Brian was diagnosed with Autism in 1995. His milestones were all normal, but he didn’t say a word. That’s when we realized something was wrong somewhere.
Was he hearing impaired?
The inevitable question. But we preferred to believe otherwise. The reason being that, he would run to the living room when his favourite music was being played. We didn’t want to keep ourselves in doubt. So, we decided to take him to a doctor. By that time, he was 2 1/2 years old. We started our trips to different hospitals, the last stop being, The National Institute of Speech and Hearing, Mysore. After their detailed evaluation, the diagnosis was in front of us ... in black and white…Something that we never even had nightmares of… That our child was Autistic. Now, what is Autism? We didn’t know what it was or even how it was spelt. We had never heard of such a condition. Anger, disbelief, shock, were just a few of the emotions, that we went through. Most of all, the pain of explaining to Rohit, why his brother wasn’t speaking or responding to him as other children did. We stayed on at Mysore, for an intensive training session.
There was a parent counselling session for us, as we needed to get a hold on ourselves and needed to know, what we had to do for our little one. When the whole realization dawned on us, we knew we had a major task uphill, which had to be handled with utmost care and consistency. To be very honest, I felt let down by God. Days, weeks, months were spent either brooding, or I would go on a guilt trip. The first visit to Raksha really, was the first step taken on a positive note. The advice that Elizabeth Madam gave us on that day, we held close to our hearts.
That’s when we realized that instead of worrying about what would happen to him, when we are not around...think of training him in such a way that, he would be able to survive, even when you are not around. That was indeed a major step taken in the right direction and we haven’t stopped since then.
We started regular sessions at Raksha.
To begin with
Brian had no eye contact
was not toilet trained
he had those stereotyped behaviours
inappropriate laughter, etc.
With the help of the special educators at Raksha, we had set small goals and would work towards achieving them. We started by first things first. Like his self-help skills, speech, and so on. The main one being toilet training. It was like a team work with so many people involved in getting Brian to achieve his goals. Each time, we succeeded in one, there was so much of joy and rejoicing that it was almost like as if he had received a trophy. After each session at Raksha, we would follow up at home consistently. Not really pressurizing him, but everything was followed like a game... it was fun and laughter all along. Brian is the best gift God has given us because; he brought so much of love and happiness into our lives. He taught us to love, understand and feel for children like him. We realized the importance of human relationships and how to cherish and nurture each one. We taught ourselves how to see differently and be more loving and open.
As a parent, I know the difficulties of raising an autistic child. You must fight for their rights, for their acceptance and most of all to make people aware of the fact that, they too belong here and need to be loved and understood for what they are. They don’t need sympathy. They just need us to slow down a bit and hold their hand and guide them forward, so that they can stand up with the rest of us. With the guidance of a special educator, we as parents can do so much for our children. We spend the maximum time with them, so we are more sensitive to their needs. Spending quality time with them, training them and involving them in the day to day activities goes a long way in helping them grow in every aspect. There is no need to be ashamed of your child or be overwhelmed by the possible difficulties you could face in a social set up. He is a gift from God with a challenge for us to help him overcome all the obstacles in the most loving, supportive and open-hearted way possible. If you are depressed, your child is bound to feel the same way. If you are enthusiastic about achieving the goals that you have set for him, I’m sure that enthusiasm will rub off on him and training him would be a pleasure rather than an ordeal. I speak about this from my experience.... believe me. If siblings are there, it is very important to maintain a good rapport between them. Once that is achieved, a sibling can play a very important role during these sessions.
Rohit has been our strength and support during these crucial years. Of course, he was deeply hurt in the beginning. We explained in such a way that his little mind would understand- that his Sachu was God’s special gift to us and that he wanted a brother who would really care for him. He took it up as his responsibility and would care for him and protect him in every possible way. Till date there has been no change and we pray that they continue to share the love and affection in the years to come.
Simultaneously, with sessions at Raksha, Brian went to playschool and kindergarten at Santhiniketan at Panampilly Nagar, Ernakulam and later joined Choice School which is a regular school, where he studied till the Eighth Standard.
Since he opted for the NIOS curriculum, we shifted him to Sampoorna which is like a second home for him. He settled in so well and has learnt so much from there..He has become more independent and loves his teachers and friends there. Though his repetitive behaviors are still present, he is very comfortable at school and is very happy in the company of his friends and teachers and the support staff at school who have been extremely loving and supportive. We have noticed a lot of positive changes in him. He cleared his Secondary as well as Senior Secondary. Now we observed that he is good at using the computer...So we have opted for a private college where they have a wide choice for certificate courses…Rather than pressurizing him with subjects that he doesn’t need to learn we thought the best option was for him to learn something that could help him to prepare him for employment. And he gets to interact with his peer group too. It was his desire, he gets to go to college too. More than academic excellence, it is the interaction with people around him and his peers that is more important.
There have been so many wonderful people who have touched our lives in the most wonderful way. There have been times, when we thought we are alone, but we have met so many families and we shared our experiences with each other so that we could be of help to one another and feel strong in the belief that we all stand together for a single cause. These families also have been pillars of strength for us. Through this journey of ours, they have understood and stood with us in our times of pain and rejoiced with us in times of our joy. Instead of collapsing under the stress, we should cope with it and grow as better human beings, richer with every learning experience and to be happy in the presence of your children, and to face life with more enthusiasm and dedication. I don’t know what life holds for us tomorrow, but I want to make today the best for my child, and have only happy memories of yesterday.
There is no guarantee that your child will be completely cured of this condition, but if you give love and respect and appreciation for every little thing that he does, there is a feeling of happiness and contentment, that - Yes, we were able to do something for our child; at least we made a small difference. Brian has brought a lot of love into our lives. Looking back, I am so proud of what he has become. His urge to do things and his love for the family, his extended family and friends, gives us HOPE. There is still a long journey ahead but am sure we will pursue that road hand in hand with a lot of positivity and enthusiasm.