This powerful story is from a mum who is raising a child with Autism. She is one out of many who has devoted her time to encourage her son to be the best version of himself.
My name is Pamela Henry. I’m originally from the beautiful Caribbean island of Grenada but currently based in the US. So you can imagine a Caribbean accent while you read this. I’m 45 and have two sons – One is 18 and other 35. When my last born son was 5 months old I realized all was not entirely well. I can’t really describe but he didn’t seem to be developing at the same pace that other babies do. So at 15 months, I decided it was time to get a professional’s opinion and that was when I found out. Have you ever felt like the world was spinning so fast you can hear a ringing sound in your ears?
I sat there in the doctor’s cold office trying to digest the news. He was barely 2 years and life was already handing him sour lemons. Nevertheless, I was determined not to let life happen to my son. At 15 months old my son was diagnosed with Autism Spectrum Disorder (aka Autism). To be honest, once I found out I was a bit relieved because I knew what exactly was going on so I could help him.
I’ve always been a doer so I set to work determined to beat this. I think I read every book about autism that I could find, at one point I felt that I was teaching his teachers. I immediately stopped his vaccination because I had read some interesting research that showed correlation between autism and vaccines. I cannot stress enough the benefit of discovering things out for yourself. Sure your doctor has the knowledge and experience but you have the best interests of your son at heart and you should be aware of your options.
It was really tough at first because the Autism would take so many forms and I’d find myself back to square one – where I didn’t know how to deal with my son. I was constantly learning new ways to interact with him. Was it frustrating? At times. But I took comfort in knowing I am helping my son grow into the best person he could possibly be.
I do realize that for autistic children one of the methods of coping is medication but I actually chose not to give my son any medicine. I know I sound crazy but I’ve always been wary of medication and it’s effects on the human body. Additionally, my grandmother raised me and she used herbs on us all through our childhood. I did some research and the medication that I would be giving him to ‘help’ would ultimately damage his liver and kidneys when he’d be older. The medication offered would be filtered through the liver and kidneys and for a developing child it only means higher chances of kidney and liver disease later on. I also looked at whether the autism really affected his quality of life enough to medicate. I didn’t think so because we looked at about one seizure a month.
Choosing not to medicate didn’t go well with his teachers at school. I’d like to say I received false advice and waning support in every form imaginable. On several occasions when he’d have a seizure at school or on the bus, Child Protective Services would be called. Naturally they found out that he wasn’t on medication and I was accused of neglecting the needs of my son, medically. They threatened to take my son away and put him into foster care but the threat didn’t deter me as I was fully educated of my legal rights when it came to parenting my child. I had to defend myself against the same charge for 6 years.
A lot of people will have an opinion on how to handle negative situations especially illnesses especially when looking from the outside-in. For instance, my son’s paediatrician once encouraged me to put him in a community residence. I have to say that I am glad I ignored him. People can and will tell you what to do but don’t heed advice blindly even if it’s from a health professional. Do your research and make an informed decision.
It’s normal to be afraid of making mistakes but you have your child’s best interests at heart so trust that your motherly instincts will always come in handy. Seeing how far we have come, I’m proud to say that I don’t have any regrets about the choices I made. If I listened to everyone I would not know that my son would be extremely talented in playing the violin. Every time I watch him play in concerts, it gives me comfort to know that he turned out quite fine and that is enough!
For a mother who has just found out that her child is autistic, I would say to her don’t allow society to dictate what normal should be for your child, instead, allow them to create their own normal and celebrate it. If you do, you will find this amazing person waiting to be discovered.
A lot of people ask me how I coped with my son and his condition but I won’t say cope, but I met him where he is. I had expectations for him and I didn’t freak out when they were not met. I celebrated his successes and counseled his failures. I was also patient with him because I know he processes slower than I do. But most of all I love him without conditions. When I look at him now, I don’t see his autism I see a successful boy who has conquered it all.
There is no way to be a perfect mother, but a million ways to be a good one.
~ Pamela Henry.
The World Health Organisation (WHO) found that 800,000 Kenyans suffer from Autism meaning that 1 in 68 people have it. So what is it exactly?Autism is a developmental disability caused by brain abnormalities. Those suffering from it expressed difficulty with social and communication skills. It is often diagnosed within a child’s first three years of life. Studies show that boys are more likely to be affected than girls with a ratio of 4:1. Autism has been around for as far back as 100 years. The name is from a Greek word ‘autos’ meaning self as autistic persons tend to isolate themselves.
Symptoms vary wildly as well as the severity. But as a parent you should be aware of the red flags. They include:
- Overly or under sensitive to sounds, tastes, sights and touch.
- Specially focused interests.
- Little or no eye contact.
- Lack of or delay in spoken language.
- Difficulty following simple instructions.
You may feel like the world is closing in on you but take each day as it comes and rest easy. There are ways to manage. Recent studies have shown that fidget spinner can help your child focus in situations that require attention for relatively long periods of time such as classes.
When choosing an academic institution for them to attend, opt for one with a specialized unit for autistic children and if that is beyond your reach at least find one staffed with a special needs teacher.
Kenya Institute of Special Education found that there are 97 schools in Kenya that have special units for autistic children. Among these schools are a few such as Oshwal Academy Primary School in Westlands, Kasarani Primary School and Abbey International Special Needs School in Nakuru.
Don’t feel defeated just yet, there systems in place to help you and support you and your child. Kenya has a number of organizations that seek to offer that shoulder of comfort for Autistic persons. Autism Society of Kenya (www.autismkenya.org) for one offers services such as:
- diagnosis and assessment
- awareness workshops
A few other organizations include Autism Support Centre (autismcenterkenya.org) and St. Gerald’s Centre for Children with Autism.
For now it may seem that the dark clouds are constantly hovering over you but the sun will shine. Just work towards raising your child to be the best person they can possible be and one day they won’t be able to even find enough words to thank you.
You may also like: Autism : Who can Relate?