The numbers talk to me!

Every child can learn, just not on the same day, or the same way.-- George Evans

Yatish was about two and half years old and I was taking him to the Early Intervention Centre at Sophia Opportunity School, Bangalore. He was a bit bored with playing the same toys in that place and the therapist in desperation brought out some felt numbers which were meant for older children. Yatish was so fascinated with them it was almost to the point of obsession. But there was method in this madness. The therapist laid out the numbers and read out aloud one, two, and three and when she asked him can you give me one, he gave the correct number. We all thought it was a fluke and asked him other numbers and every time he gave out the correct number. This was bizarre. Here was a child who could hardly keep his neck steady, use his hands properly, had any trunk control, but his mind worked like magic. This started his fascinating journey, into the world of numbers.

He progressed from single digits to double digits and from even numbers to odd numbers, missing numbers, subtraction, addition, multiplication as also the concept of zero. To date, I have never taught him anything. He just knows and it seems that in the deep recesses of his mind, he has everything worked out.

The biggest challenge was to give him an avenue for expression. I had limited resources. His severe disability and his co-ordination challenges prevented him from using computers without appropriate modifications, as also lack of qualified people who could help him. We were left to our own devices. He had two tools which I could use. One was his pointing. He was getting good at it and then he could grasp. We would write a sum on paper and give him a few choices and he would point at the correct answer. (He had a 100 percent strike rate!) . His favourite is multiplication. He has a special ability for that. He can easily multiply 3 digits numbers and give you an answer in a matter of seconds.  We also worked with custom made flashcards. We painstakingly made flash cards of each of his lessons.

Yatish is like my Vodafone pug. He goes wherever I go and does whatever I do. I had this habit of reading the Sunday newspaper and Yatish used to be on my lap, and he always seemed like he was engrossed in reading the newspaper. I was quite amused and asked him to point at a word in the newspaper and lo he did it. This was creepy, I am sure he would never have heard about that word.  It was impossible. Then I tried with few more words and he would get it right every time. I figured out that he would concentrate on the phonetics and the way I said the word to figure out the word. Over the years he has gotten better with it and is part of the spelling team in his class today.

Yatish’s comprehension has increased substantially and whatever he lacks in his physical ability, he makes it up with his superior cognitive abilities. He never gives up on trying. When you give him a new gadget, he spends hours together figuring out how the stuff works. Mobiles are his favourite and now his touch screen computer and his touchpad. We are extremely happy with the way he has made progress.

The day is not far off when he can do all his lessons on his computers and take on the academic challenges. As of now I am waiting for him to hone his skills on the computer and do more productive work.

Living life in slow-mo..

Experts say that the first 5 to 7 years in the life of a child is the “golden age or critical period”. It is a time of growth and the most rapid development in the human brain. It is a very sensitive period with the brain being bombarded with various inputs from the surrounding environment. The brain is at its plastic best and is open to accepting various kinds of learning and enrichment, both positive and negative. Malnutrition and lack of stimulation can undermine this growth phase.

Yatish was getting to be 7 years and while he had progressed rapidly in terms of his cognition, his physical growth was a big worry. He was scrawny, his eyes were drawn in and he was painfully underweight. I was worried, worried that we were in a catch 22 scenario. If he did not get enough nutrition he would not be in a situation to do the physical exercises, which was so vital for his development. But giving him the right nutrition was a bigger challenge. He was a small eater and his reflux was still a worry. He had a great limitation in the choice of foods and the texture of foods. He could not eat hard foods, as his chewing function was under developed and he could not take in liquids as he would aspirate and choke. He hated pureed foods. Every mealtime was a battle. It tested my patience and skill levels and I dreaded it.

Dysphagia or difficulty in swallowing is a common problem in children with cerebral palsy due to oral motor dysfunction. Poor lip closure, poor jaw control or tongue thrust can affect the child's ability to chew, drink, and swallow. Drooling is also a symptom of poor oral motor skills. Poor posture and weak head and neck control pose great problems in feeding. As also children who have a high degree of spasticity burn a lot of calories during the day by way of their muscle contractions. It was absolutely a no win situation.

http://www.cerebralpalsysource.com/About_CP/malnutrition_cp/index.html

I had to get this right. He had undergone two surgeries in a matter of one year and he was spending at least 3-4 hours in some kind of therapy, apart from school. The key words were consistency, ease of feeding and nutrition. Every weekend was an opportunity to try new foods and arrive at a menu which worked for us and also tweaking recipes to suit his requirement. It was also one way of taking away the monotony of eating the same food everyday.

I am totally against force feeding children. It takes away the joy of eating. Hunger is a basic instinct and every child will eat if he or she is hungry, which I found to be true even in Yatish’s case. When he was really hungry, the incidents of choking, throwing up were much lesser. An important learning is that, every child responds well to a routine in feeding. If the meal times were fixed, you would have less fussy children; this is especially true of a special child.

As we also did a lot of travelling around with Yatish, it meant I had to develop a travelling menu. What foods worked in a moving car, what worked in a flight, what is the best position to feed without causing much agony and spillage? What foods were a safe bet, when you went to somebody else’s house, what food could you give him in a restaurant? Which seat was the best when you travelled in a train?

It is amazing how in country which is not disabled friendly, you have to think laterally and come out with solutions. All this cannot be figured out at one go as it takes a lot of effort, trials and errors to arrive at the winning formula. You have to slow down, look at the problem objectively and arrive at a solution, use your intuition to guide you.

To bring up a child in the way he should go, travel that way yourself once in a while. ~Josh Billings

Déjà vu

(Sorry for not posting in a long time. A hectic India trip, a new treatment for Yatish made sure my writing hand was really busy doing other things.)


It was almost a year since Yatish’s surgery and there were still a few problem areas which needed to be addressed. At this time there was a National Conference on Disability happening in Bangalore and one of the keynote speakers in this conference was Dr. Takashi Matsuo, a renowned paediatric orthopaedic surgeon from Tokyo, Japan, who has pioneered a spasticity release technique called OSSCS.

Orthopaedic Selective Spastic Control Surgery (OSSCS) is a surgical procedure to control or reduce spasticity or hyper tonicity in Cerebral Palsy patients. Various types and severity of varying degrees of hyper tonicity can be controlled by the appropriate use of selective muscle release surgery.

Since Dr. Sharan was hosting Dr. Takashi, all his patients had a chance to consult with him. I found him to be exceptionally sprightly considering his age (he was almost 70 years) and had child like enthusiasm. Every new sighting of a problem area got him all excited and it was amusing to see him jump on to the chair, with both his legs up. For Yatish he advised to release a few more muscles to improve his functionality.

Dr.Takashi was supposed to perform these surgeries along with Dr. Sharan, but poor man was not expecting the volume of patients, he would have to deal with. Yatish was the last in line but by the end of the day, he was so exhausted that he did not want to do any more surgeries and so Yatish’s surgery was cancelled. We were quite disappointed as we were mentally prepared for the surgery and so was Yatish and now we had to wait for another day and Dr. Takashi was leaving to Japan the next day.

Finally Dr.Sharan performed the surgeries himself. This time around we knew what to expect, but nothing can undermine the pain and suffering, which Yatish had to put up with. He was in plaster for the next 6 weeks albeit this time there were no fixators or pins and it was all soft bandages. He had to lie down the whole time without much movement, but he was very patient and in spite of his multiple wounds, he coped and recovered quite well.

Now we had to start the arduous rehabilitation process. Along with a tough rehab schedule, Yatish also had to do school and then wait for me to finish my job. It was really hard on him.

One of the participants in the conference was a stem cell research company from China and they did a presentation on how stem cells were being used effectively to treat various conditions including cerebral palsy. I did a lot of reading up and also wrote to doctors in Malaysia and at AIIMS Delhi. Stem Cell research was in very early stages of experimentation and everybody told me to give it a few more years.

You must be wondering after all these surgeries, would Yatish sit up and walk. Well the truth is we can do any number of interventions to improve his condition, but it will take a divine intervention to make it go away. So with equal gusto, we set about appeasing God, visiting temples, performing poojas and rituals, but I realise that God has his own agenda and to this day we wait for redemption....

Get schooled and be damned...

As I said before, Dr. Sharan felt that we should go to his main centre, as the facilities were better there. We also attended a parent’s support group meeting, which the doctor had arranged. After that the Doctor would occasionally refer me other parents, whose kids were to undergo surgery and I would talk to the parents about my own experience and what to expect out of the surgery.

As our association grew, somewhere deep down I felt that I could contribute more and thus I ended up working for the doctor. It did a sea of good to my self confidence as also to Yatish as he was getting better therapy. For the first time, there was an integrated approach to his rehabilitation and all the therapists Physiotherapist, Occupational therapist, Speech therapist and also a special educator worked together. There was also hydrotherapy. In spite of a lot of constraints they tried to provide the best possible rehabilitation.

http://www.recoup.in/jcms/index.php?option=com_content&task=view&id=23&Itemid=86

 http://www.rehabcorp.com.au/hydrotherapy/benefits-of-hydrotherapy.html

I was very keen to send Yatish to a normal school. I greatly believe that inclusive education is the best for any disabled child, if given in the right environment especially if the child has no real cognitive challenges. This sent me on a pursuit of finding a school for Yatish, which would take him in, in spite of his physical challenges. I found one very close to my work place. They had a resource room, which had special teachers and Yatish would spend the first half of his school time there and the next half in the normal classroom. I was very happy that I could find a school and there was also the teacher from his previous school who was now a teacher in this new school. It was turning to be a perfect arrangement.

But it turned out that I spoke too soon. To start with we had a very crude wooden chair in the resource room and a baby stroller as a seat in his class room. Yatish had to sit in this arrangement for almost 4 hours and it was taking a toll on his health. The class room had almost 40 children and Yatish was made to sit very close to the black board, and I would often find the chalk powder all over him. Since he cannot close his mouth and tends to inhale through his mouth, he started getting chest congestions.

The class rooms were cramped and I did not receive any help from the school for toileting, feeding or even to just straighten him up in his chair. Thanks to the understanding doctor, I could take a break from work to go to Yatish’s school to feed him in his break time. Even a small request to move Yatish to a room on the ground floor, was met with resistance from school and a long explanation as to why they could not do it. It was more a take it or leave it attitude. You may be wondering why I did not get him out of the school. I had no choice. There was no school, which would take him.

Yatish was up for one more surgery (more on that in my next post). It took up about a month of his school time. He had become really weak. We had to do something about seating, which was turning out to be a huge problem. We started to look out fabricators who could make a customised chair for Yatish. Importing a chair from abroad would almost attract 150% customs duty, which would push the cost of the chair to almost about INR 5 lakhs, which was insane. Even if we got it, it would be just a matter of time, before he would outgrow it.

We finally found a person, who was manufacturing motorised wheel chairs. We thought he would be able to help us and engaged him to design a manual chair for Yatish. After spending time, money and considerable effort, the resultant product turned out be awful looking and highly uncomfortable heavy metal contraption. But it was too late and as Yatish’s school term started, he had to do with it, till we found something better.

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.....