disAbility Rourkela: May 2012

Saturday, May 26, 2012

Akila Vaidyanathan's blog on autism

Dear teachers and parent members of Autism Society of India. Schools will be reopening again after the summer break and you may need to explain to children especiallyin mainstream schools about your childand about autism. Here is a simple yet graphic explanation from the blog by Akila Vaidyanathan http://navigatetheautismmaze.blogspot.com/ Some of you may haveseen my son Nishant at school/Hippocampus. He runs up and down the stairs,seems very excited sometimes, very upset at some other time .He may have bumpedinto you or tried to push you over when you were at the computer or sand pit.You may have wondered why his behavior is so strange? Why he does not talk atall? Why one of his parents is always with him? Why all this when he looksquite a healthy normal boy? Is he just behaving badly? Is he crazy? Nishant isactually not crazy nor is he badly behaved .He is just very different from allof us .He has a disability called Autism. This disability is very difficult toexplain or understand as it affects a lot of areas of functioning in a person. The first area wherethese people with Autism are badly hit is the area of speech andcommunication. They find it difficult to express themselves throughlanguage as well as gestures. Try this out: Imagine, you aresuddenly transported to a new place where the people speak a new language thatyou do not understand at all and they also do not understand the actions youare making. You will feel quite lost won’t you and some of you may even feelscared. Further, imagine, thepeople in this new land keep thinking that you know their language and actions[gestures] and keep talking to you in their language and making faces andgestures at you. How would you feel? . You may feel anxious that they do notunderstand you and if this went on for days together you might even be in tearstrying to understand them or respond to them .You may try to ignore them, tryand convey to them to just leave you alone. Also, because you arenot responding to them, they may start dragging you around the place making youdo the things they think you are supposed to do, How would you feel now? Youmay really not want to do the things they are making you do and you may protestby screaming, crying, having a tantrum or by even trying to hurt them orhurting yourself to get their attention to what you want. This is exactly how aperson with Autism feels – as if he is in a strange land where he does not knowthe language and the people do not understand him at all. Over time he learnssome of the new language but just is able to use it to communicate his basicneeds. Some children with Autism do not talk at all – they are mute. Some onlyrepeat whatever they hear – they are said to be echolalic. These are differentways in which they cope with their difficulty with speech and language. Somelearn to talk very well and have very good comprehension – that is they understandall that is said but still have difficulties with communication. It has beenfound that if children with Autism are taught language at an early age like oneand a half or two years, they pick up much better than the ones who are taughtlater. They also havedifficulty understanding social rules .You may have realized that socialrules vary from country to country and even within a country it varies fromculture to culture and they also have changed over time .For example theChinese think it is good manners to leave some food on your plate after a mealso that the host thinks you are really full and satisfied and could eat nomore. In our culture that is considered rude, you are expected to clean yourplate of the last morsel to prove you are happy and satisfied. People with Autism findall these rules very difficult, as they do not understand their context andrelevance .In a sense they behave like they are from another planet. They maystop eating when they are full, take something they like from someone else’splate, eat with both hands etc. It takes a lot of effort on our part andpractice on their part to teach them these rules. And once they learn therules, if you want to change them, it is even more difficult for them to acceptthe change. Their difficulties inspeech, language, communication and understanding of social rules, makes itdifficult for them to make friends, hold good conversations, participate insocial activities that are unstructured or crowded or new like parties orweddings. They also find it difficult to participate in games involving complexrules like chess and team games like cricket or football. This also contributesto their strange behavior or anxiety at times. Sensory integrativedeficiencies have also been found with most people with Autism. This meansthat their senses like hearing, vision, touch, taste and smell may not befunctioning well. Some senses are more acute and some are not working too well.Many of them have very good visual skills. Some may close their ears to certaintypes of noises. Sometimes they cannot use all their senses together - forexample they cannot see and hear together so even watching TV may be somethingvery difficult for them !! This is also one of the reasons why they may notlook at you when you are talking as they are trying to hear you and the minutethey look at you face with your ever-changing expressions, they may not be ableto “hear “ what you are saying. Also when they are looking at something, theymay not respond, as they actually do not hear you – you may have to catch theirattention by tapping on their shoulder or asking them to look at you. Their brains are notvery organized too. Just imagine if you kept dumping all the information youcollect through newspapers, magazines, books, internet, photographs etc into abig box and do not clean or sort this box at all or you keep adding files inyour computer in any order without deleting the unwanted files or havingfolders for each topic. Would it not be difficult to retrieve information whenyou want something specific? By the time you find the things you need you mayget distracted by some other things you see while searching or you may evenforget what you are looking for. Something similar happens in the brains ofsome people with Autism. Their brains do not prune or “cut off” the unwantedinformation. Hence it is like an overgrown forest where it is easy to get lost!! Persons with Autism alsoexhibit some strange behaviors that may “look” bizarre or “crazy”. Someexamples are excessive running, flapping their hands, spinning themselves,playing with spit, playing with their eyes – rolling eyes, rocking etc. Theymay be obsessed with an object or keep talking about a particular topic. Thesebehaviors may arise out of their sensory difficulties. Also since their livesare quite lonely, given the fact that only a few people interact with them on adaily basis and even these few may not be able to understand them all the timeor be with them all the time, they develop means of occupying themselves inwhat we may perceive as strange ways. People who are in solitary confinement ina prison for years usually either totally switch off or find ways of occupyingtheir body and mind like pacing up and down, jumping in one place or playinggames in their minds, having imaginary conversations etc. Something similarhappens to persons with Autism. Persons with Autismsometimes have a particular area where they do very well. These are called “isletsof ability” – which means that though they may have severe difficulty insome areas, they may be very good with some other stuff. Some are talentedmusicians, some are very good artists, some are poets and writers, some beatthe computer with their ability to do arithmetical calculations. Some have verygood memory – they can remember, names, faces, routes, whole books like thedictionary or the railway time table !! Some children withAutism are able to go to regular schools and even go to university later inlives and lead independent lives. This depends on the level of Autism theyhave, language and communication skills, ability to function in a groupenvironment, ability to learn abstract concepts and degree of behavioralproblems. Also some are integrated into regular schools with some extra help orsupport like Nishant. Some others need more specialized help and care and hencego to special schools .In India there is a huge need for more integratedschools as well as special schools as well as respite centers and vocationaltraining centers for people with Autism. This is because the level of awarenessabout this disorder is still poor. The cause for Autismis still not known though a lot of research is being done in this area.Scientists and doctors feel that the persons with Autism are born with somegenetic tendency to become so and there may be environmental triggers like thediet. Usually the disability is not very apparent at birth. However as thechild is about two years old, based on the symptoms, parents and doctor’s candecide that the child has features of Autism .As it appears when the youngchild is developing, it is called a developmental disorder. It is alsocalled a pervasive disorder as it affects a number of areas ofdevelopment The degree of difficulty varies from mild to severe for each of thesymptoms which makes each person with Autism very different from the other andhence Autism is called a spectrum disorder. Some persons with Autism canalso have epilepsy, mental retardation, praxis or motor control problems etc. Being exposed to anumber of people of different ages, cultures and backgrounds and also differentenvironments as well as having a number of things to do, from a young age,helps them to become less and less rigid and cope better and integrate betterinto the family and community The best way to reach out to a person withAutism is to spend time with him doing something that he likes or isinterested. They may not fare well in large groups so it may be best if one ortwo of you interact with him at a time, initially in the presence of a personwho knows how the person with Autism communicates and knows his/her interestsand preferences. Over time you can share your interests with him/her andincrease his scope of interaction. Nishant likes swinging,cycling, swimming and trekking and long drives and holiday’s .He also lovesanimals and nature and trains and likes to read books or watch programs onthese subjects. He also loves to see photo albums. He likes to play games onthe computer. His favorite video is “The Lion king” .He loves to eat food andthankfully he also likes to work out at the gym so his weight is in check! Healso loves hugs and cuddles and tickles and rough play. He likes to listen tomusic and dance once in a while too. He is also quite affectionate and neverforgets a person who has reached out to him in some way or the other. He isgood at his school work even though he cannot talk or write, he answers bypointing to his alphabet/number board or by underlining or circling the rightanswers. Some children inNishant’s school have asked me “Why did God make him like this?” It isdifficult to answer that question but we can only be sure that since Godcreated him, he must have had a purpose. Moreover as a part of God’s creationhe must also be as perfect as any of us. One of the purposes must be to remindus not to take things for granted and to realize how blessed we are to be giventhe use of all our faculties mentally and physically. The other purpose one canthink of is for us to go beyond our own goals and needs and to awaken thegoodness that dwells in all our hearts to accept these children as our own andhelp them to the best of our ability. Probably they are God’s own angels whohave volunteered to take on so much suffering in their lives so that we maybecome better human beings

HRB clinic

HRB clinic, a photo by sswain_1999 on Flickr.

Parents bring their developmentally disabled child.

One more child with PDD with the speech therapist

One more child with PDD with the speech therapist, a photo by sswain_1999 on Flickr.

HRB clinic, IGH

A Down's child with mother

A Down's child with mother, a photo by sswain_1999 on Flickr.

In HRB clinic.

Child with PDD sitting on elder sister

Child with PDD sitting on elder sister, a photo by sswain_1999 on Flickr.

With parents and early interventionist in HRB clinic in IGH

Child with cp in HRB clinic

Child with cp in HRB clinic, a photo by sswain_1999 on Flickr.

Friday, May 25, 2012

Books at the fingertip

Rahul Cherian : Wed May 23 2012, 02:20 hrs New copyright law makes printed matter more accessible to the visually impaired The ayes have it, the ayes have it, the ayes have it. This simple phrase, which ended the proceedings of the Lok Sabha on May 22 marked a momentous day for the estimated 40 million persons with print disabilities in India. At 2.34 pm, the Copyright (Amendment) Bill 2012 was passed by the Lok Sabha — it had earlier been passed by the Rajya Sabha — thereby ensuring that people with print disabilities can exercise their right to knowledge on an equal footing with others. The new law enables persons with visual impairment, dyslexia and other print disabilities, their families and friends, as well as non-profit organisations, libraries and educational institutions to take any book and convert it into Braille, audio, large-font and digital formats, without seeking the prior permission of publishers. The effect of this bill on the lives of millions can be understood by looking at the current problems that persons with print disabilities face in accessing reading material. Under the earlier copyright law, publishers had the exclusive right to makes copies of their books. Since persons with print disabilities are not a large enough target market, publishers do not find it financially worthwhile to sell books in accessible formats. Which means persons with print disabilities cannot go to a shop and buy books like everyone else. Licences from publishers were required for conversion of books into accessible formats and other than a handful of publishers, most were unwilling or uninterested in granting licences. As a result, it is estimated that persons with print disabilities in India have access to less than 0.5 per cent of the written material that is available to the rest of the country. Blind children could not study since they did not have text books; those blind people who defied the odds and completed their education could not find meaningful employment since they were unable to access reference material. Leisure reading was out of the question. These are the problems that the Copyright (Amendment) Bill seeks to overcome. Even though the benefits of the bill are obvious, the journey to get here was neither short nor easy. The father of the movement to amend India’s copyright laws, the late Vinod Sena, a visually impaired professor of English from Delhi University, started the initiative way back in 2002. Remember that this was before disability had the mindshare it has today and the going was tough. But in 2006, after sustained campaigning by a group of individuals, the Copyright Office, under the then registrar of copyrights, Madhukar Sinha, proposed several amendments to the Indian Copyright Act, 1957, including a provision for the benefit of persons with disabilities. This version of the amendment had a fundamental flaw: printed material could be converted only into Braille. Braille as a format has limited application. Persons who lose their eyesight later in life find it difficult to learn since their fingers may not be sensitive enough to distinguish the dots of the Braille system. It is also not useful for persons with dyslexia. In addition, with the advent of information technology and the invention of software that reads out the text on the computer screen, persons with print disabilities have turned to these in increasing numbers. As a result, conversion of texts into MS Word and PDF documents became essential. However, the amendment did not permit the conversion of printed matter into formats other than Braille. Campaigners made representations to the Copyright Office in 2006 on the flaws of the proposed amendment. Despite the nationwide Right to Read campaign, supported by students, intellectuals, authors, publishers, and widespread coverage in the media, this faulty wording continued in the proposed amendment when the bill was first introduced in the Rajya Sabha in 2010. Thereafter, the bill was sent to a parliamentary standing committee. Organisations working for the disabled got a chance to present their arguments to the committee. The panel was extremely receptive and in its report, submitted in November 2010, it endorsed all those arguments and recommended that the Copyright (Amendment) Bill be rewritten to reflect such concerns. With the support of G.R. Raghavender, the new registrar of copyrights, the wording was corrected. And 18 months later, history was written. The writer is founder, Inclusive Planet Centre for Disability Law and Policy, Chennai, and an intellectual property lawyer, express@expressindia.com Kind e-mail from Mr. Vijay Kant, COM, PARIVVAR, India

Saturday, May 19, 2012

One year child with cp in HRB clinic

One year child with cp in HRB clinic, a photo by sswain_1999 on Flickr.

Developmentally disabled child with facial dysmorphism

Developmentally disabled child with facial dysmorphism, a photo by sswain_1999 on Flickr.

Nearly 2 year old child not able sit or say 'papa' in HRB clinic.

Sunday, May 13, 2012

A Tribute to Mothers

At a recent Autism Conference this was read at the Parent Forum (excerpt from Erma Bombeck) “Mostwomen become mothers by accident , some by choice, , a few by social pressures,and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped childrenare chosen? Somehow I visualize God hovering over Earth, selecting his instruments of propagation with great care and deliberation. As He observes He instructs his angels to make notes in a giant ledger “Armstrong Beth, ---son (Patron saint Matthew) Forrest Marjorie (patron saint Cecilia) Carrie ---twins (patron saint Gerard) Finally He passes a name to an angel and smiles “Give her an autistic child” The angel is curious “Why this one, God? She’s so happy” “Exactly”says God, “could I give an autistic child to a mother who does not know laughter? That would be cruel” But has she the patience?” asks the angel. “I don’t want her to have too much patience or she will drown in a sea of self- pity and despair. Once the shock and resentment wear off, she’ll handle it” I watched her today :she has that feeling of self and independence that is so rare and necessary in a mother. You see, the child I am going to give her has his own world. She has to make him live in her world and that’s not going to be easy.” Here is a woman whom I will blesswith a child less than perfect. She doesn’t realize it yet but she is to be envied. She will never take for granted a spoken word’ She will never consider a step ordinary. When her child says “Mama” for the first time she will be present at a miracle and know it! I will permit her to see the things I see….ignorance, cruelty, prejudice…and allow her to rise above them. She willnever be alone. I will be at her side every minute of every day of her life, because she is doing my work assurely she is here by my side” And what about her patron saint?” asks the angel pen poised in mid- air. God smiles “ A mirror will suffice”