“He’s Autistic but please accept him the way he is”
Parent Advocate, Maya Pandt
Maya Pandt and son, Jurgen
Maya Pandt lives with her son, Jurgen, on the Dutch Caribbean island of St. Eustatius. Here, as in so many other places, disability is a taboo subject. People do not like talking about it, many do not understand it and it makes others feel uncomfortable. Jurgen is her only child and he is autistic.
On this small island of about 3,500 people with limited resources in that field, it was at first very difficult to get a diagnosis. Jurgen had stopped speaking at the age of 13 months and could not stand loud noises. She could not comprehend his melt-downs and no one was able to offer solutions. While reading an article one day about a child who displayed similar behaviour, the thought occurred to her that Jurgen may be autistic. She found a mock-test online, and the results indicated he may indeed be autistic but that was still just a suspicion. An Expertise Center was eventually opened on the island in 2011. Jurgen was tested and at 7 years old, formally diagnosed with PDD NOS which falls under the autism umbrella. Equipped with that knowledge, Maya was then able to seek the help he needed. Jurgen is now 14, attends mainstream school, is fully vocal, loves to draw, is intrigued with the universe, the stars and the night sky and absolutely loves to play video games with his friends.
Misconceptions about autism pervade many societies and because it is not understood, families live with the stress that lack of knowledge and sensitivity brings. Jurgen’s meltdowns were usually at home but he was bullied at daycare and first 2 years of elementary school, the other children would hurt him and being non-verbal at that time, he could not tell his parents what happened. The society tries to see a look and not understand it has nothing to do with looks, but neurological “they say he doesn’t look autistic,” Maya expressed with dismay, but she knows her son is full of potential.
Thankfully, teachers on the island are now more aware, and some are being trained to work with special needs children; other kids on the island have since then being diagnosed with autism and, like Jurgen, attend mainstream schools. Jurgen has a high IQ, is able to learn at his own pace and some of the previous frustrations Maya felt has dissipated. But there still remains a lot of work to be done on St. Eustatius.
Maya believes that even now, parents of children with special needs are not as vocal as they should be. She wants people in the community to understand that because a child sees, hears and sometimes behave differently to others, they are still intelligent and have a lot to offer to society. Maya’s need for community awareness of autism has led to the creation of the JTL Autism Foundation (named after her son, Jurgen Timothy Leon) in March 2021. The Foundation will provide much-needed support to parents and children on the spectrum. They will conduct workshops, partner with nutritionists, speech, occupational and motor skills therapists and other professionals to educate, diagnose and treat people with autism on St. Eustatius.
Maya and the Foundation’s board members hope acceptance and non-judgmental attitudes towards people with disabilities will result from the programs they will offer. Maya says very often, she is moved to be transparent at the beginning of an interaction between Jurgen and others. She will let them know at the onset that her son has autism. He also does the same, at times. If not, people’s attitude towards him may not be favourable. Someone may say something to him and expect an immediate response which they many not receive, as he has to first process the question or comment before attempting an answer. They may then interpret his reaction or lack thereof as being rude or otherwise. Jurgen once asked her, “Mom, will people like me more if I was not autistic?” This question broke her heart!
Maya’s advice to parents is to embrace their child, shower them with love and nurture them to become the best that they can be, regardless of their abilities. Jurgen brings immense joy into the home and he has an incredible sense of humour which helps them get through tough moments. He’s always joking around with his mom and they maintain a great relationship. She encourages him to talk to her about anything so he comes to her with his every thought. She is very patient and has implemented structure and a daily routine into the household which helps him to get through his day. Maya is a divorcee and raising Jurgen as a single parent is challenging, but he lights up a room and infuses it with his genuine love of the simple things in life. What others may interpret as mental delay is to her, great intelligence, as she understands that her son sees things from a different perspective, after all, he was the class valedictorian in his elementary school and did a marvelous job!
Maya and the Board Members of the JTL Autism Foundation are committed to using it as a platform to educate, sensitize and change perceptions, ultimately creating a more inclusive and accepting St. Eustatius for people with disabilities.