A mom shares her autism story

Below is a story that a friend generously shared with me about raising her autistic son in the UK. I'm really glad for her because being in the First World has plenty of advantages that parents in Swaziland and the rest of Africa can only dream of, although the personal and societal challenges remain the same . April 2 is World Autism Awareness Day. I shall be sharing more stories on the condition from mothers in my circle for the rest of the month.

I have a 3 years 5 months old son, who was diagnosed with Autistic Spectrum disorder. At birth my son appeared normal and I never thought he had any disability, but as he grew older I started noticing things that weren’t normal. I would breastfeed and talk to him, and he would not give me any eye contact like any other child would do under the same circumstances. Often my son appeared angry, scratching and kicking, especially when distracted from what he was focusing on and he would do things repeatedly and be fixated. He started saying a few words like ‘mama’ and ‘dada’ at 9 months, then lost his speech completely by the time he turned 16 months. I liaised with the GP for advice and was referred to a Speech and Language Therapist. She stated that my son had delayed language development in conjunction with social interaction difficulties. The Speech and Language Therapist also referred my son to different health professionals for further assessment and intervention. He had multi-disciplinary assessments and therapies for almost a year before he was given the autism diagnosis.

As parents we did realise that something was not right about our son and even got to the point of asking the paediatrician if he was autistic. However, because they were still conducting assessments, we had to wait until they had done all the necessary investigations before they could actually diagnose. I dreaded the day when we were to going for the feedback, and when we were told by the Child Development Team that our son was autistic, first I was shocked with the reality, then got scared and emotional as I was wondering if we would be able to meet his special needs as a family. I cried a lot and my husband was with me all the way and always giving me reassurance that we would get through this together and that we need to be strong for our son.

As a family we face the daily challenges that comes with this condition:

·         We have to deal with the frustration and anger that my son goes through when he is unable to communicate or express himself to other people and/ or when he is in an unfamiliar environment or surrounded by strangers.

·         We have to deal with the rejection and the comments we get in some public places such as play areas, schools, church, and restaurants because of my son’s behaviour.

·         The anxiety and fear of the unknown due to the unpredictable behaviour. As a family we try and keep to ourselves as much as we can to avoid the comments about our son’s behaviour from other people.

·         Working less shifts/ hours between us as parents because one of us has to mind our son to try and avoid involving strangers for childcare, therefore putting financial strain on the family.

·         Exhaustion due to everyone trying to work tireless towards supporting my son achieve certain goals and meet his needs, for example, making sure that he goes for all appointments and therapies, and family involvement in recommended therapies.

I am a mother of 2 boys and they love each other. However my younger son’s condition has affected my older boy indirectly. Most of the times he protects his brother and understands that he cannot talk for himself verbally but he doesn’t understand why he behaves the way he does towards him (scratching and kicking him) and still be expected to understand the situation. He also doesn’t understand why we cannot go to public places as a family more often now & why he cannot go to a friend’s party with his brother, even though we try to explain to him at his level of understanding. When my son was 22 months we visited home (Swaziland) from United Kingdom and he was very unsettled and crying the whole journey, not allowing any of our excited family members to touch him when we were home and the whole family ended up not enjoying the holiday and have not visited again since. We have travelled short journeys around Europe but we use our own car, which is familiar to him and/ or a Ferry because we know he loves to see the water and run around within the ship. As far as activities are concerned we ensure that we take him to places where he can jump, climb, run and play independently and freely but still be safe. Lately we have been introduced to a bouncing church, for families of children with special needs and at home we try and provide as many activities as we can to keep him occupied.

My son is unable to communicate verbally at present and tends to get frustrated when he cannot express himself effectively, he doesn’t like being in unfamiliar surroundings and around strangers, he doesn’t like sharing or taking turns and gets fixated to certain routines and objects. He would throw himself on the floor, kick, hit, scratch and even bang his head to show his frustration. I consider my son as a strong and intelligent boy, he is very good at solving puzzles, technology such as playing games independently on the computer, iPhone or tablet. He is also good at playing musical instruments, singing and dancing, likes watching TV and certain movies. He loves big colourful and musical toys, trains and cars, also likes outdoor play with sand, water, trampolines and climbing. My son is a lot calmer now and progressing positively but I fear about his future and ask myself a lot of questions, however I still have hopes for him; to live an independent life without relying on other people, to be able to communicate verbally and understand the meaning of the words he says and to understand, interact and connect with the world around him instead of living in his own bubble. What breaks my heart about this condition is to see my son suffer and be helpless, not being able to do anything for him. It hurts to hear people passing comments about my son’s behaviour without asking what is causing the so called ‘bad behaviour’. The worst thing said about my son was when we were in a taxi and it was his first time being in another car apart from his dad’s car, so my son was kicking, screaming and hitting out. Accidentally he kicked the front seat and the taxi driver shouted at my son and even said he had never seen such a child so spoilt like my son and if he breaks anything I’ll pay for it, so I had to drop off before the situation got worse and before I got to my destination.

It is not very easy to live with a child who is autistic because some people in the community will not understand why your child acts and behave the way he does, however there is lots of support within the community as the local authority does have plans and provisions put in place for children with special needs and disabilities, starting from suitable play areas, financial support to cater for disability living, funding educational and health needs, and getting support from allocated keyworker and support groups. My strength comes from the reassurance and support I get from my immediate and extended families, friends and support groups. My son is not prescribed any medication at present and I so wish to keep it that way for as long as he is manageable without. My belief about medicating is that it does help to a certain extent, however there is lots of fatal side effects that comes with the medication, therefore should be given as a last resort/ option. Having a son with autism has taught me to accept situations as they are, not to give up but to keep on trying and to be strong for the sake of my child. I have also learnt not to judge people by their behaviour but to try and find out what is the real problem behind that person’s behaviour. I believe that my Son is not aware that he is different from other kids at the moment as he is still young and does not understand other people’s comments about him. I hate to hear people saying my son is spoilt and that is why he behaves the way he does. When there is something that brings a smile on my face, is my child’s obsession with cleanliness and tidying up, he tends to pick up even the tiniest dirt on the floor and puts it on the bin, and he would wipe his mouth after every spoon feed.

Both myself and my husband are nurses by profession and have nursed clients with autism at some point in time, however it becomes different when you have to manage your own child with autism. In the past I have had two of my closest friends having children with autism but I never thought that one day I’ll have my own child who is autistic, and have now realised that I was not supportive enough to them as I didn’t know what they were going through. Our profession has helped us a lot in managing our Son’s condition and also having friends who are going through the same situation helps, as we always refer to them and get all the support. It’s true that with our families and friends living very far, we can’t get physical support from them but with the improved technology we always have people to talk too and get emotional support. The advantage being in UK, is that the local authority ensures that all children with special needs or disabilities are assessed as early as possible and have education and health care plan in place, provisions and budget made according to the child’s needs and requirements, therefore as a parent you don’t have to be stressed about finances as far as therapies/ health and education is concerned. My message to other families with autistic children is always to think positively, follow your own instincts and never ever give up hope. And also not to forget that you’re not alone in this journey but there are other parents who are going through what you’re going through.