Most who know me, know that I just love a good goal! Whether it’s a half marathon, or completing a beautiful wall collage, I thrive off of accomplishing something. When I learned that goals would be set for Gia’s therapy, and every 13 weeks, reflected in progress reports, I thought, “Great! This is right up my alley!” Boy, was I wrong!
Shortly before I was due to receive Gia’s first progress report, a slight bit of panic set in. The anticipation of what this piece of paper might say, was driving me mad! My head was consumed with anxiety-filled questions, “What are Gia’s goals? Has she met them? What if she hasn’t met them? What does that mean? I know she’s improving, but is it enough?” On one magical afternoon, our SLP, Anna-Alyse emailed me the progress report, and the suspense was finally over. When I spotted it in my inbox, I sat up in my chair like a board was glued from my back to the top of my head. My eyes were drawing in to the screen like a magnet, and I had a severe case of tunnel vision. I admit I was acting a little crazy, like this email had some sort of life-changing information in it. So I took a deep breath, and started to read.
The progress report listed each individual goal, and the details surrounding it. Just off to the side, it stated how far Gia had come in that goal, and if it’s necessary to “continue” or “discontinue” in her therapy sessions. Gia was given a total of 7 goals, and 3 of them had been discontinued. She had shown improvement in the other 4, but not enough to be considered proficient. So the remainder would roll over to next 13 week period, along with some new ones. My initial reaction was excitement! All of Gia’s hard work was paying off, and I was so proud of her. To see that Gia had accomplished even 3 of these, meant that she really was improving, and it wasn’t just me trying to see something that wasn’t there. It was actually on paper, right there in front of me!
Gia’s next therapy session wasn’t for a couple days; just enough time to start driving myself mad again! This time, I had a whole new set of questions, “What about those other 4 goals? Why didn’t she meet them? Is that normal? What does this mean? Should we add another session every week?”. When I finally spoke with Anna-Alyse, of course I played it cool. I asked her all of these questions, but made sure I didn’t sound as crazy out loud as I did in my head. She reassured me that it was not only ok that Gia didn’t meet all of the goals, but that it was quite normal. She explained that this was only the beginning, and that Gia’s accomplishments in only a few months, shows how well she takes to therapy, and how promising it is to her treatment and recovery. She needed me to understand that Apraxia has a mind of it’s own, and expectations don’t exist. Every child is different, every child has different goals, and every child progresses at different rates.
After my much-needed talk with Anna-Alyse, it occurred to me, they don’t set these goals with expectations of when or even how they are met. Retraining an Apraxic child’s brain is an extremely complicated and grueling process. In more simple, non-neurologic terms, I would compare the process to building a house. In Gia’s first set of goals, her therapists were simply laying the foundation. With every week that passes, more and more of the house will go up. There will be rainy days, where nothing really gets accomplished, but over time, the framework will go up, the windows will go in, the appliances will be installed, and the final coat of paint will be applied. Before you know it, your dream home is completed, and you can finally move in and put your feet up.
So It suddenly hit me, I was putting the weight of this progress report on my shoulders, and treating it like it was my report card, for parenting an Apraxic child. The goal-setting, perfectionist in me, couldn’t handle the fact that maybe there was something I could have done differently to help Gia accomplish all 7 goals. To give myself that kind of credit, and to think that I had that kind of control, was nothing short of ignorance. What I do have control over however, is how my daughter perceives her accomplishments. I’ve been given the most important job of all, being her mother and her advocate. I may not actually perform my daughter’s therapy, but I do set the tone for her therapy. She looks to me for guidance, reassurance, security, and most importantly, confidence. I refuse to burden Gia with my “mother’s guilt”. I guess this means I have a couple new goals of my own.
Progress reports aside, It’s been just over 4 months since Gia was diagnosed with Apraxia, and she’s made some amazing progress! Her improvements are not only apparent to my husband and I, but to others as well. Most of Gia’s attempts to communicate, continue to be unintelligable, but every week that goes by, there are subtle improvements in her speech. In the world of Apraxia, subtle improvements, make for big changes in communication. She’ll either gain a new sound, that will eventually turn into an intelligable word, or she’ll string three of her existing words together, that will eventually turn into an intelligible sentence. When prompted, Gia can imitate almost any word you ask her to; some are clear as day, and others, a little muffled, but just months ago, her brain wouldn’t even process the sounds it took to allow these words to leave her mouth. Probably the most fascinating, and frustrating thing about this speech disorder, is watching my daughter so easily imitate these words, but once challenged to use them in spontaneous conversation, the words fall apart. It’s fascinating, because it defies all logic, and it’s frustrating, because it defies all logic. As her mom, I’ve always been able to interpret what Gia is trying to communicate, because she’s my baby, and I know her better than anyone. I know her body language, I know her patterns, and I know her habits; I used to literally, depend on these nonverbal signals to understand my daughter. When Gia started therapy, I couldn’t wait till the day that someone besides my husband and I could understand her, and even my husband struggled with this. I dreamt that someday, she would ask her cousin, Grace to play hide-and-go-seek, or run up to her grandma, and ask for a cookie, and that day has finally come! Her attempts to communicate are far from perfect, but for those who are patient, and willing to listen, she is determined to get you to understand! What is perfect however, is her effort! Gia has the same dream that I do, the dream of being understood. I truly see satisfaction in her eyes when someone not only listens to what she’s saying, but is actually hearing what she’s saying. As a result, Gia is coming out of her shell, and interacting more with the adults in her life, and not just the kids. I see her confidence building with every word she gains.
Gia and I are a team, and we celebrate victories together, and struggle with challenges together. The bond we share, is one that I could never put in to words. She is one of the hardest working, and most motivated people I know, and she inspires me everyday.