By Lakhram Bhagirat
It is my belief that parents of children with special needs live in their own worlds. They create this space where imperfections are embraced as the new normal and they believe in things we ‘normal’ people cannot see as yet. Their eyes are opened to a world where we dare not venture but one where they happily dwell.
That model world has been all Yonette Collins has known for the past 19 years. Like every first-time mother, she had envisioned a certain path which her child would tread, but when she was told his path would be more unique than the one she envisioned, she did not know how to accept it. She felt that her world had shifted into the unknown and she started to panic at the level of uncertainty.
However, Yonette knew that the faster she accepted the reality, the faster her firstborn could start adjusting to the challenges in his life as she could be there to catch him every time he fell.
Just about 19 years ago, Yonette gave birth to Shaquille. From the inception, she knew that he was a special boy not because he was her first born, but because he came before his time. He was eager to see what the world had to offer him and for the first year of his life, everything seemed pretty basic to him. He was developing as every infant should and even spoke three very clear words among the constant babble. He could boast about calling for dada and identifying the doggies as well as expressing his love for everything cars.
However, as Shaquille grew, instead of developing more, he became distant. He stopped talking completely. He no longer looked at his momma when she spoke to him. He stopped responding to her calls and this broke her heart. She knew something was amiss, but could never put her finger on it.
On a visit overseas, a family friend who had worked with autistic children told Yonette that Shaquille was exhibiting signs of someone who was on the Autism Spectrum and that she should get him checked out. Having never heard of Autism Spectrum Disorder (ASD), Yonette was puzzled so she collected all the reading materials about ASD from the friend and upon her return home to Guyana, she started reading and researching.
“I used to look at him and he used to portray those signs in the book. He doesn’t make eye contact, he won’t respond, he had repetitive behaviour and he was fascinated with cars and he would line them up and play and so on.”
However, at that time she could not find anyone in Guyana to diagnose Shaquille so she kept observing him and trying to address the needs he had. He was doing everything in reverse and developing far later than those his age. He went to nursery school still not being able to use the washroom by himself. His communication issues had intensified with him just speaking two words at a time. His phrases were to the point, identifying what he needed and that was all.
Children with an ASD that affects their communication ability are often taught sign language to be able to better communicate what they are feeling, but Yonette said she knew that it would be a last resort for Shaquille to learn sign language. She wanted him to be verbal and she pushed him to talk and express what he wanted. Now she can report that his phrases have turned into sentences with room for improvement.
After a few years, Shaquille and his family would move to the island of Jamaica where they lived for about three years. It was in Jamaica where Shaquille was officially diagnosed with mild to moderate autism, a diagnosis that brought no shock but relief to Yonette because she knew that her special boy had very special needs.
He was about seven when he was diagnosed and she immediately accepted what was offered and began carving a path for her son to live the best version of himself. It is a path with numerous bumps, but a path where every little accomplishment is hailed as the greatest success. In Jamaica, Shaquille attended a school that catered for his needs and learning abilities and was rapidly progressing. His communication issues were beginning to be addressed, he was learning by using pictures and his handwriting was IMPECCABLE.
When the family returned home and got settled in Berbice, Shaquille had a big adjustment to make. Yonette got him enrolled in the New Amsterdam Special School in order to cater to his needs.
“He is very choosy about who he gets close to him. When he was in school, I would know who is his friend. Because I was a regular visitor at the school, he would be all smiles and bring his friend to introduce them to me. Despite his communication issues I would know that this is his friend because he would be very happy. I would be happy because I would know that he is communicating with that person,” she said.
Because of his ASD, Shaquille dislikes being touched by people who he does not know and he has severe Obsessive Compulsive Disorder (OCD). His OCD is the reason he was forced to drop out of school. By the time he was about 16, the New Amsterdam Special School had grown from what it was when he first started and it meant more traffic as well as more people using the washrooms. Shaquille, because of his OCD, would not use the washroom because it would be wet or messy so after a while, he developed an infection that resulted in him being in immense pain. He was on medication for some two months and refused to go back to school.
Shaquille is a whiz when it comes to technology. He can navigate his way on a computer and enjoys gaming. Yonette allows him to hone his skills by exposing him to as many activities that interest him. He is still OCD and noise still affects him, but he is slowly overcoming those challenges.
She feels that there is more to be done in the field of autism awareness and screening. It is not the end of the road when your child is diagnosed with an ASD, according to Yonette. She said the faster we accept that this is who our child is, the faster we will be able to get them the help they need to fully develop.
“There will a lot of challenges because it will be all different. Acceptance is key. Children with autism teach you patience and you have to treat them with love. This is a special child with special needs. The child comes first and then the needs come after. You have to treat the child as a normal child and then treat the special need, because most times, we look at the needs and forget that the child is normal in every other way.”
You always have to be there for your child no matter what. An autistic child requires special levels of attention and you have to dedicate your time to them for all your life, because when they choose you, they really choose you for life. Every child on the spectrum is different and as they progress, their needs change and behaviours evolve.
You have to be there to love them unconditionally and support everything they do. It is a lifelong commitment and one you must be prepared to execute once you decide to have a child. For Yonette, Shaquille and their family, the victories, no matter how small in the eyes of the world, are magnificent to them. There are constant high fives in their family to build Shaquille’s self-esteem and boost him up so that he can feel accomplished.