Adversity is a good teacher, it teaches you how to survive sometimes through phases and sometimes to sail through life. The toughest lesson it teaches you is to build your faith in the face of uncertainty. Plunging, not knowing if you’ll hit the ground…walking not knowing where the road’s headed, jumping into waters with little swimming skills.
Faith my dear is all you’re left with and all you’ll ever have.
Our introduction to Faith began 5 years ago, our elder son (now 14 years) was hit by seizures and even before we could blink our eyes, and our life went topsy- turvy. The sounds of the regular ho hum of a family transformed into constant Patient-Doc chats ! No matter how hard we tried to grab at our old life, we watched it slip through our fingers little by little and all we could do was watch the colours change… teary eyed. We did the expected- met with all the neurologists from Delhi/NCR, few overseas and wrote hundred emails to some others….leading to the same conclusion “idiopathic epilepsy”. We’ve watched our fun loving energetic son go through innumerable eegs, radioactive tests, feel hundreds of pricks and experience the horrible ICU several times. In a matter of few months Aadi was on heavy anti epileptic drugs, each new neurologist came up with classification and categorizations of syndromes we did not even know existed. They were very responsible you know, clinical, blunt, no promises, few words and as usual no bulls eye answers.
It’s been 5 years we still don’t know what causes our healthy intelligent regular kid to seize multiple times in a month…strangely neither do the doctors.
He’s changed a lot , confidence has taken a beating, tags and labels are on his face, getting pushed around is common and yet Faith keeps him and us afloat.
Epilepsy is that creepy horrible monster that comes crouching un informed, suddenly and viciously …..you can barely ever prepare for a seizure! As a result Aadi lost most of his friends, lost a year of school, wore a seizure helmet (in a country like India where even your name is judged), fought through slurring speech as a result of medicines, put on 30 kgs and braved innumerable falls leading to stitches ……day in and out. People still don’t know how to be around him, they are cautious while kids are judgmental and bullying. It’s easy for anybody to say “ it happens deal with it”. However the killing bit for any parent is to live and watch your child suffer. We’re always judged for being his backbone, but who will if we won’t. We live in an area considered one of the best, however none of the families possibly ever sensitized their kids on epilepsy they only seem to have forewarned their kids about him.
Epilepsy can hit any normal person at any given age for various reasons. It does not show on the face, however it can hamper intelligence and growth, and on the other hand if controlled it does not effect the person much. The place of seizure origination is what assists doctors to prescribe drugs and that is also why symptoms occur. In Aadi’s case temporal lobe is where seizures begin which cause – short term memory, difficulty in logic (math and science), fatigue, short attention span, fidgetiness to name a few. The drugs too add to this and make things much worse, they can cause- weight gain, slurry speech, blurred vision, drowsiness, depression, anxiety, low focus, metabolic problems and a whole lot more. When as a family you’re dealing with all of this, all you’re seeking desperately is acceptance & inclusion.
The only place where this need can be met is your community and through a school.
We realized schools are neither informed nor equipped to manage kids like Aadi and others that have different needs. There is little or no curriculum and you’re forever compromising and finding the mid way to balance the act and not to rock the boat. In the beginning it was a tussle seeking exemptions of various kinds as he looked just like a regular kid, until few seizures were on campus and it was established. We’ve however been blessed that the school agreed to evolve and grow with us, today that’s his biggest comfort zone. He’s been exempted from learning main subjects and is taught few in class, and few 1×1 sessions are conducted for other subjects. The school was willing to make a difference in Aadi’s life they are active participators in his growth.
I would like to reach out to YOU the reader, and urge you to reach out to yours help them raise their sensitivity and awareness. When you’re going about life, pause and be careful who you chance upon, be tolerant and patient disabilities are not crowns that set you apart for quick identification…it takes time to face. Educate your children and elders on the true meaning of inclusion and acceptance. If you’re an educator, professor, teacher better still – be the voice of evolution, bring about a change in schools, be the one to steer thought leadership in a direction of acceptance. We’ve all read and even experienced any change needs to be brought by people, an then made a habit to become a lifestyle. It’s not about a group that is directly affected it’s about self respect and the right to BE….for any individual. Ostracism, rejection, seclusion, name calling, bullying will continue unless love-acceptance-equality are taught at homes to be seen in the society.
The world needs to be a better place, our homes, communities, streets, schools must be welcoming comforting and accepting. How can anybody grow and evolve under immense pressure and scrutiny… ……..GROWTH REQUIRES NURTURING.
Children with needs don’t seek sympathy; they need acceptance of who they are and how they are. Unless we as a nation come together and bring a change, humanity at some level will always fail.
And if am stating the obvious, if it sounds like a broken record….why isn’t it this change a reality yet !
Shalinee is a mother of two boys and lives with her husband in Faridabad. She’s a part time professional and a fulltime homemaker. Their older son has seizures since 5 years, he’s now 14. She has a strong desire to reach out to parents similarly challenged with adversity, and build a likeminded community. You can reach Shalinee at – firstname.lastname@example.org
Petition to Ministry of Human Resources Development and 3 others
Implementation of Inclusive Education laws in all schools
There are, in our country, around 20 lakh children of school going age with disabilities. Around 46 lakhs are between the age of 10 and 19. None of them have a truly viable and fair means of education providing them dignity and equality in the societies they live in. And therefore we cannot even begin to comprehend how many bright intact minds are lost to mainstream life. Most are not even permitted basic rights of existence or human decency.
We, a group of parents struggling with inclusive education for many years appeal to you on behalf of all children with special needs impacted by school insensitivity. Not only ours but many, if not all children with disabilities have faced to varying degrees of severity, harassment, abuse and demonisation in the name of inclusive education.
Even in the most premier schools of the country, behind the facade of token inclusion, runs the ugly operation of ‘business as usual.’ Education can no longer be defined as the imparting of knowledge. It is now defined as the art of weeding out through innovative practices low scoring students and segregating them from high scoring students. Not only are children with disabilities denied school admission on various pretexts, low scoring neurotypical children are labelled as disabled to showcase the school’s facade of inclusive education. As a result average students are not allowed to attempt mainstream boards like ICSE and CBSE, and are pushed into exams more suitable to marginal and disabled students-the NIOS. Children with disabilities, much lower in the pecking order, of course have no chance of even getting close to the Board exams like ICSE or CBSE. Many do not even take the NIOS exam. Most do not get school admission. Those who do are victims of insensitive school administrations to an extent heightened by the fact that there is no redressal, monitoring or supervision of inclusive education policies.
In the light of this disturbing and alarming trend, we appeal to the Ministry and the school boards to watchfully implement and prevent the infringement of existing inclusive education laws and policies.
1. Zero rejection of children for school admission. This is important because the selective admission criterion is allowing schools to discriminate against certain disabilities. This should not be permitted since all children have a Right to Education.
2. Only children with benchmark disabilities of 60 percent or more should be admitted in the disability quota of 3 percent in a school. All children without benchmark disabilities should be immediately mainstreamed. This will prevent the danger of neurotypical children being pushed into disability labelling to fill quotas so the school can showcase inclusive education and also prevent below 90 percenters from taking the Board exams.
3. Handover of responsibility and accountability of special needs from special educator to the extra class teacher. The extra class teacher supports the class but is primarily responsible for 1 or maximum 2 children with special needs. There should not be more than 2 children with special needs in a class. The class teacher has qualifications like the rest of the teaching staff like B.Ed, but with specialisation in disability, and gets higher pay. The teacher supervises teaching by ‘universal design’ for the entire class and customises special needs according to individual disabilities. Supervision of personal attendants for the child is also the extra teacher’s responsibility. This simple solution has found success in some countries and not only roots out segregation policies practiced by special educators, it is cheaper than the exclusive and highly commercial special education setups installed within schools.
4. Open door policies for parental intervention, cctv footage and parental access to their children and teaching staff at all times. Individual lesson plans, programs, must always be done with consent of the parent/guardian, and partnership if the parents so desire. This is necessary to enable and ensure a secure and sensitised environment around the child.
These simple changes can bring about the paradigm shift necessary for inclusive education.
And this can be done with, again, a few simple actionable points.
1. Empowerment of Adminstrative Cells, as prescribed in the RPWD act, IEDSS, Section 31, in every district to ensure these educational directives are scrupulously followed.
2. A board council committee ( ICSE, CBSE etc.) in every school to nurture and handhold children with disabilities, so that the ones who obtain admission are not unfairly weeded out in early years.
3. Stringent deregistration, by boards and the ministry, of schools showing inclusive education malpractice in deed and intent.
These changes will not only give a new lease of life to around 46 lakh disabled children it will provide an equitable representation of students in the yearly board exams, thus giving far reaching opportunities for career, education and quality of life improvements to many children.
Last, but not the least these changes will improve the quality of general education . This is because schools will shift focus- from elimination of students to education of students. And this will have a deep impact on creating a more empathetic and cultured society.
Spaz, retard, aut, handicapped, special, disabled, differently abled. All these words have their etymological roots in the physical and medical condition. All of them veer delicately or indelicatel…
Source: Nationhood, disabled