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......

The long road to recovery....

As the six weeks of being in plaster ended for Yatish, we heaved a huge sigh of relief, only to get on the more arduous journey of physical rehabilitation. Before we started the physical therapy, Yatish had to get the external fixators removed which were inserted in his leg after the osteotomy and also the plaster .The physical therapy had to start immediately, so as to not lose the benefits of the surgery and also prevent atrophy of the muscles because of the limbs being in plaster for long time.


The wounds had not completely healed up and Yatish was still in soft bandage. The doctor told us to start the physical therapy and referred us to the hospital, where his physical therapist was consulting and which was closer to our home. I still remember the sight of the multiple wounds on his legs and hand; I was shaking, but was trying to be brave for my child’s sake. The first few days were a battle of sorts. We had to find a way to get him to cooperate between all the pain and agony. My little boy surely and steadily made progress. We tried to make the sessions more interesting for him by telling him stories, singing songs and reading books. I am ever so thankful to the therapist for being so patient and understanding. Yatish made friends with all the hospital staff and was ever eager to show off his achievements. So every day, he went around the hospital corridors in his KFO’s (Knee Foot Orthosis), along with his therapist and chatted with everybody on the way, which was indeed his walking exercise.

We also had to make do with whatever we had around the place too, so sometimes kneeling exercise meant kneeling and looking out of the window at the fireworks, because it was festive season, playing with all the gadgets the therapists used and talking to other patients.

The surgery did improve his functionality, he had better neck control and was using his hands better, the scissoring of his knees reduced and was slowly learning to sit with support, but still we had a long way to go. The hospital became our second home and the therapists my friends. They were a great support to me in all ways. But soon we realised that the hospital did not have enough equipment needed for Yatish’s rehabilitation and the doctor also felt that it would be good idea if we could visit his main centre where all the facilities were available.

As Yatish recovered from his surgery and was making progress, I was determined not to stop his school. I moved him to a school closer home, so I could balance my house work, his therapy sessions and still not miss out on school. I am happy that we made that decision, because Yatish loved going to school. He had a few buddies in school, who looked out for him and promptly gave me an update on his activities. I once was a witness to an amazing conversation between Yatish and a little boy in his class. (Sorry, I don’t recollect his name). Yatish used to sit on his colourful wooden chair all strapped up and this boy was quite fascinated by his chair. He walked up to Yatish and asked him

“Why are you sitting on the chair “and Yatish pointed to his legs

The boy said “oh you can’t walk, but, why can’t you walk?” and Yatish pointed to his head

The boy said “something wrong with your head” and Yatish showed his ‘yes’sign

The boy examined his head closely and said, “Nothing wrong with your head, you need to grow up and you will be fine”

I wish it was so easy, but even though it is not easy as just growing up, I still share the conviction of the little boy and hopefully one day put my boy on his feet.....