Cynthia cares for her only son, Denzel, who has autism. She shares her experience being a parent carer for a child with additional needs, and talks about how her role has impacted her life in various ways.
Cynthia’s son, Denzel, was diagnosed with autism aged 6, he is now 14 years old and Cynthia cares for him daily. Denzel’s school first noticed signs and traits of autism at a young age as he experienced some developmental delays. Fortunately, Cynthia describes the whole experience in receiving his diagnosis as positive. She and her son both felt supported by the school and referral specialists. Although the diagnosis was initially a shock to Cynthia, and had a detrimental effect on her wellbeing at first as she didn’t know much about autism and was worried about what it might mean for her son.
“His diagnosis was the last thing I could have thought of.”
She expresses how the fear of the unknown was daunting, but now since learning more about his diagnosis she feels a lot more secure, “As time goes by, I am beginning to understand the whole thing. Every day I learn something new. Once you accept it and you have support to go to, mentally it helps.”
Cynthia and Denzel have developed a routine that works well for them both. Denzel goes to a special educational needs (SEN) school full-time and has respite with a carer on some weekdays weekends, with Cynthia taking him swimming and to church each Sunday also. While she receives support from Denzel’s school and additional carer, Cynthia shares how her caring role sometimes impacts the things she wants to do and achieve, “I don’t have my social life as before, mentally and physically it can be very exhausting.”
She took an English course at one point to improve her skills in the language and gain a bit of balance in her life and really enjoyed doing something that is just for her as she says it’s necessary to have that time. In the future, she’d love to look into maybe going into work as well.
Going to carer support groups once or twice a week keeps her from feeling isolated and allows her to feel connected to other carers, while also seeking advice from our carer support advisers. Cynthia first discovered Carers First from the doctor that diagnosed Denzel and was referred around 7 years ago. She loves having the chance to take a break and speak to others at the group, “It’s nice to sit down, have a cup of tea and talk. It’s very beneficial and takes away some stress. I go there for advice and always get answers. It’s good to speak to other carers and know that you are not alone.”
She’s even made friends by attending the groups, “We understand each other. There’s no judgement, we just get on and laugh together. [Since going to the groups] I can look around and see that I’m doing a lot better.”
While receiving a diagnosis for her son was overall a positive experience, Cynthia faced a challenge when she wanted to move Denzel from mainstream into a SEN school, “schooling was an issue to get him into a SEN school, it had to go to tribunal and I had to seek help that way.”
She happily shares that since the move into a SEN school Denzel has flourished, “his confidence is growing, he is more sociable.” Seeing her son make progress socially and develop his skills has been extremely rewarding for Cynthia, and has made her feel very proud, “The most rewarding part is I can see the progress he is making; I can see a bright future. He is becoming more independent and growing in confidence every day. I can see a massive improvement.”
Cynthia’s story is one of determination and resilience. Her fight to get the right support for her son is reminiscent of many other parents with SEN children, and her goal to stay balanced and take time to herself when needed is an important message to spread. Her advice to other parent carers looking after a child with special educational and behavioural needs would be, “When you get a diagnosis for your child, it is not the end of the world, just try to find the right school and support for them. If your child is struggling in mainstream school, look for a good special needs school and show them how it will benefit them.”
If you have a story you'd like to share, get in touch with us at commsandinvolve@carersfirst.org.uk. Click here to find out about the support we offer at Carers First.
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