A friend recommended this book to me awhile ago. (Thanks Erica!) I found it to be really helpful by outlining the stages of language development in a way that is more technical but easy to understand. It gave me ideas for new approaches to getting Ainsley to vocalize. The woman who wrote this book happens to live in the greater-Seattle area. However she retired from private practice years ago, and now travels all over the country doing lectures and workshops. In addition she's a writer.
At some point I thought: Wouldn't it be great if she would see Ainsley for an evaluation?! I'd been wondering whether Ainsley has the capacity for spoken language, because of her cerebellum malformation and the trach, but her doctors and therapists really couldn't or wouldn't say whether she will eventually speak. Although her receptive language is pretty good, and she is now signing about 25 signs, she really makes very few attempts at what most people would consider to be speech. However sometimes I swear I hear Ainsley mimic the intonation of complete sentences, such as "I want that." In a way I describe it as attempting to speak as a ventriloquist, albeit a bad one, without moving the lips or tongue. She just hasn't yet figured out that moving her lips and tongue changes the sound, or perhaps it's more accurate to say it takes too much effort for her at this time.
In Pam's book she talks about sometimes how parents will think their child has no words because the words are unrecognizable. This woman seemed to know so much about language development, and had so much experience as a speech therapist I thought she really might be the person to tell me if Ainsley will someday speak. And whether these "ventriloquist sentences" are in fat the beginning of Ainsley's attempt to speak. As a parent of three children, one with intense special needs, I often feel short of time. This year I've been seeking answers from the medical professionals. I need help sorting out which baskets to put my eggs in. Ainsley needs PT to help with gross motor skills like learning to stand and walk, OT to help with fine motor skills like drawing with a crayon, help learning to eat, in addition there are her medical needs: suctioning, g-tube feedings, increasing her use of the trach cap, making sure she wears her speaking valve, researching and scheduling surgeries etc, keeping up with her blog, and then you throw in speech. We've been working on sign language, a new AAC device and also true vocalization. It's a lot. I want to spend my time on the therapies that Ainsley is most likely to be successful in. Did I mention that I have two other kids that need me?
So I contacted Pam via e-mail in the winter, asking if I could bribe her to see Ainsley. She must have sensed my desperation for answers. She said she was too busy, but to get back to her in May. A maybe, I was thrilled! I persisted and she agreed to see her in July. I was elated and very much looking forward to the appointment, which we had yesterday. We talked more about her medical history, what signs she has, when she is most vocal. She watched her play, breathe, listened to her voice and talked to me at the same time about her observations and where she thinks she is at in the stages of language development. Ainsley has met the skills for the "Preparing" stage of speech: Voicing, Prolonging, Differentiating, she needs some work on Posturing. She is now in the "Speechifying" stage of language development which includes: Projecting, Pitching, Intoning, and Laughing.
She took a lot of notes and drew an image of Ainsley in the center of all this stuff (her medical issues and history are complex) in the center is Ainsley's voice and out of that is a straight line to speech. It's so simple but makes so much sense. Our path to getting Ainsley to speak is simply to work on her voice. Encouraging self-expression of all kinds and the use of her voice. She will make more progress if she is encouraged to vocalize more. The more practice she gets the better. It doesn't help that she had no voice at all (couldn't wear a speaking valve because of a complete obstruction) for the first 2 years of her life. She got used to being quiet. And even now we still have to work to get her to keep the speaking valve on. She has spend a huge portion of her short 3 3/4 years "without a voice".
In addition she was able to answer some questions that had been bugging me for a very long time such as why her voice seems clearer when she is laying on her back. It turns out that because Ainsley has low muscle tone and a malformation of the cerebellum that she uses so much of her focus to control her muscles, tightening her torso for control over her body. When she lays down it frees up her diaphragm and other muscles to be used exclusively for vocalizing. So perhaps we will make some time to play with her voice while she's laying down, not always, but sometimes.
Pam also explained that the vocal cords are resting in the open position and the muscles bring them together to make sound and that Ainsley's voice sounding "growly" is from bringing the cords together too forcefully, and that it is a habit. Now things are making sense, she has a hard time controlling the muscles for vocalizing, just like she does for any other motor skill due to her cerebellum. There are times that she can produce a voice that is not growly, and so that is what we are to do. Encourage the maximum number of vocalizations using the non-growly voice. We aren't to try to get her to mimic animal sounds and vowels, because she's not there yet. That will come later. This bit of information is priceless. Now I have a picture of what the problem is and how to work on it. History shows us that Ainsley can master the motor skills, just that it takes more time and effort. There is no reason to think she cannot master control over the vocal cords too. Pam said, YES, she has no doubt she'll speak, but it will take time and effort.
Pam gave me her second book on Apraxia, Apraxia Uncovered. Even though Ainsley doesn't truly have Apraxia, I expect this book to be just as good and useful Becoming Verbal With Childhood Apraxia. I'm very excited to read it. And to see Pam again next Tuesday! We have Evie's "Ballet Shoes" play this weekend and the dress rehearsal tomorrow so this is likely the last you'll hear from me until it's over.