A Special Child – Sheetal’s Story
I am a single mother to my Autistic son aged 5 years, Kiaan. It has been a rollercoaster ride for me post my divorce. I would rather use the term Neurodiverse than autistic but this is how the world understands. He is a lovely child, always happy and playful. He is an artist and loves to paint. He understands the world differently to how we perceive things.
During lockdown, we were isolated and he was 2 years old then. He still wasn’t talking so I self-referred him to speech therapy. His speech therapy continued for a year but he was showing other behaviours such as spinning around and hitting his head on the wall. He didn’t like loud noises and was always putting his toys in straight lines. He used to jump a lot and was pushing kids in the park playground. After continuing one year of speech therapy, he was still non- verbal and was only using single words. Later, he was seen by the community paediatrician who gave me a verbal diagnosis that my son will have learning difficulties throughout his life and that he is Autistic. I was devastated and it was such a heart-breaking day for me. It was Diwali on that day and my world had been turned upside down when the world was celebrating.
Life has been difficult and we have lots of struggles throughout the day to just get by. Each day is difficult but we take one day at a time. He has sensory issues so he does not like brushing his teeth and personal care can be difficult, he does not like shampoo in his hair and getting a haircut is a nightmare. Simple things can be overwhelming. He does not like eating certain foods and only eats some types of foods, he is a fussy eater. He does not like large crowds or too many people around, and loud noises. Going out to the parks and being around other kids is a task as he can be unpredictable and push other kids which makes it difficult. He does not like social gatherings such as birthday parties and cultural events like Holi with large gatherings, but I still try to take him – he gradually adjusts. If we try to visit the temple or gurudwara he would have a meltdown and would not go inside as there are too many people. He does not like people coming in his personal space and even having friends over at home is difficult.
He has an EHC plan and goes to a special school. There are lots of services out there like Brent Parent Carer Forum, SEND Needs and SENDIASS who helped me get the right support. I received help from early years and social services to get him in a special school as there is not enough support available in mainstream schools. When my son started school, he had a place in a mainstream school but he only attended for a few weeks, for an hour everyday till we got the actual support needed for him. After changing 2 schools, he finally got a place in a special school. People also have stigma around sending their child to a special school, and people still ask me but you choose what’s best for your child. I, as any other parent, wanted my son to attend a mainstream school so he can learn and grow but special schools also follow the national curriculum and he has the much-needed support, and is learning and coping well at school. His behaviour is improving and he can share things with others.
Each child is unique, not all disabilities are visible. I get looks on the road if he has had a meltdown and lies flat on the road, in the swimming pool if he is over excited and jumping around. If someone comes close, he will hit them and not want them to hug or be touched. If I take him in the buggy due to safety concerns, people are still staring and wondering why such a big child is in the buggy. He is a powerful child and can run off in public; it is not easy to manage him outdoors. People need to be considerate and understanding. Why does my child have to adjust to society? Why can’t society be more understanding and accommodating? We could not continue dance classes for him and he was kicked out of a football class as he did not follow instructions. We need more inclusive places which are sensitive to all abilities, and which help and support all children. There are special clubs for him but why are all not inclusive.
I also get a lot that he looks normal and doesn’t look Autistic. Well, he is normal but he is just different in how he perceives the world and communicates.
As a parent to an Autistic child, it is always worrying for you how they will cope in this world without you. He is a special child and blessed with special powers. He is an artist and paints beautifully – he has done some wonderful paintings for his age. Even a word from his mouth is more valuable than all the riches of the world. I feel happy if he has learnt a new word or a phrase, this gives me immense joy that people cannot understand. He is a lovely, happy and sensitive child who brightens my day every day. He gives me more strength and endurance.
It can be isolating sometimes as you can’t don’t things for yourself and it’s more challenging if you are a single parent without any support system. It takes a toll on your mental health so it is really important to have a social circle and friends who understand. I have made some lovely friends through the ASP network with whom I had play dates at home and in park playgrounds, and celebrated his birthdays. They have all been understanding and supportive throughout my journey. Some of them have sometimes helped me with childcare just so I can follow my passion of dancing and attend my dance classes to feel better. They have looked after my child so I can perform on stage shows, and even attend job fairs and interviews. They have stood by me, even in difficult times, and confronted people outside when my son pushed a girl and her mother was not understanding at all, even after me apologising. I used to work as a Branch Manager for a fashion retail store for about 7 years but since having Kiaan I have been a full-time mother.
It is difficult sometimes but we will overcome our struggles and I am grateful to all those who have been a part of my journey even a tiny bit. There is always hope in the end. Even if you get the slightest light, just grab it and keep going and moving forward. For all those on this journey, stand tall with your special one and don’t let anything stop you. Believe in miracles, as a friend told me. We still have a long way and are still learning every day on this wonderful ride called life. Be kind, you never know what people are going through in their lives and make this world a better place to live in for all.
Much Love x
Sheetal and Kiaan