Janet Bower

I applied for the post of one of the two first Advisers, covering from Birmingham to the Orkneys on 20 hours a week! Having worked all my life with families who have disabled children, predominately with a large national charity which was becoming increasingly dependent on the local authority and then within the Education Departent , I was looking for a small charity and the opportunity to work in a more creative way to help meet family needs. The post was advertised and the address to contact was Little Barnsley Farm - how could I resist?!!!

My first impressions of the organisation were that it was extremely family-orientated and not very PC - but then they had never interviewed for a worker before! The TSA then was warm, empathetic and caring and also not very practical! For example, I had to negotiate to be put on the NJC car allowance! But again, Harriet Spencer and I were the first employees to come from outside the organisation and we didn't have a family member with TS. So it was new all round for all of us. 

With regards to my own personal contribution to the TSA, I think that I got the Adviser work well established. I was encouraged, supported and enabled by a wonderful boss and backed by a supportive Board to work creatively with families. I felt like I was given a blank sheet of paper to work on and the work grew from nothing to many extra hours a week – with no fixed unavailable time! 

My husband then retired and wanted us to spend time travelling, so I sadly resigned the post but couldn't bear to leave such a wonderful organisation so was delighted to be invited to join the Board. As a Trustee I did a variety of work, specialising I suppose in interviewing for staff and I was also heavily involved in the Support Services Committee during its life! I retired from the Board having done a full term of office a couple of years ago and am now an official volunteer supporting the Outlook Group; my third incarnation with the TSA. 

I travelled widely as a TSA Adviser although I was rather saddened that I was never needed to go to the Orkneys! Covering Scotland, I went twice a year and stayed with the wonderfully hospitable Nessie and Craig Garrett and I set up several support groups in different geographical areas, of which the Merseyside group continues to thrive to this day. 

My husband has been incredibly supportive. I will never forget one Sunday whilst making the gravy for the roast dinner he came into the kitchen to tell me there was someone in floods of tears on my work answer machine so I had better go take the call whilst he made the gravy!  

And more memories - before we had designated places in the London Marathon my youngest son put in for the draw, got a place and ran it for the TSA. And my Dad had donations to the TSA instead of gifts for his 90th birthday. And I did the Inca trail with Chris Kingswood, his son Mark, Catherine Falconer, Leeds TS clinic nurse and a personal friend. Chris has loads of photos! And we raised a lot of money! 

As for my hopes for the TSA for the next 40 years, I hope that it will maintain the national profile it has now achieved and, most importantly, it will never lose the family base of care for each member as the focus for the TSA.