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….. !!!!