A Parent Carer journey from our Steering Groups' lovely Lenna: 

I’m Lenna & a Mum to 4 beautiful children, ranging in age from 13 to 22.

My youngest, & only daughter G-J, has Developmental Language Disorder & Tourette Syndrome. After spending 8 happy years of nurture & outstanding care in our village pre-school & primary school, where G-J’s needs were understood, things quickly began to unravel when she transitioned to secondary. As a result G-J has extreme school refusal. Her safe space is her bedroom. We have been on quite a journey involving many agencies & professionals in the education & medical sector. Processes are frustrating & tiring. I feel like I am constantly fighting. I think about G-J’s future, & how that will look for her, in a completely different way to how I do for my eldest 3 children. 

So, the positives, because there are many. I admire G-J, she battles everyday just to understand what is going on around her, things the majority of us process without a second thought. At times of particular stress her physical tics will exhaust her, & the verbal ones are something else, however she has the capacity to laugh at herself. Oh, & her sense of humour is second to none. With the help of a phenomenal CAMHS Practitioner, I have learnt to see the world through my daughter’s eyes: Why would you want to be at school, when it feels like you are constantly in a nightclub? Why would you want a group of friends, when the entire time you are with them, it feels like you are at a job interview? As a result G-J beats to her own drum, she has chosen to remove herself from the complications and expectations of society - that takes courage💞 

☀️Without G-J would I be as resilient? Would I be as empathetic? Would I have engaged with a community, where I am privileged to meet parents who champion and support one another without judgement, as they “just get” what it is like to care for a young person with additional needs? Probably not☀️

Written June 2022