I Wish You More

Amy Krouse Rosenthal is a fantastic children’s picture book author. We’ve come to love many of her books, especially I Wish You More, in our house. (In case you missed Amy Krouse Rosenthal’s recent Modern Love essay in The New York Times, then you’ll want to read it now before you read the rest of this post. In fact, you should click on the link NOW because I don’t want to be the one to deliver bad news to you if you’re a fellow AKR fan. Warning: Have tissues nearby when you read her essay.)

In an effort to pay tribute to Rosenthal before cancer takes her from this Earth, Chronicle Books is encouraging their patrons to share what we wish for those we care for in the spirit of Rosenthal’s picture book (I Wish You More).

As soon as I finished the Chronicle Books piece, I rushed to my computer and printed the I WISH YOU MORE card. I knew exactly who I wanted to give it to and the message I wanted to send. However, it took me awhile to find the right words.

For those who don’t know, my daughter was diagnosed with Childhood Apraxia of Speech, or CAS, when she was 27 months old. In the almost four years since her diagnosis, she has learned to speak beautifully. While there are times when she still struggles to get her words out, those instances are fewer than they were in the past.

What you may not know is that 30-40% of kids who are diagnosed with CAS are later diagnosed with language-based learning disabilities. While I’ve been told a formal diagnosis of Dyslexia is usually not made second-grade (because one needs to see a child is two years behind grade-level), there are tests that can often show the writing is on the wall for having a language-based learning disability.

Unfortunately, the writing is on the wall for my kiddo. As a mother and a literacy specialist, it makes me sad. (It makes me lots of other things too, but I’m going with sad this morning.)

Today, my kiddo begins working with two new people. One is a school-based reading specialist who will pick her up with one other peer to provide assistance with things like rhyming. The other person is a private reading tutor we’ve hired to work with our daughter. She’ll be using the Orton-Gillingham sequence with her. It is our hope that with early support, we’ll be able to avoid a Dyslexia diagnosis once she’s in second grade.

Last night, before I retired to my bedroom, I left the little lady a card on her placemat. I made sure I was downstairs when she sat down for breakfast. (My husband usually gives her breakfast.) I asked her if she knew what it said. She read the first three words, but got stuck on the fourth word: wish. Rather than frustrate her by asking her to use her strategies to figure out the word wish, I read the card to her. Despite the lump in my throat, I held back tears and explained what my words meant.

I told her I know reading is hard for her.

I told her new people would be working with her today.

I told her she’d be missing class — twice — to work with these new people. (She balked and I gently reminded it will help her.)

I told her these people would help her learn new strategies to figure out tricky words, like wish, so she could be a more confident reader.

I told her she would learn how to become a brave reader.

I told her I’d be here to help at home.

After we finished our talk, she ate breakfast. I asked her if she wanted me to put the card in her backpack. She said yes.

Later, when I buckled her into her seat to go to school, I asked her, “What are you going to do with the card?” I figured she’d tell me she’d keep it in her backpack.

“I’m going to put it in my cubby,” she replied.

I smiled. I hope she looks at it when she gets frustrated. I hope she looks at it when she feels like it’s hard. I hope she looks at it and remembers to try things even when she’s afraid to say the wrong thing.

As a person who is trained to work with young readers and writers, it’s hard to step aside to let someone else help my kid. However, as my daughter’s developmental pediatrician told me, I’ve already done so much. If I do any more to help my daughter, I risk ruining our parent-child relationship. And I don’t want that. Therefore, today I am taking a step back and letting other people help her move forward. As a result, I’m wishing myself the courage to let go and see where this takes us.

UPDATED at 12:30 p.m.: About an hour after I hit publish on this post, I learned of Amy Krouse Rosenthal’s passing.

Very sad news: Amy Krouse Rosenthal, author of more than 20 books for children, died this morning from cancer. pic.twitter.com/ge9EnhLpfx

— Children's Bookshelf (@PWKidsBookshelf) March 13, 2017

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Silenced (A Slice of Poetry)

Betsy challenged us to try some poetry for our slice of life stories the other day.  My heart was heavy after leaving synagogue with my family today. I decided to do a quick write about what I was feeling in a new “Poetry” notebook in my Noteshelf App. From there, I crossed out unnecessary words and looked for the meatiest parts.  Here’s the poem I came up with:

Silenced

You can sing the songs.

Sing them today.

No.

Are you embarrassed?

Are you worried

you won’t sing the right words?

Yes.

It’s taken you a long time

and practice

to speak.

It’s okay

if you don’t get

the words right.

Other kids

won’t sing the right words either.

{Disbelief.}

“Shalom Everybody”

{Lips didn’t move.}

“Barchu”

{Lips didn’t move.}

“Shema”

{Lips didn’t move.}

“Little Shabbat Candles”

{Lips didn’t move.}

“Dinosaur Knocking at My Door”

{Lips didn’t move.}

“Bim Bam”

{Lips didn’t move.}

My heart breaks.

She’s fearful

of making a mistake.

One day

I hope she finds freedom

to use her voice

in prayer

and

in song.

 

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Pomp and Circumstance

Isabelle and Joanna at the piano during today’s session.

I’m going to tell you something parents of typically developing kids don’t know. Therapists, whether they are speech therapists, occupational therapists, or music therapists, become your child’s friends.  Maybe that sounds sad to you.  And in a way it is.  But the truth of the matter is that therapists who help your child from an early age take the place of play dates.

Just prior to Isabelle’s Childhood Apraxia of Speech, or CAS, diagnosis in April 2013, she received two speech sessions and one OT session each week. As soon as the diagnosis was given, more therapies came into the mix.  At the height of 2014, Isabelle had between six to eight therapy sessions each week. Speech three times a week, occupational therapy two – three times a week, music therapy once a week, and physical therapy every other week.  That kind of intensive therapy schedule doesn’t leave a lot of time for play dates. I wish she had spent more of the past year playing dolls or building with Legos alongside a friend. However, I was told her three-year-old year would be a year of growth in terms of her speech development if we devoted our time to intensive therapy and a lot of home practice.

What is an appropriate gift for someone like Joanna? I had no clue. There’s no dollar amount that would be enough. Therefore, I wrote her a heart-felt letter.

Isabelle’s final day of music therapy was today.  She wasn’t discharged per se (i.e., her music therapist is transitioning to being a full-time music therapist within the Early Intervention system). However, it became a graduation day or sorts, so we celebrated.

Isabelle’s music therapist, Joanna, began working with her in April 2013.  Joanna began co-treating with Isabelle’s speech and occupational therapists right after the CAS diagnosis. That month, Isabelle was producing 31 words (i.e., substitutions and approximations counted for words back then. “Ba” counted for seven of her 31 words: baby, bottle, sheep, block, cup, bed, and bus). Three months later her word productions more than doubled! Part of that massive growth was due to the CAS diagnosis and strategies we implemented to help her speak.  The other part of that growth was due to Joanna, who helped Isabelle turn her sound productions into words.

Over the past two years, we’ve seen Joanna nearly every week.  She has helped our family incorporate music into routines, in addition to helping Isabelle produce better sounds and words.  She’s written songs to help Isabelle with concepts (e.g., up and down, on and off, open and close), for motor planning (i.e., “Hand on Top” was a song to help Isabelle hold her spoon correctly when self-feeding), and to help her participate in holidays (i.e., a simple thankfulness song for Thanksgiving to the tune of “Hot Cross Buns”).  She introduced Isabelle to the drums, piano, guitar, xylophone, and more.  I could go on, but I think you understand, Joanna has impacted Isabelle’s development in numerous ways.

Diploma

Perhaps that’s why my eyes got misty when Joanna presented Isabelle with a certificate of graduation from music therapy.  She read it aloud to Isabelle, which made me emotional.  We have come SO FAR.  I know there’s more work to do in terms of Isabelle’s speech and motor planning. Thanks to wonderful therapists, like Joanna, we are in a much better place today than where we were two short years ago.

 

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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.)

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“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.”