Shape Cheese

I am not sure if my son is so visual because he couldn’t speak until he was almost 3, or if it is his natural aptitude (or both), but it has always been his greatest strength (that and dogged persistence).  For the first approximately 3½  years, his communication was dominated by a system of symbolic gestures that he invented entirely on his own.  For example, our complex has 2 gates that slide apart to open and together to close.  N learnt from this and would hold his hands up (palms towards himself) and slide them apart for ‘open’ and together for ‘closed’.  He watched and learnt how things within his environment operated and then made up his gestures accordingly.  More than once, we were presented with the option of teaching him a uniform and universal symbolic system, which we (I) declined.  Firstly, I had to believe that he would speak eventually.  Secondly, if it ain’t broke…

I was filled with wonder and pride at N’s creativity and determination to get his message across one way or another.  Yet, social outings were always complex and filled with a sickening combination of anxiety and dread.  When the differences between N and his peers started to become more apparent, I would agonise over which birthday parties and playdates to attend and which to excuse our way out of; which friends or school acquaintances would accept us ‘as is’ and which would try not to stare while burning to ask a myriad of questions.  After months of shying away from parties and functions, I made the decision to take control and to allow N to take control.  I realised that, if I ‘hid’ him away and acted as if I was ashamed of him, I would be sending him the message to be ashamed of himself.  I also realised that, if I did not give people accurate information, they would reach their own (and likely incorrect) conclusions.  No.  That stopped.  While I was still selective about where to go and what to attend (certain environments were just too overwhelming for him), I decided to get ahead of the questions and covert glances and be upfront about the fact that N could not speak, but was fully cognisant and could understand everything.  I forced myself to be open, which inevitably leads to a level of vulnerability with which I am entirely uncomfortable, but there was no other good option as far as I could tell.  I did not know for how long he would not be verbal.  We couldn’t shy away from the world indefinitely.  Ironically, the vulnerability led to my being able to take back some control and I was able to give N control by following his lead.  If he pointed to the kids having their faces painted, we went to join in.  If he smacked his lips with a glint in his eye, we went to get party treats.  If he took my hand and led me to the front door, we left.  I remember someone commenting that I couldn’t just ‘do whatever he wanted’, or something to that effect.  Not only could I, I had to.  I had to empower him as a communicator and show him that I acknowledged and respected the messages he was working so hard to give me.  I stuck with this when he learnt sounds, words and started putting the words together.  He had to put in so much time and effort to express himself – I was not going to diminish that by not listening.

His (our) communication system grew and became more sophisticated as N’s needs developed and his preferences became more specific.  It wasn’t enough anymore to just know if he was hungry or thirsty, I had to figure out if he wanted chicken nuggets or pizza or an apple cut in a specific shape.  Every night I would take out the meal options and lay them on the kitchen floor / counter for him to make his selection.  Labour intensive?  Yes.  Necessary? Also yes.  My efforts aside, it was his creativity that astounded me.  From physically dragging me around the house, to using the back of his books (which had pictures of all the other books by the same author) as a library to choose which story he wanted read that night.  There is no doubt that he became a very effective communicator – speech or no speech!

To this day, N’s visual skills dominate his communication, even though he can now converse fully.  One of my greatest worries has always been the fact that I am the only one who really understands his funny little system.  Only I understand the difference between shape cheese (sliced cheese) and worm cheese (grated cheese); that any discolouration on fruits or vegetables will preclude them from being eaten; that certain things must be found in certain places (we will discuss the rearrangement of his bedroom another time); that changing a lightbulb to a brighter one will lead to weeks of questions; that the school security guard losing his uniform cap will result in the same daily discussion until it is replaced (by me for the sake of my sanity).  Yet, I am also constantly astounded by this skill – that he will notice the number on the back of a bus or streetlamp; that he knows who drives which car; that he will comment on my earrings or toenail polish; that he sees things in people and places that most adults never see.  I constantly hope that this will help him to have unique abilities.  Abilities that overshadow his struggles.