Her Journey.

July 7, 2015 Education, Family Stories, IEP, July 2015 Feature - Craniofacial, Nicole, public school, speech delay, speech therapy 0 Comments

I recently looked back at my blog archives and noticed that I hadn’t blogged about Sunshine’s cleft journey in over a year! Although that is representative of surgeries, it surely isn’t representative of all the work she’s been doing. My sweet girl has been putting forth so much effort in speech therapy. So although the surgeries have taken a long term (but temporary) back seat, she is still doing some big time work on making her communication intelligible.


She has been meeting with her Speech Language Pathologist (SLP) at the local elementary school twice a week, for 30 minutes each, over the past year. While she’s in her classroom, I wait with the other children outside in the school lobby. They bring electronic devices and I read a book. We tried bringing school work but there are too many distractions, especially when the bell rings and all the school children come into the building. The time is very productive for Sunshine though – she works on articulation and proper pronunciation of her more difficult sounds, like blends, final f’s, and initial and final s’s. Her therapist then debriefs me afterward, giving me insight on what to work on throughout the week.

I admit I was not excited when she aged out of Infants and Toddlers and moved to an IEP last year. I was concerned about her missing the one-on-one time with her therapist who had lots of experience with cleft children. But Sunshine’s time with her IEP-appointed SLP at the school has been fantastic. She has made a ton of progress this past year and I’m thrilled with the results of her hard work. All of our family and close friends are mostly able to understand her, asking her to repeat herself only sometimes. New acquaintances are able to get the gist of what she is saying too, which is so cool to see! I love watching her interact with other children, knowing that they can understand her.

Today, I silently observed as Sunshine made a new friend with another five year old at the pool. They told each other their names and chattered back and forth as they jumped into the pool over and over. I heard lots of laughter as they splashed around and genuinely enjoyed themselves. As I watched, I sat back and smiled. There were many times in the early years when I wondered how long it would take for Sunshine to be able to play with peers like that. Today, she wasn’t held back by her speech delays. The girls were equals, just two children playing together without concern. I had no worries about her being understood and it was beautiful.

It makes me so proud, especially thinking about the long journey she has already traveled. Her lip adhesion, lip repair, palate repair, and recoveries seem like distant memories, but they are a big part of her story. She still has years of speech therapy in her future, as well as more surgeries, at least including a cosmetic lip repair, a gum line repair, and a rhinoplasty. She’ll also likely require many dental procedures. She still has quite a road ahead of her, but I’m confident she’ll travel it with grace and bravery.

Nowadays, her diagnosed special need of cleft lip & palate is not an everyday part of our lives. There are no intense surgeries, long recoveries, special diets, no-no’s, or unwanted lip massaging. She’s simply our precious five-year-old who’s going to be a Kindergartener in the fall. She also happens to attend speech therapy sessions, and she works really hard to make her words understandable. Yes, she will need to endure more surgeries in the future. They will be difficult and I am not looking forward to them. But they are in the future. For now, we focus on enjoying the beautiful young lady our girl is becoming.

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