Saturday, 26 September 2009

Mummy's first (rather lengthy) blog

I thought I’d start my Blog with a review of the week that was. As far as the Griffiths’ Clan are concerned, most weeks are busy but this last week has been particularly packed.

Last Friday I attended a meeting to look at the Aiming High for Disabled Children programme which is a Government Grant to really make a difference to families such as ours by offering supported activities. I went along as Secretary of Rudyard Sailability, hoping to offer sailing opportunities to children in Staffordshire, and as the mother of two children. Tilly is nine and lives with Spinal Muscular Atrophy – a neuro-muscular condition resulting in profound muscle weakness. Tilly uses a finger-tip controlled powered wheelchair and lifting equipment and relies upon nightime ventilation and a whole range of other machines to support her breathing. Candice is eleven, and she too lives with Tilly’s diagnosis, as a sibling of a child with special needs, but does not need any specialist medical equipment, but a careful eye to ensure that her needs are not swamped by her sister’s.

I gave a presentation along with another parent based on “Welcome to Holland” a bit of prose that describes how a family with a disability are like a family who have planned to go to Italy and then find out that they are actually on a flight going to Holland, and will never get a chance to get to Italy. It seems that this is the view taken by many people in the world of special needs (professionals and families) that some how it is OK to accept that we will never have the same opportunities of the able-bodied world and that we have to ‘live with it’. I explored the analogy further saying that of course not all families arrive safely in Holland – some feel that they have crash landed; others can’t understand the cabin crew announcement and are completely bewildered and confused and never make it out of the arrival hall; and others never actually land anywhere and circle round and round in an eternal holding pattern. The bottom line of the talk was that our children are not aware of this analysis and naively believe that the entire world of opportunity is open to them. Tilly told me of a dream where Candice was “in Italy” and asked me when she could go and I realised that we could go, with the right support we could do anything. We’ve just got to Aim High! Everyone seemed to appreciate our Talk. I appreciated the lift with the Special Matters Team (a local parenting group for families with children with special needs), the lunch and the chance to catch up with folk.

Last Friday after school the girls went to Chess Club and then we went off to swimming where Ellen comes along and helps get Tilly showered and hair washed and it was home for ‘tea like a proper family for once’. Delicious!

Last Saturday was interesting. Tilly spent the day with Ellen helping out with a Caudwell Children’s Monkey March at Trentham Gardens. I took Candice over to Rudyard Lake where we had a large group from the “Williams’ Syndrome” over for a Family Fun Day. Both events were terrific and the girls managed their independent roles brilliantly – it is a happy/sad feeling to see them both confident without me. Another scrumptious tea ‘like a proper family for once’ and we caught up with the box – Strictly Come Dancing and The X Factor.

Piano lessons for both girls on Sunday morning at the Teacher’s house down the road. Tilly goes in first and Candice and I sat in the van and caught up on homework and emails. I never dreamt Tilly would be able to access the piano, and she has proved me wrong – one of many activities that I thought would be out of her reach. Tilly was not born with a ‘shame I can’t do that bone’, she was born with a ‘how can I do that bone?’ The fun part is finding a way whether it be dancing, skiing, sailing, abseiling, caving, etc, etc

Candice read at Church – a packed service with Baptisms with the sun streaming in through the ‘Angel’ Window. Fabulous! Just the boost needed to get through another week. We skidded home to a Rudyard Sailability update with various members of the Group. We’ve got a meeting with British Waterways next Tuesday where we are hoping for a Lease for a new building at the Lake to support our activities. Incredibly, we have been fighting for five years for this facility so let’s hope we will have a positive result.

Whizzed back after dropping the girls off for school – such a great feeling to be dropping them off together at the same setting. St Edward’s Junior High in Leek has done an amazing job making the school accessible for Tilly and other wheelchair users. St Edward’s First School in Cheddleton set a high standard of inclusion which the Junior High and Westwood College are following. What enlightened times we live in, I will be eternally grateful for the work by so many that has gone into Tilly’s education.

Had a meeting in the day with BBC Radio Stoke and The Donna Louise Hospice (Treetops) where we talked about the radio station following Tilly for a year, capturing the variety of activities that occur around such a little girl. We also decided to set up this Blog which the Griffiths gang will all chip in to from time to time.

Monday night was spent with Tilly in PICU (Paediatric Intensive Care Unit) on a Sleep Study. Tilly loved it as it did not involve any needles – just lots of monitoring machines, being filmed whilst she slept and a chance to catch up with her friends at the hospital. Another group of professionals who have done an amazing job for Tilly, which is great as it would be a nightmare if she didn’t love going to hospital.

We were up early Tuesday to get Tilly into school with Candice. I spent the day at the Caudwell Children’s office trying to be of some help by doing some administration work for them. They are busy planning for this year’s Destination Dreams holiday to Florida – such a big project and so amazing. We went last year and still talk about the trip most days. The girls are determined to go back as volunteer helpers when they are old enough. We stayed at a special village called Give Kids the World where the magic is amazing.

Tilly goes swimming at in the warm pool at Horton Lodge after school with other children with physical disabilities who are included in the mainstream educational system. It is run by the Physios and is a useful and lovely opportunity for us all. Candice did cross Country during this time and then we met up and went to Rudyard Lake sailing. Ellen came too which made it all possible and then she came home and helped get Tilly into bed. Amazingly we all go fed at various points and Rolf kept the B&B running. We were treated to a visit from a member of the CAST team this night. This is a NHS service that offers support to families with a ventilated child. Eileen arrived at 10 pm – we chatted for an hour and then I went to bed knowing that Eileen was on watch and seeing to Tilly’s various needs overnight. Another great tonic which does so much to recharge the batteries.

On Wednesday I went to a great coffee morning at newly refurbished Meadows School in Leek. Special Matters had booked the ‘bungalow’ which was perfect. There was a great buzz in the room and a collection of familiar faces along with some new ones. Let’s hope that it was helpful as well as enjoyable. I know that I found a great deal of comfort knowing that I was not alone in the world of special needs and learnt all the best bits at such meetings.

After school Wednesday was mad. I had a Governors’ Meeting, Candice had a netball match, Tilly had a meeting with Becky, the reporter from BBC Radio Stoke and then the girls had Brownies and Guides to get to later on! With the help of Pauline (another of Tilly’s Personal Assistants), and another kindly Mum from school, everything fell into place. Once again, miraculously, we found time to eat at various times and Rolf kept the B&B afloat.

Thursday was another ‘dog on lino’ sort of day with Tilly going swimming with the school for the first time with the school. Everyone had worked hard behind the scenes to make this a success, which it was in spite of the mini-bus not arriving. Fortunately I was on hand with our vehicle to scoop her up and was delighted to hear that Tilly will be included in the ‘Goldfish’ swimming group with her peers in future. Mission accomplished!

Rolf and I whizzed off for a celebration event at the Britannia Stadium. We were guests of CAST as we had been involved in some filming to support their presentation. It was a great occasion with lots of community teams celebrating their achievements. We all adore the CAST team and it was a privilege to be with them to show our support of their great work.

It was then a dash back to school to ferry Tilly up to hockey club at Westwood College. (Candice walked up with her friends and of course Tilly would like to walk up under her own steam in future). Ellen supported this activity and I went back to school for a Governor’s meeting. During this meeting I remembered that I was supposed to have given my apologies for a Governors’ meeting at the First School. I feel bad not to have done this and must contact them and ask their forgiveness. I really do miss them all as they were all such a big part of our lives and now we’ve moved on to the next setting which is so completely absorbing. Tilly loved hockey and now would like an astro-turf style garden! We then went for tea at Brough Park and I whizzed Candice over the Miss Jeanette’s for her dancing lesson. Home again with Ellen to help get Tilly into bed and Rolf went out to do some shopping and bring Candice home. Rolf and I had ‘Pizza on the Couch’, which is a Thursday night tradition, and one that I really look forward to.

Had to get Candice up really early on Friday morning as she had homework to give in that she had no time to do the night before. We also had to find outfits and phrases for a special “Languages” celebration at school. Tilly went as an Arabian Princess and Candice went as a Native American Indian.
I then went to give a “Talk” as a service user of the Rowan Organisation – a group that supports people who use Direct Payments. It was a celebration of their tenth year doing great work, and I certainly can’t imagine how our lives would run without direct payments.

Friday afternoon it was spent organising a trip to Downing Street and some filming as Tilly is a finalist in Channel Five News “Britain’s Kindest Kid”. The girls went to Chess and then we went straight home as Tilly’s swimming lesson had been cancelled as the teacher has a cold and does not want to pass it on to Tilly. Ellen came over to help with Tilly and then we all had tea ‘like a proper family for once’.

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