Transitioning from children's to adult's services: A parent's perspective (part 1)

This week we will be sharing a series of blog posts written by author and mother, Viki Ainsworth, who will be sharing her experience of her daughter Tilly’s transition from children’s services to adult’s services. In this first post we share part 1 of 7 of her story, and a podcast that Viki recorded with us.

Stay tuned on our community Facebook page and Twitter account for each daily blog over the next week.

Part 1

This story has a happy ending. For now. Long may it last. But I still can’t believe what we had to get through to get to this happy ending. The stress, the emotional turmoil, the uncertainty, the lack of guidance, the unknown, the fear, the frustration, the fights. Welcome to the joys of transition. Sadly, I’ve yet to meet anyone who had a smooth sail through the choppy waters of transition from either children’s to adult’s service, or education to social care services and I can’t help feeling there has to be an easier way.

My daughter, Tilly, is now 21 years old and at time of writing (March, 2019) is six months into her post education life. Tilly is a delightful young adult, non verbal, doubly incontinent, with severe learning disabilities and a multitude of medical issues throughout her childhood. But she is a joy – she smiles a lot, is generous with her hugs, loves a good giggle and a dance and has an enviable knack of getting her own way. Tilly was at the same school from the age of 4 to 19 so obviously we were nervous about her transitioning to college and then onto social care, but we hoped someone would guide us through. They didn’t. We got a lot of leaflets and were talked at by a lot of different groups but I never knew what each of them did and whether they could actually make anything happen for us. I still don’t know what those organisations do if I’m honest and I didn’t know the right questions to ask to get the most out of them.

Our first brush with transition came when Tilly was 14 at her annual statement review, pre EHCP (Education, Health and Care Plan). I had been given a form to fill out pre-meeting asking what my daughter’s hopes for the future were, what did she wanted to do when she left school, what were her goals. Given that Tilly wasn’t even aware she was at school, let alone what came after it, I found it quite upsetting. We’d had that many trips to A and E over the years, so my main aim for her for the future was just to be alive. It sounds awful but honestly I can remember thinking that was all I desired for her – to be well and still with us. I couldn’t think beyond that and was hugely upset by this form that assumed Tilly could articulate her future desires. Like so much in her short life it just emphasized what she couldn’t do and not what she could.

At the meeting itself I was introduced to a person from Youth Connexions. I still don’t know what Youth Connexions do but over the years I surmised that they were an advisory body. As it happens the person I first met from Youth Connexions was lovely, very friendly and eager to help but I could never work out what they did. There were other organisations that would appear at information evenings, plenty of them, but no one could give me any practical assistance, lots of advice and options but not how I made it happen for Tilly. It’s like we were talking through a wall and I couldn’t work out how to get over the wall to where everyone else was.

Tune into the blog tomorrow to read about Tilly’s transition from school into college. In the meantime, why not tune into the Transition Podcast?

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