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.....

Going under the knife!!!!

Once Pushpa Bopaiah told us about Dr. Sharan, we read up all about him. He was writing a column in Times of India, and that is how I was familiar with his name and we decided to take an appointment with him and see how it would go.


http://www.deepaksharan.com/

http://www.recoup.in/

We met Dr. Sharan and he examined Yatish and went about quietly taking his pictures. He is a man of few words and goes about his work with a no nonsense attitude. Even to ask him an extra question seems like an intrusion in his work. So here I was, sitting in front of the doctor all confused and anxious in anticipation of what he would say and he was all cool and composed, calmly jotting down Yatish’s condition. He said that there was a contracture in his hip and we had to take an X-ray to confirm this. He also noted down the areas where surgery would be needed to release the spasticity. Once the X-ray results were out, it confirmed his diagnosis. Spasticity involving the hip muscles, mostly in the groin, can cause the hips to gradually come out of their sockets. This can be a painless process, but can result in a severe deformity of the entire hip joint and eventually cause a great deal of pain.



Before the whole thing could sink in, we had already decided on the surgery dates. Many a times, in these kinds of situations, we have to make decisions without really knowing the final outcome. Whatever improvement it brings and if it means a step forward, it is good enough. This is the only mindset you can have, especially when dealing with a disability like Yatish’s.

Within a month of meeting Dr.Sharan, we were in the hospital, waiting for Yatish’s turn for surgery. He was to undergo a surgery called SEMLARASS (Single Event Multi-level Lever Arm Restoration and Anti Spasticity Surgery). Two types of surgeries were to be performed on him, one was the soft tissue surgery to release his spasticity and the other was the osteotomy to correct the bone deformity which was developing in his hips.

http://www.recoup.in/jcms/index.php?option=com_content&task=view&id=109&Itemid=226

I had no experience to fall back on as nobody among my near and dear ones had undergone any major surgeries. It was quite unnerving and at the same time, there was hope and anticipation that, the surgery might help him, to get some motor control.

We were advised not to feed Yatish since midnight as the surgery was scheduled next morning and he was to be administered anaesthesia. The pre- surgery, surgery and post surgery lasted for about 4 hours and perhaps it was the longest 4 hours of my life. Once he was out of the OT, both his legs and his hand were covered in plaster. He almost weighed 30 kilos.

His legs and hands were to be plastered for 6 weeks and those 6 weeks tested me both mentally and physically to my limits. It was physically exhausting and emotionally draining experience. I had to find ways to work around his plastered body and also keep his spirits up, because for 6 weeks he had to sleep in one place and in one position and also bear the pain.

God! No child should ever undergo any kind of surgery! It is just not fair!!!

PS: Sorry I had to remove the previous surgery picture, because it seemed quite graphic...

Healing with the horses.....

Hippotherapy or equine therapy means treatment with the horses. For the first time when I heard about equine or hippo therapy from a fellow parent, I was not sure whether I should take Yatish for this therapy and whether it would help him. I had doubts like how would he sit up on the horse, would he be scared etc. I got the contact of Pushpa Bopaiah, who is the one of the very few qualified Hippo therapists in India. She was having her sessions in the army campus and the horses were from the army stables. The sprawling army grounds were an ideal setting for horse riding. Pushpa is a rare individual who has combined her profession of special education and her passion for horses, into her mission to help special children. The Healing Horses, equine therapeutic training programme run by Pushpa, provides therapy to children with varied disabilities.


http://www.healinghorses.in/index.htm

Once I met Pushpa, all my fears were allayed. Yatish was ecstatic seeing the horses. Pushpa ensured that he was safe and secure with the trainer holding him. It was a 45 minute session and the children rode around the grounds doing different strides, plucking leaves, counting numbers and playing with rings. Yatish absolutely loved it and looked forward to it every weekend.

The three dimensional rhythmic gait of the horse is very similar to human gait. So when the person rides, his gait is stimulated by movement of the pelvis –rotation, backwards and forwards and side to side movements. Hence it helps in improving posture, balance, mobility and also motor functions. It is also believed to improve cognitive, behavioural and communication skills. There is also some kind of bond which develops between the horse and the rider, which cannot be quite explained. Whenever I saw these kids on these huge horses, it looked as if instinctively the horses knew that they had a sick child on their back and they took utmost care to make their strides gentle. It was an amazing sight to watch.

The hippotherapy continued for quite some time, because this was one therapy which Yatish would do 100 percent without much fuss. He loved the whole routine of driving to the grounds, doing the therapy and having his breakfast at the army canteen.

Pushpa worked closely with Dr. Deepak Sharan, who is a renowned Orthopaedic surgeon and has done some pioneering work in spasticity release surgeries for cerebral palsy patients. She suggested that it would be a good idea to consult him and see if we could do something about Yatish’s spasticity.

Until now we had never thought about surgery and considering how tiny and frail Yatish was, doing any kind of invasive surgery was something we were not sure how Yatish would take. But we had very few choices. We had checked on Botox, but the effect of Botox stays only for a short time, so we have to keep giving it at regular intervals and the follow-up therapy had to be really good, to get the real benefit. There is also a drug called Baclophen, which is a muscle relaxant and an anti spastic agent, but it has its side effects and is generally not suitable for younger children.

I fixed up an appointment with Dr. Sharan and this was the beginning of a new chapter in our lives..

A whiff of strife!!

In my random research of CP treatments, I came across HBOT or Hyperbaric Oxygen Therapy. Hyperbaric Oxygen Therapy (HBOT) is a method of administering pure oxygen at greater than atmospheric pressure to a patient in order to improve or correct conditions. This is done in a pressurized chamber, so they can administer 10-15 times more oxygen, than normal atmospheric levels...

The theory is by providing increased levels of oxygen to neurologically impaired children; it helps in increased blood flow and reduces any pressure within the brain caused by swelling, restoring the functions of the blood brain barrier and cell membrane. It also neutralizes toxic products in the brain and enhances growth of new blood vessels.

HBOT is being used since 350 years (yes, you read it right!) even before oxygen was discovered!!! It found currency in treating decompression sickness in deep sea divers. Later it was used to treat many conditions including CP.

For me the challenge was to find a facility in Bangalore. There are very few private hospitals in India which provide hyperbaric medicine. Most of the chambers are in Military hospitals.

http://www.hyperbaricindia.com/hyperbaric_location_in_india.php

I came to know that the Institute of Aerospace Medicine in Bangalore had a
hyperbaric oxygen chamber, but then it was not easily accessible to civilians. However we still thought we should give it a try. We met Lt. Col Dr. KK Tripathi who was heading the hyperbaric medicine department. He was not very convinced that it would help Yatish, firstly because, the equipment they were using was pretty ancient (1970s make) and not suited for small children and they had not treated any CP kids. They were predominantly using it to treat frost bites, diabetic ulcers and patients who had undergone heart surgeries. But I still wanted to try, because I had read so much about it.

http://en.wikipedia.org/wiki/Hyperbaric_medicine

After completing the formalities, we signed up for 10 sessions to begin with, it usually takes about 40 -50 sessions to show any results. The session would be of 45 minutes duration. The chamber had a capacity to take 6 people. You had to wear a mask, connected to oxygen supply pipes. In our case, I had to sit in the chamber with Yatish on my lap, holding the mask over his face, since they did not have kid sized masks and it was an ordeal to hold the mask in place and that too for 45 minutes (I was paranoid to lose even one cc of the precious gas!). So I struggled in that chamber, feeling claustrophobic, since I would not be wearing any mask myself and also of catching any infections from other patients using the chamber, because hyperbaric medicine was the last resort for many of these patients many of whom had glaring wounds and lesions. I cannot quite put in words my state of mind, but I still did it, thinking it might help Yatish somehow.

In order to pass time (F-O-R-T-Y F-I-V-E mins), I started reading books for Yatish, little knowing that I had an eager audience even in that dungeon. One day I could not take Yatish to the session, he was not feeling up to it. So the next day when I went for the session, this old man, who had gangrene on his foot, and who had never acknowledged our presence before, came to me and said “daughter, you will never know how your stories have helped me to keep going! Even though they are simple kid stories, I look forward to them eagerly, thank you for helping me; it has made my life a little bearable”!

To think of it I read those stories just to make my life more bearable and to distract Yatish from that ugly mask. Strange are the ways of life!!!

The goals we were looking for were improvement in speech and improved motor skills. But even after 20 sessions, we were not quite there and moreover, we were on borrowed time. According to the doctor ,there were lot of people non-civilians who were having chronic conditions and this therapy would benefit them and compared to that Yatish’s condition was not pressing!!

The standard is 40 – 50 sessions, so I will definitely give it one more shot, whenever it is possible to do so.....maybe in a better kid friendly facility.....

Life’s lessons........

“When it becomes more difficult to suffer than to change ... you will change.” Dr. Robert Anthony

While I was trying all these alternative therapies, somebody suggested us neurological reorganization therapy. It is a movement-based therapy that replicates the entire developmental sequence that infants use to form appropriate brain connections. Developed by Carl Delacato, the Delacato therapy model was used for the treatment of brain injured individuals, and those whose neurological organization in some way had been interrupted. It was very popular in the 60s’, but later on, the American Academy of Paediatrics criticized the treatment method.

Even though I had done some research on this, I still thought I should give it a go and this landed me at Association for Physically Disabled.

http://www.apd-india.org/therapeutic_interventions.html

It is a NGO and does excellent work for poor disabled people and they extend their services even to rural areas through their outreach programmes. I would take Yatish to this centre and they would do exercises, which was called “patterning”, with symmetric movements done rhythmically on both sides of the body. Here again the intentions were good, the execution of the therapy sessions was appalling. Done by trainees who did not have relevant academic background to attempt such a treatment, you were not sure if you were getting the real deal.

But all was not bad. I met an exceptionally resilient boy called Waqas, a 13 year old who was quadriplegic and had developed his own unique method to come to a sitting position. He was studying in the school run by APD. I admired his spirit and will to overcome his disability, in spite of his severe condition. One day I met his mother and she had this smile pasted on her face and was always joking around with the therapists. When I heard her story, I was so affected; it completely changed my thinking and my view about me and my situation.

Waqas had eight brothers and sisters and five of them had some form of disability. One of them was blind, one had polio, one had a heart condition, one was deaf and dumb and then of course Waqas, who had cerebral palsy. To top it all, Waqas’s father had a failed kidney, which meant he was on dialysis. They all stayed in a room which was 10 ftx10ft and the mother and other three children worked to look after the disabled kids and the sick father. In spite of all this, the mother had something to smile and joke about. I was so moved by this story. I remained affected for a long time. Even though Waqas’s mother had reconciled with her situation, I had not reconciled with their situation. It bothered me to no end. Not a day goes by; when I don’t thank God, for giving me education, a supportive family and financial means so I can look after my son and not worry about basic needs. Later when I had the opportunity to meet and counsel parents who had disabled children, I would always tell them Waqas’s story and tell them not to get mired in self pity, but to go out and do something about it, which I learnt from this uneducated woman, whose only goal was to do whatever it takes to look after her family.

Just so that Waqas is always in our memory, Yatish and me have named an exercise after him, in which Yatish comes to kneeling position from prone lying position!!!

This post is dedicated to Waqas and his mother for teaching me one of the most important lessons of my life!

Going Alternate.....

Yatish’s school was going fine, but then I was concerned about his head control, which he had not still achieved and sitting in the chair and to keep the head upright was quite a task. We had a therapist coming home to work with Yatish, but we felt the therapy he was getting was not adequate. As Yatish was almost 4 years old, we thought we should explore Biofeedback again. Now the EMG biofeedback facility was available in Asha Rehab.


http://www.ashafoundation.org/asharehab/emgbiofeedback.htm


So what is EMG biofeedback?? Surface electrodes are placed over muscles which have limited or no function. These electrodes do not provide any stimulation, but actually receive the motor neuron activity from the brain, brain stem and spinal cord as it arrives at the muscle site. These electrodes are connected to specially designed computers which process these motor signals accurately and rapidly and present them on a monitor in front of the person. In this way, an individual can actually see how they are utilizing brain, brain stem and spinal cord cells. The feedback is usually in the form of visual or audio signals. This goes hand in hand with physiotherapy.



The process itself was quite intimidating. Yatish would have these surface electrodes connected at specific areas on his body which needed to be stimulated and in his case they were working on the neck muscles and every time he would lift his neck, there would be a beep and if he held it longer, the beep would go longer. Yatish was still too small and it was a big effort to keep the electrodes in place. Each session would cost about 1000Rs and would be done once weekly. The success of the feedback depends a lot on the therapists involved and even though there was an enthusiastic team which was in charge of rehabilitation, we were not sure about their competency levels. So we had to let go of one more attempt.

Yatish had his summer holidays and we thought we should try Ayurvedic treatment. We went to Ayurvedic College run by Adichunchungiri Mutt and the doctor there suggested an oil massage and hot fomentation with some medicinal leaves followed by rubbing the body with rice porridge which had special herbs and a hot water bath. The whole process was laborious to say the least. But for any treatment to be effective we have to give some time to experience any visible changes. They suggested a masseur who would come home to do the massage. He also did Basti or enema therapy which involves introduction of medicated oils or medicinal preparation to the rectum. My study table doubled up as the massage table. The onus of getting the porridge ready and cleaning up the mess after left me completely exhausted. We did this for almost four months, but it showed no visible results in Yatish.

We were really getting desperate, while the mainline therapies were not giving us result; every alternative therapy we tried to follow was equally not working. Somebody suggested us Pranic Healing. It is a healing system developed by Choa Kok Sui. His healing method is derived from ancient yogic and chinese medical systems which helps in accelerating the body’s inherent recovery process. So off we went every weekend to  Master Iyer to take healing sessions for Yatish. Hubby and I also did basic and advanced courses in Pranic Healing. I am not sure if it helped Yatish, but for me it was a good distraction.

http://www.pranichealing.com/what-pranic-healing

I also took him to Yoga Therapy at Vivekananda Yoga Kendra and there was this old grandmotherly lady who actually took care of few mentally challenged older children, whom Yatish called “OM Ajji “, because she made him do OM chanting.

A friend of mine suggested Dr. Ramakrishna, who is a renowned homeopath in Bangalore. While I am not sure it helped his condition, it definitely helped his immunity. He was much healthier than before and slowly the doctor became our family physician.

My journey of demystifying alternative therapies left me totally confused and disillusioned. My observation is that these therapies are very subjective and every person’s experience is different. It may work for some and may not for some. It did not for me!

A ray of hope................

We were going through the net and found this school called Head start School of Montessori and also got to know that along with normal kids they also had a resource room for special kids. We met the Principal, a pleasant lady called Samina Mahmood. She put us on to the Administrator Geeta Nithyanand. They were apprehensive as they had never previously taken in any such child who was so severely involved. All the special children they had, fell into the categories of dyslexia, slow learners or autistic, but none of them with cerebral palsy. It took us three months and countless phone calls and visits before they finally agreed to admit Yatish. They told us that they would take him on a trial basis for two months and if they felt it was not working they would take him off. We were not sure too, as to how it would work. It was just not about going to school but we also had to find a way to make him sit in the school.


http://www.headstartmontessori.com/

We had heard about Mobility India, which made equipments for the disabled. So we fixed an appointment with the Occupational therapist there and got a wooden chair made for Yatish. To say that it was uncomfortable is an understatement. It was made with very basic materials. It had foam, which got really hot and Yatish was absolutely uncomfortable in it. But we had no choice and he had no choice too.

http://www.mobility-india.org/

Yatish was all set to go to school; we also took a house closer to the school, but then the resource room teacher who was in charge of Yatish quit. Again Yatish’s future was uncertain. The administrator told us that they could take in Yatish only if they found a new special educator or else they would not admit Yatish. Between all this we had met Dr. Pratibha Karanth, a Speech Language Pathologist, who runs a programme called Deall for autistic kids. She suggested an Occupational Therapist for Yatish and we met Bhaskaran, who had just started his practice. He is one of the most dedicated therapists I have met. He introduced me to one of his patient’s mother, who happened to be a special educator and she was looking for work. Thus I not only found a school for Yatish, but also a teacher for him.

Yatish started with 45 minutes classes. I would drop him at school and wait outside for him to finish his 45 minutes. This went on for 15 days and slowly increased his time to one hour and then slowly to 3 hours and I would go in between to feed Yatish as the teachers were not sure how to do it or you can say it was not part of their job. Anyways I did not mind it much. I was very happy that he was schooling and seemed to enjoy it. The two month trial period was over and Yatish had settled well and he went on to complete two academic years in this school.

This was one of the happiest periods for Yatish. He loved going to school and was part of most of the activities in school. He also had play dates with other kids and I made few friends as well. In his second year, two young teachers who were twins joined the school and one of the twins Dipti was in charge of Yatish. I have not seen so much commitment in such a young person. She worked with Yatish tirelessly to make his stay in school worthwhile. Yatish was the darling of most of the teachers who were predominantly women because Yatish never missed a chance to compliment them on their dress and jewellery.

The Montessori Method is quite suited for disabled kids. In fact it was developed by Dr. Maria Montessori, based on her research conducted on the disabled children.

http://en.wikipedia.org/wiki/Montessori_method

This whole experience resolved me to make a decision that I would strive to school Yatish in an inclusive environment.

Preparing for life..............

“If every child matters, every child has the right to a good start in life. If every child matters, every child has the right to be included. And that is so important for children with special needs."  Cherie Blair


This was possibly one of the most difficult periods in our lives. We were back from US without finding any answers; we were completely bereft of any funds and even though we knew what the problem was, we still had to deal with the same variables. Yatish was still going to Sophia Opportunity School and there he was working with Arathi Appayya, who was a special educator and was trained in US in dance and movement therapy. She was one of the most exceptional human beings I have met. She was not only a great friend to me but was equally involved in bringing out the best in Yatish. She was the first person to notice that Yatish had inclination for academics and she told me that we should start school for Yatish. This just opened a Pandora’s Box of sorts. For the first time, I realized that we not only have to take care of Yatish in terms of his physical needs, we also have to give him a fair chance to realize his intellectual potential. When I mooted this idea, most of them were apprehensive. But the spark in me was lit.

We started looking out for schools and it is such a pity that in India where we have a staggering 5-6% population with disability, which means around 600 million people have some kind of disability and yet our educational system has not put enough efforts to cater to special needs. Whatever we have is scattered, few and far between. I approached many schools and they had a standard answer, “our school is not equipped to handle special children” and many of the so called special schools would have taken in Yatish, if only he was independent. The Spastic Society also runs a school for CP children, but I was not keen to put him there, probably because of my low confidence on their ability to effectively address my sons needs… and moreover I was keen on inclusive education for him. I believe that special children have to ultimately live in the real world and sooner they can learn to cope with the outside world, easier it will be for them as much as it is important for the real world to learn to cope with special children.

http://unesdoc.unesco.org/images/0018/001866/186611e.pdf

In between all this we were looking for some fabricator who could design the body jacket, which the therapist in US had recommended. We finally got hold of a fabricator, who had this dingy workshop and we told him what we wanted. But I guess the specifications got lost in translation, because what we got as the end product was an impractical, funny looking contraption. Of course we could not use it.

We were told that we should try Bangalore International School as they took in special children and I spoke to the head of the special education department of the school and she told me to get Psycho educational assessments for Yatish from Spastic Society. To assess a special child, you cannot apply the usual IQ tests, but actually have to include measures from different tests to assess the various areas of cognitive functioning referred to as cross-battery assessment in order to correctly assess the child. Sadly even the referred organization had limited expertise in this matter which is truly disappointing.

http://www.cls.utk.edu/pdf/keys_ld/chapter2_pa.pdf

But then these international schools charge exorbitant fees, which we thought was not justified, let alone the thought of arranging the means. I had to look for something else.....

http://www.isbi.com/viewschool.asp?school=3433-Bangalore_International_School

Was it worth it??

Every time we think back, my hubby and me end up asking this question, was it worth the trip to US? Did it really help Yatish in anyway? The answer is an emphatic NO. But the only thing, I want to believe is that it shook me out of denial. I began to accept Yatish’s condition. It gave me a sense of direction and an idea of what would not help his condition. For the first time it sunk into me that my child would never be normal and the sooner I accepted this, I could help him better. I put on my B-school overalls and set about making a road map to Yatish’s future. Here is how the SWOT looked


Strengths

1.Had no intellectual disability

2.Did not have any other complications like epilepsy, so hopefully there was no downward spiral

3.No learning difficulties

4.No visual spatial perception difficulties

5.No sleeping or toileting difficulties

Weaknesses

1.Had no speech

2.Had a mixed CP, so his body tone varied from being very stiff to being floppy

3.All the four extremities were affected( both hands and legs)

4.Had swallowing and chewing difficulties

5. Muscle co-ordination was severely affected

Opportunities


1.Could use his superior cognitive abilities to make his life more meaningful
2. He was eager to learn , so schooling was a definite possibility

3. He was very co-operative, so responded to therapy

Threats

1.Did not know how to benchmark our efforts and there was always a fear of not doing enough

2.There was no definitive rehabilitation programme we could follow

3.There was always a fear that he may develop complications





We came back from US with mixed feelings, sad that it did not change anything and satisfied that we had done our best and now we were better equipped emotionally to deal with the problems. Now we had to take care of three things, physiotherapy, occupational therapy and speech. Since he was just a little over two years, we decided to concentrate on his physiotherapy. We did however meet a speech pathologist , once we were back in Bangalore, who advised us at that point of time there was nothing like a structured programmed we could do, but we should talk to him like any other normal kid, and not stop talking just because , he would not respond sometimes, which in hindsight was a great advise. Normally people when talking to children have a tendency to take the advice of coming down to their level a tad too seriously and more so with special children that they end up mumbling. I recollect an incident here; I was travelling in a train and there was this person, who saw Yatish and thought that he had figured it all as to how to deal with him. He started off gesturing vehemently, and Yatish looked pretty amused and started laughing, because he really looked comical. I quietly asked him if he had speech impairment and he understood what I was trying to get through to him. Of course I could not explain to him the Fis phenomenon and that Yatish would perfectly understand if he could talk to him normally.

http://en.wikipedia.org/wiki/Fis_phenomenon

We got back to Sophia School to continue his early intervention programme. By now Sr. Naina, who heads the Opportunity school had taken training in Allergy testing technique called Nambudripad's Allergy Elimination Techniques (NAET) and she was determined to put every child in the school through this test. I was not really convinced about this technique; however I felt there was no harm in giving it a go, since it was non-invasive. Nothing came out of it as expected.

http://www.naet.com/subscribers/what.html

http://www.revolutionhealth.com/stories/view/2e229a38bbe81029878b0013725222f6

One more experiment…… one more failure….A new day.. a new experiment…. The journey continues….. !!!!

6 degrees of Separation...

When my brother and his wife invited me to spend this summer with them, I was little apprehensive, since my last journey to US with Yatish was not so pleasant and this time it was going to be even longer about 25 hours. However I did really want to meet my brother and his wife and my cute little nieces. This time I applied for my visa from Melbourne and all the forms were completed online, got an appointment for the interview. The interview was a breeze and got my visa stamped in two days flat. My brother told me that we could visit Canada, and see the magnificent Niagara Falls. My last visit was in winter and during that time of the year it is completely frozen. So now I had to apply for my Canadian visa. I only had about 12 days before my journey and the Canadian visa office is located in Sydney. The visa process takes between 2-10 days. I sent all the papers and it was just 4 days to my journey date and there was no sign of my visa. So we mailed them asking them the status and I was relieved as they promptly replied saying it was already in the post. I called the airlines toll number was pleasantly greeted by an Indian sitting in his Pune office. He seemed equally thrilled and told me it is always nice to speak to somebody in the same accent and not have to put on one. He booked all the seats nearer to entrance and I also placed a request for assistance for Yatish.


The journey date arrived and we checked in. I could take Yatish’s stroller right up to the aircraft entrance and inside the aircraft they have an aisle chair, which is used to transfer wheelchair bound passengers on to their seats, which meant that I did not have to carry Yatish. Our first leg of journey was between Melbourne and Sydney, which was about 45 minutes. We were pleasantly surprised, when we were upgraded to business class. Yatish was very thrilled to have his own TV and could watch his favourite cartoons not to mention the comfortable seats. Our next leg of the journey was between Sydney and San Francisco. We had about 2 hrs wait time before our next flight and by the time we freshened up and grabbed a bite, we were off again. The airline staff helped me with Yatish and we were comfortably seated, but Yatish was not happy.

He told me that we should go to the front of the aircraft as he had just passed the business class, and thought the seats there were better and they had their own TV. It is very difficult to explain to a nine year old that you can’t expect to be lucky every time to be upgraded to business class, when you have bought economy class tickets. So every time a flight attendant passed us, he would nudge me to tell her to move us to business class. It took a lot of convincing and cajoling before he reluctantly made peace with his surroundings. I wanted to put my cabin luggage in the overhead compartment, but since I am vertically challenged, I could not reach it and was looking for the cabin crew for help. Just then the person sitting next to me volunteered to help me put the luggage. I thanked him and suddenly he flashed a card which said that his name was Jonathan and he was deaf. He was a very sensitive guy, seeing that I was trying to balance both the lunch plates on my lap board, as I was afraid Yatish would knock off the plate, if I placed on his, Jon took my plate and held it for me till I finished feeding him.

Jon wanted to read and wanted to put on the overhead reading light, but noticed that light was falling on to Yatish’s face and since he could not fix it himself , he called the cabin crew to fix it. He tried to explain what he wanted in sign language, but they could not get it, no matter how hard he tried. Finally he asked for a piece of paper and wrote on it what he wanted. They fixed it and also came back with a written apology for being insensitive. This started a flurry of written exchanges between Jon and me. He wanted to know more about Yatish. I also noticed that he was very good in solving sudoko puzzles. So Yatish ended up showing off his math skills too. After every movie, they would display the aircraft position and Jon would tell Yatish in his sign language how far we have reached and how much more distance was there to be covered. They had perfect understanding. Jon would look over Yatish every time I had to visit toilets.

It is especially difficult for kids on a long flight. So I took Yatish up and down the aisle couple of times, so he could stretch. There were buttons on the arm rest of our seats, one for the lights and the other to call the attendant and Yatish was so bored that he started playing with the buttons. I noticed that every 5 mins an attendant was coming and checking on us and also getting a little testy. I was half asleep and not really sure what was happening. When I realised, I told the attendant to ignore any request for attendance from our seat as there was no way I could stop Yatish, bored as he was with the whole flight experience.

Finally we reached San Francisco and bade goodbye to Jon, before leaving he wrote on a piece of paper”you are an amazing mom and your son is lucky to have you” and I wrote back “Jon you are a kind soul, thanks for all the help”. I guess this is what they mean by “6 degrees of separation”.

When I reached SF, we had to do the immigration checks, but because of Yatish we did not have to stand in the long queue and it was all done very quickly without any hassles. I wanted to call my brother, but I had no 5 cent coins, so went and bought a coffee, so I could get some change, then went around looking for a coin phone booth. After locating one no matter how much I tried I could not get through and had already lost 10 cents. Finally my antichrometophobia took over me and I decided to give up the whole idea of calling him. In this whole process, I narrowly missed, missing my flight. The flight from SF to Boston is about 5 hrs, but it seemed the longest. It is a domestic flight and you are not served food free and you have to buy it. You can buy food only if you have a debit card, which I did not have. Thankfully I had carried some food for Yatish, just in case and so did not have to go hungry...We reached Boston by night and the airline staff helped me with the luggage and my brother was there to receive me...

Going through the Stretch.....

As I write this I am on my second trip to the US with Yatish, thought it would be a great idea to compare both trips and give you an account. Meanwhile I will tell you about the physical therapy sessions. After we completed all the scans and tests we were referred for the physical therapy evaluations and we were to meet the physical therapist (as they call in US) Nicole Polizzi.

http://www.healthgrades.com/health-professionals-directory/nicole-polizzi-pt-9e408c37

Physical therapy is the cornerstone of the treatment programme for cerebral palsy. The aim is to help a child’s mobility to develop and to carry out and teach exercises designed to avoid contractures, bone deformity and unwanted movement. In general, it enables to obtain maximum physical function. There are three aspects to it viz: Stretching, strengthening and positioning.

http://www.cerebralpalsysource.com/Treatment_and_Therapy/therapy_cp/index.html

We had started physiotherapy for Yatish when he was two months old and come to think of it Yatish has had physiotherapy for most of his life, so much so that Yatish is quite well versed with his deltoids and trapeziums and knows exactly where they are located. Over this period of time, Yatish has had numerous physiotherapists and all kinds.

To this day, I am not very sure, what should be the goal of these sessions, even though I would have spent over 2000 man hours on physiotherapy and not to mention the commute time to get to these places, in terms of larger goals like sitting, standing or walking we have not reached there yet and we are not sure if we will ever. Yes, he does not have any contractures and bone deformity, but apart from that we still have a long way to go.

According to my experience, I feel the therapists in US give priority to managing the condition than achieving the physical goals. So they rely heavily on gadgetry to make life easier for the person and the carers, while in India, gadgets are a thing of luxury. Even for a simple thing like wheelchair, we do not have safe roads, so to ask for footpaths for wheelchairs is simply too much and most of the buildings do not have ramps, some of them do not have lifts. This is true of even homes. So what is the point in paying through your nose, getting a wheelchair which will cost you anywhere between 50,000 to 3, 00,000 INR and not being able to use it outside your home? Life for the disabled in India is pitiable, because even for normal mortals, life is full of struggles to get around; the disabled of course stand no chance. So they end up missing on every simple experience like going to the supermarket, getting around in public transport, going to a movie or just going for a stroll. Even though there has been some change, it needs a strong political will and huge community effort in terms of awareness and empathy for anything to happen in this direction.

After staying for 9 months now in Australia, I have been able to take Yatish to every possible place imaginable, to the 20-20 cricket match at MCG, Footy match at Etihad stadium, the beach, sightseeing to numerous places, all the possible malls, in the trams, trains and to the disabled friendly playground, even for strawberry picking effortlessly, not to mention his school trips to the farm, supermarkets, post office. I am fortunate that I am able to give all these experiences to my son but I dread to think, how our disabled in India are living with impoverished experiences and we are doing nothing substantial towards this.

We took a few physical therapy sessions at the Boston Children's Hospital and also got a home programme. The therapist suggested that we get a wheelchair, a trunk support brace, both of which would cost us upward of 5000$. So we let that wait.

http://www.convaid.com/fixed-tilt-positioning-wheelchairs-cruiser-cruiser-wheelchairs-style-classic-c-1_2_3-l-en.html

http://www.ottobock.com/cps/rde/xchg/ob_com_en

What is this now??

Serendipity: Looking for a needle in the haystack and finding the farmer’s daughter!!!


This is how I can explain what happened next. While the doctor was going through the MRI scan, it showed a cyst on Yatish’s tongue. He thought it might be a lymphatic malformation and may have to be removed surgically. He referred us to the ENT department to get it further investigated. We were completely stumped, this was turning out to be murkier than we expected. Now we had no choice and had to go ahead and get this checked.

http://www.childrenshospital.org/az/Site1256/mainpageS1256P0.html

We had to meet Dr. Trevor McGill, Otolaryngologist (phew!!), who is a super specialist in this field. He did an endoscopy, wherein the endoscope, which has a long tube with a lens at one end and a video camera at the other end, is inserted through the mouth to basically figure out what is happening in there. We also had the opportunity to see the video of my son’s oral structure and it was quite unsettling to say the least, but the doctor seemed all excited.

http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&last=mcgill&pict_id=9904140

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Endoscopy?OpenDocument


He felt this was “possibly a foregut duplication cyst or a dermoid and not a lymphatic malformation”. For us the question was is that good or bad? We eventually learnt that the foregut duplication cyst was quite a rare occurrence and it was basically a normal tissue in an abnormal location and in Yatish’s case was quite benign and would not cause any problem to him and there was no surgical intervention needed to remove it. We heaved a sigh of relief. After all, this whole exercise came to nothing, except that we made Boston Children’s Hospital a little richer. Dr. McGill is a very enthusiastic person and he had such a nice way about kids, that I still remember Yatish going through all this without much fuss.

This thing out of our way, were suggested to meet the pulmonologist next to do a barium swallow test. As I had mentioned in my earlier post, Yatish had a problem of reflux and a stridor, which is a continuous wheezing kind of sound, occurring due to his underdeveloped laryngeal cartilages. The barium swallow test would help us to know, if the food was going in the right tract and not getting into his lungs. But everybody felt that he had no visible problems and as it was Christmas time and a holiday season, we could not fix an appointment and we just let it go.

http://draft.blogger.com/goog_794409343

Next we had a physical therapy assessment, but then since the hospital was closed for Christmas, we also took a break and headed to New York.

Hoping against hope!!

When hope is hungry, everything feeds it. ~Mignon McLaughlin



As we continued to speak with Dr. Coulter, he suggested that we also do MR Spectroscopy just to rule out any other cause for his disability. The Magnetic Resonance spectroscopy is done to study the metabolic information about brain tissue. It meant that if there was problem at the biochemical level, it could be treated with drugs. This new development sent waves of excitement. We are all hoping that, MRS would be the indemnity we were seeking. It would mean all the efforts we put in coming to the US and not to mention the huge financial splurge would be justified.


http://spinwarp.ucsd.edu/NeuroWeb/Text/mrs-TXT.htm


All these tests are quite cruel to young children. If the test is the next morning, you cannot feed the baby after midnight, till the tests are complete as they will be administered anaesthesia and if the tummies are full they will throw up. But then you put up with all this thinking that the results would be worth the trouble.

I still clearly remember that day, we were up early in the morning, it had been snowing all night and we rushed to the hospital as we had an early appointment. I was so full of nerves and the MRS room was on the 36th floor. Yatish was sitting snugly in his pram, oblivious to what was happening, except maybe wondering why his mom was not force feeding him and must have been secretly happy about it. As we were going up the lift, somewhere on the 32nd floor an older looking lady got into the lift and the moment she laid her eyes on Yatish, she squealed “Oh my God, Oh my God”. I was taken aback by this sudden outburst and I looked at her, half nervous, half scared not knowing what had happened. Then she said “I have never seen such exquisite eyelashes like your son’s” and then she got out, wishing me all the best.

These are moments in life when it sets you thinking, we are so consumed with the thought of what we don’t have that we forget to appreciate these little things which we have. This is the beauty of creation. Here I have a son who cannot do anything by himself but has been endowed with so many beautiful qualities, what he does not have clearly pales in front of what he has.

The scan itself took about 3 hours and it seemed the longest 3 hours of my life. Now we had to wait for the results. That would take about two days.

When the results came, we were shattered. I am not quite sure whether it was the right thing to feel, but I was thinking since all the biochemical levels were well within acceptable limits, it meant, that the cause of his disability was nothing to do with the metabolism of brain tissue and hence no opportunity to treat and correct it.

Again we hit a dead end but then a new development happened and we were told to take one more MRI scan.......

The Big American dream....

Everyone who goes to American has this dream of making it big, but my dream was to see my son getting alright. If I went to the US, I thought I would be told, this is what is wrong with your son and this is what you need to do and we would do that and Yatish would be fine. We had sent all the medical records before hand and our first appointment was scheduled on the very next day we reached, thanks to the botched up visa process. Severely jetlagged and sleep deprived Yatish and me were in bad shape and there was this anxiety about what awaited us. Added to this was the cold winter. Unlike in India, car seats are mandatory in US and you are expected to have a pram for your kids. Thanks to my sister-in -law’s forethought and awesome planning abilities, she had made sure everything was in place and we settled in well and quick. No amount of praise can do justice to the way she and my brother took care of us. She was studying at the time, pursuing two masters’ degrees simultaneously and working part time. She had already done all the ground work and flawlessly worked out our appointments along with her own schedule. I am ever so grateful to both of them.


We had an early appointment; my brother dropped us at the Hospital and we walked in with lots of hopes. Our very first appointment was with Dr. Coulter, the paediatric neurologist.

http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&last=coulter&pict_id=1746404


He did the mandatory weight and head circumference checks.

http://www.infantchart.com/infantheadage.php

He did a neurological examination checking his hearing, vision, muscle tone and reflexes.

http://www.neurologychannel.com/neuroexam.shtml


Based on all the initial assessments he did, he drew a plan of action and the specialists we would have to meet and all the tests Yatish need to undergo.

Mind you, as an international patient, the fees charged are much higher and the robust American economy at that time made sure it squeezed every rupee out of us. Each appointment cost us an average of 800$, so you can as well imagine.

First we had to go in for the blood and urine tests, based on which the doctor would undertake metabolic studies. The first blood report showed that his lactate levels was very high, which gave us some anxious moments but then we reasoned out that, due to long hours of travel and fatigue, the high lactate acid level build up might be a possibility. So we were told to repeat the tests again.

http://health.yahoo.com/blood-diagnosis/lactic-acid/healthwise--hw7871.html


We had already sent the MRI scans and Dr. Coulter had showed these to Dr. Joseph Volpe, who is a world renowned Paediatric Neurologist and Chairman of Neurology at Boston Children’s Hospital. He said that the scans were indicative of neonatal bilirubin encephalopathy, which means that this disorder was due to the jaundice he had after he was born. In fact, in Dr. Volpe’s book “Neurology of the Newborn”, there is a picture on page 540 of a child with same problem. The MRI in that picture looks like the MRI that Yatish had.

http://www.childrenshospital.org/cfapps/research/data_admin/Site169/mainpageS169P0.html

But Dr .Coulter wanted to make sure that there was no other cause for his disability. So this time he wanted us to undergo MRI Spectroscopy....

My pillars of strength..... Seema and Girish

What a Trip......

This was Yatish and my first international flight, even though we had travelled domestic quite a bit. Since my brother had warned us of the snowy winter which awaited us, we got ourselves some warm clothes and thermals and whatever we thought appropriate. As you know having prams or strollers for children is not very common in India and since Yatish was just 2 and half years and was quite tiny, we had just got him a feeding chair and also there was little choice in prams and strollers which would suit Yatish. So we decided to take the feeding chair along with us. We had a stopover at Frankfurt and the flight was of 21 hours duration.

Somebody suggested that I give Yatish, Phenergan, which is a mild sedative when on flight, so he would sleep during most of the travel. It was a bad idea and it just did not seem to work with Yatish, he was not only awake during most of the flight but created such a ruckus, that people around us promptly changed their seats. I regretted having travelled alone. In the flight I had asked for infant food for Yatish, which means only milk. The flight attendant took the bottle from me after asking me numerous questions about the temperature, consistency etc. and filled it up and got it of course, without sugar in it. Now my son is used to drinking milk with sugar as any typical Indian kid and he just refused to drink it. So I asked the flight attendant if she could put some sugar in the milk and lo, the heavily accented German lady gave me a lesson in oral hygiene and how adding sugar in milk is a bad for teeth and gums. But with a hungry and screaming baby, it is last thing you want to listen to, anyways I listened to her patiently and the moment she left to attend other passengers, I quickly went into the pantry, grabbed a handful of sugar sachets and saved myself from her lecture once for all.....


For those of you who want to take a disabled person on flight this site is useful to check provisions provided by different airlines.

http://specialchildren.about.com/od/inthecommunity/qt/airlineinfo.htm

The stopover at Frankfurt was about three hours. Had enough time to change and freshen up. There was this old Indian couple visiting their son at Chicago, who were a great help. Now I also regretted having not got a pram as I could not put Yatish down. Once we reached Logan International airport, my sister-in-law was there to pick us up. It was quite chilly and windy. We had thought that since I was travelling alone, I should carry this single huge 40 kg capacity bag, which turned out to be a bad decision, since it not only did not survive the long flight and handling, it was pretty unwieldy manoeuvring it in the airport. It is always better to carry two bags. Now we were supposed to meet my brother midway, we took a bus from the airport and finally reached home.

Now looking back, I am myself astonished as to how I could venture with a small kid, with multiple challenges and no help whatsoever, without even thinking about missing the flight or any other such mishaps. Maybe the fierce urge to find answers overshadowed the fear of risk involved in taking such a kid on a long flight. Anyway we both made it without any incidents.