When Nina and Vivian had their second second son in 2017, they were overjoyed.
‘When Bobby was born, we were thrilled as he completed our family,’ recalls Vivian, a health care professional. The couple were also overjoyed as the new baby was showing signs of being brilliant early on. ‘His milestones were early– he was walking at eight months, giving us high fives and responding with smiles as an infant.’
However, by the age of one, he started displaying symptoms of sadness and the alert parents consulted a child psychologist who evaluated him. ‘My son completed all the tests, and the doctor reassured us that this was just a phase,’ recounts Vivian.
However, Bobby showed signs of speech delay when he started play school at the age of two and half years. He also was not maintaining eye contact.
Eventually at the age of three, the child was diagnosed with mild ASD.
Psychologists point out that early intervention is the key to reversal of symptoms of ASD. In Bobby’s case precious time was lost. Also, the Covid-19 pandemic was declared at around that time so there was an additional delay in getting a proper diagnosis.
Dealing with an autistic child
‘As parents we were confused. I had an older son to take care of and I often went through the guilt of examining myself, if I had done something wrong due to which my child was diagnosed with ASD.
‘I went through depression and was out of sorts with my other relationships with friends and extended family. Often, I would go blank. We did not take our annual holiday back home to India, or socially meet friends as our attention was focused on Bobby,’ recounts Nina.
But together as a team, the couple decided they had to work hard to change the situation. They began by sending their son to an Occupational Therapy class close by; but that intimidated him. Sensing his fear, the parents searched for other alternatives to improve Bobby’s cognitive abilities.
At age three, Bobby got admission to a regular school in Sharjah and had a shadow teacher working on him individually. Occupational therapy, speech therapy, and Applied Behavior Analysis (ABA) therapy classes were started for Bobby and the improvement was remarkable.
By then the parents were introduced to the Austin Centre for Rehabilitation and after a few weeks of therapy, Bobby was able to maintain eye contact, and began greeting his parents with a good morning as he left for school.
The couples’ advice to other parents in a similar situation is very precise. ‘Be alert and vigilant around your newborn child and watch closely for all the right milestones.
‘If you have any doubt, seek medical advice and second opinions. Early intervention with ABA and a host of other therapies can work wonders in minimizing the symptoms. In the case of kids on the mild spectrum, there is an almost complete reversal. Therefore, waste no time,’ cautions Vivian.
Prader Willi Syndrome
For Audrey, mother of 15-year-old Indian expatriate Nicholas, suffering from Prader Willi Syndrome, acceptance, and rearranging of routine around her son’s requirements has been the best way to cope with his condition.
‘Nick was diagnosed with Prader Willi Syndrome on day three of his birth,’ recalls Audrey. ‘He was born with very poor muscle tone and it came as a big shocker to us.
‘However, we were lucky that one of the doctors assisting after birth happened to be a paediatric geneticist, who was able to conduct tests and confirm the diagnosis.’
Prader-Willis syndrome (PWS) is a rare genetic condition that affects a child’s metabolism and causes changes to the body and behaviour. The child is born with low muscle tone.
Although there are no definite indications of why ASD is on the rise, it is attributed to genetic conditions. However, some studies have shown that nutrition taken by a would-be mother is very important. Women need to include selenium, iron and zinc in their diet and prevent any deficiency in these micronutrients for best development of the foetus after they conceive.
Be informed and cautious about preventing certain illnesses or taking medications while pregnant.
After a child is born, be vigilant and look for red flags early on. Any developmental delays in any of the cognitive milestones are redflags that need to be immediately investigated. Do not hesitate to consult an expert if any developmental delays are detected.
Any regression needs to be taken seriously. For instance, if a parent observes that the infant who could gurgle or attempt talking in gibberish syllables has stopped doing so, or the child who was able to sit is unable to, or has forgotten some motor coordination activities which he could do earlier, consult an expert.
Parents must accept and not be in a state of denial. If they see some behavioral changes in the infant that is unusual, go in for an assessment instead of adopting a ‘wait and see’ approach that results in valuable loss of time. early diagnosis can help immensely in treating several conditions.
Early intervention before the age of two, holds the key to progress that is seen in some children on ASD. Children regain eye contact, cognitive and social skills with Applied Behavioral Therapy, cognitive, occupational and speech therapy. Children with mild symptoms have been found to come out of ASD with timely intervention. Make sure to get therapies from only qualified professionals and follow the same strategies at home.
Although PWS does not fall under ASD, many children are characterized with social difficulties that lie on the ASD continuum. Certain gene abnormalities lie within the genetic region that are also thought to be associated with ASD, according to Prader-Willis.com.
Within a few days of the diagnosis, Audrey and her husband researched and read everything about the condition. They knew that they would have to change the routine of their life to suit the requirements of their son.
Audrey recalls: ‘It was very challenging, but we were determined. Initially, from the age of six months until he was two and half years, I sent my son to my mother in Goa, India, where underwent good physical and occupational therapy.
‘It was a tough decision, but I was determined to get the best possible treatment for my son. I was working, I had an older daughter, plus therapy in India was affordable. I made it a point to regularly travel to India.’
Fortunately for her, Nicholas’ muscle tone improved rapidly, and he was able to do all physical activities like other children.
Nick returned to Dubai when he was almost three and began treatment for his cognitive delays and required therapy for that.
He was placed in a regular school when he was eight years old, and when he was ten years old, was enrolled in a Special Needs School.
Occupational therapy and art as therapy have greatly helped Nick, says Audrey.
The biggest challenge for children with Prader-Willis is their rapid weight gain. ‘Children with this syndrome can only have 50 per cent of calories compared to other children their age.
‘My son can put on 10-12 kg weight very easily as his appetite is the biggest challenge. I worked on severely restricting his calories, even while making sure he got a few treats.
‘My daughter to this day, never eats anything prohibited for him in front of him. We make desserts only once or twice a year. No restaurant visits for us; we all make sure to have meals at home. That is a big adjustment we have made as a family. My son gets a small portion of breakfast, a snack, lunch, another snack and a small dinner. ‘I make sure that no matter what, my son’s diet has nutrition and portion control. It is an everyday battle,’ says Audrey.
* Names of parents and children changed to protect privacy
