Some weeks ago I started an ASL (American Sign Language) course online – I regularly volunteer with children with disabilities and had asked a mom (whose four year-old boy both has autism and is deaf) for some ASL resources. Her son additionally suffers from a little bit of separation anxiety, which isn’t horribly uncommon with autism – when he comes to our volunteer play sessions, there are times that he begins to cry and it’s terribly tricky to discern what will make him feel more comfortable. While I was already interested in learning ASL (up to 50% of autistic individuals are non-verbal), this little guy was enough to get me on the road to finding a class…as soon as possible.
The awesome news is that I also volunteer with Special Olympics-driven skating sessions once a week that includes a number of children who are either hard of hearing or completely deaf. There’s nothing quite like being able to communicate with them – being able to sign even a single word is exciting! (I definitely have a way to go!)
A couple of days ago, though, I came down with a cold of some kind – as a result of contagiously coughing, I lost my voice – and I mean completely. Talk about being in someone else’s shoes…
Horribly uncomfortable a “bug” is for any of us, it’s nothing compared to what some children and adults have to deal with on a regular, and life-long basis. In a strange way, I feel thankful that I can’t speak because it’s an exercise in understanding what it *might* be like – while I consider myself to be one of the most empathetic people I know, it is impossible to fully understand anyone’s experience without being in their skin.
I have lost my voice on one other occasion – remarkably, I was 16 spending a month in France, with very little French under my belt. I guess life likes to test my ability to communicate (which – as is clear – is NOT always done with speech.)
In any case, it’s as the saying goes – you don’t always realize what you have until you lose it. I’d never anticipate not having the ability to speak was an easy road…but it is a welcome experience. (Now I’m not exactly encouraging anyone to go out to a concert and scream at the top of his or her lungs to deliberately subdue the vocal chords…I’m just saying, there is good to everything. Yes, including getting sick and losing a primary means of communication.)
Now my husband has a little bit of a challenge playing the guessing game as far as “what is my wife trying to say now?” He’s doing a remarkable job of deciphering, decoding, and understanding what I am trying to say, and that’s not easy to do! So I’m very fortunate to have the support and patience.
Going to the store is also an enlightening experience – I can’t say “thank you,” or “excuse me” as I normally would, nor can I respond vocally to others. That leaves me feeling a little bit awkward as reciprocal speech is one of the key forms of communication many of us learned from infancy. When I indicate with gesture and my lips that I have lost my voice, people either immediately begin to whisper or act altogether more gently – it’s incredibly interesting! (I actually can’t even whisper, as that puts more stress on the vocal chords than speaking does!)
The other side of it is that I’m derailed from my activities – in part I simply don’t feel up to them physically. The pain and discomfort though. . .I think about all the children with autism suffering from sensory sensitivities without the ability to say “those lights are hurting my eyes,” “this fabric makes my skin burn,” “my chest hurts….” What is life like for them? Many “behavioral issues” are a result of such a scenario – they don’t have a means to say what they are feeling.
For the children who are deaf or hard of hearing, thankfully they do have words at their disposal (albeit non-speech, hand / facial /body gestures.) I learned “sick,” “feel,” “bathroom,” and “okay?” as quickly as I could. Fortunately I’m learning many other words too…but knowing that it will take time, it’s important I know some basics.
Even if I was feeling better, my usual day-to-day would still be a substantial challenge – I can’t make a singe phone call, for one. I can’t ask for help locating a medicine at the store. If I were in an office, I’d have to type everything out (doable, but less efficient.) I certainly can’t breakdown a Ninjutsu technique the way I could by asking questions in class, and I definitely can’t teach or volunteer. I have to rely on gestures to talk to others I might run into in my own apartment building because I am utterly devoid of my usual method of communication…
So it’s been a remarkable few days…
While I’m sure it’s not fun to be around me while I’m loudly coughing, slower-moving, and unable to answer even the easiest question, I feel truly thankful for the experience. In fact, I’m taking the opportunity to review videos from the ASL course modules that I’ve already completed – I will hopefully be seeing the Special Olympics kids on Wednesday to skate and I know a few happy ones who use ASL exclusively. 🙂