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

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 – murishwars@gmail.com

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3 thoughts on “Idiopathic Epilepsy. Guest blog by inclusion advocate Shalinee

  1. Hi Shalini,
    I know how difficult it is to see your child get multiple seizures and going to Hospitals for stitches and consultations every now and then only to get their medicines increased which leave so many side effects as you already mentioned.
    Adi was unfortunate that he being a normal child starting getting seizures which changed his and family’s life completely .
    Nitya was born with a neuronal migrational defect because of which her milestones were delayed which with the help of Physio and speech therapy things were improving but at the age of 5 she started getting seizures and from one to two to 6 medicines morning and night her health started worsening and after going to school till the age of 14 . her seizures increased so she stopped going to school as she was mostly drowsy in class and also had a bad fall in school and broke her front teeth . Though I would like to mention that the teachers and staff of Heritage school Gurgaon where she was going was extremely nice and helpful and gave lot of attention and care.
    She is 16 and on a wheelchair now as because of strong medication she has no strength and energy in her body to walk now.. all side effects of these epilepsy medicines,
    Shown to so many Doctors but all they do is keep changing and trying different medicines which are bringing no relief to her seizures .
    It is very difficult to see your child go through all this and with no hope of things getting better in the future .
    When taken her out to the malls and parks people stare and look at her so strangely that it feels so humiliating .
    Kids don’t want to come and play with her and just look straight into her face .
    Still nothing stops her from going out and enjoying with family and the staff at home and of course relatives as these children are innocent and don’t have any idea of how people are reacting towards them.
    They are gods children and very special to us .
    Just that society needs to be more aware and sensitive to these innocent lovely human beings.
    God Bless !

    1. Hey Priti!

      Howdy!
      Thnx fr writing in…Nitya is a wonderful child i recall how she enjoyed being at church. Lotsa hugs and love to her.
      You’re one of the bravest moms i’ve met..thank you again for sharing your heart.
      Love

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