Facebook Memories #SOL20

Most mornings, I begin my day by looking through my Facebook memories from past years. This morning, a memory from eight years ago popped up. On my lap was an almost-two-year-old Isabelle. The caption read:
Today I’m thankful Isabelle’s ear tube surgery went well. She’s just tired & a bit groggy now. (Though she’s happy watching Maccabeats videos in the recovery room.) It is my hope her speech will develop over the next few weeks.

Every year, on this date, I look at this photo and remember how Marc and I clung to each other (and bawled) when Isabelle was wheeled into surgery. By the time we composed ourselves, the surgeon met us in the waiting room with news that everything went well. (Ah, first-time parents!)

In the post-op recovery room with Isabelle who we used to call Izzy. Speaking of “Izzy,” by the time she was 3.5 years old, her speech was good enough to declare, in a complete sentence, “Call me Isabelle, not Izzy!” As you can imagine, we ceased using her nickname immediately.

There’s something else I remember. I’ll be honest, thinking about it makes my blood boil — just a bit. And while I probably shouldn’t write about it, I am going to write about with the hope that it will help someone else — either someone whose child is struggling with speech or someone who knows someone whose child is struggling with speech — who is going through something similar.

I remember how nearly every other parent I knew — whose kid had gone through ear tube surgery — had told us that their child was speaking within days, sometimes hours, of waking up from the surgery. As you can see from the caption I wrote in November 2013, I wrote that I hoped Isabelle’s speech would develop over the next few weeks. The only reason my expectation was tempered was because Isabelle’s wise speech therapist, at the time, had already suspected Childhood Apraxia of Speech. She warned me, ahead of time, not to view a double myringotomy as a silver bullet. Thank G-d she did because I would’ve been crushed if she hadn’t given me some warning about how quickly the surgery might help after months of Isabelle’s tubes being filled with fluid.

I know the parents of kids whose children’s speech was helped by ear tubes were trying to provide me with reassurance. Really, it was false hope. And while I don’t begrudge anyone, I share this because promising someone that their kid will be speaking quickly after ear tube surgery feels only slightly less frustrating to me now as the folks who insisted, “Einstein didn’t talk until he was three,” when Isabelle wasn’t speaking after turning two.

People say and do things they feel are helpful. However, as the mother of a child who was luckily diagnosed with Childhood Apraxia of Speech at 27 months old (before most kids can reliably be diagnosed due to their lack of cooperation with the tester), I know how heartbreaking it was to watch Isabelle get frustrated at a young age when she didn’t have expressive language skills. Unless your child was diagnosed with a speech-related disorder, reassurances do little for a parent who is the thick of things with their child who is having trouble communicating. Rather than offering platitudes or advice, if you know someone whose child is a late talker, just listen. The other enduring present you can give to a parent whose child is struggling to communicate is wait time. I grew closer with moms who took the time to understand Isabelle long before she was easily understandable. They’re the moms who knelt down, leaned in, and did their best to understand my child. Those are the women whose friendships I will always treasure since they showed me that my daughter, and what she had to say, mattered.

Advertisement

On Determination & Grit

When Isabelle was little — and words were beyond challenging to utter — I noticed she would keep practicing. Isabelle wanted to understood so she kept trying. To hear her now, you’d never know she was diagnosed with CAS at 27 months old. Even today, on the occasions when her mouth can’t say the words her brain is thinking, she perseveres.

Isabelle joined swim team this summer. It wasn’t a try-out swim team. While everyone wants to win, the coach assured me his goal for Isabelle was to help her become a stronger swimmer and to do her personal best at swim meets. Both of those goals were met when swim team ended on July 6th. She shaved time off her freestyle and backstroke times every time she raced!

On July 9th, Isabelle started day camp. I pushed her to take the deep water test since I knew she could:

• Swim across the pool (from deep to shallow) without touching
• Tread water for 15 seconds
• Float for 15 seconds

What I didn’t know — until after the first time she failed the test — is that she didn’t pass because she didn’t keep her head down to breathe. As a seven-year-old kid, she doesn’t breathe properly when swimming freestyle. Rather than complain (Safety first!), I asked if she could swim backstroke across the pool. That request was denied. She’d have to swim freestyle and breathe properly (to the side rather than lifting her head) or she wouldn’t pass.

After she failed for the first time, last Thursday, I told Isabelle I was proud of her for trying and that she didn’t have to take it again. (After all, you can’t learn how to do side breathing overnight.) The next morning, Isabelle grabbed her swim team swim cap and told me she would try again.

And she did.

She didn’t pass again — even while wearing the swim cap.

I learned she didn’t pass for the second time when we were writing in her line-a-day notebook. She had been holding it in for about five hours. But when Isabelle told me, she didn’t seem sad. Rather, she seemed determined to try again. In fact, she requested a lesson with her swim coach (which I set up for this weekend).

Today, Isabelle didn’t pass for the third time. She told me she was going to try again tomorrow. She’s prepared to side-breathe as best as she can. Seeing as I know she will most likely not pass again, I wanted to talk to her about how she might need to try again and again and again before she will be given the green light to go into the deep water during free swim. So, I read her Ashley Spires incredible book at bedtime:

My favorite line — from Isabelle — when she saw the girl toss a broken prototype over her shoulder was, “I can’t throw away the pool.” No, she certainly can’t.

I don’t know if Isabelle will pass the deep water test — due to the side-breathing she hasn’t perfected — this summer. Taking a deep water test again and again, rather than giving up, is incredible. No matter what the final outcome, I am beyond proud of Isabelle’s determination to keep trying to pass the test.

I Love You and Bye-Bye

I was going through the camera roll on my phone earlier and noticed a 37-second video that I accidentally shot. I watched and listened. It captures the final moments of my parents’ five-day visit to our home. It is raw, unscripted, and bumpy. I thought about deleting it, but instead, I uploaded it to YouTube and am calling it my slice of life story for today since it marks me remarking on Ari trying to say some very special words to my parents: “I love you.”

Last night, without any prompting, Ari attempted to say “I love you” to Isabelle. Today, he did the same thing to my parents as they went home. Even though I’m not keeping track of his words, I am keeping track of milestones and this felt like a milestone worth preserving.

As accidental as the video was, I felt the need to pull out the voice memo recorder on my phone to try to replicate the “I love you” I had heard earlier in the morning. Here’s what I got:

Pretty cute, eh?

“Don’t call me Izzy!”

Long ago, before my daughter could even speak words, she went by the name “Izzy. But as soon as she could string words into sentences, my daughter declared “Call me Isabelle.”

Like many parents of late-talkers, I did nearly anything my child requested once she started speaking. Calling her Isabelle, instead of Izzy, wasn’t a big ask. Isabelle is her given name. I adore the name since it sounds a little old-fashioned and very French.

Through the years, there’s been an exception to the Isabelle rule. The rule was implemented by Isabelle. Our neighbors (meaning the people who live in our subdivision, but not in our house) could continue to call her Izzy. But everyone else had to call her Isabelle. There were no exceptions for family members, classmates, synagogue members, doctors, or anyone who knew her before she made this declaration.

A few months ago, Isabelle informed us Ari would be allowed to call her “Izzy,” since it would be easier for him to say once he started talking. (He’s begun to make sounds for “hi” and “no” so he has time before he articulates a proper name clearly.) We were impressed with Isabelle’s willingness to make an exception to the nickname rule.

But it didn’t stop there. Isabelle allows us (meaning her parents and grandparents) to refer to her as Izzy in Ari’s presence. While we still call her Isabelle, we use her given name and her nickname interchangeably when Ari is around.

So imagine my surprise when I got in trouble for calling her Izzy this past weekend when we were at Hersheypark in front of her friend Eli! Our families (four parents and four kids) spent the afternoon together at the park. We were enjoying a sweet snack when I referred to Isabelle as Izzy. I didn’t think twice since Ari was sitting with us at the table. A second later, Isabelle shot daggers through me. I don’t remember her exact words, but she told me — in a stern and direct way — not to call her Izzy (in front of her friends).

I won’t make that mistake again. But that being said, I never thought a nickname would have rules attached to it!

 

Go to http://twowritingteachers.org for more slice of life stories.

 

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.

These are our mornings.

Isabelle has been enjoying day camp. Like most kids, she comes home exhausted. There’s no way I could get her to sit with me to do her speech work at 4:00 p.m. after a day in the sun and heat. (And it’s been hot and humid this summer!) Therefore, we’ve been doing her speech work after breakfast, before we leave for camp, every weekday morning.

After breakfast, she asked to sit on my lap (what’s left of it now that I’m on the cusp of my eighth month of pregnancy.) We sat together and sang songs, like “Trot Old Joe,” for a few minutes. Then, it was time to practice. And you know what? This morning, I decided it’s not fair. While she rarely complains about sitting down with me and the iPad at 8:00 a.m., I felt angry.  I wished we could sit together and sing songs, but I knew we had to start practicing.

It’s been a little over three years since her Apraxia diagnosis and we still work on her talking EVERY SINGLE DAY. And while she’s made enormous strides and can communicate with others, it struck me this morning that she’s worked harder at the age of five-and-a-half than most kids her age! I know this will serve her well in life. She’s got grit, determination, and a better work ethic than many adults. But it’s still not fair.

This morning, just before we fired up Articulation Station on the iPad, I said to her, “I want to take a picture of you sitting here and working beside me.”

“Why, Mommy?”

“Because I want you to know, when you get older, how hard you worked for every word you have. I’m so proud of you and how you never quit.”

I took this selfie right before our practice session began. Afterwards, I morphed this photo into a watercolor of the two of us sitting side-by-side using Waterlogue.

We’re worked on /s/ blends and initial /th/ sounds this morning. Here’s a listen into part of our practice session.

 

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

Words That Rhyme

We read lots of books that rhyme, but until very recently, Isabelle hasn’t been able to form rhymes of her own. In the past two weeks, Isabelle has been making connections between words that rhyme. It’s usually one or two pairs of words per day. I love hearing her rhymes when they happen. Well, most of the time.

Today things got silly.

We were practicing articulation after school. She came up with two words — phone and bone — that rhymed. I was delighted. Perhaps too delighted. After making two more rhymes with her practice words her rhyming ability went off the rails. She began making up nonsense words to make them rhyme. While initially cute, it turned our no-more-than-15-minute practice session into a half hour. (Like most kids, she doesn’t want to sit down to practice her speech after school. Hence the reason I promise a short, intense session.)

After about five minutes, I started recording. (I couldn’t resist.)

Robe and bobe? Robot? Rowboat? Oh my!

We’ll keep working on rhyming.

How do you pronounce New Jersey? #sol16

Like any mom whose kid has CAS, I am always listening to my child’s speech with heightened awareness. Lately, I’ve been noticing Isabelle has been having trouble with the vowel sound in words like first, fur, glitter, hammer, her, Jersey, and sure. (New Jersey is the one that initially triggered my concern since Isabelle has been saying “New Joisey,” which sends shutters up and down my spine!) I’ve tried correcting her, but I haven’t been able to correct her mouth posturing. Therefore, I brought this issue to the attention of her speech therapist this morning.
Isabelle’s speech therapist worked tirelessly to determine where the problem was occurring so she shuffled through a bunch of /r/ words with vowels. She determined the issue was mostly with the medial /er/. Now, I have word lists and am armed with ways to help Isabelle fix her mouth so she can pronounce the words correctly (i.e., encourage her to pull back her lips into more of a smile when she says the medial /er/, rather than allowing her to round her lips when she makes that sound).
Like all of the articulation things we work on, this will take practice and patience. I know we’ll get there. A little humor will go a long way. So, in that vein, here’s part of a funny conversation I overheard between Isabelle and her speech therapist when they were trying to fix up the pronunciation of Jersey this morning.

 

Apparently, if you change the name of the state, it will be easier to pronounce!

 

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.

A Cup for Water

Here she is! She got the plastic cup she requested WITHOUT having to repeat herself or with me chiming-in to clarify what she said.

If you’ve never had or worked with a child who has fought for every word s/he says, then you probably won’t understand why something as small as what I witnessed this afternoon feels so monumental. But my kid has fought for every single word. And that’s why things that might be commonplace for a child with typically-developing speech feel so huge.

We were snacking with friends at the Midtown Scholar Bookstore when Isabelle declared she wanted another apple juice.

“Too much sugar. I’m not getting you another apple juice,” I replied. (Remember: This kid has been eating Halloween candy for the past week!)

“I’m thirsty,” she declared.

“You can have some water,” I replied.

“Okay,” she conceded.

“Let’s go to the counter and ask for some water.”

I stood up, took her hand, and led her to the cafe. Just as we approached the counter she broke away from me. She climbed on a foot bar, looked at the barista, and said, “I’d wike a cup of wada, please.”

I froze a couple steps behind her. My mouth hung open. Did I just see what I thought I saw? Who was this confident kid? 

Even though her words weren’t perfectly clear, the barista understood her. “Here you go,” he said handing her a plastic cup. “Go over to the soda fountain and press the button for water. It’s beneath the lemonade.”

Once I finally found my words, I thanked the man and praised Isabelle. I don’t remember my exact words to her because I was gushing. I told her I was proud of her for using her voice to ask for something. I told her I was delighted she took the risk to speak to someone who she thought could help her get what she wanted. I told her I was thrilled she used good manners without me having to remind her.

This doesn’t happen every day. In fact, it rarely happens. Getting Isabelle to order in restaurants is hard. She rarely does it unless she feels very comfortable. I think it’s because she knows she’ll most likely be misunderstood and that bothers her. I never would’ve expected her to do something like this in a place where she’d only been once before. But she did. And for that reason, I’m a very proud mama tonight.

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