What is exuding inside him!! What is he thinking?? What makes him behaving like this? To me it’s an addiction to know his inside. Observed him hours after hours, days after days…. used scotch tape on mouth for 3 days to learn how he was dealing with his speechlessness.
Till his 10th, Seeam could not talk properly; lost his speech around 3.5-4 years and start recovering gradually after 6-7 years. At one stage starts repeating others voice as reply, had echolalia, remain in his fantasy world, talked alone, laughed alone, could not express or share his pain or sorrow or needs, problems!! Never had friend! ‘Learning Disability’ affects him worst and restricts him to learn from surrounding or society. He had to be taught every single thing, starting from personal hygiene like brushing teeth, bath, using soap or shampoo, hair comb to his way of walk, sitting, using his own fingers, even chewing food…. every single thing! As prime caregiver I had to learn about his issues, educate myself on dealing with his challenges and find ways to adjust with regular life.
For Seeam, it was at his age 13, starts receiving proper support/management. I couldn’t help much but to helplessly witness how he was deprived from every right as a child. He was not accepted by his family, was not given chance to get appropriate treatments at appropriate time. It was like “worthless to spend money after him”, which is pretty much the same sentiment in many families!! He was not accepted in his schools, in social gatherings, on the road, at shopping malls; people looked at him strangely, as if they were looking at something from the zoo!! So much of teases and bullies he had to endure!! It’s such pain that whoever personally did not go through, will never understand the gravity of frustration and depression. Unfortunately, Seeam could understand every bit though could not express his frustrations in right ways! At a certain point, I understood whatever needs to be done for Seeam, being the mother, I would have to do it … even if alone and single-handedly! Or else there is every possibility that I would lose him and waste his life. So we (Seeam and me) started our journey. Well, it was never an easy path but a bumpy road with lots of ups and downs.
I have been to more than 30 schools in Dhaka city to admit Seeam, without success. Seeam was advised to be in streamlined school with a shadow teacher and none of the school authorities were in agreement to accept Seeam with his specialty. I have been from school to school, fought to the principles, who claim that they are the pioneer; regrettably couldn’t come out from their business mind! One of them finally agreed and claimed that she teach autistic child, after admission it was evident that she only knows the word called ‘autism’, without in depth knowledge! From age 11, Seeam attended in a mainstream school with a shadow teacher in his class.
Children with autism are more vulnerable than other children because they are unable to secure their rights, lack of judgment capacity, often isolated, disempowered and frequently live barren, faced with negative attitudes. They are uniquely vulnerable to violence, abuse, exploitation, particularly to sexual abuse, have difficulty in defending themselves or in reporting an abuse and even when they are able to make a report; their accounts are often dismissed or not believed. Seeam was perfect example of such issues. Every morning, as a mother, I prepare myself to deal with new issues. I could often see these coming – the games he tries to play but gets rejected to participate, while he wants to hug ‘friends’ but refused while they were hugging each other, while his teacher refuse to include him in her class, while someone takes his pen and runs away just to pock him, when boys throw rolls of toilet paper while he is in toilet, when others made him ring the school bell before class ended, when he hit ‘friend’ because they called him ‘fool’ or ‘mad’, when his ‘friends’ insist him to hit another boy, when ‘highly educated’ persons ask me ‘is he mad?’. Nobody seems to play by his rules. It is sometimes so bad that I feel that he cannot handle further because of the sheer complexity of the issues to focus on. And I become mad that I can’t help him more or don’t seem like doing anything that can help him more. People cannot accept differences and I cannot make them all understand facts that my son is only a simple teenage school-going emotional boy! Everyday seemed like one long, never-ending bad dream that he couldn’t wake up from! The boy had tear drops on my shoulder and my heart sank when he says, “Nobody loves me, everyone hates me, I have no friends.” Utter frustration tempts him to hurt himself!
While going through the bumpy road….Seeam struggle with all routines, studies, therapist, at the end of the day got exhausted and I cracked down with bank account. But the blessing is, Seeam is now walking towards his independence…. my angel who couldn’t brush his teeth at the age of 10, couldn’t comb his hair or button his shirt can manage his personal hygiene and his clothes now appeared in A Level exam under British Council, learnt 3 languages (recently learning Korean), can cook good food, learnt household management, manage local transportation, shopping, dealing with challenges, confident on his approaches, start making friends at VTC and most of all he can place demands on his rights! He, who could not talk properly till his 13, was lecturing me this morning on aborigins and social revolution of human kind!!
Well…sure he still has a long ways to go, but I believe in him. I believed in Seeam and in his capability. Therefore, I never stopped providing the supports that he needs, compromising my career, needs or redirect my life. He now became my career, my aspire, my best teacher! I salute him for his purity, his self esteem!