When Maggie was first diagnosed we delegated responsibilities – I was going to work with her on physical gross motor stuff. Shelly, Maggie’s aide, was going to focus on fine motor stuff and Jenny was going to focus on getting her speaking. In reality, we haven’t been able to divide quite as cleanly as that. It takes all of us, as well as all of her therapists, working with her at all hours on all things in order to keep her moving in the right direction. That said, Jenny always felt like she got the short end of the stick. I can move her legs until she can do it herself. Shelly can manipulate her hands until Maggie can do it herself. But there’s no way to get her to speak, to force her to vocalize. I’ve talked about it before, but there have been long stretches where Maggie hasn’t said a word. Complete silence. We sometimes would put on a tv, just so there was some noise in our house. Jenny, as a result, has, at times, felt like she was failing.
I wrote about it a while ago as well, but about 6 months ago she started making sounds again. One of her favorite games now, is the screaming game. She’ll scream, we’ll scream in response. It compels her to vocalize and while she decides when she wants to play – sometimes on playgrounds (cute), sometimes in public bathrooms (not cute), sometimes in airports (totally fine), sometimes in airplanes (probably not the best). But it’s progress. And we can look at that as her saying “ahhhh” – an important vowel sound for many words like Dadahhh or Mamahhh.
And now, she’s pushing the boundaries even farther. She’s starting to make letters as well. It’s been hard to determine if those letters are deliberate, though. Is her puffing air through her mouth to simulate the letter “p” over and over again, volitional or is it something else? Same with the letter “m” or “d”.
In her session the other day, I was able to witness how intentional those sounds are. In speech therapy she chooses what sounds to make and her wonderful speech therapist, Deandra, complies and helps her make those sounds. I watched her tell Deandra, using her Tobii, I want to work on saying “Pops”. It’s hard for her. It takes a ton of concentration, but with patience, she gets it. She squeaks out a “p”. The look on her face tells me how intentional that was. Then she told Deandra, on the Tobii, I want to work on “daddy.” Then I watched her work and try so hard to muscle out an unmistakable, “Da………..Da”
Not just a noise. Not just a sound. A word. My name. Despite what many experts have told us, she is regaining some semblance of speech. In the most tedious of manners, as painstakingly as possible, a single sound at a time. But it is moving in the positive direction. Despite how Jenny has felt about her role in helping Maggie speak, there is no failure here. She is in there and trying so very hard to communicate. It’s heartbreaking to see her struggle, but it also makes my heart full to hear her say Dada.
“Bye bye Dada” is the last thing we remember her saying. It’s a beautiful reversal to hear her fill the silence saying my name again.