The first few months of his birth seemed endless...He had severe reflux, which meant he threw up often and we were constantly worried if he was getting enough nutrition. Anybody who has seen him at that stage, including me did not feel he would survive long...but the fighter he is managed to pull through...Then began the endless trips to hospitals, doctors, quacks, astrologers....Every doctor we visited wanted to wait and watch, which I think is right to some extent because the babies brains are growing at a faster rate and there are constant changes and development, which means you cannot correctly anticipate what they can achieve and what they cannot..
Those were days when we were in a state of denial. Any doctor who gave us hope was good and anyone who did not, did not know what he was talking...By now we had done CT scans, MRI scans and what not...
Choose your doctors with care, because if your doctor is not giving you the correct picture, you will lose out on precious time and any timely interventions, which might have helped the child. Sometimes you go by reputation and sometimes by experience and sometimes by intuition. I really appreciate doctors who have the guts to refer to other doctors , when they know they do not have expertise rather than misleading the hapless patient...
Those were crazy days; I would interact with anybody who was even remotely connected to this condition. One such doctor I met was a paediatrician from Chicago Children’s Hospital who was visiting his parents in India and he told me the story of his brother-in –law who had severe brain damage and that he was pursuing his university degree. He took one look at Yatish’s MRI scan and told me don’t ever give up on him, give your best and he will do the rest. At that moment, he seemed like God to me....
http://www.learninginfo.org/neuroplasticity.htm
Every parent wishes that her child should be the most intelligent and smart, but then the onus is on us. If you provide a nurturing and loving environment every child will do well. I believe that every child has immense potential.
http://www.umext.maine.edu/onlinepubs/htmpubs/4356.htm
The most important thing is to start early as in Early intervention, if you think your child is not catching up. Yatish started his infant stimulation programme at the age of 6 months at Sophia Opportunity School
(Sophia Opportunity School Sisters of Notre Dame, # 70, Palace Road, Bangalore 560 001 Tel: 22205683, E-mail: sr_naina@hotmail.com; Directress: Sr Mary Naina, Web: http://www. sophiaos.org. )
It not only helped Yatish, but it did wonders to my state of mind. I learnt more and more about his condition there. I met some very dedicated therapists and special educators. Riteish, Priya Sandeep, Arati,Cedricia and of course Sr. Naina. They have a decent set up and the advantage of access to resources from generous donors to their missionary....
Wednesday, March 31, 2010
Monday, March 29, 2010
My story....
Why me? Every time I ask this question to GOD and many I am sure in my position would do...I can hear only one answer...why not you? After 9 years of bringing up my special child with cerebral palsy, I realise what an extraordinary journey it has been and there has never been a dull moment in all these years...My life seems purposeful, more meaningful and challenging ... Along the journey I have met some wonderful people, who have helped me in my struggle.....My blog will contain some useful articles, links and I also encourage people who are working in the special needs sphere to share their contacts, so other people looking for resources can be benefitted... I value your feedback and would love to know if you are interested in any particular topic to be discussed ........
My story....
The beginning....
After marrying the man of my dreams, enjoying a great career run, my bundle of joy came in the form of my son Yatish. Even though my pregnancy in itself had no major problems, towards the end, we were worried about the growth of the baby...(maybe the stress of managing a start-up business, left me with little energy for myself and my baby). Yatish was born 2 weeks premature after a brief labour and forceps delivery, a tiny little thing with beautiful eyes. To top it all, he developed jaundice which prolonged for 12 days.
Physiological jaundice is a common occurrence among new born, which results in yellow colour of the skin and whites of the eyes caused by excess bilirubin in the blood, which is produced as a by product of normal breakdown of red blood cells. Very high levels of bilirubin, usually 25mg – can cause deafness, cerebral palsy or other forms of brain damage in some babies.
http:///kidshealth.org/parent/pregnancy_newborn/common/jaundice.html
This brings me to the most important issue, which I think is sadly lacking in our country is parent education, counselling and participation in decision making. As a parent of a newborn, I am entitled to know what is happening to my child and what options I have. When I look back, I feel completely short changed. I urge all parents to ask questions and not give up till you are completely satisfied with the answers. Because end of the day, you are left to face the consequences and the laws being lopsided you will never get any justice in this matter. Many of our doctors still do not take APGAR scores which give a good measure of the baby’s physical health and instead of just eyeballing, which is the norm especially in the non metros in India. This test is also important if you take your child for other countries for evaluation.
(http://www.mychildhealth.net/apgar-test-score-of-newborns.html)
The early symptoms...
Yatish lost almost 40% of his birth weight ( which is quite a bit considering that he was only 2.1 kg to start with....) and he seemed a bit stiff in his legs and had major difficulties in breastfeeding. He did not develop head control even after two months, but then he did achieve the social smile after 3 months, the only milestone he achieved at the right time and even today his smile is a sight to behold...
http://www.special-needs-hope.com/signs-of-cerebral-palsy.html
Once we noticed the stiffness in his legs, we asked the doctor what we could do and considering he had not achieved his head control, he advised me to start physiotherapy.....
My story....
The beginning....
After marrying the man of my dreams, enjoying a great career run, my bundle of joy came in the form of my son Yatish. Even though my pregnancy in itself had no major problems, towards the end, we were worried about the growth of the baby...(maybe the stress of managing a start-up business, left me with little energy for myself and my baby). Yatish was born 2 weeks premature after a brief labour and forceps delivery, a tiny little thing with beautiful eyes. To top it all, he developed jaundice which prolonged for 12 days.
Physiological jaundice is a common occurrence among new born, which results in yellow colour of the skin and whites of the eyes caused by excess bilirubin in the blood, which is produced as a by product of normal breakdown of red blood cells. Very high levels of bilirubin, usually 25mg – can cause deafness, cerebral palsy or other forms of brain damage in some babies.
http:///kidshealth.org/parent/pregnancy_newborn/common/jaundice.html
This brings me to the most important issue, which I think is sadly lacking in our country is parent education, counselling and participation in decision making. As a parent of a newborn, I am entitled to know what is happening to my child and what options I have. When I look back, I feel completely short changed. I urge all parents to ask questions and not give up till you are completely satisfied with the answers. Because end of the day, you are left to face the consequences and the laws being lopsided you will never get any justice in this matter. Many of our doctors still do not take APGAR scores which give a good measure of the baby’s physical health and instead of just eyeballing, which is the norm especially in the non metros in India. This test is also important if you take your child for other countries for evaluation.
(http://www.mychildhealth.net/apgar-test-score-of-newborns.html)
The early symptoms...
Yatish lost almost 40% of his birth weight ( which is quite a bit considering that he was only 2.1 kg to start with....) and he seemed a bit stiff in his legs and had major difficulties in breastfeeding. He did not develop head control even after two months, but then he did achieve the social smile after 3 months, the only milestone he achieved at the right time and even today his smile is a sight to behold...
http://www.special-needs-hope.com/signs-of-cerebral-palsy.html
Once we noticed the stiffness in his legs, we asked the doctor what we could do and considering he had not achieved his head control, he advised me to start physiotherapy.....
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