Grieving for the Speech I Have Never Had
A university lecture to speech pathology students which I deliver with my mother, Lynne from time to time.
Now, when Andy asked me to talk to you guys today, I was hoping that she would list a few key points for me to touch on. But nope. "Just talk about your life," she said wistfully and I nodded my "Sure! No problem" nod, like I knew what she meant. However, when I sat down to write this speech, I had no idea where to begin. I realise that my life is slightly different to the "average" life of a 21-year-old, but in a lot of ways, it is the same. People can’t fully imagine what living without speech is like, and to be honest, neither can I.
As I have always had methods of communicating and people who would patiently listen and value my opinions, I don't ever feel like I don't have a voice.
This is predominately due to the fact that even though it was pretty upsetting to my parents that I wasn’t going to speak, they adapted to my needs quickly and were determined to find an efficient method for me to communicate. My mum, Lynne will now read her account of that time.
I can pinpoint the exact moment when I realised that speech was going to be a huge problem. I was talking on the phone to my sister. We speak often. Almost daily. We talk about this and we talk about that. Anyway she was telling the story of a friend of a friend who lives in the US who has a daughter who can’t talk. She spoke on, saying that only the child’s mother understood her, and how she goes to a school for children with language disorders.
Georgia was still a baby, too young to talk, but something in me froze. It was that kind of cold you feel when you’re really afraid. The kind of fear you get when you intuitively know that you’re foreseeing catastrophe. It clutches at your heart and holds so tight that it only allows a pinprick of space to breathe through. The when-will-Georgia-walk concerns immediately transformed into a will-Georgie-ever-talk panic.
The fear took hold and became incorporated in our thinking, our planning and our breathing. The speech therapy offered by our local early intervention program was minimal. I ranted and raved, appalled that they could only see Georgia fortnightly, in alternate three-month blocks. I wrote letters to the district manager that were never answered. I made phone calls which were never returned. And all the while I was conscious of losing time. We were dealing with the limit nature places on the plasticity of the brain. These were Georgia’s best years. And we had to make them work.
Spurred on by extreme frustration and high-powered fear we sought out the most highly recommended – and the most expensive – private speech pathologist. It was here that we finally got an accurate diagnosis for Georgia’s speech problems. The strange journey a child with a disability takes you on finally had a direction. We were still thinking of it as temporary, even if it would prove to be a long drawn-out ailment. It was going to eventually ‘get better’.
It did not.
Well, I would say it did get better, but not in the way as we hoped or planned.
Initially the emphasis was on my physical and functional speech. There were a lot of stories read to me, a lot of flashcards shown to me as a child and everyone tried to get me to mimic the sounds of words. But no matter how hard I tried and how much I pleaded with the muscles of my mouth to behave, it was very difficult to produce the desired sound. So the process was extremely tiring, frustrating and, being a little girl, quite boring.
We grieved for the speech she never had, and took the next step forward. We tried a bit of signing, but given Georgia’s hemiplegia it was necessarily limited. We read story books which were strong on phonics. Mr Brown can moo, can you? We flashed sound cards three times a day – oh, ah, ee – but never got beyond vowels before giving them away.
When I got a little older, I began using a communication board, which my father spent hours upon hours compiling. It consisted of an array of pictures, each representing a word that I would point to, to express myself. It often felt like searching for a needle in a haystack or rather, a word in a dictionary.
In those early days we used the board only in our most desperate moments: when our ‘twenty questions’ never worked, when there was no cue to be taken from Shannon or Zachary (Georgia’s siblings), when her pointing was so general or vague that we just couldn’t get it. It provided a point of focus, it offered an alternative.
I remember starting kindergarten with that board, but my main mode of communication was my twin sister, who both friends and teachers relied on to understand me. I felt that this was the easiest way of getting my point across.
I’m unable to recall exactly when we stopped hanging out for words. All I can say is somewhere along the way our focus shifted to communication. A bit of signing, the odd icon, facial expressions, body language, a nod, a blink – anything would do. We changed the family lexicon. We no longer called it brain damage. We didn’t want to place limits on it. We said Georgia’s brain was hurt.
Growing up into an angsty and angry teenager, I refused the many electronic communication aides I had tried in my earlier years. I didn’t feel I needed them and I definitely didn’t feel I needed an extra visual cue that I had a disability.
School was hard, very hard, harder than I would like to admit. When I started High School. I transferred to a different school than my sister, a public one with a special support unit to assist students with physical impairments. I had never been grouped in with other people with disabilities before, and that was really unsettling. Other mainstream students would look at me like I was a foreign species and completely ignore me and some teachers wouldn’t even consider me a regular student.
My mum told me to make myself visible to counteract this, so I joined the SRC, did performances at school events and was overly assertive. No matter what I did, I felt powerless and invisible. After four years, I eventually couldn’t bear it anymore. Something inside of me broke and I stopped going to school. I started my senior studies through Distance Education, it was an effort. I decided to do “Pathways”, a scheme, which let me do my HSC over 3 years.
We began “school shopping”, which is also a depressing process when you have a disability, only a few would meet my needs. I didn’t want to go to a “special school” again, because people generalize. We all feel we don’t, but we do - when people see a group of people with disabilities, they assume they must like the same things, have similar personalities and intelligence. I didn’t want that, I wanted people to know my name not just refer to me as “that kid that drools and doesn’t talk”.
In 2007, I began at Saint Scholastica’s, a Catholic girls’ school in Glebe. I never thought I would be a Catholic schoolgirl; I have too many piercings, an odd family and Jewish heritage. However, the school community was so warm and compassionate. Even now, it brings tears to my eyes, thinking about my teachers, they all were so supportive, giving and they actually didn’t see my disability. In 2008, I sat my first lot of HSC exams. The board of studies wouldn’t split my exams over two days, so I sat for eight hours and typed my answers.
2010, my final year of school, was the year when things started to shift. Girls in my classes began wanting to learn my sign language. My Society and Culture teacher also suggested that I might benefit from getting a communication device, I was skeptical but nevertheless agreed. She then arranged for a device called a Lightwriter to be sent to the school for me to try.
I begun using it in classes and when I was alone in public, it made everything so much easier. I began dictating my exam answers using it, and it speeded the process up. The board of studies finally listened to my teachers’ pleas to break up the long exams into two days. I finished my HSC with high marks, much higher than I was expecting. I got awarded the Brother John Taylor memorial award by the board of studies for my efforts, which was a great honour.
I’m now in my second year at uni, I started Psychology at the Australian Catholic Uni last year, but am now at Sydney, doing Liberal arts and science.
So yeah, I am pretty boring, don’t you think? Everyone always says I must be so courageous, but I don’t see it like that, I see myself as so fortunate to be surrounded by so many supportive people around me. If I didn’t have such amazing friends and parents, I wouldn’t be here, sharing my experience with you, let alone feel secure with in myself to go out alone.
Thank you for listening and I hope you got something out of our story.