It's Children’s Hospice Week 2017, and we're turning up the volume on children’s palliative care, raising awareness about children with life-limiting conditions and celebrating the lifeline services that families rely on. We want to amplify families' voices and change people's perceptions about some of the myths surrounding children's palliative care.
Maxine was referred to Haven House when she was at a real low point. At the time she had no outside family support and was bringing up two young children in her dad’s loft. That’s hard for any lone parent – especially if one child is seriously unwell.
Maxine’s son, Kai, has cerebral palsy and spastic quadriplegia. He cannot walk or mobilise independently and uses a wheelchair. Kai also has epilepsy, resulting in multiple daily seizures and cortical visual impairment, meaning he is blind.
With so much of her time spent caring for Kai, Maxine found it very challenging to do basic things such as take her daughter, Aisha, to nursery and simply play together as a family. She would have to travel long distances for Kai’s hospital appointments and being the main carer was emotionally and physically draining.
Through Haven House, Maxine found support for Kai, Aisha, and also herself. Music therapy has meant that Kai now shows greater interaction with the outside world. He has learnt to sing along to the opening lines of his favourite ABC song and has started to form new sounds in an attempt to say words such as hello; something Maxine was told he'd be unlikely to do.
Music is increasing his motivation to use his hands to play and explore, which was originally a huge challenge for him given his physical disability.
Maxine says when Aisha realised Kai was different, that he never would be able to play in the same way as other children or communicate, "it came as a real shock to her". But through ‘Buddies’, Haven House’s sibling support service, Aisha can make friends with children who know what it’s like to have a brother or sister who will never be similar to them.
The support Maxine receives through respite care for Kai has also allowed her time to meet other mums who have children with life-limiting conditions.
Music therapy helps Kai learn about the world around him and Maxine believes the benefits of his sessions with Haven House Therapies Manager Maeve Rigney cannot be underestimated.
Maeve said: "Since establishing the music therapy service at Haven House in 2010, it has been a real pleasure to share the joy of music with so many children like Kai and to see the positive impact it can have on a child’s life.
"Without this therapeutic input, some of these children’s voices may never be heard. We provide time for them to communicate.”
Maxine said of music therapy: “I’m blown away with what Maeve has achieved for Kai with music therapy. To see his little face light up every time we go in the music room is absolutely amazing. Kai has done so much more through music therapy than I ever thought he could. We are so proud of him."
Maxine’s advice to parents in a similar situation is: “Don’t let pride take over. I did that for quite a long time. Asking for help is not a bad thing. Haven House is a great place to get that help”