When things starting getting more intense with Liam’s care I needed help. I did have a close family and my parents to help but they did things their way, which led to arguments that didn’t help with my stress levels. My social worker was aware of the situation but was limited in the options she could offer. Banardos home from home was mentioned but finding someone I trusted with Liam and all his needs, I felt, was way out of our reach! I remember saying I wanted something like an extended family that would be on Liam’s and my side. Someone like a second granny or auntie, but how would this ever be available? I didn’t want Liam out of my life, I wasn’t ready to let him go but how could we carry on?
Then I met Jenny and Dave, it all came together! How amazing to meet a family who knew all about community services, how to access them for people like my son and could offer this and more. They could offer Liam opportunities that I was not in a position to offer. Their experience of being parents and caring for their own son Craig, and Jenny’s involvement with PAMIS, meant that they were able to provide support for Liam and us as he transitioned from children to adult services. Jenny has guided us in the right direction to services such as accessing Self-directed support, appropriate day centre provision and even College. Jenny and Dave understand Liam, and are able to follow his communication, and to identify what he is saying by his body language. Their provision of respite support and latterly accepting Liam full time, once Liam and I were ready, has been a great help.
Transitioning from child services into adulthood and adult services is such a daunting time for all families who share our circumstances. However, importantly, Jenny and Dave welcomed us to become part of their family and we very much welcomed them into our family too.
Jenny and Dave’s experience, knowledge and understanding gained from looking after their own son with PMLD has allowed them to actually see and support Liam as a valuable individual young man.
People look at our situation and ask, “how did you manage to have all of this in place for your son?” Of course without the flexibility choice and control offered under Self-directed-support and everyone working hard to make it work we may not have such a successful story to tell. I feel Liam is a very lucky young man who has been gifted an amazing extended family and future adult life filled with opportunities. I just wish every family in my situation could be as lucky as we have been in successfully sharing their son’s or daughter’s caring role and the special relationship we now have with Jenny, Dave and their family. Liam and I have been blessed.