Children with autism are not less, they are somebody!

In that photo, I am proud of my son Kyle and where we are. We made it to 17! That was on his birthday on March 17. I want to show off to the world that he has autism but he’s also a person – and he’s mine! Kyle was born in 2002, and four years later another autism parent and I started a support group to help other parents, which became the Jamaica Autism Support Association (JASA).

It was rough for me because I didn’t even realise there was a delay. His grandmother was worried he wasn’t speaking and she’d heard something on the radio about getting children assessed. We took him to a speech therapist and Kyle was too busy to even sit down to the assessment.

It took six months to finally get an appointment for assessment. When we received the diagnosis it was very hard to see in black and white the word “severely” in front of “autistic” – that kind of killed me. Eventually I realised I can cry, or go and get the help I need. That grew into me giving help to other parents like me in the same situation.

I needed help as a parent, so now I help others

We are in a better place now. There was a time when he was so busy you couldn’t take your eyes off him. I told myself that my goal was that by the age of 10 I would be able to sit and relax, not having to keep an eye on him 24/7. Now we have surpassed that and he’s somewhat independent. If something is wrong he will come and tell me and he’s helpful and obedient and has a great sense of humour.

Everything he does he tries so hard. He’s doing grade one piano in the next two weeks, he does roller skating and swimming with Special Olympics. He’s very gifted with numbers, where if you give him a date and ask him what day of the week it is in the future or the past then he will tell you – whether it’s 2023 or 1960.

He has a very good memory and whenever I need to remember something I tell him and can rely upon him to remind me! He’s very sociable, funny, kind, considerate and enjoys life.

Facing challenges and making progress together

For parents of children with autism the first challenge is the acceptance of a diagnosis because it can take a while for parents to accept, if they ever accept; and the second is access to services. When Kyle was diagnosed there was a lack of availability of therapists. There are more now, but not in the public sector, and most services are in Kingston so it’s rough for those outside.

Financial constraints can be huge. We encourage all our families to sign up with the Jamaica Council for Persons with Disabilities (JCPD) to access other support. At JASA we try and create an environment where, yes we are all different, but where we have this common bond – our children. When we get together there is no judgement – we understand each other. When we have events that involve the whole family and parents say how they are grateful and that their children are happy, that’s when I really feel the reward.

You learn as a parent to adapt and to see the child for who he or she is – your child. I always say it’s the same journey you imagined but it may not be a straight road – there will be twists and turns and even detours but you will get there. And you appreciate every little thing, every new word, every milestone, no matter how small. You take nothing for granted.

Set and achieve small goals as a family

Our children are individuals with differences but they are not ‘less’ and all we want as parents is for acceptance both of our children and ourselves, and to have a little understanding.

Having been on this journey I always advise parents that this is not the end of the world. You have to set small goals. You teach your child to do things. Work with their therapists, teachers, care givers, teach family how to deal with your child so that everyone can be on the same page and work on the same goals. Let those positives be your focus. Gradually you will learn not to sweat the small stuff anymore. As long as our children are safe and happy then that is all that matters.

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UNICEF was speaking to parents at a family support group held by the Jamaica Autism Support Association. Contact JASA for help if you are the parent of a child with autism. For access to additional benefits, register with the Jamaica Council for Persons with Disabilities (JCPD).

Photograph of Jamaica Autism Support Association (JASA) co-founder Kathy Chang.
UNICEF/JAM/Nichola RichardsJamaica Autism Support Association (JASA) co-founder Kathy Chang.

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