Born with Down’s Syndrome, Dev, now 10, leads a life full of activity and learning. His mother, Parul Kala, shares their journey towards self-reliance.
Dev came into this world on June 29th, 2005. At birth he was diagnosed with Trisomy 21, commonly called Down’s Syndrome (DS), a common genetic birth defect. He had a flat bridge of a nose and small stubby digits on his hands and feet. The diagnosis was further confirmed by genetic testing. All through my pregnancy, I was assured that all was within normal range and was even advised against amniocentesis at five months (a very safe and sure test for genetic and other anomalies) as there was no history of genetic defects in either my husband’s or my family. There was no clear reason why our first-born was born with DS.
Though we were unprepared, we were accepting and yes, exultant. My Masters in Child Development had given me the exposure to children with special needs and that also helped in the acceptance. However, at the time we only felt love for our son and were willing to do whatever it took to make sure he developed to his maximum potential.
The pediatrician proclaimed that Dev did not suffer from any serious medical issues that a lot of other DS babies are born with, especially those related to the heart. As he grew older, we also had him tested for food allergies that are common in many such children, eg, to gluten and casein, but he tested negative. He suffered from nasal and chest congestion in the early years but removing dairy from his diet greatly helped in reducing the congestion. Over the years we tried to feed him only home-made and natural food, but once he began school it was difficult to keep the junk food away completely.
Prone to infections
Sleep apnoea and fluid in the middle ear hampered Dev’s sleep and he kept getting respiratory or nasal infections, which hampered his speech and hearing development. Upon advice from a reputed American group called National Association for Child Development (NACD) we got tubes inserted in his ears to drain the fluid and also removed his adenoids and tonsils. This really helped him breathe better, especially during sleep when all the repair work is done in the body. He gets fewer respiratory infections, too. He gets the occasional viral infection but recovers within 3-5 days. Earlier, there was the danger of every viral infection developing into a serious problem needing antibiotics.
Daily routine
Dev loves routine and it was very easy to bring him up in a very healthy way by just doing everything on time irrespective of other household members’ timetables. For example, bed by 8.30pm and getting up by 6am has been a routine that has helped him get adequate rest and enough time in the morning to have a hearty breakfast and exercise before school began. Getting timely food and rest made him more calm and relaxed and co-operative to all the therapies and developmental inputs provided throughout life.
School and therapies
We have tried various therapies over the years and have only stuck to what made sense and did not make our child uncomfortable. NACD has a wonderful developmental programme for the early years. This ran parallel with speech, occupational therapy (OT), yoga and regular school in the early years. Usually speech and OT are part of the school curriculum but are rarely used with an integrated approach. We had a speech therapist, who came home everyday, who also acted like a special educator so he could teach Dev contextual speech and how to communicate.
Dev attends the Enabling Center at Heritage, Gurgaon. They have inclusion with neurotypical children for activities, like sports and mealtimes etc. He studies in a special class with a student teacher ratio of 3:1. Therapies are conducted one on one. For group play therapy (non academic), Dev attends another school, Pallavanjali, Gurgaon. Again his group consists of similar aged children with special needs. For recreation like the annual function they have an inclusive programme.
Activities and independence
Dev has been exposed to the touch screen computer and the iPad/iPhone since he was about 1 and 1/2 years old. This is his favourite pastime when he is not engaged in a directed activity and it has greatly enhanced his learning.
He is so dexterous with his hands while manipulating his gadgets that even though he does not have a well-developed fine motor grip, he is able to paint beautifully using his fingers. Watching high-quality educational videos has given him a keen observation skill and a sense of independence as he can amuse himself for hours with an iPad or computer.
Dev also loves the outdoors. With constant encouragement and exposure he has developed good climbing, running, sliding, cycling, swimming skills. With constant work on his balance, jumping, grip and other motor skills as well as social skills, co-operative group play, etc., both at home and school, Dev has grown into an individual who can express his needs, work in a group, follow simple instructions and do many things independently. For instance, he is able to go out to a restaurant or favourite play area in a mall accompanied by our trusted maid. He chooses his own menu and gets about without needing parents around. So the staff at these places are also sensitised to Dev's needs and the maid is in a supervisory position only.
He is also learning from experts in the Supported and Assisted Independent Like-skills program (SAIL) where he spends 24 hours every weekend in a supervised environment and learns various life skills, like packing and unpacking his bags, taking a bath independently, eating and serving, meal planning, household chores, going out in public transport, shopping, group interaction, communication and many others. We hope to have him as independent as possible by the time he reaches adulthood.
Challenges
The most challenging thing for me and Dev, since Dev is non-verbal, is the constant challenge to enable him to communicate effectively. While he is easily able to express his basic needs by use of picture cards, gestures and sounds, he is still struggling to find expression of feelings like feeling ill, where does it hurt, commenting or expressing his opinion or thought about a thing or person or events, like someone staring or making fun of him. We are working on his literacy skills along with communication to overcome this challenge. This skill will also help build self-awareness, another essential for co-existence in our society.
Patience, time and love
Our aim as parents has always been to surround Dev with a caring and responsible community that understands his needs. This includes our extended family. We are still celebrating his arrival into our lives. Dev was diagnosed with DS at birth. It happened, we moved on with love and acceptance. Every month for the first year we cut a cake on Dev's birthdate (29th of every month) and time of birth (4.33pm).
We also try not to do everything ourselves as we would then burn out, so we make sure we also follow our own interests and find time for leisure and relaxation. Take plenty of holidays with the family.
There are several good therapy centres and schools available in Gurgaon and Delhi and one should try and find what works best for the child. Be patient and realistic. Most importantly let children be children and let them enjoy their childhood first. They will grow up to be happy and secure individuals.
At Dev's painting exhibition last weekend, a parent from Chennai asked me if it was tough and difficult for us to come out with Dev's ‘disability’ in public and it made me think how we have always celebrated Dev being in our lives. Today we are known as Dev's Parents.
This picture of the family is superimposed on Dev's painting
