Lil Z is two years old. Although I have long stopped comparing her to other children her age, I remember when Vegemite was two and one of her most important milestones was her growing independence. Most two-year olds insist on doing things themselves. They want to walk, not ride in a stroller. They know what they want to play with, what they want to eat, and when they want to go to bed. Being two is about expressing what you want. And being a parent of a two-year old is about giving them some freedom while still maintaining boundaries.
However, Lil Z cannot communicate so she can’t tell us what she wants, making it difficult for her to assert her independence. Instead, she is subject to going where we want to take her, sitting in the seat we put her, and playing with the toys, watching the cartoons and reading the books we choose for her. She has very little control over her life because she can’t tell us what she wants or needs.
Being “non-verbal” is one of the main characteristics of Rett Syndrome and its atypical variants. In fact, any type of communication is difficult because of the lack of purposeful hand movement. So, it’s not only difficult to speak, but it’s equally difficult to use sign language or a keyboard. Our paediatrician has warned that as Lil Z becomes older, she’s likely to have behavioural problems borne out of frustration at being unable to communicate.
This makes me sad because I hate the thought of her being trapped in her body, unable to tell us what she wants, needs or feels, growing more and more frustrated. Lil Z may often seem like she’s in her own little world, but there is a lot going on in her mind – it’s simply her body that won’t cooperate. And that makes me determined to help her communicate in any way she can.
Last weekend, QB and I went to a presentation given by a man with severe autism and OCD. He communicated by using Proloquo2go, an Augmentative and Alternative Communication (AAC) programme on his computer. In his presentation, he talked about how he felt growing up being unable to communicate and how his actions were often misunderstood. Being able to communicate via AAC has allowed him to explain to others why he behaved the way he did, some of the triggers and equally importantly, become much more independent. He now has a job and his own house and has travelled the world. And he talked about managing his team of carers and therapists – leading the team of the people who are there to assist him, instead of the other way around. It was inspiring – and I think all the parents who attended the presentation went home even more determined to help their children communicate.
To be honest, it couldn’t have come at a better time for us as we’re seeing Lil Z’s first attempts at real communication. She now consistently gives two signs: “up” (raising her head up) when she wants to get up from bed or tummy time and “more” (patting her chest or tummy with one hand) – although so far the only thing she wants more of is bouncing, and then she can’t get enough…
She actually has a third sign, too, although we’re loath to acknowledge it. She scratches her ears to demonstrate that she’s frustrated / bored / wants to do something different. It is probably her most effective sign, because the ear scratching always spurs us into action… which means she usually gets what she wants. We’re currently trying to come up with an alternative sign for her to show she is “finished” (the Auslan – Australian sign language – sign for finished requires too much dexterity for her).
The ear scratching is actually a good example of how she is learning to communicate. She used to scratch her ears when she was in pain, over-tired or experiencing sensory overload, sometimes until they bled. Then at some point she realised that when she scratched her ears she got a much faster and better response than just crying. So now, she scratches whenever she wants attention or something changed. I’ve even noticed that she will scratch her ears a few times (accompanied by some unhappy grumbles) and then look at me to make sure I’ve noticed. If I don’t react, the scratching goes on, but if I do respond, she immediately stops. Manipulation? Absolutely. But also her own very effective form of communication.