Arlene Williams and her son, Jon share a special bond. Apart from being mother and son these two are best friends.
Whether sharing a laugh; going to the movies or learning to paint, Williams and Jon seem more like classmates than parent and child. But what does not escape the attention of anyone meeting the pair is the unconditional love that flows between them.
Jon has Down syndrome. While most people might focus on what Jon cannot do, Williams, who is Jon’s biggest cheerleader prefers to focus on what he can do.
According to Secretary-General of the United Nations, António Guterres, persons with disabilities including those with Down syndrome, are more than persons in need of assistance; they are agents of change who can drive progress across society — and their voices must be heard as we strive to reach the sustainable development goals.
March 21 is World Down Syndrome Day, and in light of this, Williams has made it her mission to bring greater awareness for persons with mental illnesses as well as those with Down syndrome.
Williams said, “Having a child with Down syndrome means that you have to accept and adjust to a “new normal”. This has been my experience for the last 35 years with my son Jon. Developmentally delayed, he took his own sweet time to do most things, but once he had achieved a milestone, there was no going back. By the time Jon had reached adulthood he was largely independent.
He attended the Lady Hochoy Vocational Centre where his specialty was woodwork. He loved listening to music, would talk your ears off if you let him and enjoyed doing the word sleuth. He tried very hard to get a girlfriend and wanted, really wanted to get married. He was a regular at the gym where he did weight training and competed in the power lifting discipline at the Special Olympics. Life was “normal”. Then in August of 2015 Jon experienced a psychotic break. He lost touch with reality and had difficulty controlling his thoughts and emotions. He came under the care of a psychiatrist and was placed on antipsychotic medication. We began a different ‘new normal’.”
Williams admits that watching Jon go through his challenges has taught her a lot about herself.
She said, “If I say it’s hard, hard does not adequately describe what it has been like since August 2015. It is like going to hell and coming back. It is difficult in so many ways because this is my child. It is one thing to have a child with an intellectual disability but quite another thing having a child with an intellectual disability and then mental illness on top of it. It has been challenging in a way that I did not think I could meet any challenge. I have had to be very creative. I have had to maintain my sense of humour. I have had to ask for help, which is something that I don’t always readily do, so I have become very appreciative of the role of community.”
Williams says when things got worse for Jon, where he could not function socially, she was ready to try anything to help him find his way back to himself.
She said, “We did an art and wine evening. The picture which Jon produced took me by surprise, not only because it was better than mine. It was good! I then began looking for an art teacher to work with him. Jon began expressing himself with paint. My focus then, was to give him a space where he could do something that was calming. As he produced more pieces, the idea of an exhibition was born. It would showcase not only his work, but the fact that this was a young man with a disability, working through mental illness who was creating good art. Then came the diagnosis of early onset Alzheimer’s. And Jon continued to paint, sometimes painstakingly so,” she added.
Despite the odds, Jon has been able to excel. The budding painter is having his first solo art exhibition at Horizons Art Gallery in St James. The official launch takes place March 21, (World Down Syndrome Day) from 7 p.m. The exhibition will be open to the public from March 22 and runs until March 25.
Williams noted that as we make steps towards becoming a more inclusive society for persons with disabilities, there is still much more that can be done.
She said, “I view the exhibition as a part of Jon’s legacy. The knowledge of the exhibition even after the pieces are sold, they would have pieces of his work in their home and offices. Jon would have left a legacy because Jon’s life has value, and Jon has Down syndrome. If Jon is battling with mental illness, and his psychosis and early onset Alziehemer’s, Jon’s life has value and he is a valuable member of society, so are so many other people.
“Jon’s exhibition is entitled “DIS is ABILITY. Its purpose is to encourage us to look with new eyes not just at the disabled, but at the mentally ill,” Williams added.
For more information contact the gallery at 6289769.