What is the role of a dedicated coach assigned to a sports person?
- To enable the sports person to enhance his or her performance
- To facilitate him/her to reach and exceed his or her potential.
- To empower the sports person to achieve his or her goals objectively.
The coach becomes the player’s ultimate guide. The coach works hard to apply the best techniques, methodology, observes the response of the player’s body, makes appropriate changes to come up with a customized regime. First and foremost they work in sync and the coach becomes one with the player.
I draw a similar relationship between a caregiver and a special needs child. Being a mother/father of the child you are already one with your child. You need to figure out all available options, study their feasibility, apply, identify his/her response, and modify accordingly to obtain the best/desired results. All this should be enjoyed and done with passion and not with self pity and drudgery. Life becomes beautiful for you and your child. However, there are two primary differences between a coach and a special needs parent:
- A coach is highly skilled, confident and experienced in his field where as a special needs parent is a novice, shaken but hopeful in his/her role of a dedicated caregiver
- A coach follows a strict discipline, difficult routines and strenuous workouts where as a caregiver uses loads and loads of love, affection, softness, gentleness, subtlety, sensitivity and extreme flexibility to achieve goals.
In the following paragraphs, I discuss about the various therapies that we have tried for my daughter, Peu who suffers from a rare genetic disorder, CDKL5 and my transformation to being her dedicated caregiver.
From the age of six months until she was two years old, we applied conventional physiotherapy and neuro development therapy on Peu taking help from one of the best physiotherapist of Bangalore. Unfortunately, most of the sessions turned into crying sessions and many a times ended with spasms and a full blown seizure. Our concerned physiotherapist recommended to stop physiotherapy until her seizures are under control and showed us some techniques we could apply on Peu, at home. We also did occupational therapy and speech therapy at home as taught by therapists. However Peu did not respond to any of these therapies. During this time, we also tried Vojta ( pronounced as Voyta) therapy without any major results.
When Peu was 3 years old, we tried Craniosacral therapy and Ayurvedic Acupressure using magnets practiced by Sangeetha Bhandari, in Bangalore. She never promised anything but requested us to try Craniosacral therapy for at least three months. Craniosacral therapy is a touch based therapy and Peu never resisted her touch and remained calm during the sessions. After three and a half months, for the first time, her seizures stopped for a month. At that time, we did not have her diagnosis and became very hopeful. We could continue with Craniosacral therapy for six months and then stopped as we moved out of Bangalore. However we still apply acupressure using magnets with guidance from Sangeetha mam.
A parent introduced me to ABM and the book ‘Kids Beyond Limits’ by Anat Baniel. This book brought a major transformation in my thought process. The nine essentials discussed in this book were an eyeopener for me. Each time I read this book, I discover something new that could be applied effortlessly on Peu in my daily interaction with her.
Other books I read during that time, which were very informative are, Little Bear Sees and Son, Rise: The Miracle Continues. These books are written by special needs parents who have shared their valuable experiences. For a brief period of two months, we also tried a protocol called CD protocol, found by a special needs parent. which has shown promising results to cure regressive autism for several children worldwide. It did not help Peu and hence we stopped it.
Cyndi Manes, an ABM therapist worked on Peu and we saw immediate results in terms of responsiveness and attentiveness. During this time, her seizures were in control and we observed developmental progress in Peu. Cyndi was very kind to show me certain moves that we could do at home with Peu. During the ABM sessions, Peu showed no resistance, cooperated with Cyndi and she seemed to love the lessons. The only disadvantage was that Peu detested the noise of the busy therapy center. Despite the noise, she showed progress with ABM performed by Cyndi.
Besides, Cyndi, Carole Keefe and Sylvia Shordike provided a few ABM sessions to Peu. Both of them gave positive feedback about her response to ABM.
Meanwhile we also tried MNRI for Peu but were perplexed by the rigid techniques and decided not to continue it. We were told that it would take at least six months to see any response, but we tried it only for a month.
We have seen innumerable success stories of special needs children with miraculous achievements amidst challenges. There is one common factor in most of these success stories – a parent was closely involved in advancing the child’s potential and during the process the dedicated parent discovered a unique methodology that worked wonders for his/her child. Such parents have shared their unique methodology and continue to do the noble work of working with parents from all around the world and teaching them.
We were fortunate to have learned from two such parents and received an insight into their unique methodology:
1>Movement Lesson by Michelle Turner from Arizona, USA. Her videos are detailed and extremely useful. Visiting her in Phoenix for a 5 day session helped us understand the science behind her concepts. Her lessons with Peu and me gave clarity to her unique yet simple methodology. Her statement: ‘A brain always wants to learn irrespective of the diagnosis’ inspires us to work harder.
2>Snowdrop Program by Andrew Brereton from UK. He provides a home based program specific to each child, to be performed preferably by the child’s parents. In Andrew’s words, ‘ It is a program of developmental activities designed to stimulate the plasticity of the brain, and to direct that plasticity down the developmental pathway which the child needs to travel’. Snowdrop was introduced to me by Poorna Sehgal, a dear friend and dedicated to her dear son Dev.
Peu is very sensitive to loud noise and voice and it acts as a trigger for her seizures. It is a challenge to take her to therapy centers without exposing her to noise. We realized that doing it ourselves at home, not at a specific time, but continuously as and when we are with her, brings out the best results. Movement Lesson videos and the Snowdrop Program, both formed excellent aids for me and matched with my concept of therapy for Peu.
Besides, we expose her to a specific chanting mantras (Hindu and Buddhist) music which could calm her nervous system in the long run. We practice a couple of Yoga Mudras using her fingers, again with the aim to calm her nervous system. These have been advised by highly learned and experienced people.
When Peu was 4 years old, I quit my job and took complete charge of Peu in all respects and realized how communicative she was. I matured into a very sensitive person and discovered that my full attention to her could impact her development in several ways. It was a turning point in my life. I quit my professional career to build a new career as a ‘coach‘ for Peu. It was far more rewarding and satisfying. I use my brains and energy to facilitate development in my own child instead of working for some external company.
Today, we have numerous therapies available, physiotherapy, occupational therapy, intensive therapy, hippo therapy, neuro-development therapy, craniosacral therapy, music therapy, speech therapy, aqua therapy, .ABA, MNRI, ABM, Son Rise program,..the list is endless. My learning so far has been that as a caregiver, I should:
- Develop the sensitivity to realize which therapy works best for my child and based on my child’s response develop a customized therapy program.
- Educate myself, learn and seek help from experts constantly.
- Ensure that there is no pain but play during therapy and there is minimal resistance but some participation from my child during therapy.
- Define what success means for my child and aim to achieve it with lot of flexibility.
- Practice therapy not as a rigid set of exercises at a specific time but as a smooth and continuous process integrated with my interaction with her all through out the day.
We still have a long long way to go before claiming success for Peu but her subtle progress and her spirit to keep trying motivates us incessantly.
I look forward to your inputs, advice, thoughts and feedback.