A note from my heart....

A note from my heart.....

Advaith was a chubby and handsome boy during his child hood. All his motor milestones were on time. He started walking by 11 months and was playing with his brother and friends. He was a happy and active child. After 1 ½ years, slowly he went into his own world, he stopped responding to name call and was obsessed with cartoons like Thomas and friends. He was showing great interest in soft toys, trains, music. He stopped waving. He was not bothered about people around him. He was not bothered even whether I was around or not. He stopped babbling. He started crying for small reasons. I still remember that one day he cried for more than two hours continuously because the power went off and the TV was not working. We realised that something was wrong with him. After a lot of confusion, he was diagnosed with autism.

Once while we were staying at a hotel, he started crying for his blanket at night. He cried for a long time and gave us the car keys to indicate that he wanted to go home. After that I started packing his blankets and toys whenever we planned a vacation.

He was hyper sensitive to sound. He would close his ears and start crying if we took him to a mall, any stage programme at Adi’s school, any family function; he would cry loudly in crowded places. He would cry when we were sitting and waiting in restaurants. He would get very upset if we tried different places to stay. He did not enjoy vacations because new surroundings would unnerve him.

Severe sleeping disturbances were present. Most of the days he would be up by 3:30 am. He would refuse to wear certain clothes due to their texture. He was continuously sick and hospitalised many times due to chest infection and wheezing. Giving nebulisation was a big task. He was continuously crying and so there was no result. He wouldn’t chew any solid food and was only taking liquids and baby food even after he was three years old. We used to travel only by car so that we could carry any induction cooker or vessel to cook his semisolid food and also to carry all the items that calm him down. Toilet training was another major issue. Everyone around us thought that all this was because of bad parenting. I was very tired and depressed. But professionals explained to me about autism and encouraged me to work with him. I enrolled myself into a special education course and started sharing information with my husband and elder son. I got a book entitled “The out of sync child” from the KPAMRC library and that book helped me understand my child's needs and difficulties. After that I was able to understand why he found it difficult to adjust to various stimuli in the environment. I shared this with my husband and Adi, and we started working together and step-by-step we started accepting him.

We took him out but started with less crowded places. We would carry his sensory toys or iPad to calm him down did not care about other people’s reactions. Even when he was not ready to sit at the restaurant, we continued our outings during weekends. Initially we selected few restaurants where they served food fast and had sofa seating. At present Addu enjoys going out and doesn’t mind waiting for food at restaurants. He orders his favourite food items and can sit for more than 1 ½ hours. But if we take a break, it becomes hard for him to adjust; this is what I have understood from the times that we have taken a break.

Also, all these restaurants are aware of autism and about our kids because we take Addu there. To me, this is inclusion.

We started taking him to malls for a small duration of time. Escalator was the reinforcement. We sent him to play areas with Adi. So Addu started enjoying. Addu was helping with shopping in the clothes section, he started enjoying in the dressing room, because he likes mirrors. He was pushing and pulling trolleys and was moving around. At last long queues……….

Somehow, we managed by taking turns to move around with him. At present he can enjoy a visit to malls and shopping with minimal support from us. Again, if I take a break, it will be difficult for him to adjust to that environment, especially now that he is growing up. When the child shows tantrums, it is acceptable when he is young, but when a teenager shows tantrums, it won’t be acceptable and it will be hard for us to manage the situation. So, we know how important it is to take him to all these places without major breaks.

At present Addu enjoys staying at different places and enjoys outside food. He enjoys travelling by flight, train, bus and car. All these we worked out step by step.

Again, we have to practise it. I don’t want him to be isolated. He adjusts well with changes in the environment. His health issues have settled down. He is sleeping continuously at night. Crying behaviour has reduced a lot. Hyperactivity is not present. He does not like the presence of people who talk ill about him. He has several skills and has got lots of appreciation and has become a confident child. It was a long journey.

And miles to go before I sleep,

And miles to go before I sleep.

We have to continue all activities according to his needs to give him a stimulating environment. Only then can a family get a better quality of life and a child feel included in society. Autism is not because of bad parenting it is a complex neurological disorder.

Smrithy Rajesh

Addu’s Mom