Her Words Will Come

July 15, 2018 cl/cp, Craniofacial, Family Stories, July 2018 Feature - Craniofacial, speech delay, speech therapy 8 Comments

A few weeks ago my husband and I and our four kids were at Legoland for a day of fun in the California sun. My four kids are all what you may call opinionated, independent, and vocal. Our youngest may be the sassiest of them all, but she also has a profound expressive speech delay. I was at an area for younger kiddos where my children had insisted on running through the line by themselves as I looked on from behind a roped fence.

My kids, one by one, were asked by the Legoland attendant to make a choice as to which slide experience they wanted. I’m pretty sure I held my breath as my youngest approached her turn. Her brothers will often interpret for her, as our family seems to speak her language better than others outside our little home tribe. But her brothers were ahead of her and she was on her own for a moment with nothing but her own abilities to communicate her desires to this stranger.

With calm excitement she used her words to communicate her choice. And with minimal gesturing the attendant replied,

“You want to ride the blue one?”

“Yesh!!” She nodded, eyes wide and excited.

It may seem like the most mundane of moments, the most minuscule of milestones. But our baby girl was understood by a stranger without our help. It was huge! Like I was nearly in tears in the middle of Legoland, huge!

Lest I give you the impression that one successful surgery or a few months of therapy have led to her new confidence in communication, let me back up a bit here. We adopted our daughter in China at 16 months of age not having much knowledge of the needs of cleft lip and palate. Her lip had been repaired only a few months before in China. Since then she has had two other palate surgeries stateside and received speech therapy 2-3 days a week and she is now four years old. As a former pediatric therapist, I was adamant (dare I say “pushy”) about beginning therapy as soon as we were able upon returning home. Within six weeks of getting settled we had begun weekly speech therapy. We’ve taken breaks for surgeries and family reasons, but our relationship with her therapists has been regular and wonderful.

Notice I did not say “consistently easy.” Nope. We have had therapy sessions where she spent 30 of our 45 minute session screaming under a table. Sessions full of eye rolls and moaning and very little “work”. Sessions that involved game pieces chucked across a play room and claw marks down my arm. Sessions where I wanted to crawl under the table for 30 of those 45 minutes and cry. Those days happen and golly they are awful! But unless our sweet girl is really truly ill, we stay for that whole therapy session no matter how arduous or how embarrassing it gets. We want her to know that we value that time.

And when I say “we” I mean us, her parents, her therapists, her siblings, her teachers and anyone in her tribe cheering her on whether present or not. She knows from our consistent insistence that going to therapy sessions to “play and work on our words” is important. We want her to know that we believe in her ability to work hard and be understood, that we have hope for her independent communication with the whole world in the future. We communicate the value of therapy to her through our actions and words.

Her growth in communication has been slow and we’ve made careful decisions along the way. Surgical repair of cleft lip and palate does not magically solve a problem as big as expressive communication. Surgery and great surgical teams are absolutely amazing! But those surgical interventions at best give our child the anatomy to make independent communication a possibility. Our child does not wake up in post-op suddenly rivaling their peers’ language abilities. I strongly believe that for most of our cleft-affected kiddos, therapy is really what brings about that ability. A partnership between a skilled speech-language pathologist, a parent, and the child will produce gains in independent communication.

It may take more time, more tears, more cost, and more long-suffering than we anticipated. It may even look very different than we expected. But it is worth it. It’s even worth the long drives and the phone calls to the insurance. I can say it’s worth it and we are not even “there” yet.

But I have full hope that she will be there someday, and until then we work hard alongside her, pray with hope, and encourage her to speak openly because her heart and her are so worth hearing, sass and all.

– guest post by Stephanie: Instagram || #herwordswillcome

8 responses to “Her Words Will Come”

  1. Rachel says:

    I am so in your tribe with this! Our bio son is nearly 4 and was born with a severe cleft lip and palate and is severely speech delayed. Maybe even a diagnosis of Childhood Apraxia of Speech. I know your Legoland fear and the tears of joy that follow. We adopted in March from China and it looks like this guy is going to have major speech delays as well (different medical needs than cleft) and so we celebrate every sound, syllable, and word!

  2. Emily says:

    I can so relate to this—we adopted our youngest son domestically as an infant, knowing he had sensorineural hearing loss. Hearing aids didn’t magically “fix” him, particularly when he developed fluctuating conductive hearing loss from chronic ear infections. Speech therapy has been a battle— not only finding a therapist who can best help him but also getting him to cooperate in his sessions. His expressive speech is improving, but I can’t wait for the day that others can understand him well. He is a spunky outgoing little guy with a lot to say!

  3. Stephanie says:

    Thanks Rachel! This tribe is so wonderful to reach out to on this road! The daily little celebrations do indeed outweigh the challenges ❤️

  4. Kimberly says:

    I love this! ❤️ My daughter, adopted from China in 2008, has Childhood Apraxia of Speech. I am a speech language pathologist too! We also celebrate each victory with hopeful and prayerful hearts for her future! Every child deserves a voice! Thanks for sharing!

  5. Rossetta Hanna says:

    Loved reading this! Praying that you are given wisdom, peace, and endurance! God has a plan. I will share this and tag my great niece. She and her husband adopted two children from China last summer both needing medical help. One is 12 and the other is 2. They also,have three biological children, and two others from Ethiopia. They are such faithful Christians. I am amazed at their attitude, as I am at yours! Blessings to you.

  6. Stephanie says:

    Emily and Kimberly, I know those hard struggles over small victories so well! keep at it with hope and expectation, and yes, their voices are so worth hearing! And thank you Rossetta for your encouragement!

  7. I loved hearing your story! Thank you for sharing. We also have a daughter from China with a cleft lip and palate. It is so worth it! Praying for your family.

  8. Kelley says:

    Thank you for sharing! Our little cleft sweetie is 8 and still very delayed with her expressive speech. Some days are so hard. We continue to move forward, believing her words will come.

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