My Story

As parents to 7-year-old twins on the autism spectrum, we are constantly learning each day how to support our children in order to give them the best possible opportunities in life. Our journey began when the twins were 18 months old and presented with significant speech delays and delayed childhood milestones.

From accessing speech therapy via our local Children’s Centre, the twins were referred to the Child Development Team at our local NHS Trust. They were formally diagnosed with Autism Spectrum Disorder when they were over 3 years old. Additionally, they received combined diagnoses, including Global Developmental Delay, Sensory Processing Difficulties, Learning Disability, and Epilepsy.

The challenges faced by families like ours can be overwhelming. In our case, we have two children who are unable to communicate their needs effectively or follow simple instructions. They cannot self-regulate and are fully dependent on parents and carers for all their self-care, hygiene needs, and feeding, to name a few. Additionally, the children have no awareness of hazards and can abscond. Therefore, they need full-time one-to-one supervision for their safety.

This has required an immense adjustment to our lives, both inside and outside the home, and continues to have a profound impact on us all, especially our eldest child, as well as on family relationships. It has led to social isolation and significant sacrifices.

As parents of children with SEND, not only did we need to become experts in the field of autism, but also in the wider SEND world so that we can advocate for our precious children. Needless to say, the learning curve was steep! From navigating the NHS services and therapies available to setting up their Education and Healthcare Plans, the endless and onerous form-filling required much research as well as input from a multitude of professionals and fellow SEND parents.

Local authority-funded school nursery places were practically non-existent in our region, and schooling options were limited. Every step of the way felt like a battle for us to ensure our children received the support they desperately need, both while attending school and at home.

Families like ours rely on support networks. For us, this has included fellow SEND parents and professionals. This struggle is a lifelong marathon, and we must learn to pace ourselves in order to continue providing the level of care our children will need going forward. Having access to respite time is therefore critical, yet very difficult to arrange. As limited as it may be, respite has allowed us to spend quality time with our eldest child, who has had to grow up faster than her peers and is undoubtedly the unsung hero of our family.

We draw great strength from our faith, which teaches us the enormous blessing of caring for children like our twins. We pray that we are able to continue looking after them and advocating for their needs.