A mother’s personal take on her special child
By Sajida Rahman Danny
This is the 20th time I have been asking the same thing … Seeam do not put your finger into your mouth … don’t put fingers into your mouth … please don’t put fingers into your mouth and I know it will be going on and on.
Seeam is autistic. And repetitious behavior is one of the symptoms of autism. Other symptoms are limited imagination and inflexible thinking, difficulty understanding and using language to communicate, lack of social interaction and relationships with people (Source: http//Wikipedia.org ).
Autism is now diagnosed in one to two out of 1000 children. Alarming, isn’t it? So far in Bangladesh, no survey has been held to identify the total number of autistic children. We do not know in real terms: what is autism, what it means, what are the classical characteristics of autism or what are the other factors that impact the main cause.
Autism shows its symptoms at the age of 2.5 to 3 years. Early diagnosis and treatment makes a lot of difference. Similarly, proper diagnosis, good education and support can help most autistic person learn ‘life skills’ and progress to live with autism. It’s not a disease, but a developmental disorder of brain function. It’s a lifetime spectrum. It is a disability that affects the way a person communicates with other people and the world around him. Many people with autism may have unusual reactions to sensations such as sound, light or touch. In addition, autism is not a single entity but a series of behaviours with multiple causes and neurological mechanisms. For Seeam, it was late when he started receiving proper treatment, and that was at the age of 13. Couldn’t help much on this but to helplessly witness how he was abused, deprived from every rights as a child. He was not accepted in his family, and not given chance to get appropriate treatments at the appropriate time. It was like “worthless to spend money on 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 depth of pain, frustration and depression. Unfortunately, Seeam could understand every bit of this pain, but could not express his frustrations! 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! 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.
After knowing what autism is, “ACCEPTANCE” is the first step to deal with an autistic child. If I know what my child is, what is his typeset, his mental and physical condition and if I can accept him with his uniqueness, the primary hurdle is overcome!! Because that helps to understand the child, his needs, desires, his liking and disliking, his capacity of what he can or cannot do. At an early stage Seeam had other issues like hyperactivity, sleeping disorder, learning disability, speech disorder, lack of sensory integration and gross and fine motor coordination problems and so on. Main challenges were/are dealing with all these issues to make Seeam as “normal” and comparable with his peers as much as possible so that he can have a regular and independent life. I will not live forever to support him, right?
I believed in him and in his capability. Therefore, whenever I visited doctors, psychiatrists or psychologists, I wanted to be sure about their depth of knowledge on autism. Frankly speaking, sometimes it’s shocking and reminds me that not all that glitters are gold! Regrettably, many of them don’t understand that here we are dealing with children, not with money to put into one’s own pocket. It’s also applicable for the fast growing schools who claim they educate autistic children. I would urge them to learn more about autism and its variety, its treatments and updates. They need to understand the gravity of the issue and that they are dealing with our children’s lives!!
Till the age of 10, Seeam could not talk properly, he usually repeated other people’s voice as a reply, always belonged to his own fantasy world, talked alone, laughed alone, could not express or share his pain, sorrow, needs, and problems. He hasn’t had any friend. He hasn’t had the capacity to learn from nature or from his surroundings, because of his ‘learning disability’ which in fact worsened the situation. He had to be taught every single thing! Starting from his personal hygiene like brushing teeth, taking bath, using soap or shampoo, comb hair to his way of walking, , sitting, using his own fingers, even chewing food -- every single things he had to be taught. Regrettably, to support these things there are no set-up to support families in need or support of caregivers. To reflect the reality, in Bangladesh, we do not have enough and quality support available, we don’t have enough quality institutions, trained teachers and therapists, and not to mention quality health support. Quality support can only train an autistic person ‘life skills’ to provide an independent life, which is the main challenge. At this point, quality suffers so does our children.
I have been to more than 30 schools in Dhaka city to admit Seeam, but without success. He had been advised to be in streamlined school with a support teacher and none of the school authorities agreed to accept Seeam with his specialty.
I have been from school to school, fought with the principals, who claim that they are the pioneers, but regrettably, they couldn’t come out of their business mindset! One of them finally agreed and claimed that she teaches autistic children, but after admission it was evident that she only knew the word autism, and had no indepth knowledge whatsoever! Since last three years, Seeam is studying in a school, with a support teacher and is now in his Grade IX. God bless the school authority that believed on my son and gave him a chance and considered him as a member of their school to prove his competency.
A school and institution can make significant differences to a child’s life, but these need to have quality, proper and sufficient equipment and supported by trained teachers, therapists and doctors. Each child should be treated individually and considered in a streamlined school or institutions according to their needs. As per my knowledge, there is a government policy on inclusive education in the mainstream schools, but it hardly applies in reality!
While going through the bumpy road, Seeam struggled 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. Right now, I’m sipping a cup of tea made by Seeam and was thinking …, my angel who alone couldn’t brush his teeth at the age of 10, can now serve me tea. He can cook basic things, manage his personal hygiene, his clothes and attires, has become expert in internet and games, can shop a little, can argue and establish his logics, openly place his opinions, start making friends at school and what is most important is that he can place demands on his rights! Sure he still has a long ways to go, but I believe in him. And I also believe we can make thing happen for all other special children too with combined efforts from the families, schools/institutions, society and most urgently with help from the government.
Issues that must address to move ahead : From social aspect, in general, disability is a cross-sectoral issue. It includes several sectors to consider and reduce vulnerability. For example: in the health area we need to expand scope of early detection programmes and establish referral network. In education, we should make our education system friendly according to the needs of the individual child. For severely affected children there should have high-quality and quipped institutions and education centers and there should be support for the process of inclusion into regular schools for high functioning children. Social welfare support should be there for our children focusing on rehabilitation, including income generating activities and activities at district level. It should also include raise awareness among the general people, safe and convenient transport.
Children with disabilities are uniquely vulnerable to violence, abuse, exploitation and neglect, mainly due to their specific physical or intellectual differences and same misperceptions which lead towards other forms of discrimination.
The government is moving towards achieving Millennium Development Goals (MDG) with a rights-based practical approach. I would urge to the government and its policymakers to consider these special children and take special measures for them.
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