Six years ago, June, now 60, became the full-time carer for her grandson Kane, who has a rare genetic condition called Tubular Sclerosis. It affects Kane’s cognition, communication, co-ordination and behaviour, and he has medication to control seizures. He has many tumours as part of the condition, and these are monitored. Kane is also autistic which is associated with Tubular Sclerosis.
Caring full-time for a child with special needs has been a challenge. With countless hospital appointments, managing medications, getting little sleep and dealing with 15 professionals at a time involved in his care.
However, June says her biggest challenge has been the lack of understanding and support shown by many of the professionals she has dealt with:
“I was judged and wasn’t listened to. It felt like they thought I didn’t know what my own grandson needed. Several dismissed Kane’s behaviour as him being naughty rather than a result of his condition. I was so scared about the future of this little boy and would cry with frustration.”
June had very little faith in anyone when a social worker introduced her to Carers First and her Carer Support Adviser, Helen.
“Helen was my angel. She won my trust by listening and taking the time to explain things to me. I felt like I finally had someone on my side.”
The most important thing to June was to give Kane the best chance in life. Kane didn’t have an Education, Health and Care Plan (EHCP) in place when he started nursery and he was struggling. He hated going to school and would get in trouble for his behaviour in class.
The stresses of caring during the pandemic and trying to get a EHCP put in place nearly broke June and led to the evening where she confided to Helen that she felt she would have to give Kane up.
After a sleepless night, June looked at her grandson the next morning who she adores and resolved she could not give up.
With Helen’s support, June went on to secure a EHCP for Kane and he starts at a local specialist school in September.
June feels proud Kane will now have the support he needs to have the best chance in life.
Life is much better now for June. She has recently learnt to drive with Helen’s help with a personal budget for lessons which has given her and Kane more independence.
June says she has learnt a lot about herself and is trying to let go of the bitterness from her past experiences. She wants to the kindest and calmest version of herself for Kane.
June’s advice to anyone in a similar situation is to reach out to Carers First for support as early as possible.
“Helen’s support made me stronger. She was by my side in meetings and spoke up for me. If I’d met Helen six years ago, it would have saved so much stress and unhappiness.”
Register with us, or refer a carer to us
Online Help and Advice
Visit our online support section where we have provided advice and guidance on a range of relevant topics to help you in your caring role.