Our son Charlie has Spinal muscular atrophy, a progressive neuromuscular genetic condition which affects his respiratory muscles and movement. We began to notice that Charlie was having difficulty sitting up, crawling and walking; and a referral at around 11 months old to a specialist resulted in a diagnosis when Charlie was 15 months old. We were referred to The Maypole Project by social workers and the disabled children’s team due to Charlie suffering with anxiety when being on his own.
Following this referral, Charlie began to access play therapy when he was around 6 years old, and has now been attending this for around 2 years. It took a while to notice any improvements due to Charlie suffering from a few knockbacks at school, but gradually through this therapeutic intervention he has grown in confidence and the play therapy has helped to teach him the necessary coping mechanisms for daily life. The play therapist has also visited Charlie’s school on a few occasions to offer support and advice which has been fantastic.
Charlie’s conditions means that he has ongoing medical appointments and therapeutic sessions to attend to, which can be quite overwhelming at times. As a result, I regularly access the individual counseling service which The Maypole Project offer, which provides a space for me to voice my concerns and any issues I may be struggling with.
In addition to these services provided by the project, we regularly attend the Gambado evenings. I wouldn’t normally contemplate attending the same venue on public days due to the vast number of people present which Charlie can find overwhelming. However, he really enjoys the privately booked sessions and they give him the opportunity to have fun in a safe and secure environment which is great.
Bringing up a child with a complex medical need can be really tough at times. The Maypole Project is there to listen and offer support whenever required; and as a family we really feel they care for us and feel listened to.