Have been busy the last few weeks traveling, reading and arranging new therapy schedules for Avani.
Just like last year, 2015 has also started on a bit of a hectic note. There's a sense of urgency in achieving targets and doing whatever it takes. In my New Year blog I had mentioned how Avu's hyperactivity was our big concern. Her OT suggested we get a complete allergy panel test done to explore the benefits of control diet on hyperactivity and meet Ms. Saswati Singh in Dehradun. Saswati ji has a 26 year old severely autistic son, runs a centre by the name of Nav Prerna Foundation for autistic children and adults and is an ardent believer and follower of CFGF diet. This lady's struggle with her son for almost three decades and her experience in handling children on the spectrum was a real eye opener. We came back from Dehradun with the knowledge of 'risky' foods that trigger hyperactivity and Avu's allergy test results.
Our next stop was Mumbai. A friend strongly recommended a homeopathy doctor who has been working on cases concerning autism. Dr Ditpti Kotyan, came across as a very genuine, knowledgeable and straight forward person. For me the real breakthrough was to be able to open my heart out to her. Almost, all homeopathy doctors go into deep details of the case, but the way I could open up and speak frankly about autism's effect on not just Avu's life but our life as a family shocked me. I needed a bit of counseling, I needed someone to tell me that am doing my best, I needed someone to tell me that I have to take care of my health too and I too deserve a good rest and sleep. She did all of that besides listening patiently to me and assuring me of best treatment for Avani. The immediate target I suggested for Dr Ditpi was to set Avani's sleep pattern. I pleaded her that I have truly had enough, breaking my back carrying Avu through endless nights on my chest. How can I feel rested if my entire body is sore from the ordeal by next morning? And am sure, if sitting straight all night with Avu in my arms is hurting me, then it must be hurting my little girl too, how can she feel rested by sleeping in sitting position?
Traveling to Mumbai and staying at a friend's place gave me more insight into the issues still haunting us.While sitting in the aircraft was not a problem with Avani, waiting at the airport, seems to be our biggest challenge. Her favourite snack, i-pad, crayons, sticker books, nothing at all could hold her in one place at the visually stimulating airport environment. She wanted to run in open spaces and grab those shiny wafer packets. Nothing unusual for a typical four year old too, but at least they would respond to their mother's shouts? We somehow managed through the ordeal. I was grateful for a friend to let us stay in her house for a night before we met the doctor. Her son is as old as Avani and was so curious to meet her. He opened his toy cabinet for Avu to explore. But Avu was fixated with scented candles in her house and was only interested in an alphabet puzzle that the little boy brought for her. What struck me the most was the fact that all the while we stayed at my friend's appartment, Avani didn't give Kabir any eye contact! She perhaps did not even register that he was trying to play with her. Socialisation and communication are two of our weekest areas like a lot of other children on the spectrum.
But Avu is certainly communicating better with me. I no longer have to remind her to look at me while talking. Whenever, she answers a question, eye-contact comes automaticaly, if she doesn't know the answer, then her eyes probe mine for a clue. When we were taxiing our way to the aircraft at Mumbai airport, Avani suddenly said circle looking out the window. I figured she was pointing towards the dot of letter 'i' which was painted on the window and was visible from where she was sitting! That brought a big smile on my face and all my struggles at the airport were lost in that moment.
We came home with a new set of medicines, a new set of problems to look at but with renewed motivation too. All this while I have been reading a book by Kristine Barnett. 'The Spark' is about how Kristine Barnett nurtured her Autistic son's genius and proved all 'experts' wrong when they told her that her son would never be able to read or talk at age three! Jacob Barnett is at the moment youngest physics prodigy in the world, is working on an original theory in physics and could be in line for a Nobel Prize too.
Now that's some motivation. Not every autistic child is a prodigy but every child - autistic or otherwise, has a talent. I just need to explore it in Avani. Am not going to give up ever, and I firmly believe that its only a matter of time before my girl surprises me with what she has.
Meanwhile, we have also started ABA therapy for Avani in a new learning center called BMI or Behavior Momentum India. She is going to BMI five days a week for same hours as a toddler would spend in pre school. Hoping to expand her communication skills further, I have trusted BMI to work on my kid. And once again I have put faith in my instinct. Let's see.
Just like last year, 2015 has also started on a bit of a hectic note. There's a sense of urgency in achieving targets and doing whatever it takes. In my New Year blog I had mentioned how Avu's hyperactivity was our big concern. Her OT suggested we get a complete allergy panel test done to explore the benefits of control diet on hyperactivity and meet Ms. Saswati Singh in Dehradun. Saswati ji has a 26 year old severely autistic son, runs a centre by the name of Nav Prerna Foundation for autistic children and adults and is an ardent believer and follower of CFGF diet. This lady's struggle with her son for almost three decades and her experience in handling children on the spectrum was a real eye opener. We came back from Dehradun with the knowledge of 'risky' foods that trigger hyperactivity and Avu's allergy test results.
Our next stop was Mumbai. A friend strongly recommended a homeopathy doctor who has been working on cases concerning autism. Dr Ditpti Kotyan, came across as a very genuine, knowledgeable and straight forward person. For me the real breakthrough was to be able to open my heart out to her. Almost, all homeopathy doctors go into deep details of the case, but the way I could open up and speak frankly about autism's effect on not just Avu's life but our life as a family shocked me. I needed a bit of counseling, I needed someone to tell me that am doing my best, I needed someone to tell me that I have to take care of my health too and I too deserve a good rest and sleep. She did all of that besides listening patiently to me and assuring me of best treatment for Avani. The immediate target I suggested for Dr Ditpi was to set Avani's sleep pattern. I pleaded her that I have truly had enough, breaking my back carrying Avu through endless nights on my chest. How can I feel rested if my entire body is sore from the ordeal by next morning? And am sure, if sitting straight all night with Avu in my arms is hurting me, then it must be hurting my little girl too, how can she feel rested by sleeping in sitting position?
Traveling to Mumbai and staying at a friend's place gave me more insight into the issues still haunting us.While sitting in the aircraft was not a problem with Avani, waiting at the airport, seems to be our biggest challenge. Her favourite snack, i-pad, crayons, sticker books, nothing at all could hold her in one place at the visually stimulating airport environment. She wanted to run in open spaces and grab those shiny wafer packets. Nothing unusual for a typical four year old too, but at least they would respond to their mother's shouts? We somehow managed through the ordeal. I was grateful for a friend to let us stay in her house for a night before we met the doctor. Her son is as old as Avani and was so curious to meet her. He opened his toy cabinet for Avu to explore. But Avu was fixated with scented candles in her house and was only interested in an alphabet puzzle that the little boy brought for her. What struck me the most was the fact that all the while we stayed at my friend's appartment, Avani didn't give Kabir any eye contact! She perhaps did not even register that he was trying to play with her. Socialisation and communication are two of our weekest areas like a lot of other children on the spectrum.
But Avu is certainly communicating better with me. I no longer have to remind her to look at me while talking. Whenever, she answers a question, eye-contact comes automaticaly, if she doesn't know the answer, then her eyes probe mine for a clue. When we were taxiing our way to the aircraft at Mumbai airport, Avani suddenly said circle looking out the window. I figured she was pointing towards the dot of letter 'i' which was painted on the window and was visible from where she was sitting! That brought a big smile on my face and all my struggles at the airport were lost in that moment.
We came home with a new set of medicines, a new set of problems to look at but with renewed motivation too. All this while I have been reading a book by Kristine Barnett. 'The Spark' is about how Kristine Barnett nurtured her Autistic son's genius and proved all 'experts' wrong when they told her that her son would never be able to read or talk at age three! Jacob Barnett is at the moment youngest physics prodigy in the world, is working on an original theory in physics and could be in line for a Nobel Prize too.
Now that's some motivation. Not every autistic child is a prodigy but every child - autistic or otherwise, has a talent. I just need to explore it in Avani. Am not going to give up ever, and I firmly believe that its only a matter of time before my girl surprises me with what she has.
Meanwhile, we have also started ABA therapy for Avani in a new learning center called BMI or Behavior Momentum India. She is going to BMI five days a week for same hours as a toddler would spend in pre school. Hoping to expand her communication skills further, I have trusted BMI to work on my kid. And once again I have put faith in my instinct. Let's see.
 |
| A picture I took in Mumbai at sun rise |
Thanks for sharing all your experiences, its been a tough & insightful journey for sure. Avani is responding to all the care, treatment. You have been keeping lot of patience all this while & yes they are paying off. Am sure new therapy will help in getting communication issues solved. Sometimes I can feel that you tend to loose the faith which is natural but don't let it overpower your thoughts, energy. Everyday will not be a Sunday you know it much better than anyone else. Commenting is always easy but yes it gives me an Inspiration that if we believe to counter the problems no problem is a big problem.
ReplyDeleteAll the very best keep writing keep sharing & yes God is there with you and Avani