Journey of the Rodrigues Family
This is our Journey, The Rodrigues Family Comprising of our Children Joanne and Brydan and we parents Janice and Bryne.
Our journey began way back in 2009 when we were based in UAE. Joanne was diagnosed with developmental delay when she was about a year and half. It was very little did we know about Autism at that juncture due to lack of awareness. We were already expecting our 2nd Child Brydan. The second blow was when Brydan too was detected to be on the spectrum – our lives turned upside down.
Like every parent, we too had a lot of dreams and aspirations in our minds – but then all that came to a standstill. We too went through a Denial phase with questions like..WHY ME etc..
We commenced with therapies for Joanne in UAE but there was just marginal progress. At that point of time the therapist did not empower us parents by providing us with the relevant information or the tools to work with Joanne. Basically we were losing on crucial time and needed to find an alternative.
Joanne and Brydan are poles a part, their sensory needs were extremely different. There were times when Brydan would go in a meltdown and we both together couldn’t control him (due to ignorance we would even feel as if there is a spirit reigning in him).
Thereafter upon our visit to Mumbai – India, we did our ground work on the schools and interventions available in Mumbai for Joanne and Brydan. We took a crucial life changing decision of moving back permanently to Mumbai in the year 2013 to look at the probable brighter side.
We embarked on our new journey from a scratch and started our own business of advertising with a focus that we needed to give more time to our kids as compared to the financial aspect. Bryne even works at odd night hours so that he could make time for the kids during the day. We did go through a struggling phase along with financial crunches. However all the sacrifice being done at the peak of our careers should bear some fruits. Later after a couple of years Janice too started working remotely from home. Her ex-employers from UAE offered her an opportunity knowing well about her dedication and commitment to work. Hence she was given a free hand on her work timing. She would plan timing with kids and work in a great way so we could give our kids the best time. This was also serving as her “Me time”. She loves her work.
We basically plan our activities a day in advance as generally kids on the spectrum prefer a predictable routine. We do a lot of brain storming on various strategies to work around with them. We do not have any gender biasness in our family, we multitask whether its kitchen or office work.
We wish to mention that many therapists, teachers as well as parent professionals have been an integral part of our journey who have empowered us. We have a great emotional support from our Extended Family.
We are now more known as The Rodrigues family. We are proud to state that people know us as parents of Joanne and Brydan and not vice versa. We have learnt a lot about the value of patience, understanding and to let go of things at times from our kids
We have created various Episodes on our Youtube Channel Autism and Beyond – A Positive journey of J & B https://youtube.com/channel/UCVBs2GDz5hJFa19KdIbWuAQ. It’s via our Episodes we try to connect with parents to spread a message that Nothing is Impossible with our kids. SEE THE ABLE NOT THE LABEL.
We require a lot of positivity, consistency, perseverance and dedication with our kids and wonders do happen. Every child in the Autism spectrum is different as the spectrum is Vast.
We need to identify the abilities of our kids and nurture it further and not compare with achievements of other Children etc.
We the Rodrigues family believe that role modeling is very important for our children. Activities done together as a family is more productive and better learning with good results as against typical desktop learning.
Well with regards to the achievements of Joanne and Brydan.
1. Joanne and Brydan are both in the Guinness Book of World Records (2019) for Skating.
2. Joanne and Brydan are also Deep Sea Swimmers.
3. Joanne and Brydan are a part of Special Olympics Bharat.
4. Joanne is a recipient of Kanya Award from Gov’t of Award 2022
5. Joanne & Brydan are recipients of Global Excellence Award 2022
6. Joanne has secured 1st Position twice in consecutive years (2021 & 2022) in an Online Live Cooking Competition Pan India in the Teen Category.
7. Joanne & Brydan are recipients of Super International Kids Awards 2022
8. Joanne & Brydan are recipients of Asia Pacific Records 2022 for Road Relay Skating on the occasion of Azaadi Ka Amrit Mahotsav.
9. Both Joanne and Brydan qualified the State Level Skating Championship 2022 by receiving 2 Gold and 2 Bronze Medals respectively in a short race and a long race category. They have now qualified for the Finals.
Yes, we have the above achievements – which have come in with a lot hard work and struggles. We had initially introduced swimming and skating for both Joanne and Brydan with a focus to provide a constructive way to utilize their excessive energy which is a common trait in kids on the Autism spectrum. We had a tough time with Brydan in regard to swimming, which was back in 2014. He used to cry for the complete session, hide his swim suits etc – which went on for about a year. Nevertheless, we too didn’t give up and gradually Brydan became passionate for swimming. He now loves the pool and sea swimming activities. As mentioned earlier, we role model for our kids – hence we too learnt swimming at the age of 40 years.
Our on-going journey is steep with a lot of struggles and challenges, however we need to be positive as there are good times as well as not so good times.
“Just because our kids are achievers, doesn’t make everything easy. We go through and understand the pains of every day of every parent.
It’s difficult to explain to the children when things will be normal and safe enough to venture outdoors. When will schools reopen? When will academics regularize? The lockdowns don’t seem to end! Social interactions have become minimal. Plus, there’s a lot of negativity about the pandemic which affects people.
All this anxiety leads to aggressions and meltdowns in the children. When the children get into aggressive meltdowns, it is tough to explain certain situations, which they cannot verbally comprehend.
Also, the pandemic put us in an extreme financial crisis. We are in a dilemma about the very existence of our business. We are into Outdoor Advertising business With malls closed, it’s been a very, very gloomy situation. It still continues to be. Maintaining mental, emotional and financial stability in the new normal is a daily challenge.”
Well with regard to ourselves, we as a family love lighter moments at home with a lot of old country music. We parents make time for ourselves with Yoga, Exercise and often turn to Online content for some lighter moments especially after kids go to sleep. This “ME time” for oneself is extremely important to reenergize and rejuvenate for the daily battles. Here we will like to mention that parents of special kids need to take care of their health as our kids need us alongside them for a longer time.
At times we feel that we are better actors than Amitabh Bacchan or Shahrukh Khan as our life is full of acting moments without any Lights Camera Action. This is basically since children often pick up vibes from parents. Hence, we try to keep a happy pleasant environment despite the day would have been extremely stressful.
A small message from the Rodrigues family : We need to share our journey and experiences which give Hope to all. Well we have also taken a lot of inspiration with senior parents with kids on the spectrum. Early acceptance is the key, our kids are different. They think in a very different way and perceive things differently. Kids struggle with various sensory needs and hence it becomes difficult for them to regulate themselves. Hence, it is always better that we try and understand them by entering their world rather than forcing them into our world. This will make our life much easier and full of happiness. Please expose our kids to society, we need to practice advocacy on their behalf. Till we speak no one will listen nor will they be able to understand our kids. So we all need to create an inclusive environment for our kids.
Please also follow us on our Instagram @joannebrydan. The intention to move to Instagram was primarily to connect with the next younger generation and try to make them more aware about autism and inclusion etc. This new generation will eventually be the citizens who will live alongside with our children to form an inclusive community / society.
Lastly stay Safe and Stay Blessed.
Merry Christmas from the RODRIGUES FAMILY
The artwork for the ChangemakerSaathi story of Janice and Bryne Rodrigues is done by our supertalented CreativeSaathi associate Ansh Batra.