Maria’s 10-year-old daughter has CDKL5 disorder and is a member of Flexible Childcare Services Scotland’s (FCSS) Ellon ASN Group in Aberdeenshire. CDKL5 is a rare genetic disorder that results in a variety of symptoms, including:
- Global developmental delay
- Epilepsy with frequent seizures
- Mobility limitations requiring wheelchair use
- Inability to walk independently
- Non-verbal communication
- Requirement for full assistance with all daily living activities including:
- Feeding
- Dressing
- Personal hygiene
- Positioning and transfers
- Night time monitoring and care
Maria was struggling to find time for herself and the rest of her family, and her mental health was in decline.
Luckily, Aberdeenshire Council’s Social Work team recognised the families’ urgent need for support and connected them with FCSS’s Ellon service. The group provides specialised care to children with a range of needs after school during the week, on Saturdays and throughout the school holidays.
The team at the Group have significant experience in supporting children with complex needs, they have undertaken numerous training programmes including epilepsy training, manual handling and paediatric first aid allowing them to provide 360 degree support for children with additional needs.
To ensure the children receive the exact care they need, the team worked with Maria to develop a unique personalised care plan addressing her daughter’s medical, physical, and emotional needs.
Through her time at the Group, the team were able to build a strong relationship which Maria’s daughter, helping them to understand her non-verbal communication signals.
Maria describes the Ellon service as “a godsend,” noting that it provides the rare and precious commodity of free time that is otherwise unavailable when caring for a child with complex disabilities.
“Prior to using the service I had no respite at all but the Group has given me freedom to spend time with my other child and partner,” Maria explains, “it lets me walk my dogs, go shopping or see my friends. It also lets me study and It lets me go see family members that I can’t see as I can’t get my daughter into their house because of the wheelchair I absolutely recommend this service, it’s great! It gives you free time, something you can’t get when you have a disabled child. The staff are lovely and always nice, it really is a god send as I have no child care at the weekends as my mum is no longer here.”
