Just a few weeks ago, Sunny celebrated her 4th birthday.Strongwilled, sweet, funny and creative is her way. Of all the girls, her years seemed to have gone by the slowest. Award worthy fits and inflexibility fade as she grows into herself and I remind her to slow down. When she was younger, I would tell the older girls if they just took the time to listen to her when she was frustrated they would understand she just wanted to be heard. I had no idea then just how true those words would eventually become and how often I would have to remind myself to take my own advice. I want to start by first saying that Sunny is a healthy, smart, happy little girl, and my reason for sharing her struggle is for others who are going through a similar situation to not feel so alone. This summer Sunny was officially diagnosed with Childhood Apraxia of Speech, a neurological motor planning speech disorder of which she falls on the severe end. The cause is unknown and is thought to be present at birth. Apraxia is not something she will "grow out of" like other speech delays and disorders. She will need years of speech therapy with a speech language pathologist and progress is very slow, but there is much hope that she can learn to live with it and overcome much of the disorder, even though she will always have it. With apraxia, somewhere along the way the body parts used for speech(lips, teeth tongue) lose the signal sent from the brain to produce the sounds and order of sounds that produce intelligible speech. Most children don't have to think about how to say a word or phrase they want to say. It is stored in their brains and is quickly put to use when needed. This is very difficult for kids with apraxia, who will need to say any one sound and combination of sounds THOUSANDS of times before they can reroute it to their memories. Daunting, yes. My mind automatically started to do the math...24 hours in a day..52 weeks..365 days in a year..how many different speech sounds...would she ever be able to talk like most kids her age? Then I started thinking back and saw all her behaviors when she was younger that were emotional, frustrating, weepy and whiny, and it explained it all..she was misunderstood, trying to communicate in a body that had no voice, with a head that understands what everyone else says and what she wants to say and could not understand why we didn't know what she was saying. It was a heartbreaking realization.
I can understand or decode most of what she says and her sisters help her words be heard when we are with friends or out and about. She talks all day long whether understood or not. We are starting some basic sign language to help ease some of her frustrations and I am researching the connection between these neurological disorders with allergies(gluten), malabsorption of fats, diet and gut health. She has been in therapy now since May and she can finally say her name correctly and consistently, along with quite a few handfuls of other new two and three letter words (she just nailed bow, dough, day and bay, and is enjoying rhyming words). Singing her "homework" words has really helped her say words faster and consistently. She still mixes some sounds when speaking newly acquired words spontaneously (like saying tea when she really means eat, or toe for oat), but these baby steps are so very welcome. It has definitely become a lesson in patience for me.
For her birthday she asked me to make her a blue sweater. I chose the Lottie with some wooden butterfly buttons I picked up at JoAnns and some Quince and Co yarn. She is always so curious when I sit down to knit. Interested in who this one is for or what color her next one will be or who needs one for a present...her bright eyes wide waiting to hear my answer. I have a feeling she will become one of my greatest teachers.