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

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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 he speaks in the way that people typically speak or looks the way people typically look. My son has made a difference in this world and will continue to do so, in his own way.” Quoted by Ellen Seidman in her article. Bringing up a child with disability can be challenging and often those challenges feel like a strong tidal wave coming our way, threatening us to lose balance and fall. But we stand strong against the wind scourging upon us. As parents we held our hand in support of each other because we knew being together made us stronger. The strong winds just pass-by with the slightest of jerks which could have shaken us, had it been we stood apart. Though at times I flow along the winds, I battle with all my strength and strengthen the will to win. The mothers love knows no boundaries, no pity; it dares all barriers and crumbles down remorselessly all that stands in its path. The term “special child” should not be used to address someone who is incapable or unintelligent. Rather it should be used proudly to show how capable and intelligent they are; and how strong we are than any other parent. They are not ‘special children’; they are just ‘children with special needs’. Parenting a child with special needs did not stop me from extracting the information and expanding my knowledge. I have taken an oath to explore more into others lives; help them break the cocoon and fly into the world to explore their limits. I dedicate my life to the welfare and prosperity of all the special children on earth. My prime concern is the well being of the parents and the special children.

TO THE READERS

riting a book, especially when it is from a parent to Wthe other, that too of a special child is painful and heart wrenching; it is extremely difficult to jot down the thoughts and feelings. In this book, I am taking you through my journey as a special parent with a special child. Yes, I refer to myself as a SPECIAL PARENT because God has chosen me to undertake SPECIAL tasks and SPECIAL responsibilities and provided me with SPECIAL energy and courage to encounter the challenges in bringing up a SPECIAL child. This thought gives me a positive energy which is beneficial for the child as well as the family as a whole. For the child to benefit in all aspects of life, it is necessary that the parents hold positive thinking, even about disability. I have attempted to make an effort not to use complicated language so that it is understandable by all,

1 2 Living With Special Abilities otherwise my purpose of writing this would remain unfulfilled. This book would not only guide those special parents whose children have been recently diagnosed with some kind of difficulty or disability, but also those of typically developing children and definitely would sensitize the public in general. Every single child on earth requires support and guidance in their tender years for their overall development, but these special children need a lot more extra support. The skills which a normal child would learn by himself/herself in day to day life are much more challenging for a special child who needs to be taught so by setting goals which may or may not be achieved. It is imperative that everyone should be sensitized towards special children. The reason for which I lay emphasis on this is because a special child is not only the responsibility of the parents but also of the society. Whoever the child happens to meet in his/her life, whether it is a teacher, friend, neighbour, relative, people in public places like parks, malls, markets, cinema halls, family or social gatherings, etc, should be able to distinguish or sense the child’s disability and help him/her in the difficulties he/ she encounters. Though it generally does not happen, the so-called respectable citizens definitely need to be sensitized. I feel dejected and downcast as a parent to say that the child often gets labelled as a “brat” or “pagal”. This is extremely painful and traumatic for both the parent and the child. “Do things for people not because of who they are or what they do in return, but because of who you are.” “None of us including me ever do great things. But we can all do small things with great love, and together we can do something wonderful (Mother Teresa).” To The Reader 3

I prefer not to use the term ‘Disability’ as these children are not disabled but ‘Differently Abled’. God has taken away some abilities from them but at the same time gifted them with special strengths which are fun to discover and use, which have the potential to get refined and attain proficiency. If you are able to discover them, then you have hit the jackpot. Since I have already used the term ‘Disability’, I will continue with this for your understanding. Just close your eyes for a while and think about the word ‘Disability’ before you read further...... The first thing which hits our mind is the physical disability, like someone on a wheel chair, right? A disability can be any condition which restricts a child from everyday activities in some way or the other i.e. difficulty the child is going through in coping with activities of daily life. It can be physical, emotional or intellectual. If you wish to explore, you will have an opportunity to get familiar with a variety of Differently Abled persons who are lacking somewhere but gaining elsewhere. Some of the common childhood disabilities are Autism Spectrum Disorder, Cerebral Palsy, Down’s syndrome, Attention Deficit Hyperactivity Disorder, Intellectual Disability, Learning Disability, Visual, Hearing, Emotional, Speech and Language disorders, etc. Let me present you a brief introduction of each for a better understanding.

Autism is a neurological disorder in which the child has difficulties in communication, socialization and understanding. They also display repetitive behaviour, echolalia (repeating like a parrot) and fixation to routines. 4 Living With Special Abilities

The child often has difficulty in maintaining eye contact and displays self-talking, self-laughing and self-hitting (in severe cases) behaviours. These children also are over or under sensitive to sound, smell, touch and light (sensory issues). It is difficult for them to understand others’ perspective and also lack abstract thinking. They are generally very obedient, innocent, straight forward, truthful and perfectionists. They see the world as it is shown to them. They cannot manipulate their thoughts or the situations. You know, sometimes I feel that if everyone in the world would have had Autism, then, there would be no crime, evil thoughts or corruption. It would have been a clean and perfect world like it is for an Autistic child. They can only understand ‘good’ since as parents we teach them to be good and never expose them to bad. They cannot tolerate ‘bad’ as they perceive the world as good. There are different levels of severity in Autism, right from mild to moderate to severe, depending on their intelligence level and abilities again depending on which they are called low functioning or high functioning. High functioning children are very intelligent; sometimes their IQ is more than the typically developing children of their age group. They are good at academics and display special abilities but still experience difficulties with understanding, communication and socialization.

“Autism is silent only to those who choose not to listen (Walk Down Autism Lane).” “When Autism speaks it can’t always use its voice, so when you are listening you can’t always use your ears. You must listen with your eyes and with your heart. Autism does speak but not always with words (Facebook).” To The Reader 5

“Once you accept that a child on Autistic Spectrum experiences the world in a completely different way than you, you will be open to understand how that perspective is even more amazing than yours (Venspired.com).” Autism is close to my heart, it’s my passion, it’s my life line, it’s my destiny, it’s into my nerves and every breath I take. I don’t try to get rid of Autism, I try to understand Autism and live with it. The only thing we can do is to learn to manage Autism. We don’t have to change Autism. We have to change ourselves for Autism. This is the only treatment available for autism in this world and we have to accept it. The term ‘Attention Deficit Hyperactivity Disorder (ADHD)’ defines itself. Many of us can very well relate our behaviour with the features of ADHD. The main features are hyperactivity (overly active), low attention and concentration, distracted, impulsive, stubborn, low frustration tolerance, temper tantrums, etc. These children are multi-tasking and cannot focus on one thing at a time, due to which low academic performance and hence low confidence and low self-esteem. The common signs of ADHD would include:

Hyperactivity: Squirms or fidgets while sitting, does not stay seated, has trouble playing quietly, restless, always on the move, talks excessively, etc.

Inattention: Easily gets distracted, has tendency to day dream, has trouble following directions, difficulty finishing tasks, display problems with organising work, often loses things, forgetfulness, etc. 6 Living With Special Abilities

Impulsivity: Has trouble waiting for the turn, difficulty in waiting for the question to finish before answering, often interrupts others, has trouble following rules consistently, aggressive towards other children, overreacts to frustration, criticism, mistakes and disappointments, etc.

Cerebral Palsy is a physical disability which can be complete or partial. It is the inability to control body due to brain damage. The main features are tightness of muscles which impairs muscle control and mobility of the parts of the body which are affected. They are variably dependent depending upon the part of body which is impaired i.e. some are wheel chair bound and some of them can move with supporting aids. They also experience seizures (fits) and choking. Some of them may have impaired intelligence, speech, hearing and vision. They are generally very expressive. Let’s take the example of our experiences with stiff neck, back ache and any kind of fracture or muscle pull; how painful, disabled, frustrating and uncomfortable our life becomes. Just imagine, these children live with this pain and discomfort throughout life. Types of Cerebral Palsy:

Monoplegia à Affects one limb, usually an arm. Hemiplegia à Affects one side of the body: leg, trunk and arm. Diplegia à Affects either arms or both legs. Quadriplegia à Affects all four limbs of the body.

We all can display different emotions in different ways according to the situations. We know how much to cry or laugh in what situation. But the children who have To The Reader 7

Emotional Disability cannot measure their emotions. They have problems with emotional regulation. They don’t know how much to cry or laugh or show affection or anger in what situation, they just do it. Some of the characteristics of emotionally disturbed child: unusual rage and anger, gets irritated fast, unhappy or depressed, withdraws, hyperactivity, immaturity, anti-social behaviour, etc. Why don’t we all go back to our past and remember; have we ever made mistakes in learning, like spelling mistakes, jumbling words or letters, missing words or alphabets or sentences, inserting words or alphabets while reading and writing, difficulty understanding concepts in academics or other activities, slow in understanding and performing activities of daily living. If so, then we are suffering from Learning Disability which went undiagnosed. Children who have learning disability also suffer from low performance in academics and other activities, hence low self-confidence and low self-esteem. Some of the common signs of Learning Disability: • Difficulty with reading and/or writing. (Mechanical reading, no use of punctuations, lot of spelling mistakes, difficulty with long words and blends, often miss or add or substitute letters or words, Often miss lines, disorganized handwriting, etc.)

• Problems with math skills. • Difficulty remembering. • Problem in paying attention. • Trouble following directions. • Poor coordination. 8 Living With Special Abilities

• Difficulty with concepts related to time. • Problems staying organized. • Auditory processing difficulty. • Sensory integration difficulty. • Visual processing difficulty.

Intellectual Disability is the new term given to the so called “Mental Retardation” to avoid social stigma associated with the old term. In this, the thinking ability of a person is reduced to minimum or nil. It is categorized from mild to moderate to severe to profound levels depending upon the child’s IQ scores and functioning, again depending on which the children are sub-categorized as dependent, trainable or educable.

Down’s syndrome is a genetic disorder in which the 21st pair of chromosomes is in triplicate i.e. an extra chromosome which causes this disorder. Children with Down’s syndrome are generally happy. They are verbal and trainable. They all look alike as there is similarity in their facial features. They have a characteristic physical appearance with small and flat nose, small mouth, protruding tongue, slant upward and outward eyes, broad hands with short fingers, flat back of the head, sandal gap, etc,. Other features are delayed development, clumsiness and learning disability. They may also have medical problems related to various organs. How many of us use spectacles and hearing aids for better vision and clarity in hearing? Are we not disabled in one way without these aids? Visual or Hearing Disability is the condition in which the person cannot see or hear To The Reader 9 in spite of these aids. Just imagine the life of a person in darkness, where he cannot see his beloved ones with his own eyes, cannot admire the beauty of nature which God has created, cannot see the rising sun bringing pleasant mornings and the beautiful scenery of the sunset which takes you through the night with twinkling stars in the sky and sparkling lights of the city. How difficult life is, for a person who cannot hear the cooing of his own baby, the first words of his toddler, chirping of the birds, cuckooing of cuckoo, his own name being called or pleasant music being played. Similarly, the life of a non-verbal person with a Speech Disability who cannot express his thoughts and feelings, cannot talk to his beloved ones, cannot chat with friends verbally and enjoy the fun of being together in a peer group. Imagine how frustrating the life is for them. Don’t you think they need to be understood by the so called society? Who cares, right? I don’t mean to be sarcastic here, but this is the general attitude of some people who are not sensitive enough to empathise with the disabled persons. Yes, they don’t need your sympathy, they need your empathy. God bless them with wisdom. I feel delighted when I come across the people whose hearts are filled with love and affection for the special children and a desire to help them without expecting anything in return. Their information and understanding about any disability, and readiness to provide support in whatever way they can is amazing. God bless them with all the happiness in life. Apart from these, there are many other disorders which are not mentioned here. If I start discussing all of them, it will become encyclopaedia of disorders rather 10 Living With Special Abilities than a parents’ guide. Since all the children with various disabilities/difficulties encounter similar issues in their physical, emotional and intellectual development, I would proceed with Autism as a main area of discussion in this book. This would provide a fair insight to the parents who are new to the world of disability. Almost all the areas of difficulty of a special child are defined and discussed in detail so that the readers are well equipped with the information to understand and support a child in need. Also the stories from some of the special parents are shared who readily agreed to participate in my campaign so that the parents of children who are newly diagnosed with any disability/ difficulty do not presume they are the only ones and get inspiration and positive energy to fight against disability and give better life to the child. “It’s not easy to describe the experience of raising a child with special needs. From the outside, it may look challenging and stressful. But in the heart of a parent, it is a wonderful experience of evolution and personal growth. Parents of kids with special needs don’t see a disability when they look at their kids. Instead, they see the most precious and wonderful blessing of their lives. They see their child. We share our life experiences, our kids’ smiles and their achievements, not as a way to convince ourselves and others of their perfection, but simply as parents whose children are their pride and joy. We talk about our kids’ disabilities not to label them, but to make others aware of all our similarities and the great efforts our children make to achieve their goals. Still, even the most resilient of parents need some inspiration and reassurance sometimes. These quotes were not specifically created to explain To The Reader 11 the experience of raising a child with special needs, but they are a good reminder to all of us to see the beauty, joy and hope in our everyday lives with our children (Eliana Tardeo)”.

CHILD’S VOICE I am not a special child I am a child with special needs I am not disabled I am Differently Abled indeed Do not stare at me Do not glare at me My heart aches in dejection As I am God’s best creation Kindly bear with me when I throw a tantrum Kindly respect me and accept me as I am If you loved the sample and would like to buy or gift the book :

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