24Aug07 - Packing Day

Today was the last day before our holiday to Majorca. We are staying in a lovely villa with my sisters family. Sadly only for a week. It is a bit of a mission these days because we have to contact the airline about Lucy, arrange a special "sky chair", get a note from the doctor to confirm what medication she is taking (so we can take it on the plane.....but we can't take too much which means buying special bottles to take it in), plan what food we need for her and tomorrow convince the customs officials that it is all legitimate. How simple life used to be. We spent most of the day rushing around trying to sort everything out and doing last minute shopping. Dawn had extra stress because it is my birthday on Sunday and she had not had time to shop for presents (hopefully) until today. It will all be worth it when we get there tomorrow. Lucy always seems more relaxed and happy when we go away but it is a worry going to places where you don't know exactly where the nearest doctor or hospital is. Since Lucy had a major fit a few weeks ago we carry a strong "rescue" drug with us just in case. As usual Dawn has arranged and planned for everything.
Dawn got the notes from one of the Local focus groups she has been involved in (Icarus - Kirklees Early Years Service) and was pleased to find that not only did they listen to her point of view but that she was quoted in their childcare assessment notes. This focus group asked parents to contribiute to there workshops and forums to share their experiences of looking after disabled children and of the care and service they receive. On the issue of varying standards in staffing Dawn was quoted saying "my little girl's been in the same private nursery for 2 years but the care has not always been up to scratch because I've been at the mercy of individuals. She went through a period where they just leave her in the corner on her wedge and they were not including her at all - i didn't know until afterwards". Dawn was also asked about her experiences of seeking the right care for Lucy and was quoted in the paper saying "you shouldn't have to put your energy into fighting, (........to receive the right care...) you should put your energy into taking care of your children like any parents wants to do". Dawn through Lucy has been a voice for all children and parents like us. The message is a strong one and hopefully will not fall on deaf ears and I know it is cliche but actions speak louder than words. Focus groups are a good thing but are only the first step towards changing attitudes and emphasis on providing valuable services. I think that because of the enormous burden that parents with disabled children carry they too often do not have the strength to stand up for themselves and their children. I am so proud of the way that Dawn has got involved with the wider issues surrounding Lucy and is making a difference not only for Lucy but for other similar families in the community. Dawn has been instrumental in saving the local Portage service which provides developmental ideas and therapy to Local children after funding to the service was stopped recently. Lucy was receiving Portage when it was stopped. Believing that it was not fair, Dawn contacted local councillors and as a direct result of this new funding has been secured for the next 3 years.
Mainstream people may question what people like Lucy have got to offer society but Lucy has already in her short life been the catalyst to make a difference to peoples lives. How many people can truly say "I have made a difference"?