Abena has three sons, Emanuel (17), Richard (15) and Kelvin (10) and lives in Oxford. The family is originally from Ghana and moved to Oxford for her husband’s work.
Richard and Kelvin are both autistic. Abena says “Richard has hearing and sight problems, he wears hearing aids. Kelvin is the severe and really tricky one. He is very energetic, has no sense of danger, walks on tiptoes and needs constant supervision 24-7. Emanuel is just a little bit delayed, but he’s ok”.
Abena had a difficult premature birth with Richard “At the hospital they told me he had a bleed on the left side of his brain”. He didn’t sit up until eight months old “That’s when we noticed he couldn’t hear properly or see properly, the doctors told me then he wouldn’t be able to speak”. Over time things began to improve and Richard was able to sit, then crawl and finally walk but he wasn’t talking.
Richard and Kelvin go to schools that cater specifically for children with special needs. Emanuel is in sixth form at a comprehensive school and will finish school this year.
Richard started school at six “He was still in nappies, and then I had Kelvin, he was also premature. When he was born, he was tiny but strong. When he was a year old, he started talking, he was ok, then all of a sudden, the talking disappeared.” She took Kelvin to the GP for an assessment and was told he was autistic and non-verbal. “My whole world just shattered, I already had Richard in nappies with lots of challenges and… the day they told me Kelvin was never going to talk, it was going to be really challenging and need constant care for the rest of his life like Richard… I cried and cried”.
Abena says things have greatly improved for Richard “He has come along beautifully (since starting school), he doesn’t wear nappies anymore and started talking around seven years old”.
Kelvin needs a greater level of care “If you see him standing, he’s handsome, tall, cute, you wouldn’t think there was anything wrong. But he is still very, very challenging. We live close to a main road, with any little mistake Kelvin will run into the middle of the busy two-lane road… it’s very, very scary”. When Kelvin finishes primary school, he will go to a specialist secondary school to help with his needs. Abena describes looking after Kelvin now “I’m still in that journey, still going, hoping it will get better.”
Abena’s husband often works abroad for weeks at a time. The rest of her family live in Ghana. She works in a hospital “I used to work full time and take them to a childminder. Things got really out of hand, so I reduced my hours.” To help her manage, a friend she met through work takes her children two or three times a week, so she has time to do the housework “She’s a very nice gentle lady”.
She found out about Carers Oxfordshire through Richard’s school. During a chat at parents evening a teacher arranged to put her in touch with us. She spoke to our carers team and had a carers assessment. She was then offered Feet up Fridays, “amazing food, it was really nice”, and a carers payment.
Abena loves cooking, her favourite dish is jollof rice from West Africa. “I’ve made it for a few people, they all enjoyed it. It’s tomato sauce with rice and chicken or beef or a combination of both”. She loves going out with friends “any little thing to get me out, a walk…meeting people…to have a little break for myself”.
Speaking from experience she says to other carers “It’s not an easy journey, every day is different. We need patience, love, laughter. You need to be strong and look after yourself a bit more so that when your cup is full you will be able to pour it out. I used to be down, and I realised I was always weak, but when I am happy I do the best.” Doing things that make her happy helps her to look after her children more. “These kids are so special. When they know you are happy, you have that energy… it has a whole impact on them…it makes them happy, it makes them grow, it makes them relax.”