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