I’m Leila, myself and my husband have Drew aged 8 and another son aged 6. Drew has severe epilepsy, global development delay and attends a SLD school. Drew cannot communicate verbally, babbles and learnt to walk at the age of six and a half, more of a toddle. He can only do this in a safe environment. His seizures and learning difficulties make doing day to day things quite hard, even getting to school can be a struggle. Drew needs help with every aspect of life, personal care, playing, feeding, changing, bathing etc. He cannot be left unattended anytime due to his health conditions. He is on a complex medical diet called the ketogenic diet and has a gastrostomy.
We love family days out, holidays like Centre Parcs, walks and lots of swimming works wonders. We don’t tend to go out at the weekend often, and only stick to activities that suit our time limits, attention and ability. In our area there are more clubs for mainstream children. We would love groups benefitting us as a family, sibling care support groups also. Both my husband and I work, therefore feel out of the loop on what services are available.