Dr Deepthi N Shanbhag,
Department of Community Health,
St.John’s Medical college, Bangalore
They say children are our future. They open our eyes to the world. Their happiness becomes ours. We are sad when they are sad.But little do we realize that raising a child with disability is more than an eye opener,it becomes a challenge to the parents, a dogma which is difficult to get over with easily
My son Hrishikesh is 18 year old and is diagnosed to have Cerebral palsy with diplegia and speech impairment.He was born at 37 weeks and had respiratory distress due to immature lungs. There was a delay in referral by atleast 8 hours which was possibly the time he suffered brain hypoxia. He was shifted to a better NICU facility and was very critical for a few days. In fact the neonatologist had asked us to be prepared for the worst. But my son survived the 22 days of ordeal of the NICU. He was just 1.8kgs and did look like a “small old man” – all shriveled and fragile.
From the day he got discharged and was brought home, life changed for me drastically. Initially his doctor had told that he has to be isolated to prevent infection. So my room was almost converted into NICU with no entry except my mother and myself. It was very tough to take care of a baby whose face was almost half the size of my palm. I also earned wrath of several of my relations whom I prevented from holding my son. Here it was the mother and the doctor taking charge at the same time.
3 months passed and my son was slowly getting some fat into his cheeks and gaining some weight. I slowly realized that he resembles me! He became fairer and slowly started moving his hands. All the while the doctor in me did tell there is something was amiss. The medical mind told me that he has some major developmental issues but unfortunately my mother’s heart overruled the mind and told me that “All is Well Don’t Worry!!”But heart of heart I knew all along that he had Cerebral Palsy. I just wanted someone to say that “he is ok” “Don’t worry”
At 6 months he had still not gained head control inspite of weight gain and overall good physical health. He did not have any make any sounds but responded to voices. Here my doctor’s mind really asked the mother in me to take him to a developmental pediatrician.
This was the time I realized that though we are trained in medicine we are not good communicators. The first doctor who saw my child said the word “unfortunately” every time he told about my son which just shook me. By the end of the visit I was very depressed about my son. I was disgusted with myself that I was responsible for this and told myself that I am really not a good mother. I was doing my MD in community health at that time and taken 6 months off as maternity leave. I just wanted to leave everything and look after my son. In fact I took another 6 months off to tend my hurt feelings. But my parents opposed this decision of mine and supported me by taking care of my son when I attended the college. I do thank my department also for being very understanding and standing by my side during my hour of need.
My son was fast growing up and I realized that he had multiple problems. He had an episode of generalized tonic clonic seizure which started coming regularly. He was started on anti-epileptics and the dosage increased with age. He had developed Retinopathy of prematurity earlier and treated but the outcome was high myopia and was adviced spectacles. He spoke only 3 words – Appa, Amma, Ajja. He recognized me my husbandand grandparents well.
But I was stressed and no one to really console me since I was the doctor. But no one ever thought that I even though I may be a medical professional I am still the mother like any else. No mother will ever wish that her child will become like this. My husband even being a non-medico has been extremely supportive in all my work. There have been times he has looked after Hrishikesh in my absence alone.
There have been times when I had strongly felt that everyone is stigmatizing my son by not interacting with him or even encouraging their children to interact with him. The question which I asked myself was if there was a role reversal would I have also done the same? May be may not be! I don’t know. But my son could feel that during the parties which we attended with him, no one spoke to him. He was kept in a corner. This bothered me so much I just stopped interacting with many of my friends in my neighborhood. There is preconceived notion that a person with speech impairment is mentally retarded also.
I carried on with my MD finished it with good marks in 2005 and joined department of community health as a faculty in 2006. We shifted to our own house which was distant from my mother’s house. We now had an in-house caregiver who stayed with us and looked after my son all the time. I was fortunate enough to get good trust worthy ladies who wholeheartedly devoted their time to Hrishi.
We have always had a therapist come home and do all the exercises to my son form the age of 8 months. So he did not have any contractures and his muscle was well toned. He underwent a surgery under Unit of hope in St. John’s Medical College which was the only time he has entered a hospital.
Then I put him in a special school which really was the turning point in Hrishi’s life. He now had a teacher who showed him a lot of pictures. He now had friends whom he could relate to. He now had an auto to pick him up and drop him. He has a caregiver (whom he really bosses over!!) The school provided him a platform for the opening of his mind
Hrishikesh is 11year 6 months old. He is still wheel chair bound. He still speaks only a few words. But he is smart enough to choose the color of the clothes he wears, seeing himself in the mirror after that, insisting that he will not wear sweater over his colour clothes. He knows that he has to fight with the boys in his school but blow flying kisses at the girls!! He expresses sorry by pulling both his ears. He loves to listen tokannadafilm songs! He can detect even the slightest anger on my face. He does not like me arguing with my parents. He is absolutely toilet trained. He is sensitive enough to put analgesic ointment to his favorite grandfather’s knees. He loves toy cars especially the brand – Hot wheels and expects me to bring a new one every time I travel but smart enough to throw away if I give him a car from his collection and try to pass it as a brand new one! He loves food and wants it to be tasty. He will not eat food if it does not live up to his expectations. He will not eat an extra spoon of food if he is full despite the food being his favorite. He loves picture books. He can be very naughty and a handful at times.
Both me and my husband have not felt that he is a child with limitations. Our son has made us look at life differently; take it very positively in spite of the barriers and shortcomings. My son has not limited my progress but in fact has made me more confident, cheerful and more humane.
I have also felt that a child’s potential and capabilities cannot be judged at once, is not for a doctor to decide in the beginning. It is very necessary that a doctor will have to counsel a mother and father before starting intervention. It is very difficult for a parent to come to terms that their child has a disability and limitations.