Thursday, March 31, 2011

Camping With Ramam

The last weekend I and Ramam set out on a camping trip. I would not have thought of such a possibility as this few months back. But it was made possible by Sarbani  mallick and her team at Bubbles. As everything was taken care of, logistics, food, accommodation all that was needed to be done was to pack my bags and leave.
                                                     But, yes there were way too many apprehensions in my mind in the beginning. Will I be able to manage him alone? What about his food? I think food is always such a major issue with parents. Loaded my bag with every conceivable gfcf snack. It was some solace there were couple of other parents with children on the diet.
                                                        The camp was being organized by the adreno group. Ramam enjoyed it from the word go. The excitement of the trip caught on to him watching me pack and he was up at 3 in the morning! He decided to sit on a 3 seater in the bus, decided on a window seat, listened to music on his i-pod, nibbled on his snacks in the bus ride. It took us about 3 hrs, 130km from Bangalore.
                          On reaching the camp we unloaded our stuff, had some replenishment, and set out for the rope activity. Later had lunch, took a breather and set out for trekking in the evening.  Albeit  it being only a short trek, praise is still due to all the  mothers especially the ones of the younger lot who came along ,the little ones tagging along in their diapers. All of us were busy clicking away photos, the adage the more, the merrier.  The weather was just perfect, breezy, cool………
                                  Got back, there was a round of circle time with drums and music and some good fun around the camp fire. But, by then Ramam was exhausted as he had started his day very early. Ramam was thrilled with the idea of sleeping in a tent, and was overjoyed I was carrying his pillow and bed sheets. Just the look in his eyes said a lot. The volunteers pepped up the fun quotient up a few notches and were in the process enjoying themselves. Nilima, an art therapist also joined them in livening up the proceedings. There was a hostel adjoining the camping site .The children staying there also joined our party. It was heart warming to see such small children playing  host, always ready to help us with a bucket of water( we were using their restroom facilities) or simply exchanging pleasantries with us. The next day we set out for still water rafting, had breakfast and began the journey back to Blore.
                                  The beauty of this camp as I see it was the pace, the activities were well spaced out giving everybody enough time .It was never hectic or strenuous. All the children and parents got a chance, be it rope activities or the boat ride. It also goes to show the mettle of the staff, mothers, organizers, that the event progressed smoothly, with practically no hitches. The adreno gang was superbly efficient, ensuring everybody was comfortable. The children and mothers were ready to move on notice, food was served fresh and hot, everybody was cheerful and smiling. I even squeezed a short game of throw ball. The best part being the children cleared up the camping site after the pack up sending out a clear message of social responsibility.It was a tenet issued by Sarbani right at the beginning, no messing up the bus or the camping site.       
                                    The event was not meant to be a picnic or a family together, but it turned out to be all that and more. For the first timers it was a very different and refreshing experience. The children also surpassed the expectations and enjoyed themselves. Experiencing something very different from your city life, trying out activities of altogether of a different nature all of it had a cascading effect making it very memorable.

Thursday, March 24, 2011

Building language skills

It has been quite some time since I have blogged. Somebody recently asked me how often do you blog? I said probably 2-3 posts a month. But then I realized I have posted just one this month, I better buck up. My GFCF recipes have also dried up!! Am going thru a lean phase with nothing much I can think of adding. But just this. I recently attended a workshop by Dr. Yamini and Dr. Shiv Shankar from NIMHANS on language building and communication for our children, Sorry, I haven’t got the title right but what mattered was the content of the workshop.  I was looking forward to Dr. Yamini’s talk as I have interacted with her on earlier occasions but Dr. Shiv Shankar was also equally good.
 The first point he made was not to confuse language with speech therapy. What we want for our children is language therapy and not speech therapy. One spends time commuting to therapists, money on therapies all to no avail because language therapy is something one must to do 365 days 24*7.The therapy is on thru the waking hours of the child, it is not an intensive 8 hr therapy to be done  and be done with it. One doesn’t need a specialist to do that.
Secondly, when working on language for our children we need to focus on the semantics and pragmatics and the syntax …………. (Syntax -my son’s speech OOPS! language therapist added)The semantics is the meaning of words and phrases, while pragmatics is how to use these phrases, words to communicate appropriately in a social context. Syntax, of course is grammar, the tenses, verbs…
Thirdly, move form concrete to the abstract. Start with objects, who is this pointing to an object-to a picture to with whom did x go with..., which is a much higher level.
Fourthly, Breakdown the complex skills into the simplest steps, as there are no shortcuts, teach in a naturalistic teaching, ensure errorless teaching.
Fifthly, the presence of the third person in a therapy session, Dr.Yamini insisted is very important, because the third person models the behavior for the child. Posing the right questions, answers and behaviour. This is probably what my daughter Isha is doing.
Sixthly, encourage pretend play. Behaviors are systematically reinforced. She also dwelt on the theory of mind briefly to the end of the session.
Seventh, some simple activities, Dr. Yamini suggested like checking who is at the door. If the child looks at the person and runs back to you without telling anything the communication intent has been achieved. That would b the first step. Target generalizations. A simple, how are you question can be asked and acknowledged in different situations in different ways.
                                    To sum up, my therapist, corrects me every time, when I use the word vocalize. He says we are not trying to make Ramam vocalize rather we are trying to make him verbalize meaningful sentences. Phew, that is some semantics. (Am I right?)

Thursday, March 3, 2011

New Law

I would request all readers reading this blog especially from Bangalore to give this post its due importance.
For people who are totally unaware of the new disability act coming into act shortly, I would like to provide some background information. A new law is being worked on for people in the disability sector as a replacement of the 1995 PWD (persons with disabilities) act. A working draft committee with a handful of very committed members (as I say handful, in terms of comparison to the number of people affected) is looking into it. This is an issue close to all our hearts especially the parents.  Read on. This is an abridged version of a mail that has been circulated among the members for a better understanding of the law and its shortcomings.
The issues are
·         The mandate of the committee, and specifically the one law multiple law issue
·         Inclusive education versus appropriate education
·         Consultation with the wider sector
·         The worth of parents with disabilities.

The mandate of the committee, and specifically the one law multiple law issue

    We are trying to promulgate a comprehensive law that will take into account the considerations of rights of all people with disabilities. However people in the disability sector are divided on the interpretation of this issue. One section wants all other disability laws including the existing National Trust Act be repealed, arguing that having separate laws will stigmatize persons with intellectual disabilities, the deaf blind, autism etc. However, persons with intellectual disabilities, the deaf blind, autism etc, which is the disenfranchised sectors, the population that the National Trust serves, are not in favor of repealing these acts right away.  Those of us who belong to these sections know that when we have one legislation for all, then the marginalized will be the ones who will be left out as happens even now. Yes the rights of all persons with disabilities should be covered under this new comprehensive rights law. But that does not prevent the existence of other laws, especially to address issues that concern those disabilities that have very high support needs.  Autism is one such sector where  even most adults need attention and support 24x7.
Inclusive education versus appropriate education
Although to send our child to a mainstream school is a dream all parents cherish, but unfortunately it is not possible in all cases. Another issue is the case of inclusive education along with special education versus inclusive education banning special education. As a mother of a child attending a special school, it is an option that must not be ruled out. What happens if the child is not coping up in a mainstream school? Also the mainstream schools will also take time to get better and equipped to meet the needs of the special child.
Consultation with the wider sector
Initial participation by members in various committees form the developmental disabilities were poor. One area of controversy regarding the wider consultation has been the question, who decides which sections of the disability sector should attend. Who determines this, the group with the largest presence??? I t is in this troubled scenario when state level consultations take place there is a need for adequate representation from the Autism spectrum Intellectual disabilities sector.
     The worth of parents with disabilities.
There is no doubt that persons with disabilities should be their own advocates and spokespersons. There is no question that nothing should happen for persons with disabilities without their consent and participation. One does not dispute that for those with mobility impairment, visual impairment, hearing impairment, and so on; they are the best persons to decide their destiny. Also they are capable of doing so.

     But what happens when these rights are intertwined with the rights of those disabilities that cannot articulate their rights?  My son cannot communicate what he did in school, how can he be expected to articulate for his rights. Should these disabilities go unrepresented because they cannot represent themselves? To trash the parents right to be supports for them, to trash parents right to articulate their rights for them, is just so unfortunate. What makes it more disturbing is that many of us parents feel so overwhelmed with the day to day struggle. We are their advocates and we must hold their hands.
Disability discourse rightly talks of giving power to Disabled Peoples Organisations (DPOs). At the same time parents, of those persons with disability who their rights, need to speak up and demand that Disabled Peoples Parents Organisations (DPPOs) have a right to speak for persons with disabilities such as autism.
        Thank you for the patience and time you have taken to read this. There is more to the law. As it concerns your child please take time out to read the proposed draft of the executive committee.

How can you participate?
To garner all the inputs from ASI and evolve a Consensus on this very important issue to present at the Bangalore Consultation, we will be having a meeting, details of which are below:
Kindly confirm your participation - with your name, organisation and contact details and any specific access requirement by the 2nd March 2011 as this will help us in making the necessary arrangements for the consultation.
As agreed during the State Coordination Meeting on 15th Feb 2011 at the Office of the Commissioner Disabilities, CBR Forum will be hosting the consultation with persons with disabilities, parents, NGOs, representatives from Govt. from Bangalore Urban District on the Working Draft on the Rights of Persons with Disabilities Act, 2011.
Some of the topics covered would include the
a)      The 5 non negotiables:

·         Parents to be acknowledged as having same status as persons with Disability to voice concerns of their ward. Wherever there is reference to Disabled Peoples Organisation, Parents Organisations to be also mentioned.
·         Legal Guardianship should remain intact in addition to Supported Decision Making. (ref ; pg 38, Sec-9 B)
·         While we support Inclusive Education as an ideal that all parents would aspire to, we need specialised services and special education services for some of our children. We do not support ONLY inclusive education.
·         Separate Training Facilities need to be available with Specialized Teachers to take care of persons with higher support needs such as in the case of Severe Intellectually Disabled person.
·         More Fund and grants to be allocated for Research and Development and Intervention programs for Disabilities such as Autism, which are relatively new, and less known.  
b)      Providing land at subsidized rates for these children, establishment of caregivers and their training…..
                 For those of you, interested in attending, I shall be happy to forward the complete briefing note that has been circulated. My id is /

The objective of the consultation is to: 
" To provide and overview of the content in the Working Draft 
" To collectively identify Gaps/ Areas that needs to be addressed in the Draft
" To document these Gaps and submit to the Commissioner (Disabilities) and SNAC by 10th March 2011

The consultation will be held on 7th and 8th Mar 2011 at Don Bosco, Milton Street, Bangalore - Tel: 25494760/ 25494758. You can confirm your attendance with Ruby Singh,  ( 9741418103) /kavitha -

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