Satish Soni and Dr Rakhee Singh
Age of parents:
Age: 8 years old.
Is this your only child?
Mom: An older son, studying at Wits.
Dad: I have another son, 22 years, he has definitely lost much personal and financial attention from me. Time, energy and finances that could have been spent on My Big Boy have been diverted to dealing with autism (aside from the normal spread of attention that comes with having a second child).We have been blessed that Son Number 1 is a fantastic gentleman, and a great role-model. The 2 have a wonderful relationship.
Diagnosis of child:
Autism, a lifelong neurological condition affecting the communication, behaviour, social interactions and the sensory system of the individual. If you have met one person with autism, it really means exactly that. Each individual on the spectrum is very different, with different needs, although some commonalities may exist across the spectrum.
What are the biggest challenges facing your child on a daily basis?
Mom: To the outside world my child looks completely normal, thus his daily challenges faced are not understood by society. Although he is an extremely friendly, lovable child, it is challenging to maintain friendships. We have experienced parents completely isolating and ignoring us once they learnt of his diagnosis. This is really short sighted of them and ultimately their loss. Sensory overload, sudden changes in routine, increased academic demand, complex verbal instructions, being misunderstood by peers and adults, as it’s difficult for him to read social cues and behaviours - these are his daily challenges. As a parent this is hurtful and difficult to comprehend, you often feel powerless to help them through whatever challenge they are experiencing. Society is very cruel and there is an unwillingness to accept neurodivergance or any one that deviates from the “norm”. Society needs to be inclusive, appreciating and celebrating the value in neurodiversity.
Dad: There has been an evolution of challenges. First and foremost, Mehul was non-verbal and had a full 8+hour day of therapy and related work at the age of 2.5 years until he re-learnt how to speak and socialize. His progression has been phenomenal! Our current challenge is the abnormal duration of his “working day”, he now spends too many hours cooped up in a car because the only school that accepted him is hours away (Joburg traffic!). After school he attends therapy session across town. He still has social issues with bullies (1 in particular) in his peer group. Another of his real challenges is to understand that life cannot be dealt with by imaginary solutions, e.g. We refused to buy him a particular EXPENSIVE toy, so he created his own money and gave it to me to buy the toy; I took him to the shop and allowed him to attempt to buy with the art-money; it didn’t work and he was devastated. We had spent prior weeks discussing a backup-plan, so he picked the alternate affordable toy and allowed me to pay for it. He then thought that the issue was with ‘that’ shop and planned to try his art-money at another shop. We are just waiting for me to earn enough money to be the backup plan again :)
What are the happiest moments you have with your child on a daily basis?
Mom: I have learnt to slow down and celebrate each milestone with my son. It can be so gratifying as you really learn to step back and appreciate even the smallest victories. The highs are incredibly intense and rewarding as you go on this journey with your child. We enjoy the simple things together - having a cup of tea, singing songs, art, and telling stories.
Dad: Every moment spent with him is a wonder! He just radiates positive energy. If I had to choose, it would be the moments that he understands something new about life (a new definition, or simply catches the punchline of a joke) his eyes pop-out with the wonder of it all. Sporadically, he thrills me when he wants to listen to my sax playing. He loves sharing his art-work with anybody and everybody who has 2 minutes to look at it :)
Are you a single parent or married?
Has your special needs child had an effect on your marriage?
Mom: We know and expect that a neurotypical child will change the dynamic in any marriage. Having a special needs child definitely places an unexpected and unprecedented strain on this relationship. To say that this journey is expensive is an understatement. Enormous sacrifices: time, money, luxuries, working as hard as we can. We have invested not only financially but spiritually as well. My son has made phenomenal progress and I really can never put a price tag on that!
Dad: Of course! Any new member in a family will affect a marriage. We have had our ups and downs, round and rounds, but always together.
What has your child taught you about yourself, both positively and negatively?
Mom: I have already learnt more from my child than I could ever teach him. Mehul is the most courageous, incredible person I have ever encountered. Through his journey, he has enabled me to embody every single quality that a mother should be. He is my true inspiration, my purpose and reason for being. I am truly privileged to be HIS mom, I have learnt so much from him, walking hand in hand each day. I have also become an autism advocate and I’m teaching my son how to self advocate. With advocacy comes education and acceptance.
Dad: I learnt that I have the capacity to do anything necessary to support my family. They say that you can’t teach an old dog new tricks, but I have proven that anybody can learn new skills with the correct motivation. My son showed a deep love of music very early on (he was non-verbal so related more to the music than the conversation in Disney movies), so I had to drop my kung-fu training of 7 years and picked up a musical instrument for the first time in 30+ years (the last was a recorder in primary school). persistence and constant feedback from my son/family/friends over the last 5 years has turned me into a passable Jazz saxophonist (well, my neighbours stopped complaining). On the flip side: I always knew that I’m lazy, but have this regular reminder when it’s my turn to get Mehul ready in the mornings! I am a night-owl, and there are just too many things that just ‘must’ be done in the first half of the day that I struggle with.
Are your family and friends supportive?
Mom: Certainly, we are blessed with a small supportive network of family and friends who have embraced Mehul and constantly encourage him in all his endeavours. However, it really is very difficult for anyone to even begin to understand unless they have truly walked in your shoes.
Dad: Yes, they don’t always understand the challenges faced by Mehul, but they are very supportive and loving - not that I can claim to understand the challenges that Mehul faces... I am just more accustomed to helping him deal with them.
Do you take time out, if so what do you do to relax?
Mom:Time out? What’s that? In between working, schooling, therapy, cooking, grocery shopping etc... there isn’t any time to actually relax. I usually join in on the fun activities that my son is doing- art/music and relax by participating with him. Mehul loves exploring nature and traveling. We visit his favourite places (Drakensburg, Durban & Sun City) during the holidays each year. Dad: Yes, I play the saxophone daily (every 5 minutes helps regenerate the soul), run 2-5 times a week, and also try to escape into a book whenever I can.
What has made the biggest difference to your child’s quality of life?
Mom: Being able to communicate & Early intervention. Initially, when he was non verbal we used sign language, Makaton, and PECS ( picture exchange card system). Mehul embarked on a very intensive early intervention program at the Centre for Autism Research & Education (C.A.R.E) centre in 2011, when he was just over 2.5 years old. At C.A.R.E , he worked with a dedicated team of professionals which included a sensory integration,speech & occupational therapist and special needs educator. The centre is specifically adapted to meet the needs of the autistic learner. Mehul had significant dietary adaptations, nutritional supplementation, an individualized education plan & equine therapy. Over the past few years, due to consistent dedicated efforts from Mehul & his entire team, he has made incredible strides. He has learnt self modulation techniques which enable him to navigate through daily challenges that he may encounter.
Dad: My wife’s persistence. She continues to research autism and related issues (DIET!) and is always working towards improving Mehul’s life skills. She found the Centre for Autism Research and Education and we have built a phenomenal relationship with the directors (Rozanna and Krishen), teachers, and therapists who have together opened the windows into Mehul’s soul.
What is your dream for your child?
Mom: The world is his oyster. I pray that he will continue to reach for the stars as he has been. Optimizing his autism will enable him to lead a fulfilled life. Already, Mehul is an amazing, adorable, talkative, confident, friendly, happy 8 year old with a zest for life. He is in grade 2, and is passionate about art. He creates 3D models and loves to draw and paint. One of his recent drawings won an American Art Competition. His artwork will be featured in a textbook written by an Professor specializing in Autism. The textbook is titled: ‘Educating Students with Autism Spectrum Disorders. Partnering with families for positive outcomes’. We are so proud of you Mehul! May you continue to sparkle on this amazing autism journey!
Dad: I want Mehul to lead a fulfilling life. He has such capacity to love, be loved; add value to society and derive value from society; I want him to achieve his potential. LOL - he does have a potential to be a dictator and needs the nicer and softer life to distract from these tendencies :) He currently dreams of owning a pizzeria and an art studio (but sometimes remembers that he also wants to rule Gotham, or the world!)