eats Frosted Mini Wheats every morning for breakfast and is a champion egg-washer for me by night.

She tips the scales at a slight 42 pounds (with Gideon gaining on her every minute) and is 42 inches tall (with Gideon not gaining on her every minute). She’s lost (and gained) 4 teeth.  She still rides horses every week, but we’ve put our music extra-curricular on hold for a bit until we settle into the extra hours and energy of daily school. She is riding a bike with training wheels and cannot be stopped on the sledding hill.  Child still loves to sleep and regularly puts herself to bed shortly after 7pm. We don’t have favorites in this house, but that bedtime thing is a BIG plus.

Rylie Girl… you are six.

(or, ICK, as you say)

We love you so very, very much.

Past birthdays:  Ry is born. Ry is 1. Ry is 2. Ry is 3. Ry is 4. Ry is 5.


grace

For me, every hour is grace.
• Elie Wiesel

When you take a 5-year old to a birthday party, you talk to her on the way.  You talk about friends and special days and presents.  You talk about manners and shaking hands and remembering to go potty.  You talk about taking turns and going slow and being kind.

You remind her that you’ll be there the whole time, so she doesn’t have to worry.  She’s not in this by herself.  She’ll probably get overwhelmed and she’ll probably get tired and certainly hungry… but you’ll remind her she is not alone.

You’re ready.  You arrive and you help her put on princess dresses like the rest of the girls and you watch her twirl and giggle and clap.

She’s stunning, really.  Paying attention.  Listening well.  Using glue appropriately.  She’s doing… amazing.

And then it’s time for musical chairs.  You stand to the side and you wonder how this will go… if she’ll understand the game, if she’ll cry when it’s her turn to lose, if this is the beginning of the end.  But she laughs! And she skips! And she even wins a few rounds.  When it’s her turn to step out, she spins on the sidelines.

She’s stunning, really. She’s doing amazing.

But now there are only 2 girls and 1 chair.  And the tone has changed.  The universal-mom in you feels the tension build.  As the girls stop circling and, instead, guarding the last chair, you step in to lighten the mood…  and you move the chair!  They have to run to a new spot! And the two princesses chase you to win at all costs.  You’re smart, though… you’re a mom.  So you move the chair again.

And that’s when the Birthday Princess misses the chair and falls to the ground.  She might even get up and run to a corner, embarrassed.  She might… she might even refuse to play any more games for a bit.

And her uncle might have video-taped the whole thing.  Because what is a birthday party if there’s not proof of your mom’s friend knocking you down at your 5th birthday party in front of all your friends in your princess dress?

When you drive home from a birthday party with your 5-year old, you praise her for having a remarkable day. And you quietly thank God above for the strange grace of having a silent child and friends that love you.

Even when you knock their kid down.

Above all the grace and the gifts that Christ gives to his beloved is that of overcoming self.
• Francis of Assisi


lost in the quiet

We lost Rylie on Sunday.

Or, rather, Rylie lost us.

I wasn’t even there and, yet, I cannot stop thinking about it.

Rylie is a shadow… she sticks close.  So close that often I have to physically push her away to make dinner. Read the mail. Take breath.  Losing Ry has never been a problem.

There is one things that Ry loves more than her parents, and that is Apple. So when she and Curt went to town on Sunday to fix the disaster that was his iPhone, she was immediately at home with the iPads and the nanos and the iPhones.  All those screens.  All those those shiny, beautiful screens.

When Curt stepped forward to talk to the salesman, he stepped out of Ry’s line of sight.  When he turned around a couple minutes later to do a visual check-in, she was crying.

You know that feeling…

when your kid thinks they’re lost and you know they weren’t really lost but they’re terrified and so you’re terrified for them? It will break your heart.  Curt told me that 5-second story as we were falling asleep Sunday night and my heart still aches.

There are days when we completely forget that Rylie cannot talk like the rest of us.  Her disability is invisible, and from a distance she looks like every other kid in an Apple store… thrilled.  Even the getting lost part… totally normal kid experience, right?  Everyone’s been lost at one time or another. It can be easy to forget- we celebrate days we forget– that she’s got this little thing called apraxia!

But then the ending slaps me back into reality.  How does my child ask for help?  If Curt weren’t there, if I weren’t there, if her teacher her friends her brother weren’t there… how would she tell someone?

She can’t.  

She can’t verbalize our last name, our phone number, our address. She just knows she’s supposed to be with us.  And so it’s taken 6 years to realize my greatest fear- that her jumbled voice means she literally cannot ask for help.  Cannot explain to a stranger why she’s crying.  Cannot find her way home.  Ry is amazing at getting her point across… but this is one area that is beyond her.  Because when you’re afraid or hurt, nothing comes out right… for anyone.

Practically, I need some ideas.  Phone numbers in her clothing? A medic-alert bracelet?  What? What do you do?

Spiritually, I need some calm.   I cannot live every day worried that she will come to harm. The world is a hard place, but Ry brings out the best in it.

Emotionally, I need some courage.  Plain, old-fashioned courage to let that girl grow up and walk away from me.

And I’m thinking my neighborhood, my village here, can help me with some of that.

We love you here at TexasNorth.


one past whatever

I spent hours and days and years as a ropes course facilitator.  You take a group, you start low and slow, and you build.  You build familiarity, esteem, respect, challenge, and comfort.  It’s an exercise that is meant to translate beyond the woods, something that will help you cope a little better with daily life.

The last activities are usually quite hard: climbing poles to zip lines and obstacles courses 30 feet in the air.  As an anchor and instructor, I care about one thing: that last step. I made some version of the following speech every time:

At some point in the next couple hours, you’re going to reach your limit.  You’re going to look down at me from the pole or the platform or the wire or the rope and you’re going to say, ‘I am done.’ I get that. Everyone has different limits, and that’s absolutely fine.  But, I’m going to look at you in that instance and I’m going to say, ‘I hear you.  I need you to go one more step.’

I’ve worked with you all day. I’ve watched you work and I’ve watched you play.  I’ve stepped in and I’ve  stayed out of the way.  But here… here is where I use what I’ve learned about you today.  Here is where you tell me you’re done and I say, ‘Yes.  Fine.  AMAZING JOB. Please do me a favor… and go one step past what you think is possible.  I PROMISE YOU IT’S POSSIBLE and you will be fine.’

For some of you, that will be putting on the harness and then touching the pole.  For others of you, that will mean climbing the pole and doing one obstacle.  For a few of you, it will mean doing it all blindfolded.  It matters not to me where you are in that spectrum… only that you trust me in that moment when I say, ‘Alright… one more step.  One past where you are, and you’re done.’  

Are you in? Will you trust me to take you one past whatever?

Inevitably, they would all agree and we would finish out the day surpassing all our expectations and then some.  Without exception.

Our transition into private Kindergarten has been remarkable.  Rylie is thriving with the mental and physical challenges of a new school and new teachers and new friends.  She loves everything.  We love everything because she loves everything.  It was absolutely the right choice.

Our transition into a new district of special-needs therapy has been less-than remarkable.  I spent most of Monday crying to people I do not know, trying to understand why- after 3 years of meticulously  documented and continuous therapy with public school district A- we must start all over with public school district B.  Why am I filling out forms again, writing out birth stories again, stating objectives on State papers, pushing for therapy we do not want but desperately need… why am I doing all of this when it has been done and done and done- again?  We are losing precious time!  Why are they doubting- and even discrediting– what therapists who have worked with and loved Ry for three years have found, discovered, and recommended?  The frustration turned, as it always does, to doubt.

Hey, God?  I’ve reached my limit.  Are we done? Can we be done?  Is there more in that kid or can I just let it go and slide into maintenance mode?  I’m here to tell you, I am done.  Finished.  Tired.  There is no fight left in me. I cannot prove to one more person the potential that exists or the needs that persist in my child.  I cannot do it.  I am done.

I cried ugly tears because I was exhausted and defeated.  Then, because there is no rest from life even when you cry ugly tears, I picked up Ry from school.  I asked her to show me what she had learned that day, expecting a quick game of charades explaining she played with her friends and she loves Mrs. B- the usual.  Instead, she backed up to the wall and signed for me to watch.   She took a big step forward with her right, took a big step forward with her left, and then began to skip.

TO SKIP, Friends.

For seventy-thousand-th time that day, I cried.  It was not just skipping, you see.  It was proof.  Friends, Rylie skipping is proof that it’s possible for both sides of her brain to communicate together and for her muscles to interpret that communication quickly and correctly.  Rylie skipping means she may be able to read one day.  Rylie skipping means… well, it means we are not done.  I can hear my God as clear as day:

I know you are discouraged.  I know you are tired.  I hear you.  But, I need you to go one more step.  I’ve prepared you for this your whole life.  Look at how far you’ve come!  Look at your little girl!

Where there once was no sound, there are words.  Where there once was no writing, there are letters.  Where once there was no walking, there is skipping. There is more to come.  We are not finished. She is not finished… not by a long shot. There is more in that girl and she needs you to fight.  I need you to go one more step.  Take one more step.  Let me take you one more more step.  Are you in?

Brilliant Teacher, to use my own words against (?) me.  Like He knew they’d only make sense to me if I’d used them myself to move a thousand other people stuck in a moment.  Like He planned my life around me working through other people’s limitations so He could help me through my own.  Like He knew I would have a little girl would need me to fight for her… to go one past whatever for her.

I’ve said it before, and I’ll say it again: Rylie has no clue she has different limitations than most kids.  It would appear that her special-needs are meant to draw me into a better Light.  You have to love a God who makes things like skipping into miracles.

Send the papers, the evaluations, the meetings, the questions.

I’m in.  Let’s go.

One past whatever.  I’m on the ‘whatever’ part.

[really great article HERE… read when you have a moment]


breaking bread

Dear Rylie,

A week from today, you will officially start Kindergarten.  s c h o o l.  School with a bus and big kids and little kids and lunch time and recess and raise your hand if you hafta go to the potty.  School.

You, Child, you will love school.  You will love all the people and the routine and the jobs and the walking in lines to new exciting places like music! and gym! and art! I’m a little jealous.  It’s been a long time since I went to art wearing my dad’s old t-shirt.

I wanted to steal a second to talk to you… about talking.  Rylie Girl, you were born thinking differently.  And, God bless you, you were born SAYING things differently.  I pray this works to your advantage.  You’re headed to the Big Time now and I won’t be there to interpret for you or speak up for you or prompt you… not like now.  So, I want you to start off on firm ground.  And that has less to do with speech and everything to do with heart.

See, me and you- we’re fighters.  We have strong opinions and we are actually really decent at getting a point across.  I see this in you already, even at 5 years old, even without a voice.  Folks like you and me… well, we need to be careful.

Time was, you could hear something, not understand it or not agree with it, wait until the person was finished talking, and then say your piece.  This is rarely tolerated anymore… not among strangers, and truly- be careful with close friends.  The art, the joy, the discipline of debate and safe discussion is quickly being shelved.   Where you could once spend your life thinking out loud, learning, asking questions, and growing you must now pick a side and run to that wall without being caught or face the consequences of isolation.

*sigh*  Like you don’t have enough to worry about already.

There’s a beautiful concept in the Jewish culture that is literally as old as the sea.  Men would (and still do) spend hours and days, weeks and years debating and dreaming passionately over Scripture.  Interpreting.  Teaching.  Picking apart words.  Counting syllables.  Laying down, as it were, the Law of the land.  Conversations regularly ended with no resolution to either argument.  And they were (are) pleased by this.

These wise men… they did not agree on everything.  Sometimes, reading their commentaries, I wonder if they agreed on anything.   But here’s the kicker: after arguing for hours every day, they would pack it all up and eat dinner together.  They believe (and I agree) that you can debate with heart and still break bread together at the end of the day.  When hearts are on the same page, relationships are more important than resolutions.

Here is what I say to you:

I know, it’s kindergarten. You won’t be debating government policy or church theology in kindergarten.  I know.  But, here is where your table begins to fill up with people other than your family.  Here, you will meet people who think and speak and act differently than you, if ever so slightly.  They will pick different colors, go on different vacations, worship at different churches, pack different lunches, ride home in different cars, and dance to different music.  It starts here.

I pray you will meet others… even in Kindergarten… who will join you at your table.  People who are of the same heart but all different shades of mind.  Disagree. Debate. Yell, laugh, cry, and share- passionately.  But do not let it go so far that you cannot return to the table in the evening together.  Be prepared, if not eager, to share a supper when it is all finished.  Hold that concept close to you in everything, for it is the level ground beneath your church.

Take your seat.  Save me one next to you.  And, at the end of the day, may your table be full.

I love you.

Mom


We’re on our way.

Rylie Girl.

Monday afternoon we had your final IEP meeting before Kindergarten next year.  It was a chance to meet with all your current therapists and hear how the past year had progressed.  Everyone was there to brag on you, Ry!  Becky and Becky and Brenda and Jessie and Pete… and even Mrs. Rachel and Mrs. Karen for next year.  Mom and Dad… and everyone.  We all came.

As much as we focus on details- numbers and charts and progress and scales and standard deviations- I will leave those to your official files.  Let me tell you that in a year’s time, you are now age-level (and sometime ABOVE average!) in your gross motor skills!  Well, in everything but ball throwing… but that’s genetic.  Sorry.

A year ago, you were barely on the charts.  And what’s important is not that you can run and swing and jump… but that your body can do it without so much agonizing effort.  That you can (usually) catch yourself before you fall.  That you can run and keep up with the boys… and lawnmower.  That your body is not fighting itself AS MUCH as it was last year.  The gap- that huge chasm of difference- is slowly closing.  Because once Gross Motor closes, next comes Fine Motor.  And once Fine Motor gets more under control, then comes Speech.  And once Speech comes, Emotions.  And after all that, Disneyland and basic world domination.

We’ll take it.

Kindergarten here we come.

Get ready.


the cost of education

Dear Rylie,

I thought I would be the mom who made a warm breakfast every morning, who had art projects planned strategically throughout the day, and rotated books with the seasons.  Maybe I would home-school, maybe I would Montessori… but either way, I’d wear long flow-y skirts and a cowgirl hat and we’d feed the chickens in-between lessons and talk about where our food comes from.

It’s a family joke that I have the child who must touch, must lean, must shadow.  Me, who needs a personal space barrier of 2 feet at all times.  It’s a proof of genetics that I have the child who can be more sullen, feel more emotions, and carry more anxiety than her five years should allow. ‘Payback!’ I hear more than I care to.  It’s true… I know.  But there is more.  There was always more to you.

Deep inside, there is a girl struggling to be understood… quite literally.  There is a girl who absolutely cannot stand to be bored.  There is a girl who is content with direction and approval.  This… this was not me.

For me, words flow easier than relationships.  For me, singing in front of thousands is more comfortable than eye contact with your father.  For me, freedom is a blessing  and I bristle when someone tells me exactly how to do something and when to do it.  You?  You have more social skills now than I ever will.

It is the beauty of a new creation.  In Christ, we are all new creations made in His image.  You and I share a history and a family and a future… but we are our own.  Same, but gracefully different.  Let’s both try to remember that, ok?

You will start kindergarten next year, Rylie, and you will be going to school.  Real School.  You have grown beyond what I am capable of handling on my own.  I simply don’t have all the tools to be everything that you need.  God has rigged it so that you would have to fly and I would have to ask someone else to help you land.  I know you… and you know me… too well.  We need to expand the village.

I am terrified.

What if you get lost?  What if you can’t get to the bathroom in time?  What if your teacher can’t understand you?  What if the other kids laugh at your jeans that are always too big?  What if they don’t invite you to their birthday parties?

Oh, it will all happen.  I know.  But what if you notice?

Your dad and I have looked at 4 different school districts and 2 private schools.  We have emailed, phoned, and met with principals, resource team leaders, and bus drivers.  One… one… called immediately.  One asked how they could serve you.  One met with us before the sun came up to hear your story and show you around. One praised your progress and prayed for your development.  One cried as they talked about the potential to work together to bring out Rylie we don’t know yet… the child of God within.  

There is no question that you will be safe here… where they answered questions I did not voice.  Where there are students like you and students not like you.  Where the staff will pray for you when my voice is hoarse.

I’ll be wearing my long flow-y skirt and cowboy hat… as I pick you up from the bus stop every day.  And I will beg for information and snippets of song as clues to your day… as we feed the chickens.  It is not what I pictured.

Perhaps it is more?

The cost of education is great, and it has nothing to do with money.  I will pay the tuition… but that’s just a matter of re-budgeting and discipline.  No- I will pay in the distance, in the giving over, in the requirement of trust, in the absence of you.

And I will celebrate in the freedom, in the peace, in the pride that will return… in your joy of adventure, in your excitement for that yellow bus, in your pages of practiced letters and lines.

I will pay.

I am glad to have a little time to save up.

Love always, Mom