CHENNAI: M Anushiya* , is used to her 12-year-old son being stared at as if he were an exhibit, but she will never reconcile herself to it. “Yes, he is intellectually challenged and behaves abnormally, but doesn’t mean he should be stared at or become the topic of others whispers that too by adults,” she says.
“It was only at the age of three, we (my husband and me) noticed some behavioural changes in the child, like he would get very angry and would remain himself away from crowd.
As he was growing up, he started becoming violent like breaking things and screaming if he doesn’t get what he wants. Once, the furniture in the house was rearranged and he got irritated and began screaming. So, even if the tiniest of his routine is changed, he gets restless. Initially, I used to find it very difficult. Even if I go to the nearby shop by the time I return, something would have been broken at home. I had to spend every minute of the day with him and had to give up going to the shops, attend functions and everything only to look after him. But, after a lot of therapy now he has changed, yet when I talk him out there are like some 300 pairs of eyes on him,” she says.
“You are already dealing with so much stress and other people are not very kind. They stare and it means as to why I am bringing the child outside or sometimes it is a look with pity or sometimes it is just so disturbing which forces many parents of such children to stay back at home all day,” she adds.
Subhulakshmi * of Perumbakkam vents out her feelings on how the last five years had been traumatic for her, after her 21-year-old daughter went into depression following a spinal cord surgery which changed not only her life but that of the entire family.
The first time you look at Priya *, she seems to be like another girl. But a closer look, you will spot that she finds it a little difficult to walk, due to the bed rest she had after her surgery. “As she found it difficult to walk, feeling bad about it she did not want to go to school. Hoping it would be fine, I did not force her for about a year and she stayed back at home. That one year, she started becoming very adamant and would hit me if she feels hungry. Sometimes, she will be watching TV and suddenly, she would start screaming and hitting everybody and throwing things. Initially, I would fear when her mood would change, especially when we have guests at home and she behaves like this. All of them would only sit and advise me which would add up to my tension,” she says.
“Trying different things to distract her, I once took her for a walk in the evening, First she seemed to be enjoying it, but when people started starring at her walking, she got angry and pulled my hair and pushed me to the ground. Then, I realised she was embarrassed and did not know how to react. From then on, I do not take her alone outside. Only when my son is there around, I take her out. There are many many such incidents where my extended family members do not understand and blame me for not taking care of her. Sometimes, even while sleeping she would suddenly wake up and slap me.
There is a constant fear that she will hit or throw plates so I am like a shadow whereever she goes. Nowadays I keep engaging her in conversation which seems to be working. But a little support from the family and society would help parents like me go a long way. We can bring out such children more often if there are no stares and gawping. In many cases, it’s a 24/7 job and to suffer the prejudices of others on top of that is just too much,” Subhulakshmi says.
Similarly, Jeba Milton, mother of a 11-year-old ASD (Autism Spectrum Disorder) child found her son was a special child when he was three years old, when his daily activities were being affected and would prefer being alone always. “Finding it different, we took him to the hospital and found that he had autism and like any other such child he would be hyper active and ask many questions which I have to answer patiently. Even if one answer is delayed for more than three minutes he would get angry. We live in a joint family and thankfully, everybody have been understanding. But the stares we get when we go to the mall and the beach and parks do not stop, but I have learnt to overcome this. We used to take my son for therapy including occupational therapy and other treatment which would come up to `1000 per day for a year. Now, we have enrolled him in a special school where there has been a large behavioral change,” she adds.
“Since, we are able to afford it we are able to avail ourselves of the treatment, but parents with low income are left helpless. The government pays `1,500 per month for such children which is very less,” she adds “Mainly, there has to be constant attention for such children and secondly in case of single parents, the challenge is even more as they would be the only earning member and will not be able to leave the children alone at home and have to depend on neighbours and NGOs. If there are government run homes catering to special children it would be helpful,” points out Subhulakshmi.
Meanwhile, P Leelavathy, director of Clarke school for deaf and intellectually challenged children, say nowadays society’s attitude towards such children are changing but there is still a long way to go. “More awareness is needed among the parents to avail themselves of the government benefits and the process to avail the benefits if speeded would be very useful. Early intervention in such cases is always good,” she adds.
Social activists who deal with intellectually challenged children urge the state government to identify what kind of help is needed in setting up an environment for such children. “For instance all the department must be interlinked when dealing with such children including the police, the welfare department and the public and NGOs only then can parents of intellectually challenged children also be a little released and cater better to their children,” said an activist.
Another activist Mumta pointed out that individual care should be given to such children. Even if they are joined in special schools, parents’ role is equally important in cooperating with the staff. “The attitude from the people is changing off late, the youngsters come forward to help such children when they spot them which is a positive sign,’ she adds. *Names changed
Accept, embrace
Tips to deal with intellectually challenged or disabled children