How much to trust the labels in the I.Q. reports?

Recently, I informally assessed two young children (Age 9-10 years) for their learning challenges. The parents had brought them to me for their supposedly ADHD (Attention Deficit Hyperactivity Disorder), Learning Disability and epilepsy & its effect on their learning. The parents had come to me especially because I have first hand experience with epilepsy and teaching children with learning difficulties. Before coming to see me I had asked them to send me their formal reports of I.Q. testing & other tests if administered. That gave me a rough sketch of them (Though I rarely rely on them). Both the children came on different days but the pattern which I saw was the same. The parents were anxious, on the edge, confused & the children were initially hesitant to speak up, interact but once the rapport was built wanting to pour their heart out. The reports had different labels for them like ADHD, aggressive, having behavioural issues, etc. But when we started ineracting with them, I was pleasantly surprised to see these same children very well behaved, full of enthusiasm, wanting to do many things ( was it seen as hyperactivity by the previous report makers?) The ADHD child, the fidgety child completed the form about himself by investing his 1 hour to that piece of paper , drawing himself & colouring him as brightest.

Anyway, what I found out was no constructive advise/solution/ programme was given to the parents and only a one dimensional picture of their child. I explained in detail, how we will work on all the positives of their child, strengthen the weaker points, how they should carry on the programme at home, how they can take charge of the situation with our help, the parent’s faces lighted up with joy. That is why I believe, urge and insist on parental engagement in the child’s leaning/remedial programme and their empowerment. To know more about our work pl log on to http://www.childraise.com ChildRaise Trust

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The steps that led to ChildRaise

During the Corona pandemic and the lockdown period lot of videos are being circulated. Some are informative, some entertaining, some funny, and some disturbing.  Among the one that disturbed me was a video where people were imitating people with disabilities to violate the lockdown, faking a disability to avoid police surveillance. I was glad that the Disability sector did not take it lying down.

I was settling in my lockdown routine and my epilepsy advocate friend messaged me to sign a petition on #SeizureChallenge in which youngsters were dancing to the songs and suddenly faking a seizure – a grand mal seizure where one froths at the mouth.  I was shocked beyond words at the insensitivity of the challenge. I immediately signed the petition to stop the #seizureChallenge. I did not stop at that but I shared it on my various social media posts so more and more people knew about this weird, outrageous challenge and they could sign to stop it. 

Both these videos highlighted the fact for more awareness. And also some people in society react to disabilities differently depending on their level of understanding, awareness, exposure, innate compassion, empathy so on, and so forth. It started a train of thought in my mind. When did it occur to me that we all have different capabilities and disabilities? and people’s reactions to them. I dug deeper into my bylanes of memory.

I had severe myopia and since a very young age wore very thick spectacles. I clearly remember people pitying me and stopping me mid-game to say how it must be difficult to play with such heavy glasses in reality when I was enjoying the game.

So many incidents came rushing to my mind…

There was a girl in my class with polio. She studied with us till we left the school. That was my first brush with a person with a disability. Later in my college days, I volunteered to be a writer for a visually impaired girl appearing for her graduation. This initiation into being a writer for visually impaired students was by a young lady in my housing society who had a hearing impairment herself. I also had a classmate who was hearing impaired and excelled in her studies.  I am so proud to know her as she is a scholar and a force to reckon with in the disability sector today. Of course, we did not know what would be the future, but knowing her determination, we all knew she would make something out of her life. Later when I joined my workplace, one of my colleagues was severely hearing impaired and my other colleague used to make fun of his condition. Then, I was not into the disability field and not so active but I knew this was so very wrong and I remember raising my voice. I used to interact with him and took pride when he shared his achievements in the deaf chess championships. 

I was realising that they also have the same hopes, aspirations, dreams, frustrations,  capabilities, and disabilities. The only difference was their disability was visible. And then epilepsy entered my life and my life changed.  I was destined to learn more. Epilepsy is an invisible disability until one gets the fit or seizure. The person with epilepsy hesitates to disclose that he or she has epilepsy. There is a social stigma attached to it. To find out more about this invisible disability  I joined the epilepsy support group. 

Since the early 90s, I have been with Epilepsy and Learning Disability support groups, both invisible disabilities. I realised  it is very difficult for the parents to get access to the information for special schools, workshops, therapy centers, support groups, etc. And thus http://www.childraise.com was born. That was in 2001. One by one a layer of additional services such as Resource Guide- Journey to Empowerment, DISHA- Disability Information Services: Helpline and Action, a Toll-Free number 1800-22-1203 was started. Later a Remedial  Centre for kids with special needs. And the new projects are adding on…

I am grateful to all these experiences which taught me a lot and formed the base of ChildRaise.

 

Parents …the vulnerable tribe.

Few days back I received a call. A day before I had   returned home after my knee replacement surgery. Though I was in lot of pain, I picked up the call though it was from an unknown number only to learn few  new things about parent behaviour.

It was from a parent..a mother. From the tone itself, I could make out that she was stressed. She wanted to know what my organisation ChildRaise offered to children with special needs. I told her in short that we provide educational guidance, remediation etc. But asked her to elaborate on her child’s age, special needs needs so can guide her accordingly. I also asked her place of residence so can suggest child guidance centres nearby. Instead of providing this important information to me , she in an agitated tone told me that I am not forthcoming about telling her details about our organisation.

I had to remind her that she had made a call on my mobile phone unannounced without even asking me  whether I was free to talk in detail at that time even after repeatedly telling her to call our centre landline number & our Toll free Disability Helpline no. for details.

Few to & fro words ensued. And it surely left a little bitter taste.

Though I really felt bad about this, it really spelt the need for telephone manners, making your requests reasonable even though you are undergoing some amount of stress.

 

Everyone likes a success story

Who doesn’t like a success story? But this story is one with success written all over.

A very special one indeed!

This seemingly very shy, timid lady came to me some years back with my relative’s reference. She told me in a very straight forward manner that she was a single mother who had a mentally challenged son with a speech impairment. She also had a younger daughter & was now staying with her aged mother. What struck me was that she was not wallowing in self pity but was very matter of fact and was asking what to do NEXT?

And this is what prompted me to help her not only financially but by way of advise and guidance.  ChildRaise took care of her son’s studies for few years. Before he could turn 18, she shifted him to a pre vocational centre. Unlike the special school, this pre-voc centre was relatively far away. As they stayed near my residence,  I used to meet the kid sometimes when he used to wait for his pick up van . Whenever he saw me, his eyes used to lit up . In his own language, he used to update me, introduce me to his friends etc.

Yesterday, I had a surprise visitor. This  same lady but with a smile. She came to inform me that her son was now out of pre voc centre  & guess what? He was working with some food chain packing their groceries, grains etc. He was travelling for considerable amount of time, changing two trains & reaching his workplace. I was amazed.

Here was a mother who is not highly educated, is not having a very conducive atmosphere around. But she knew exactly that whatever happens she had to make her son independent. She could give lessons on Empowerment.

Now, I have told her to get her son visit  me one day so I can again see his lighted eyes & animated chatter . … perhaps this is what kept the mother going inspite of hardship!

Isn’t this a beautiful success story? story with a happy ending.

 

How Can I Trust?

It happened two days back but I am still under shock.. not because of the theft but the sheer callousness & the way it happened.
While coming to office, our ChildRaise peon Kalpesh always calls me to inquire whether anything has to be collected enroute. The day before he was talking to me & while talking suddenly the call got disconnected. I tried several times but immediately the message was that he was out of coverage range. I had no choice but to wait.
And this wait was troublesome … why ?Because he has active epilepsy & somehow I knew he had a seizure while talking to me. Can you imagine what happened to him while he was having a seizure? Unbelievable & shameful. He was robbed of his mobile phone!
Instead of helping him to recover from seizure, this thief had his pervert opportunity to steal. And how much he would have got ? a mere 100, 150 Rs. in return for that simple handset ?
Luckily, Kalpesh recovers fast from seizures & bounces back to life. We have given him another handset for the time being & life is back to normal…on surface. But his words ring in my ear- “I am doubly disturbed … realising that having a seizure means you are yet to gain seizure control, secondly, this is more frightening…if I am to get a major attack on the road, can I trust people to help me?

My learning today from my student

I had a remedial session with my student. He came ,  obediently sat down in his chair. As usual we started with our warming up activities. He finished with his  pre writing activities. We were to begin with more complex tasks and he requested me to stop. He wanted a break. He said he was a bit tired. I said he could take a five minute break or we could do some other simpler activity & the proceed.  He said actually he was hungry.

In our centre , we have a small kitchenette. He directed me there.  Usually we have some snacks for the staff as well as the kids if need be. He asked me if I have biscuits. I said yes. I was very happy that I had bought a new biscuit brand with some chocolate filling  & it will be of some use. I could even use that as a reinforcer if this kid  was a bit distracted  to complete the session.

I offered him the biscuit & to my amazement  he said “I do not have biscuits with chocolates or which are with lot of sugar & cream”. Here, in my centre he could have easily accepted it without anyone’s knowledge.

An eight year old was teaching me what Self Control is all about!

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It is time to Celebrate!! The Rights of Persons with Disabilities Bill has been passed by the Lok Sabha!

People from Disability sector are rejoicing!! The Rights of persons with Disabilities Bill is an Act now & it replaces Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995

The Disability Act of 1995 was  archaic as it included only seven categories. The new  #RPwD covers 21 categories and includes acid attack victims, autism, blood disorders, dwarfism and learning disabilities, which were earlier missing from the act.
 Parliament on Friday  16th December 2016 passed the disabilities bill which stipulates up to two year jail term and a maximum fine of Rs 5 lakh for discriminating against differently-abled persons.
The Lok Sabha passed the bill within two hours after a short debate on the last day of the session with the treasury and opposition benches, who have been at loggerheads over demonetisation and other issues, joining hands to clear the legislation.

Prime Minister Narendra Modi was present in the House during the passage of the bill.

Earlier on Wednesday, the Rajya Sabha too had witnessed similar bonhomie for passage of the Rights of Persons with Disabilities Bill, 2016.

Replying to the debate, minister of social justice and empowerment Thaawar Chand Gehlot announced that a scheme of ‘universal identity card for the disabled’ is on the anvil and an agency has already been finalised for the purpose.

The proposed card would also be linked to the Aadhar card to help the disabled all over the country in a seamless fashion, he said.

Gehlot said the universal identity card is being worked upon to overcome the problem of disability certificate being faced by those affected.

He said the government has joined hands with German and British firms for making available state-of-the-art limbs to the disabled wherever possible.

The Lok Sabha witnessed a division on an amendment by Congress and TRS members seeking to raise the reservation in the bill from 4 to 5 per cent. It was defeated by 121 to 43 votes. KC Venugopal of the Congress who had given the amendment pressed for the division.

Members from both sides supported the bill but suggested certain changes to improve the measure.

The bill, which aims at securing and enhancing the rights and entitlements of disabled persons, also gives effect to the United Nations Convention on the Rights of Persons with Disabilities and related matters.

It provides for imprisonment of at least six months up to two years, along with a fine ranging between Rs 10,000 and Rs 5 lakh for discriminating against differently-abled persons.

Moving the bill for consideration and passage today, Gehlot said out of 82 recommendations made by the Parliamentary Standing Committee, 59 were accepted by the Government.

The bill, he said, has increased the number of categories of disabled persons to 21.

The Union Cabinet had earlier approved these amendments to the Rights of Persons With Disabilities (RPWD) Bill, 2014, that had replaced the 1995 Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act.

In the bill, disability has been defined based on an evolving and dynamic concept and the types of disabilities have been increased from existing seven to 21. The Centre will have the power to add more types of disabilities to it.

The types of disabilities now include mental illness, autism spectrum disorder, cerebral palsy, muscular dystrophy, chronic neurological conditions.

It also strengthens the office of chief commissioner and state commissioners for Persons with Disabilities which will act as regulatory bodies.

The bill was examined by the Parliamentary Standing Committee last year. Then, a Group of Ministers, headed by Union Home Minister Rajnath Singh, examined its provisions and sent their recommendations to the Prime Minister’s Office.

Source

http://www.hindustantimes.com/india-news/lok-sabha-passes-disabilities-bill-on-last-day-of-winter-session/story-RV09WRT6VNSTVdshxQNBoN.html

 

 

 

 

 

 

 

Ability over Disability…

“The only disability in life is a bad attitude.” » Scott Hamilton

Disabilities. You can see some and some you just cannot. For normal people, it’s easy to spot a mental or a physical disability in a person. Epilepsy is one such condition which is not easily visible unless the person has an attack and you witness it.

We at ChildRaise try to help and empower the ‘differently-abled’. Yes, differently-abled because although they different, they are absolutely ‘able’ to pursue what suits best for them!

Let’s talk about Epilepsy today. Epilepsy is a neurological condition where the person has a momentary seizure, depending on the type and severity of the condition.

This is Kalpesh. He is our Man Friday at ChildRaise.

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He has active epilepsy. But that does not stop him from putting in his best. His schedule starts early in the morning, when he goes to pick up the vegetables in bulk for his family business. He cleans, helps in setting up the stall.

On the dot, he comes to ChildRaise office. Right from keeping our office spick & span to paying bills, he does it all. Recently, Kalpesh showed keen interest in making newspaper bags. To help him further, we looked up simple, DIY videos which taught him how to go about the entire process.

Here’s how he makes Paper Bags:

  1. Take two thick sheets of a newspaper and fold the edges on either sides 20160721_112029
  2. As you keep folding it, apply Fevicol so that the folds stick firmly together 20160721_112341
  3. Make two inward folds and stick the folds at the bottom of the bag 20160721_112053
  4. Cut two broad strips of a cardpaper, apply Fevicol on one side to stick them on insides of the bag 
  5. Take a string and cut it into two halves. In the meanwhile, once you’re done sticking the cardpaper, punch the sides of the bag to pass a string as handles of the bag 

    6. Your bag is ready!

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With his dedication, involvement, he is an asset to ChildRaise and a fine example to others!

 

Brace(let) yourselves for Friendship Day & Rakshabandhan with ChildRaise!

August is here and so is Friendship Day on Sunday, August 7th & Rakshabandhan on Thursday, August 18th. Both these days are special in our lives. Have you thought about how you can make these days extra-special?

We have an answer! Take a look at these beautiful bracelets. Do you know who’s made them?

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He is Sumukh Dadrawala, a young man in his 20s who happens to have Cerebral Palsy. He has completed his schooling from Punarvas Special School in Goregaon, Mumbai. Due to Cerebral Palsy, his movements have limitations but that has not limited his dreams! Sumukh wanted to study further and expand his horizons. So he enrolled in Yashwantrao Chavan Open University. Guess what? He completed B.A. with First Class. Further, Sumukh completed some basic computer courses & honed his skills so he could enter mainstream employment arena.

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Sumukh was directed to us by an activist parent. He called me up with a lot of hope & introduced himself to us. He insisted that we give him some work to do. We did not have much work which he could do from home at that point of time. Sumukh was persistent and insisted that we give him some work. We were extremely impressed with his determination to work, thus our association began.

One day, Sumukh came to our office with his mother who has always supported him in all his endeavors. He learnt how to send emails, SMS messages to our Disability Helpline – DISHA callers and continued to do so with great commitment.

He has created an everlasting bond with us. We have great admiration for him and his fortitude, commitment, warmth, creativity, positivity and zest for life. Presently, he goes to a sheltered workshop to make beautiful bracelets/ bands. Sumukh will be very happy if you appreciate his work. He has put his heart & soul into this piece of art. We’re sure that you will reach out to Sumukh.
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Make your Friendship Day & Rakshabandhan all the more special by buying this beautiful band that will create an everlasting bond between Him & You.

Contact us on: +918898785000 to make a purchase!

Visit us at http://www.childraise.com to know more.

Holiday Activities for KIDS !

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Summer Holidays are coming to an end and the parents are worried about their depleting stock of ideas as to how to keep their kids engaged.
The scene is not different for the children with special needs. Maybe the concern is far greater with these kids because they do face more difficulties than the regular kids. For one, the opportunities are limited. The hobby classes, summer camps, theatre workshops mushroom across the city during summer time but to find the same for our special children, the search reaches nowhere.

So this is what we suggest to our parents with special needs kids.

Be Creative!

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Many special schools organize summer camps for their students. Enquire with the child’s school & enroll him/her for the same. If the school is not involved, you can utilize this period to your advantage. Depending on their needs & capacities, one has to think of the innovative ideas. Utilise this time for family bonding.

How ?
There are many activities taught in school during the year which need practice.

In Academics-Reading, Writing & Math 

Photo of young brunette woman teaching two sweet kids, cheerful
Lot of activity based books are available in the market which focus on reading & writing. Children enjoy doing worksheets rather than writing in their usual notebook. Sit with your child, take a chart paper & involve them in making their own time table. While doing this, you can teach them time concept by making it date & time wise. Make it colourful with sketch-pens, markers, stickers. Introduce point system to stick to it. At the end of summer, reward them accordingly. If you feel, weekly rewards can be given.

Link reading, writing with daily life
Teach all these activities through our daily life situations & make them understand the relation between these so called academic activities & routine life. Involve them in finding out what is needed for the household. Let them make a grocer’s list.  When you get the items, let them fill it in the jars or respective places. Thus you will make them aware of their surroundings. Whenever you take them to a mall/grocery shop, give the bill to check them. Teach them budgeting. It will give them a glimpse of what it takes to run a household.

Let them make their own newspaper
They will learn to put their ideas on paper. Let them review their favourite T.V. show. They can report about a puppy found down the road. If they find it very difficult, be a volunteer/scribe for such an activity. Thus, we can teach them new words, to use dictionary/thesaurus. Teach them to use a camera & be a photographer. Nowadays with a use of digicam, it is not an expensive hobby.

On a lazy afternoon make a Family Tree 
They can be explained family relationships. While doing all such activities, don’t be very exacting. The fun element should remain intact. Otherwise the kids are first to smell the plot. If you feel they are bored, give them the option to write on computer.

Here is a list of Activities

In the Mornings

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– Take them for a run. Walk down the beach. Collect shells. Later use them in child’s      handicraft. Decorate pots, cans with them. Create wonderful photoframes with them.
-Cycle down the road-Go to the nearest bakery & get fresh bread.
-Involve them in making breakfast. Kids like to prepare sandwiches. Teach them simple things like preparing Maggie Noodles, Egg boil, Sunny side up. They will enjoy the process.

In the Afternoons-

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Toss some handicraft material in front of them & let them come up with creative items.Take them to Hobby Ideas- Pidilite has come up with a fantastic retail store which provides great craft & hobby ideas .For such activities log on to www.hobbyideas.net 

In the Evenings-

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-Enroll them in a skating class. Ask for a special trainer. This is very good for body balance, co-ordination & much more.
-Swimming is also a very good exercise for them. In the hot summer, they will love the inviting cool water.
Also let us know what you have tried this summer. Do write to us with exciting ideas with your details. Sharing brings much more happiness!!

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