We're not there yet!

Suited and booted, it was great being scooped up to deliver the last of my “Talks” for the launch of Staffordshire’s ‘Parent Strategy’. My willing escort is one of those wonderful people who have really made a difference for families with children with special needs, and I love the in-depth conversations that we always enjoy. Sharing transport is a great way of really getting to know someone.

We have a theory that almost every family will get served a ‘dollop’ of something nasty to deal with at some time or another. For some families this ‘dollop’ is unspeakably smelly and difficult to live with, and for others, this ‘dollop’ can be dispatched quite quickly. ‘Dollops’ are part of life and if you feel that you haven’t had yours yet, then quite probably one is on its way. …. Let’s hope not. We feel that the ‘Parenting Strategy’ is there to try and help families manage their particular ‘dollop’ whenever and however it might occur.

I was inspired to deliver my presentation as amongst the crowd was the Head Teacher who, against all County advice, had the courage and vision to welcome Tilly to his mainstream first school, St Edwards, in Cheddleton. It was one of the first big hurdles that we thought we had to overcome, but in fact, we were pushing at an open door. The Head Teacher was delighted that we had chosen his school for our little girl. I remember being elated and sharing my great joy with our glorious, now sadly departed, Vicar, Martin Leigh, who smiled and simply replied, “They’ll be lucky to have her!” These words were revolutionary as I had never thought of our situation that way around.

Another inspirational figure in the audience was an experienced nurse who runs Jigsaw, a support group for those living with autism. This wonderful lady has two sons who live with disability, and she has given up her medical profession for her family and for others. I had her in mind when I stressed the point that parenting can be heartbreakingly difficult, even for those carers who have managed to have a career, in Health. It seems to me that living with disability takes no heed of background, ethnicity, social or economic standing.

I really hope that this new Parenting Strategy will result in improved services for families struggling with the challenges that life has given them, especially as so much work as gone into it.

As preparations for Christmas continue, Tilly delighted us by using both her arm supports, working the electrics with her foot, and succeeded in helping Candice decorate their pink, fibre-optic Christmas tree. I wish I’d had my camera at the ready as it may have made a really thought-provoking Christmas card design. I’ve often thought that it would be super to design a range of Christmas cards featuring those who live with disability, excluding Tiny Tim, of course. Tilly designed one once with her as Mary in a typical Nativity scene and it was only just possible to make out her wheels under her long robe. I loved it and she sent it to John Caudwell, the person who gave Tilly her ‘wheels’, so it was perfect.

I had the pleasure of volunteering in the Caudwell Children charity’s office this week. I was immediately enveloped in a wall of photographs from this year’s Destination Dream’s trip to Florida. It was pure joy. Every picture had an amazing story to tell, and every story carried me right back to our amazing adventure to Give Kids the World last year. It really was the most magical trip that we will never forget.

My delightful reverie, however, came to an abrupt end when a Health Visitor rang in to ask the charity to refund the price of a bathroom that a family had funded for themselves by borrowing from relatives. I was quite shocked that this family had taken this route as with young children with significant disabilities they would probably have been entitled to an adaptations grant. It was explained that English was not the first language and that the family really had no idea of how to navigate the system and perhaps the charity could help. The Health Detectives were offered (trained volunteers to support local families needing guidance), and it was requested that perhaps the Health Visitor could also attend as she shares the same first language. To my utter shock and disappointment the Health Visitor replied that she was not an interpreter, but a Health Visitor! I could have cried.

I have been involved in working to enhance and improve the role of the Health Visitor when there is a child with a disability for over four years with Special Matters. There have been vanloads of reports, recommendations, audits and a recent relaunch of a checklist and guidelines. I know that this particular Health Visitor does not represent her entire workforce, but it still made me realise that there is still a very long way to go.

No matter how many strategies and projects are commissioned to improve services, at the end of the day, so much still seems depends upon the commitment of the person delivering the service and luck. That can’t be ‘right’ can it?