Preparing for life..............

“If every child matters, every child has the right to a good start in life. If every child matters, every child has the right to be included. And that is so important for children with special needs."  Cherie Blair


This was possibly one of the most difficult periods in our lives. We were back from US without finding any answers; we were completely bereft of any funds and even though we knew what the problem was, we still had to deal with the same variables. Yatish was still going to Sophia Opportunity School and there he was working with Arathi Appayya, who was a special educator and was trained in US in dance and movement therapy. She was one of the most exceptional human beings I have met. She was not only a great friend to me but was equally involved in bringing out the best in Yatish. She was the first person to notice that Yatish had inclination for academics and she told me that we should start school for Yatish. This just opened a Pandora’s Box of sorts. For the first time, I realized that we not only have to take care of Yatish in terms of his physical needs, we also have to give him a fair chance to realize his intellectual potential. When I mooted this idea, most of them were apprehensive. But the spark in me was lit.

We started looking out for schools and it is such a pity that in India where we have a staggering 5-6% population with disability, which means around 600 million people have some kind of disability and yet our educational system has not put enough efforts to cater to special needs. Whatever we have is scattered, few and far between. I approached many schools and they had a standard answer, “our school is not equipped to handle special children” and many of the so called special schools would have taken in Yatish, if only he was independent. The Spastic Society also runs a school for CP children, but I was not keen to put him there, probably because of my low confidence on their ability to effectively address my sons needs… and moreover I was keen on inclusive education for him. I believe that special children have to ultimately live in the real world and sooner they can learn to cope with the outside world, easier it will be for them as much as it is important for the real world to learn to cope with special children.

http://unesdoc.unesco.org/images/0018/001866/186611e.pdf

In between all this we were looking for some fabricator who could design the body jacket, which the therapist in US had recommended. We finally got hold of a fabricator, who had this dingy workshop and we told him what we wanted. But I guess the specifications got lost in translation, because what we got as the end product was an impractical, funny looking contraption. Of course we could not use it.

We were told that we should try Bangalore International School as they took in special children and I spoke to the head of the special education department of the school and she told me to get Psycho educational assessments for Yatish from Spastic Society. To assess a special child, you cannot apply the usual IQ tests, but actually have to include measures from different tests to assess the various areas of cognitive functioning referred to as cross-battery assessment in order to correctly assess the child. Sadly even the referred organization had limited expertise in this matter which is truly disappointing.

http://www.cls.utk.edu/pdf/keys_ld/chapter2_pa.pdf

But then these international schools charge exorbitant fees, which we thought was not justified, let alone the thought of arranging the means. I had to look for something else.....

http://www.isbi.com/viewschool.asp?school=3433-Bangalore_International_School

Was it worth it??

Every time we think back, my hubby and me end up asking this question, was it worth the trip to US? Did it really help Yatish in anyway? The answer is an emphatic NO. But the only thing, I want to believe is that it shook me out of denial. I began to accept Yatish’s condition. It gave me a sense of direction and an idea of what would not help his condition. For the first time it sunk into me that my child would never be normal and the sooner I accepted this, I could help him better. I put on my B-school overalls and set about making a road map to Yatish’s future. Here is how the SWOT looked


Strengths

1.Had no intellectual disability

2.Did not have any other complications like epilepsy, so hopefully there was no downward spiral

3.No learning difficulties

4.No visual spatial perception difficulties

5.No sleeping or toileting difficulties

Weaknesses

1.Had no speech

2.Had a mixed CP, so his body tone varied from being very stiff to being floppy

3.All the four extremities were affected( both hands and legs)

4.Had swallowing and chewing difficulties

5. Muscle co-ordination was severely affected

Opportunities


1.Could use his superior cognitive abilities to make his life more meaningful
2. He was eager to learn , so schooling was a definite possibility

3. He was very co-operative, so responded to therapy

Threats

1.Did not know how to benchmark our efforts and there was always a fear of not doing enough

2.There was no definitive rehabilitation programme we could follow

3.There was always a fear that he may develop complications





We came back from US with mixed feelings, sad that it did not change anything and satisfied that we had done our best and now we were better equipped emotionally to deal with the problems. Now we had to take care of three things, physiotherapy, occupational therapy and speech. Since he was just a little over two years, we decided to concentrate on his physiotherapy. We did however meet a speech pathologist , once we were back in Bangalore, who advised us at that point of time there was nothing like a structured programmed we could do, but we should talk to him like any other normal kid, and not stop talking just because , he would not respond sometimes, which in hindsight was a great advise. Normally people when talking to children have a tendency to take the advice of coming down to their level a tad too seriously and more so with special children that they end up mumbling. I recollect an incident here; I was travelling in a train and there was this person, who saw Yatish and thought that he had figured it all as to how to deal with him. He started off gesturing vehemently, and Yatish looked pretty amused and started laughing, because he really looked comical. I quietly asked him if he had speech impairment and he understood what I was trying to get through to him. Of course I could not explain to him the Fis phenomenon and that Yatish would perfectly understand if he could talk to him normally.

http://en.wikipedia.org/wiki/Fis_phenomenon

We got back to Sophia School to continue his early intervention programme. By now Sr. Naina, who heads the Opportunity school had taken training in Allergy testing technique called Nambudripad's Allergy Elimination Techniques (NAET) and she was determined to put every child in the school through this test. I was not really convinced about this technique; however I felt there was no harm in giving it a go, since it was non-invasive. Nothing came out of it as expected.

http://www.naet.com/subscribers/what.html

http://www.revolutionhealth.com/stories/view/2e229a38bbe81029878b0013725222f6

One more experiment…… one more failure….A new day.. a new experiment…. The journey continues….. !!!!