Mom! I wanna say something..

Picture this: You are in a alien country and you cannot speak their language and also your hands are constrained and so you cannot gesticulate, how do you communicate??? This is precisely how Yatish’s condition was when it came to his communication. The only tools he could use was crying when he was in pain, needed something or was uncomfortable or laughing and smiling when he was happy. It completely was up to us to figure out what he wanted. Mind you Yatish is normal cognitively, which means he understands everything like us, it is just that he could not express himself in any other way, except crying and laughing.

As a mother I instinctively know what his needs are, but how do others figure out. Here I was thinking about getting him into school, but the practicality of this was unnerving. I had this habit of pointing to things and telling him about it, knowing very well that his brain is taking it all in. One day I was pointing to his toy duck and there he was sticking out his finger and pointing at the duck. This gave me an idea. We started with four basic things, food, sleep, toilet and going out for a walk. He quickly learned this and started pointing quite efficiently. By this time he was vocalising and making some sounds, but none of which made any sense and was quite inconsistent.

Speech problems associated with cerebral palsy are associated with poor respiratory control as a result of muscular weakness, laryngeal and soft palate dysfunction, and articulation disorders that result from imprecise movement of the oral-facial structures. They have difficulty in articulating words due to emotional stress or to paralysis, in coordination, or spasticity of the muscles used in speaking. The degree of impairment varies and also some children with cerebral palsy have delayed language because they may be unable to play and explore like non-disabled children. The inability to be understood can influence the child's intellectual development, especially if parents don't take the extra time needed to understand their child's attempts at speech.

Bringing the lips together to make sounds like ma, pa, ba are the most difficult thing to achieve, so you can imagine my dismay when my child could not bring himself to call me mom, or say papa. But something strange happened. By now he was making sounds like ka and ga. One day I was overjoyed, when he pointed a finger at me and said Ka and to this day he calls me Ka and quite a few therapists who have worked with him also call me Ka, which I reckon is the most beautiful sound to my ears.

Next challenge was to make him say Pappa. I was so keen to get that sound out; I used all the techniques taught by the speech therapists. One of the techniques was, to push his lower lip up, and get his upper lip down, so he can bring his lips together, which will help him to make the sound pa. All my attempts failed, but what happened was, he started pointing to his chin, which meant Pappa!!!. Sometimes he could say Ajja and Ajji, or something like that, enough for his grandparents to beam with pride.

I realised that the next step would be to get him to say yes and no. With process of elimination, at least I could zero in on what he exactly wanted. He was growing up and his needs also became more complex. No matter how hard I tried, he could not say YES and NO. Sometimes I wish the language development and speech development were more in tandem, life would have been much easier. I am sure this area is in need of more research.

But he was slowly getting control over his right hand fingers. He started using them to convey YES and NO. YES by gesturing as we do when we call somebody and NO by doing the stop sign. So I would go “Are you hungry?”And he would gesture YES or NO. This was a major milestone in his communication development. Even today he uses these gestures quite efficiently to get what he wants.

Over the years I have tried numerous techniques. As he very well understands the written word and is a genius when it comes to mathematics, I had no great difficulty in making him understand concepts. I use flash cards to get him acquainted with new words and he also has a unique ability to identify new words, just by the way it sounds and their formation. We also used PECS (Picture exchange communication system) and a speech device (more on that in my future blogs)

http://www.pecsusa.com//

While it is a great tool for children with Autism and related disabilities, I found it limiting in Yatish’s case because of the physical challenges.

Yatish has a great sense of humour and he always has an opinion on everything. If you talk to him, you can feel how much he has to say. Yatish understands about few thousand words but can say about 6 to 7 words, so my biggest challenge is to bridge that gap, meanwhile I am fascinated, as to how much a few gestures and even fewer words can convey......