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Living with Special Abilities LIVING WITH SPECIAL ABILITIES: A Parent’s Journey with Autism ABOUT THE AUTHOR Afroze Jahan is first of all a mother of two boys who are striving to achieve their milestones of adolescent years and secondly, a professional in the field of mental health. As a budding author and a special parent, she has whole slew of ideas to pass on to the parents who stand in need of guidance. Her passion to help parents and children led her to change her profession from a Microbiologist to a Psychologist & Family Therapist. This helped her refine her skills and confidently handle diverse situations in life. By sharing her experiences as a special parent, she intends to provide a soothing and comfortable environment for those parents who feel they are the only one in the whole world to face disability in life. She is specialized in child and adolescent issues, childhood disabilities, family issues, emotional issues, behavioural issues, educational issues, etc. She is currently empanelled as a Counsellor in the Ministry of Women and Child Development (Govt. of NCT of Delhi) and working as a Psychologist with an NGO- Tamana Autism centre. She has also worked with Udaan- an NGO working with special children and NIPCCD- National Institute of Public Cooperation and Child Development, an autonomous body under the Ministry of Women and Child Development. LIVING WITH SPECIAL ABILITIES: A Parent’s Journey with Autism AFROZE JAHAN ZORBA BOOKS ZORBA BOOKS Publishing Services in India by Zorba Books, 2018 Website: www.zorbabooks.com Email: [email protected] Copyright © AFROZE JAHAN Print Book ISBN: 978-93-88497-17-6 All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, except by a reviewer. The reviewer may quote brief passages, with attribution, in a review to be printed in a magazine, newspaper, or on the Web—without permission in writing from the copyright owner. The publisher under the guidance and direction of the author has published the contents in this book, and the publisher takes no responsibility for the contents, it’s accuracy, completeness, any inconsistencies, or the statements made. The contents of the book do not reflect the opinion of the publisher or the editor. The publisher and editor shall not be liable for any errors, omissions, or the reliability of the contents of the book. Any perceived slight against any person/s, place or organization is purely unintentional. Zorba Books Pvt. Ltd.(opc) Gurgaon, INDIA Printed in India CONTENTS About The Author ...........................................................ii Introduction ................................................................. vii 1. To The Readers ...................................................... 1 2. The Ideology........................................................ 12 3. My Journey .......................................................... 16 a. Unfolding Adventure ...................................... 20 b. Developmental Milestones And Regression ..... 21 c. The Turning Point In Our Life ....................... 22 d. Different Stages Of A Parent ........................... 23 4. A Fair Advice ....................................................... 30 5. Daanu Before ....................................................... 34 The Precious Period ..........................................51 6. The Special Diet .................................................. 52 7. The Schooling ..................................................... 58 8. His Biochemistry ................................................. 65 9. Fading Away GFCF Diet ..................................... 69 10. Hunt For Therapists ............................................ 75 11. HBOT (Hyperbaric Oxygen Therapy) ................. 80 12. IEP (Individualized Education Program).............. 83 13. His Achievements ................................................ 87 14. His Memory ........................................................ 92 15. The Routines And Rituals .................................... 97 16. Daanu Now ....................................................... 105 17. Problems In School ............................................ 118 18. Change Of Profession ........................................ 127 v vi Living With Special Abilities 19. Role Of Gadgets ................................................ 132 20. Joint Family- A Boon ......................................... 139 21. Learning By Exploring ....................................... 146 22. Meltdowns ......................................................... 150 23. Role Of Siblings ................................................. 156 24. Strengths And Weaknesses ................................. 163 25. Challenges In Social Communication ................ 172 26. Acceptance ......................................................... 180 27. Stress And Anxiety In Children .......................... 185 28. POCSO Act ....................................................... 190 29. Sense Of Privacy ................................................ 194 30. Emotional Regulation ........................................ 201 31. Self Esteem And Confidence .............................. 205 32. Learning Difficulty ............................................ 210 33. Is My Child Special? .......................................... 214 34. Impact On Parents – Research Outcome .............. 218 35. Incredible Mothers ............................................. 227 36. Case Studies ....................................................... 234 37. Inner Voice Of Special Parents ........................... 240 a. A Rollercoaster Ride ..................................... 241 b. Pioneering Ventures ...................................... 246 c. Mission To Accomplish ................................. 252 d. Purposefulness .............................................. 254 38. Acknowledgement ............................................. 259 39. Abbreviations ..................................................... 261 40. References .......................................................... 263 IntroDUCTION I was wondering how to introduce myself as I am neither a famous author nor a known personality who needs no introduction. I am just an ordinary parent who has been given exceptional and unique duties to perform. Parents generally are filled with anticipation about their children’s unfolding personalities; many also lack knowledge about how best to provide them. My aim is to lend a helping hand to those who walk the path I have walked both as a parent and a professional and illuminate their path to make their load slightly lighter. I have been organizing my thoughts for years to dispense my knowledge and experiences to other parents and believe that it would certainly help them in some way. I decided to try to put them together and discover the outcome. The knowledge and skill I have acquired by observation of facts and personal contact with the painful challenges of life in bringing up a special child have been shared in this book, hoping to throw a light on other parents who find themselves in the dark. Some experiences leave an impression on one’s mind that establish the rare thoughts of selflessness and explore to know more and attain maturity. These qualities led me to garner my guts to contrive the guiding spirit in me. Though this was not an easy task to look back as I went through a series of emotional breakdowns while recalling the events, I would motivate myself by the thought that ‘reminiscence provides you with the strength that holds you vii through life’. I hope the efforts to bring all my experiences together and unravel the facts that may enlighten one’s life or change one’s perception towards disability. Even if one special family out of ten is benefitted or one person out of twenty is sensitized after reading this book, my mission is accomplished. This is my belief and expectation. The task of ensuring a special child’s healthy development does not solely rely on parents or the caretakers; the governments and the organizations at community, state or national levels should also share the responsibility by providing programs and services to support parents and caretakers. Unfortunately, the children with special needs are insignificant in numbers and given least facilities, and the support system is unsubstantial in our country due to which bringing up a special child becomes challenging for parents. As quoted by Sandy Hamm in an article “Just because some children look a little different, walk a little different, talk a little different, and act a little different. What right do we have to continually hold these children back from reaching goals and being productive in some manner?” “Prejudism is a crime; we form an opinion on these children before we even have knowledge of who they really are, and who they can become. We assume that they can never live a normal life, and wouldn’t be able to fit in with society. Wrong!!!” “My son with special needs is as worthy as President Obama. He is as worthy as Bill Gates, Warren Buffet, Donald Trump (and he has better hair!), Derek Jeter, Bruce Springsteen, Steven Spielberg, Mark Zuckerberg and even Justin Bieber. Should you argue that these are men who contribute more to the world than my son ever will, well then I say that’s an incredibly narrow-minded way of looking at life. No person’s merit (let alone a child’s) should be irrevocably determined by how his muscles move, the way his brain works, or whether
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