Runway to Take off (Special Mothers Odyssey) – Paper Presentation

Hi All,

The below post is related to the Paper presentation made in the Conference / Workshop organised by Vasantham. This particular paper presentation was done by a special parent, hence it is very special to me . I love listening to parents who have gone through the journey during the times where they had limited to no assistance related to the disability and what approach should be taken. They share what is relevant and what matters the most. There is more common sense and compassion on their statements than logic.

Below are the details of the session:

Conference – Workshop cum conference on Best Practices in the rehabilitation of individuals with special needs
Topic – Runway to Take off (Special Mothers Odyssey) – Paper Presentation
Date – 18th March 2023   02:00 PM
Mode of Presentation – Offline Venue – Sengai Meenakshi Mahal, Mogappair, Chennai – 37
Speaker – Lavanya Ashok is a mother of special child “Arpit Ashok” who is 18 years old now. She became a Special Educator after her son’s diagnosis and now helps other children travelling this journey..

Below are the points shared in the presentation:

She introduced herself as a person representing “V -Excel Educational Trust”, but she was more happy to introduce herself as “Mother of Arpit Ashok”

The paper presentation was titled “Runway to Takeoff” to represent how a mother of a special child at ground level took off to become a special educator.

Her son Arpit Ashok is an 18 years old Boy who is diagnosed with Autism Spectrum Disorder and has completed 12th Standard in NIOS. His passion is painting, sports, travelling, photography etc.

In her Journey of all the different stages of child’s development, she considers the early stages (0 to 7 years old) are extremely Crucial as it was challenging in many aspects. 

Her son was diagnosed at 2.5 years age, the only goal that she had in her mind at that time was to make the child ready/prepare for “Mainstream Schooling”, as that was the maturity level she had at that point of time.

To prepare the child for mainstream, she thought from an angle what a child at mainstream school does and started working backwards. She focused on five key areas that should be addressed initially for a child to be placed in mainstream model of education, they are :

1) Daily Routine and Rhythm

2) ADL ( Activities for Daily Living)

3) Behavior Management

4) School Readiness

5) Inclusion

Daily Routine and Rhythm can also termed as Functional Readiness. Routine is extremely important, half the job gets done when you finalize a routine for the child. She terms this as “Practice the Pattern“. Children love to work or be around in a structured environment. Along with her the entire family followed the pattern that made the child comfortable.

She splits Behaviour Management in to two aspects. One is “Behaviour Management for the Parents / Primary Caregiver” , because how we think and act is what will be reciprocated by the child. She has another term for this called PET i.e. Patience, Empathy and Triggering Point.  We have to practice patience, we have to understand the child first, whether it is good or bad, we need to know about child’s triggering point. If we are in control of these three aspects, we would be able to prevent and handle most behavior’s.

Also she mentioned another approach called “Zones of Temperature” to find out the current mood of the Child. (This is similar to the “Zones of Regulation for Emotional and Self Control”). Her son has cards for different colors each indicating the mood in which he is in now i.e. Red indicates that “he is upset”, Yellow indicates “he is anxious”, etc.. These are used whenever an episode of behaviour issue gets triggered. This helps the child to know that what he is communicating with cards is being understood by the parent and he is not just throwing a pointless tantrum. 

Few Behaviors were also triggered due to Sensory. As an ASD child he had many sensory issues. He had Auditory issues, to overcome all that she followed the “Priming” approach. Priming refers to preparing the child for something that is about to happen. Prepare the child on what is the expected Behaviour for a given situation or a place etc. As a parent if you fail to prepare the child, no one can help out with the consequences.

Social communication issues are another major factor, as these children do not like to speak with others. She tried an approach of two E’s i.e. Exposure and Exploration.  The more and more opportunities you create for the child, there is a higher percentage of the child trying out new things with those chances. Without doing anything on these aspects but keep complaining that our child has behavior issues, etc.. is not productive, what we are doing to the child determines what the child will do in return.

Child is always right. Mistakes are always from Parents. The moment we start correcting ourselves, all things will fall in place gradually.

For School Readiness she worked on the below:

1) Early Intervention

2) Understanding the Level of your child – It is extremely important to understand the current level of your child before making decisions. Just because everyone is going to school there is no compulsion for our children to go to school. 

3) Accommodate – Place the child in a setting which will be accommodative to our child. Do not focus on big schools, prestigious schools , ignore your pride factor and choose the school that will accommodate your child.

4) Inclusive School – What my child will gain by going to an inclusive school is something every parent should ask themselves first. If there is absolutely no benefit in an Inclusive school, apart from making the child sit for two to three hours a day and sending back home, kindly do not send your kids to such school. 

5) Periodic Review – Kindly review the decisions you have taken again and again over different periods of time and stages of the child’s development. Your decision making/responsibility/worries does not stop the moment you choose a school, it is a continuous process. As the child grows at every age you have to make sure whatever that is needed for his age according to his present level is being provided by the school setting or not. The school which you considered as the best for your child when he was 4 years old, may not be suitable or a right fit when he turns 8 years old. The school infrastructure, support staff, etc. may not be equipped enough to handle after a specified age. By continuing your child in such a place, will not yield any progress or achievement for your child.

Best Practices which she learned in the Journey are:

Embrace the differences. When God has already given wings for the child to fly, why are we forcing them to swim. 

Prepare your child. 

Capitalize on their challenges. Focus on how to strengthen their challenges.

There is no shortcut to this Journey. Everyone has to go through the process. 

She displayed a picture drawn by Arpit for the paper presentation which looked very good. Also she played a video footage which is a collage of pics taken during different stages of life, all of it looked wonderful.

Only when we make mindful decisions, we can find the meaning and purpose behind the life.

Even though she is a special educator, she did not chose to present a paper from academic perspective, she wanted to present a paper showing the results that can be achieved if one followed the principles laid down in handling a children with special needs. Her presentation represented the working model of concepts discussed by various speakers.

Judging Panels asked couple of questions:

1) What were the specific challenges you faced with your child that was overcome well.

She mentioned about sensory challenges like Auditory and Tactile, where he does not like to wear a shirt with collars etc. He does not like to visit functions. She overcome them by following Priming approach, where she prepared the child with the sequence of events that would happen along with the time duration like..

a) We shall be travelling to the venue during which you can wear a headphone listening to Music

b) We need to wait for few minutes, where the parents will go to the stage to congratulate or provide the Gift

c) After which, we will go to Dining hall where we shall eat and then leave for home.

She also mentioned that child’s grandfather completed 80 years recently where they had an event/ceremony for celebration, which was fully planned by the Child.

All this is achievable, but does not happen in a day or two, it took 18 years for her. If your child has a severe milestone delay of 2 years, your focus is not to bridge the gap at the earliest, you should focus on moving to the next step that is practically possible. 

She debunks the belief that this is an disorder that has no cure. Improvement and progress will always be there on the child. It is completely in our hands whether the child will have a progression or a regression from his present level.

My Personal Feedback:

It is always a pleasure and privilege to listen to a special parent who has done the journey. The clarity on thoughts, life goals, objectives, priorities etc. they have are so practical and totally independent from social pressure or stigma. They just stood up tall at the challenges life has thrown at them, nothing can stop them any further.

Her speech was very precise and had the clarity which any special parent wanted to hear. She clearly stood as an example, for what can be achieved when a parent does right things to the child at right time.

The point she made about the school is something i applaud, i.e. “Just because every other child is being sent to school, you need not send your child to school”. There is a lot of conviction and sensibility behind that statement. I personally see so many parents making their and the child’s life a misery by opting for a school just to fit in to the social expectation.

Also another statement was about accommodation and inclusion, where she mentioned that “If a school is not accommodative to the present condition of the child and the school is not going to provide anything productive for the child, no point in sending your child to such a school” . This again I could relate to, as most parents are falling in to the feet’s of premier schools to offer admission to the child so that they can now fit in to the social status, ignoring the child’s needs.

Wish more younger parents of children with special needs listen to Lavanya Ashok.

Regards,

Saranya and Karthikeyan