Outpatients come for treatment
Babies and small children come with their parents for physio-, occupational- and / or speech therapy. Some of them come daily or several times per week, others irregularly as they come from further away. We expect their parents to participate and cooperate to achieve the maximum result. This individual care is very time intensive and often several of our therapists are involved in the process. Unfortunately, parents often stop after some time, often when another baby is born and it becomes too hard for them to follow up on the treatment. Sometimes the expectations of parents are too high – for example they expect their child with a severe brain disorder to be able to walk and talk after a few therapy sessions, while in reality therapy is focused on reaching smaller goals. Many of the children who stopped coming, come back later – often when their parents realize that their child will not be able to follow mainstream schooling.
Most of our children had a difficult start in life. Often there were complications during the pregnancy or the delivery. The earlier we begin, the better the result! We prefer to start with babies and small children as the greatest improvement can be achieved with early intervention.
Sadhana was born in 2013 and was referred to us in 2015 when she was two and a half years old. Sadhana was delivered by caesarean section as she was overdue. She has a year older sister. Unfortunately, their father died of a malignant brain-tumour when Sadhana was just two months old. Her mother is still very depressed having lost her husband and being left with two small girls to raise alone. Sadhana is a sweet girl who is very alert even though she is not able to talk or walk due to her low muscle tone. Her mother brings her for physio- and occupational- therapy twice a week. She has started moving on her own more and has started saying her first words.
We also arranged a proper medical check-up. Due to her low-pigment skin lesions in her extremities she was diagnosed with Hypomelanosis, a syndrome which can come along with severe cognitive issues as well as abnormalities and malfunctioning of many organs, including the heart and kidneys. Further complications, such as epileptic seizures and brain tumours could also occur. We did not have the courage to explain all this in detail to Sadhana’s mother who is coming out of her depression, encouraged by Sadhana’s visible progress.
Yoga Lakshmi is a very active and smart girl who was born in 2011. She had no birth-cry and her mother had complications during pregnancy. Yoga Lakshmi was referred to us when she was three years old. We remember her as a wild little girl who hardly responded to anything. She was beating and biting, was easily distracted and did not look at us. Her hearing was tested and confirmed to be fine, though she still speaks only single words and puts everything in her mouth. It was important to show her parents how to insist on eye-contact and how to encourage Yoga Lakshmi at home rather than beating her. Quickly we found out that Yoga Lakshmi likes sounds and vibration. With a lot of patience and appropriate stimulation we built up a longer concentration span and Yoga Lakshmi now shows significant improvement and has improved interaction with her surroundings.
Gopinath was prematurely delivered by caesarean in 2011 and was kept in an incubator for 15 days. He has severe cognitive impairment due to brain injury which has also resulted in cortical blindness; a condition where his eyes function as normal, but visual information is not processed properly in his brain. It is not clear how much Gopinath can see and he is not able to tell us. He does not make eye contact and walks into objects and walls if not guided. Gopinath also has severe autism spectrum disorder. On top of everything else, Gopinath has also been having frequent epileptic seizures, despite taking the maximum dose of anti-epileptic drugs. His medication has recently changed which has seen a reduction in fits and we hope that will continue, as the constant epileptic attacks are damaging his brain and hindering his learning.
Shakti is the younger of twin-brothers born in 2007. His brother was fine however Shakti was only 1kg at birth, had no birth-cry and was therefore in the incubator for several days. Shakti has severe athetoid cerebral palsy which results in spasticity and trembling in most of his muscles. Although he is able to move his limbs, it is uncontrolled and a big effort for him. Even the muscles in the face are affected and he has difficulties eating and speaking, making his articulation unclear. Shakti is intelligent – he is attending a special school in town. His mother who is incredibly motivated insisted on bringing her boy to Deepam for physiotherapy treatment. We just could not say no to them. With regular exercise Shakti improved a lot and is now able to walk small distances with special shoes and the help of callipers and a walker. Once a week he also joins the Deepam children for swimming and the exercises in the water help him to relax his muscles. Shakti is an extremely motivated boy and has a very sweet nature
Eniyan was born in 2016 to parents who are related, Eniyan has a global disorder with a peculiar presentation; a lack of stability in his body and uncontrolled movements which makes intentional movement and maintaining his posture and position difficult. He also has severe cataract issues resulting in him having blurred vision. Despite all this, he is a highly determined and motivated young boy and is always trying to attempt to do everything as independently as possible, whether he succeeds or not. Due to a lack of sufficient balance, he is presently more successful in floor activities, however he takes great pleasure standing and walking with support. His perseverance is inspiring and encouraging to witness. His mother has the keen sense needed to assist him in the tasks he takes on, whether it is to do fine motor movements for playing with toys or to help him jump up and down over and over again. He has shown very good progress and has achieved a few milestones over the last year, all of which gives him and us confidence in his abilities. His general health has improved, his haemoglobin levels are good (a common issue locally) and he is now completing short sentences. He is also one of the few children who have parents motivated enough to attend other therapy appointments (physiotherapy and neurology at a government hospital) alongside Deepam.
Four at a time! Two pairs of gorgeous three year old twins have joined us in 2019. All four children are developmentally delayed. Ameshini was the first-born of the girls. Ashwanthini was born with a short neck-muscle and therefore had a tilted head and a weaker right side of her body, which has substantially improved through physiotherapy. As both of these sweet girls are explorative and cooperative, they will go to mainstream schooling with our assistance.
The other pair was born to parents who are blood related. The first born, a girl named Dhanyasri, was very weak and so was kept in an incubator for ten days. She required cardiac follow up as well as a long process of orthopaedic treatment for her clubfoot, for which she continues to get physiotherapy with us in Deepam. She has made great progress and was accepted at Aikyam school nursery in 2020 and we hope she manages well there. Her brother Dhaneshwar is quite different. He has autistic spectrum disorder, requires strong medication against epilepsy and has a strong squint in one eye which needs to be treated. Dhaneshwar’s behaviour is often challenging, his concentration is poor, and his speech is delayed. Physically, however, he is a healthy strong boy. At first he refused to make eye-contact and to speak, however with occupational therapy and especially insisting that he looks while playing, his attention and focus has improved. It was also important to show Daneshwar’s mother how to be with her boy, how to apply clear rules which help him to regulate his emotions. We showed his mother how undesirable behaviour should be ignored or be given a clear “no”, while positive behaviour should be praised and reinforced. Daneshwar is incredibly creative in his play and has many of his own imaginative ideas. It is touching to see him fall asleep in his mother’s lap at the end of most sessions to gentle singing and rocking after he’s put so much effort into sitting still and concentrating. Fortunately, both sets of twins have motivated and caring parents, and we are hopeful that with the early intervention we provide, the curious children will go far.
Yazhini was born in 2015 and is a sweet and gentle girl who is very perceptive and intelligent. She is able to communicate and has a friendly and curious demeaner. She loves to play and explore and enjoys learning and therapy. Her mother had a fever at eight months pregnant which was unfortunately treated incorrectly at hospital, resulting in her having an emergency birth, following which Yazhini spent two weeks in an incubator. She has quadriplegic cerebral palsy with spasticity in her muscles which further reduces her freedom of movement. She has medication to reduce the spasticity and has a dedicated mother who brings her to Deepam twice a week alongside weekly physiotherapy, neurology and special education sessions elsewhere. Her mother is determined to see her daughter walk one day and puts in great effort to assist her. Yazhini has slow control over her movements and her progress is slow, however she can now roll and move around the house doing her own kind of crawl independently. Our dream and aim is that she will be able to integrate into a mainstream school over time as she is bright and motivated to learn.
Pavitha first came to Deepam in July 2017 when she was three years old. Her birth history and early development was normal, however when she came to us she was not talking, her communication was limited, and she refused to make eye contact. She had limited social skills and limited understanding -or at least limited ability follow even simple rules-, but her hand-eye coordination, balance and fine motor skills were very good. She was in a mainstream school but struggling to manage so the school asked her to leave and her parents brought her to Deepam. She is a beautiful, special and intelligent character who is active and stubborn, and immersed in her own world where everything has to be done in a particular way. She is diagnosed with severe Autism and sensory processing disorder.
We began with individual classes where we worked hard to teach her to sit in one place, make eye contact and follow simple instructions. We designed sessions that used her love of dancing, music and dressing up to encourage her to copy, engage in activities and learn. We found the keys that open the barrier to her world and that was enough to work with her. We also worked closely with her mother to show her how to encourage Pavitha, provide clear and kind consequences and not be too soft on her “little princess”. Now she is often able to join some group activities, to sit and concentrate for 45 minutes and to follow what’s going on around her. Her progress is not yet consistent and she has changing moods. In the past year she has also started to giggle regularly, even in situations where it’s not appropriate. Our aim is for her to join the day care group where she is required to interact with other children and follow rules and instructions. She is a wonderful girl and lovely to work with.
Kashmita was born in December 2011 and had a normal birth. She had some fine and gross motor developmental delay and was diagnosed with sensory motor polyneuropathy, a condition which reduces movement and sensation due to nerve damage. She has right hand and lower limb weakness and when she came to Deepam aged four she was not able to stand or walk without support. Kashmita received regular physiotherapy sessions at Deepam and is now able to stand and walk, albeit a little unsteady. In her first year at Deepam, Kashmita was uncooperative with therapy, however she loves singing, playing games and telling stories and when these are woven into her therapy, it becomes fun and motivating for her. She has made great progress and comes to Deepam for outreach physiotherapy, osteopathy and swimming pool-based physiotherapy. She is intelligent, cheerful and sociable and studies at Aikyam school. She has committed and supportive parents and we hope she will have a bright future.
Rakshiya was born in 2014 with profound bilateral hearing loss. She weighed just 1.25kg and spent her first two weeks of life in an incubator. She was our first child with a cochlear implant. This expensive device is offered by an Indian government scheme and was implanted in her right inner ear when she was four years old. She first came to us after this operation and was still not able to speak and was incredibly attached to her mother, crying every time they were apart.
Since then she has improved a lot. She is now able to speak and is managing for longer periods without her mother. Unfortunately, her parents don’t fully understand how to best care for her, so she is not receiving the support she needs. She is, however, slowly integrating into our day care programme and is now coming five days a week full time. Rakshiya is an intelligent girl with no cognitive impairment and we have high hopes that with intensive speech therapy and emotional support at Deepam she will have a bright future.