I just finished reading this article by Jane Farrall, an AAC professional that provides a great deal of very helpful information on her website not just about AAC and communicators with complex communication needs, but also about education and literacy. She incorporates how to use the PODD or whatever communication system a learner uses into lessons, and provides a point of view that is very close to my heart. The point of view that every person has the right as a human to communicate, and to communicate fully using a robust communication system, not simply pressing a button, or answering yes and no questions all day long.
I'd like to preface my thoughts today with a few facts that I know are true.
I know when our children are sick, nothing else matters but getting them well. I know that some children are sick often, and that maybe implementing a robust communication system might not seem like it should be a priority when you are in the hospital, or maybe just trying to keep yourself going after nights and nights of being up caring for you loved one.
I know many people don't always have team members or speech therapists that possess forward thinking views, or ones that will presume our children are competent. I know it is hard to convince the system to believe you that your child deserves to be able to communicate, learn, and socialize.
I know there are millions of different life circumstances that can make obtaining a Tobii, or a PODD book, or any type of communication system a difficult task. My intention is not to place judgement or blame on anyone for what they can or cannot do. I want to talk about our views as parents in regard to the importance of overcoming any obstacles that are in the way of letting our children communicate.
Here's something that not only makes my blood boil, but also breaks my heart: in the past three years of attending conferences, parent gatherings, strollathons, and awareness events, I have seen one other girl, one time, with a means of communication available to her right then at the event. I have met many girls. I have met girls who I know had Tobiis and PODD books at home, but they weren't there with them. To me, this sends a message that they can only communicate at certain times. Not only that there are only certain times that they are allowed to communicate, but that there are evidently times when nobody cares if they have something to say. That may sound harsh, but what other message could it be sending? In the groups on Facebook for parents with Rett Syndrome, and even communication groups, I have heard people comment that the Tobii is too bulky to bring along, the book is too big, there's already so much to bring with them, they can't remember it, etc., etc. Whatever the excuse may be, all the AAC user sees and hears is that it's not important.
In addition to the occurrence of making excuses for not always having a means of communication present for AAC users, I feel that many people still believe, or are told by professionals and then taught to believe, that their child actually is "too something" like Jane's article discusses. Too physically impaired, too cognitively impaired, too behaviorally challenging, too old, too young, the list could go on and on. I was actually surprised when I read this article that the idea of nobody being too anything to communicate has been in practice for so long, because I consistently hear other parents talking about how their therapists and/or teachers have decided their child is "too something" after all. Often times, I think when a professional says something, then a parent believes it. That "professional" might be more educated, so why shouldn't we believe them?
However, if there is one thing I have learned since beginning this journey as Lu's mother it is that professionals are not always right, and if I don't think they are right, it is my job to make them see why they are wrong. This can be intimidating because they are the "professionals", and I'm just the parent. I have heard umpteen times that I am the expert on my child, but on very few occasions have I actually felt that the person making that statement really believed it. But I believe it, with every fiber of my being, and because of that, I calmly, patiently, but relentlessly make that fact known to anyone who needs to know it. As the expert on my child, I don't let people second guess what I know to be true: that Lucy is brilliant, strong, funny, kind, and capable. She experiences many things all day that could probably be considered as severe impediments to her ability to communicate, but I have never let anyone say that any of those things were too anything for her to be able to talk to us. She has very little control over her body, but has learned to use her head to indicate yes and no. She holds her breath and grinds her teeth constantly, she knows we will wait until she is breathing again so she can continue with what she was saying. She can't use her hands to sign or point to what she wants to say, so she uses eye gaze and partner-assisted scanning. There are ways to work through anything.
When I see and hear so many reasons why people do not have a way to communicate, I feel frustrated with the adults who should be advocating and problem-solving for them. However, mostly my heart breaks for these children and adults who have so much to say, and are not being provided with a way to say it. Seriously, can you imagine having the brain you have, and all of the thoughts and feelings you have, but not being able to express yourself? Now, if you can imagine that, imagine that nobody around you believes that you have anything to say, so they don't try to figure out how to help you communicate. Or imagine that you have a magical machine that can let you talk just by using your eyes and choosing what you want to say, but it's only available to you once in awhile. Or imagine there is a book full of symbols that you understand and could communicate with, but nobody ever seems to bring it along. Imagine what it would be like if people discounted your abilities based solely on your disabilities.
Parents need to believe in their child's ability to communicate, and professionals need to presume competence ALWAYS, so that they at least can help parents change their view points if necessary. It needs to become a more widely spread belief that nobody is too anything to communicate. Every person should simply be seen as too human to not be allowed to have their thoughts heard.
