Persistence

I bought Isabelle tie sneakers when she was in first grade. She had been practicing tying laces with her occupational therapist for months. It was time for her to try it on her own. She loved the sneakers, but resented being asked to do it on her own since it was difficult for her to motor plan how to do it.

Childhood Apraxia of Speech, which Isabelle was diagnosed with when she was two, is a motor-speech disorder. Thanks to intensive speech therapy, Isabelle can motor plan most of the things she wants to say. A few times a week a word still gets stuck or she finds something she can’t pronounce. (For instance, she read a book with the word ridiculous yesterday. It took multiple tries of us working together to get her to say the word correctly.) But what most people don’t know is that many kids with Childhood Apraxia of Speech often have difficulties with motor planning in other aspects of their life. For instance, a typical kid can learn to tie their shoes in a few weeks. Isabelle had to work on it for over a year and a half to get good enough to wear tie shoes when she wasn’t with me. However, as recently as last week, she was still having trouble double-knotting her sneakers. As a parent, it’s frustrating to watch your kid struggle with things that come easily to other children. Despite the frustration, I have learned to adjust my expectations so that I can work with Isabelle at a pace that suits her.

The picture of persistence!

This morning, I needed to use the bathroom at the exact time Isabelle needed to tie her sneakers. I told her, “I need you to put your sneakers on while I’m in the bathroom. If you need help, I will help you when I come out.”

I expected to see Isabelle sitting on the floor — frustrated — with untied laces when I came out of the bathroom a couple minutes later. But that’s not what I found. Instead, I discovered her on the carpet — calm — with two perfectly-tied sneakers. However, she was still fiddling with her laces.

“Looks like it went well. What are you working on?”

“I’m trying to double knot my sneakers,” she replied.

“Do you need help?” I asked.

“I’m trying it myself,” she said.

“Okay,” I responded. “I’m here if you need help.”

Isabelle persisted for another minute. Finally, she looked up and said, “I think I’d like your help.”

“Good for you for trying. Remember when it was hard for you to tie your sneakers?”

“Yes,” she replied.

I knelt down to double-knot her sneakers. “It’s not hard for you anymore. Eventually, you’ll become a pro at double knotting your shoes too.”

She smiled.

I tied the sneakers.

This is not the hand of cards I expected to be dealt when I had kids. However, to riff off of the quote from author Cheryl Strayed, I’m trying to play the hell out of the cards I’m holding.

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An Artsy Celebration

Isabelle has enjoyed doing art for the past couple of years. She’s taken a couple of art classes. However, despite the instruction, most of her masterpieces look like this:

or this:

I appreciate these pieces since they feel like modern art. However, there aren’t any discernable objects most of the things she creates. Ever since the ocular motor dysfunction diagnosis, I understand why she struggles. Therefore, when I picked her up at art class this afternoon, I looked at her oil pastel creation and felt tears prick my eyes. But they weren’t tears of sadness; they were tears of happiness.

“Is this a self-portrait?” I asked.

“What do you mean?” she responded.

“Is this a picture of yourself?” I asked.

“Yeah, how did you know?” she replied.

“Because it looks like you, honey!” I responded.

Sure, her eyes aren’t that big nor are her lips aren’t that red.  But I could tell it was a self-portrait prior to reading note the teacher sends home with each child.

 

One of the things I adore about Isabelle’s present art class is that her teacher sends the kids home with their artwork + with an explanation of the artist whose work they studied (in addition to their task).

 

“You should be very proud of yourself,” I told my daughter. “This is a masterpiece! We should hang this in your garage gallery.”

“Okay,” she said as a small smile spread across her face. “When can we hang it up?”

“We have lots of other pieces to hang up along with this one. Would this weekend be okay?”

“Yes!” she replied with more enthusiasm.

Progress takes time. Today was a reminder that she may be taking small steps forward, but they are, indeed, forward.

When the end isn’t in sight.

Getting a few minutes of “peace” with a heating pad on my shoulder.

We are approaching the four-year anniversary of clinical speech therapy. I say we because I’ve been the one driving, observing, and following-through with Isabelle’s at-home practice. And while I used to think the end was in sight for speech therapy, we’ve recently learned it isn’t as close as we originally anticipated.

Tuesday afternoons have been the day we typically devote to OT, PT, and speech for Isabelle. This afternoon, when I picked her up early from school, she seemed more indignant about leaving than usual. And quite frankly, I couldn’t blame her. I’m exhausted from all of this therapy too. I wish I could just be fun-mommy rather than mommy-speech, mommy-ot, and mommy-pt. But that’s not in the cards for us… at least not yet.

This afternoon, I had physical therapy on my shoulder (Yes, my shoulder… again!) while Isabelle had speech. I was closing out my session with pendulum exercises in the main gym when Isabelle and her speech therapist came looking for me.

“How’d she do today?” I asked her speech therapist.

“Well, she was a little sassy at first, but she pulled herself together and did great.”

I looked at Isabelle and said, “Remember, if you want to earn a week off, you have to do your work and listen to your therapists.”

“I know,” she said begrudgingly.

After I got the debrief of the session, I hustled Isabelle to the bathroom. Then we returned to the gym where my physical therapist wrapped my shoulder with an ice pack while I listened to Isabelle read aloud from her just-right books. Within a minute of her finishing, her physical therapist found us. It was time for her second of three appointments today.

“She’s not in the n-i-c-e-s-t mood today,” I warned her physical therapist.

Her physical therapist nodded knowingly. I’m sorry, I mouthed.

I don’t want to be here any more than Isabelle wants to be here. Unfortunately, this is the hand we were dealt.

I was about to go into full pity-party mode when I glanced around the gym. There were people who could barely walk who were trying to regain their ability to put one foot in front of the other again. There was a man being assisted by two women to stand up from a wheelchair. I took a deep breath and remembered to have some perspective. We won’t be here every Tuesday for the rest of our lives. Eventually, this will pass.

Therapy Services by Mommy

“You should stay off the roads if you can.”

Those were the words of caution from the local weather and traffic people on ABC and CBS this morning.

It snowed overnight. The wee hours of this morning brought freezing rain. It’s almost 10 a.m., which means it’s warming up and just raining.

The words of caution echoed in my head as I sat at my makeup table and applied liquid foundation. Maybe today was a day to skip taking Isabelle to speech and OT. After all, we didn’t HAVE to be on the roads. Yes, we had her weekly appointments, but I could do her therapy sessions today.

By the time I applied translucent powder, I decided we’d stay home.

Ten minutes later, I informed Isabelle about my decision. “We’re not going to see Marie and Jena today because of the weather.”

“But what are we going to do?”

“I’m going to work with you at home.”

“Oh,” she replied. I don’t think she was sure about how she felt about that.

Our schedule (once we finished everything).

After breakfast, I let her have 20 minutes of play time while I got ready. She choose OT first, which required more prep work out of me. Thankfully, the internet was ready for me. I know she’s been having trouble with the letters U, V, and W, so I printed out a bunch of letter pages, plus some worksheets to help her practice diagonal lines. Then, I created a schedule. Once the timer went off, I went into her play room, armed with a plan.

We had a rough start when I reviewed the plan since she kept peering out of the window to watch the high school girls walk to the bus stop.

“Do you need me to close the blinds?” I asked.

“No,” she snapped.

“Are you sure?”

“No,” she said.

We closed them together.

Finally, once her eyes were on me, not on the street, we got to work.

1) We practiced cutting straight, zigzag, and curvy lines. Then, I had her cutting squares and circles.

2a) Lots of diagonal line practice!

 

2b) Moving on to letter practice.

3) Time for some weight bearing fun on the stability ball.

4) We colored a castle in a Priddy coloring book.

5) We practiced some basic dance steps to “Blue Dress,” which is the song she selected.

I have 10 more minutes left while Isabelle listens to music and plays with her train set. Then, speech begins! Thankfully, we have more than enough apps and speech cards hanging around the house so there’s not much prep work for me to do.

Uppercase & Lowercase Letters

Isabelle copies her full name on the back of a picture she colored for her OT.

My daughter’s occupational therapist does a progress monitoring every 12 weeks. Today was the day to review Isabelle’s goals to see whether or not she’s met them, and to set new ones. We had a big decision: keep working with uppercase letters or set a new goal for lowercase letters. You see, my kiddo turns five next month (HOW DID THAT HAPPEN!?!??)  so it’s “time” for her to start using lowercase letters in her writing. But… she’s not ready. At least not yet.

While she can comfortably write the letters in her name in uppercase, she isn’t as independent with letters that aren’t in her name. Even though it looks like she’s mastered the letters when she uses apps like Letter School, Ready to Print, and Writing Wizard, she hasn’t mastered making all of the uppercase letters on paper. Letter School is the best with the gradual release of responsibility, but the transference to paper isn’t there since a blank sheet of paper doesn’t remind you where your pen should go!

“Do you want to include lowercase letters in her goal now that she’s turning five?” Jena repeated.

I thought a little more. We push-push-push Isabelle so much. And she rises to the occasion nearly ever time. But this isn’t something I wanted to push yet.

“Can we put it off another three months?” I asked.

“Yes. But we should include it in her next set of goals,” Jena replied. “She’s going to need to know her lowercase letters once she goes to Kindergarten. We need to start working on them soon.

“Okay,” I said. I could live with that.

So instead of setting a lowercase letter goal, we set an uppercase letter goal that Isabelle would begin to copy words with a variety of uppercase letters. In fact, she started just moments after the goal was written.

Isabelle had colored a couple of pictures while I was speaking with Jena. On the back of the pictures, Jena asked Isabelle to write “To: Jena” and then she had to write her full name (first, middle, and last, which is a total of 23 letters!). It was a lot of work, but Isabelle did it with minimal complaints and a reasonable degree of accuracy. In fact, she was VERY proud of herself for being able to write all of those letters on the back of her coloring page. She even posed for a photo holding up her paper with all of the writing.

That’s when I knew we set the right goal. All kids need to feel successful. They need attainable short-term goals they can accomplish rather than being frustrated by goals that are too hard.

A lot can change in three months. And besides, being 5 1/4 isn’t too old — at least not in my book — to start working on lowercase letters.

Head over to http://twowritingteachers.wordpress.com for more slices of life.

A Letter to Isabelle

Isabelle and I attended her new preschool’s open house this afternoon. It took awhile, but eventually she was comfortable enough to start playing alongside a friend.

I’ve been recuperating from the surgery I had on August 12th. I haven’t written since August 11th. Earlier today my father told me, “you’re back to reality now. Start writing again.” (Thanks for the tough love, Dad!) So here I am.

I’m taking some inspiration from a piece Dana Murphy shared on Facebook last weekend.  It was written by Glennon Doyle Melton. I read it as her way of preparing herself to have a conversation with her son about being compassionate to others.  And it reminded me of a conversation I want to have with Isabelle before she starts her second year of preschool this week.  In fact, this conversation has been on my mind ever since I overheard her say, “He holds his marker like a baby,” about one of her peers after she learned how to properly hold a writing utensil this past March.  She starts school on Thursday so here’s my letter to Isabelle (which I’ll use as fodder for the conversation I will have with her tomorrow).

Dear Isabelle,

You start preschool this week. Well, one of the two. The other one starts after Labor Day. I can’t believe you’re going to be out of the house, doing some type of school, every weekday this school year. Sometimes I wonder if it’s too much school for a four-and-a-half-year-old… But you love your first preschool so hopefully you’ll love the second one too.

But that’s not what I want to discuss. Instead, I want to talk to you about struggling and kindness.

Struggle is defined as proceeding with difficulty or with great effort. I hated to watch you struggle to crawl, to stand, to walk, and — most of all — to talk. Things haven’t come easily for you.  You’ve exerted great effort to attain every goal you have reached.  And while I could look at those struggles as weakness, I’ve reframed them in my mind. You have an excellent work ethic.  You’re tenacious.  You have grit.  And that’s why you’ve been able to overcome your struggles.

I know you will continue to struggle with things in school.  And that is okay.  Everything happens for you. However, things often happen later than they do for your peers.  And while you might have to work harder to attain things that come naturally to other kids, I’ve come to believe it will make you a stronger adult since you’ll know what it is like to work diligently to do something.

You’ve overcome so much in the past two and a half years since your CAS diagnosis.  I am so proud of everything you’ve accomplished in speech and in OT.  And while I know you’ll have to continue to work at things, I know some things may actually be easier for you (e.g., using scissors, imaginative play, following classroom rules) than they will be for some of your peers who haven’t had as much practice as you at doing some of those things.  And that is okay.  Just because someone cannot do something you can do doesn’t mean they are a “baby.”  All it means is they haven’t mastered that skill yet.

It is important to stay calm if someone’s actions, behaviors, or habits annoy you. Trust me, I know from experience, that’s really hard to do.  But part of being a good friend is being patient.  And part of being patient is being a kind person.  Instead of making someone feel bad if they cannot do something as well as you, you can show them how to do it (if they want your help).  And if they don’t want your help, you can play together or do something together both can do.  We want to make our friends feel good.  Being sweet towards others usually makes people happy.

When given the choice between being right and being kind, choose kind.

I hope you’ll be the kind of person who chooses to be kind, especially when you see a friend struggling.  That’s what I’d want for you if you were struggling.  I hope you’ll choose kind, again and again and again.

I hope this year is filled with happiness and growth. I look forward to watching you develop into a confident five-year-old this school year.  I hope life hands you an easier path — one that’s not riddled with struggles — in the years to come.  But if it doesn’t, I will be your biggest supporter — always.

Love,

Mommy

Head over to http://twowritingteachers.wordpress.com for more slices of life.

Celebrating a Milestone

Six Months. It took six months of hand-over-hand and verbal cues. It took six months of Handi-writers, foam, and cotton balls tucked under her pinkie fingers. It took six intensive months (really 12 months, but only six were intensive) of practice with occupational therapists.  It took six months of me reminding, nagging, and begging.  It took six months for Isabelle to use a tripod grasp to hold a writing utensil. And as of today, she’s been using a “big girl grip” for a week straight! Her OT let her pick a prize, which was a very exciting way to celebrate this accomplishment.  😃



Isabelle played with her reward after eating some pizza for lunch.



Grilled Chicken, Fries, & Apple Juice

We watched one of the roller coasters, top, do a test ride in Hersheypark after lunch (which is featured in the bottom pictures).

Tuesdays are the busiest day of our week now that Isabelle is in school*.  And when I say busy, I mean BUSY.  She has three therapy sessions from 9:00 a.m. – noon.  Seriously! I’m just doing the driving (48 miles’ worth) — she’s doing the work!

Her music therapist is available on first-thing on Tuesday mornings so we are in her office by 9 a.m.  Isabelle sings, dances, follows directions, works on turn-taking, and more.  Then we head to occupational therapy, where she has a 30 minute session (as opposed to the 45-60 minute session she has on Thursdays) since we don’t want to burn her out before speech therapy, which is the final session on Tuesdays.   Her occupational therapist works with her on a variety of things that require motor planning, which she struggles with.  She’s making great progress, but she’s only started to make progress with this second private session each week.  Therefore, I couldn’t cut it either.

I didn’t love the idea of packing three therapies into one day, but it had to be done.  Childhood Apraxia of Speech requires repeated practice with speech during the week. While I do lots of home practice, there’s no substitute for her working with her a trained speech-language pathologist.  Therefore, she sees her on Tuesdays and Thursdays.

As long as Isabelle works hard in her sessions (THANKFULLY, she almost always works hard! The kid is a trooper with a growth mindset, which is why she’s my hero!), we do something special afterwards. However, by the time she’s finished on Tuesdays, it’s lunchtime. She wanted to go for pizza today.  I had pizza at the Apraxia Support Group meeting last night and last Thursday after her OT/speech sessions were over.  My waistline couldn’t take anymore pizza.  So, I mad three other suggestions.

“Mommy just ate pizza last night.  Let’s go somewhere else.  Do you want to go to Chocolate World?”

“No,” she replied.

Who is this little person?!?!?

“Uh, okay. Well, do you want to go out to lunch?”

“Yes. Pizza.”

“Not pizza.  How about Panera, Chocolate Avenue Grill, or Devon?” I asked.

She considered her choices.

“Seh-dehn,” she replied.  (I knew that meant Devon. Her verbal errors in that word are so off, but once I figured out what she meant by Seh-dehn a few weeks ago, she smiled.)

Head over to http://twowritingteachers.wordpress.com on Tuesday for more slices of life.

“Really?” I asked.

“Yes! I wan chih-kihn, fiez, and apo jus,” she replied matter-of-factly.

“Well, let’s get in the car and go out for a special lunch,” I said.

She repeated her order again after I buckled her up in the car.  Grilled chicken, fries, and apple juice.  I smiled.  At least she knows what she wants!

Devon is not the kind of place I normally take a three year-old for lunch.  It’s more of a Saturday night type of restaurant.  But after she worked SO hard and willingly sacrificed her pizza lunch so I could eat a salad, how could I say no?

So we went.

*=On Mondays and Fridays she receives services at school.  Wednesdays are her “free” day so-to-speak.  No therapy services at school.  Must feel like a weekend to her.  I’m not sure.  I try not to bring it up.  Therapy is a way life when you have Childhood Apraxia of Speech.  Going to therapy appointments is our “normal.”

 

The Demands on a Toddler

Isabelle colored with a purple crayon today. Afterwards, she cut out a purple frame with her OT’s help.

Every day — every single day — we ask toddlers to go out of their comfort zone and try something new.  Every day — every single day — we ask toddlers to take a risk.  Every day — every single day — we ask toddlers to do things for which they may not be developmentally ready.

For the past seven months, my daughter’s occupational therapists have asked her to use scissors.  At first I felt sad watching her try grip the scissors.  She often held them upside down.  It took her months to cut along a thick, straight line using self-opening scissors.  While her cutting isn’t perfect, she’s able to do it with some adult assistance.

Today, when she was at OT, I asked her occupational therapist why cutting was being stressed right now, while she’s still three and a half.

The answer I got in response was one I didn’t expect, but should’ve.

She told me scissor use isn’t developmentally appropriate until age five.  However, she teaches kids as young as three to cut since there’s an expectation they’ll know how to it independently by the time they reach Kindergarten. That’s right.  SCISSORS ARE SUPPOSED TO BE USED INDEPENDENTLY BY AGE FIVE! However, she knows if she doesn’t teach kids how to do it now, they’ll be behind.  Same thing goes with pre-writing skills and so many of the other things she has to work on in OT. Of course, this led to a conversation about the time spent teaching to the test in public school. By the end of the session, the two of us were tired of thinking of all of the time kids aren’t spending PLAYING because they’re working in school!

I trust my daughter’s OT, but still came home to do some research of my own. Could scissor-use really be an expectation at three years-old?  Well, it depends on the source.  I found one source that says a two year-old should be snipping with scissors, while another says five years-old is when a child should be able to consistently cut on a line. (NOTE: There’s no way I would’ve handed Isabelle scissors prior to her third birthday, regardless of who told me to do so!) And, of course, I found something that had a variety of scissor milestones starting at age four.

I haven’t been pushing the scissors at home for the past few months since they tend to make Isabelle miserable. Of all of the things we have to work on, using a scissor isn’t at the top of my list.  However, I don’t want her to be behind either. While I’m not about to start printing out oodles of things for her to practice cutting from Pinterest (Yes! There are tons of scissor skills pins out there.), I am going to reinforce the things the OT is working on during her weekly session.  It’s all about balance, what’s good for your kid, and remembering what is developmentally appropriate.