Communication - so much more than just words

Cri du Chat Syndrome is caused by a deletion in the small arm of the fifth chromosome. The characteristics of this syndrome depend completely on the size of the deletion and what sections of the arm are affected. When we originally read down through the list of characteristics that may or may not affect Eli, one of the ones I found most difficult to come to terms with was "difficulties communicating/non-verbal". I remember wondering if I would ever hear his little voice, hear him say "Mama". It was really heartbreaking. At the time, words for me meant connection and I feared not having that connection with my son. 

We started Speech Pathology when Eli was about 1 year old and I began to learn so many things about communication. I quickly realized that you don't JUST need words to communicate - one of those things you KNOW but don't really GET until you are in a situation like this. We were given numerous exercises that we could easily weave into our day that gave Eli different tools for communicating and taught us how to better support him. I am amazed at what Speech Pathologists do so I want to share a couple of these exercises with you:

We started with passing games. Playing with an object and then saying "Mommy's turn!", waiting for him to let go of it or place it in our opened hand, playing with the toy ourselves and then saying "Eli's turn!" and passing it back. This, amazingly, is not only a great game to help him interact in play but also the beginning of him understanding that communication works BETWEEN two individuals. We take turns while speaking (ideally!) and this game exemplified that for Eli.

We also worked on waiting for Eli's response when he wanted us to do something for him. He would play with a toy that he needed our help with and we would say "1, 2, 3....{wait for him to look at us and when he did say}...GO!!" and press the button to make the toy work. He consistently looks at us for help with such things now so we have moved on to waiting for him to make any kind of sound before we help him.

Understanding that communication doesn't only depend on words has created a space for us to be much more aware of the nuances of how Eli is already communicating on his own. One arched eyebrow and small smirk means he is seriously curious about what you've got there in your hand, the furrowed brow and pointer finger picking at something means that he is lost in figuring this little thingamajig out, sticking his arms straight out in front of him with balled up fists turned out and a rounded back means that he is super excited about what is going on, the slow head turning to the side with a sly side glance means he is not... quite... sure... about.... this....

Don't get me wrong. Having a two year old who is currently nonverbal can be difficult. I want to hear him say "Mama" so bad my heart aches for it. I want to know exactly what's wrong or what hurts when he is crying his little heart out in the middle of the night. I want to know what he is thinking about and how he perceives the world around him. I know in time I will learn more and more from Eli, sometimes through words, maybe signs, maybe technology that can help make communication easier. We are open to any and all methods.

The biggest mistake that can be made is thinking that someone who is nonverbal does not understand what is going on or what is being said around them. One day I was sitting with Eli saying "Ball....ball...ball" holding one of his brightly coloured balls in my hand. I then laid it down and said "Eli, where is your ball?" and he looked at it, smiled and picked it up. "That was easy" I thought so said "Eli, where is your block?", he looked around, spotted it, smiled and moved to pick it up. WAIT. Did that just happen??? I asked him where another one of his favourite toys were and, by God, he spotted it and PICKED IT UP!!! The whole time I was teaching him the words, not understanding that he already knew them! HE was just waiting for ME to catch up.

We have since started a running list of the words and phrases that Eli understands, how he reacts to those words (looking at the object, moving his body when asked, touching a body part etc) and the sounds that he makes and when he makes them. We are also starting to connect the sounds that he can make with objects around him. He is able to do a couple of signs ("all done" and "poop"...imagine that from a two year old boy! Eyeroll...) and we are working on a couple of new ones each week. This has made it clear for us that Eli understands so much of what is going on around him and that we can never, ever sell him short. He may not interact in the way that we are used to but that does not mean he is not understanding and communicating.

I originally worried about how my connection with Eli would be affected because he may have issues with his communication. I quickly saw that my connection with Eli is not affected by this at all and that it is as heartfelt as any mother's and cherished child's. Eli may not communicate with words just yet but he does with touches, smiles, frowns, movements and sounds. The words will come. They may be in the typical way or they may be in the form of signs or sounds from an iPad, and that's okay. We just need to keep supporting him with the tools that we learn and then make sure that we can keep up!!!

Love and light,

Leah