Christmas wouldn’t be Christmas with the Treetops’ Carer’s Christmas Party, It is a perfect opportunity to swap good news stories; share disasters; cry and laugh, (sometimes simultaneously); indulge in festive fancies; and generally ‘be yourself’ amongst people that really know where you’ve come from and where you’re going. This gathering is a unique space within the frantic festive whirl where carers can leap off the Christmas conveyor belt and find solace, understanding and friendship. Christmas can be a very challenging time of year at the best of times, but the added stress of a child with special needs can lead to endless complexities.
The party this year was wonderfully well attended and it felt great to be with old friends and make some new ones. The Donna Louise Trust has support for the family very high on its list of priorities and offers a Carers’ Support Group every month. These are fantastic opportunities to socialise, but also to learn more about the world of special needs; the group guides itself with the support of the hospice and is hoping to develop the activities in the New Year. The feelings of isolation can be so destructive to families who believe that they are the only ones feeling so detached from the rest of community. These meetings are so positive and so empowering and I’ve seen parents almost crawl in feeling so depressed with their situation, and then watch in delight as they gather up confidence and hope and then leave with their heads held high. I believe that I manage my life better because such support.
The added extra for this year’s bash, however, was that Rolf came along for the last ten minutes. Rolf, like many male carers, isn’t really keen on ‘support groups’ so it was great that he joined us and swelled the ranks of the ‘Daddies’ – an elusive species that Treetops and other organisations are always trying to reach! Got to keep trying to engage with ‘Dads’ as I’m sure that it can be very lonely on the outside looking in.
Tilly’s trip to Orthotics was very positive. Tilly needs to wear plastic, ski-boot style splints to try and slow down the deviations of her feet which look like they are trying to turn upside down. Tilly needs to keep her feet in as good a position as possible so that she is able to weight-bear in her standing frame. Standing therapy is one of the most important activities that a child like Tilly can do, but it is rather laborious and can be painful for her.
We managed to park the car and arrived with time to spare so didn’t risk being turned away like the last time. The staff was very welcoming and pleasant and we were seen on time. The Orthotist patiently listened to the sorry saga of Tilly foot splints that were created in the summer and have been ‘chewing’ her feet ever since. Tilly had been advised not to wear the splints as they were only causing pain and no improvement. The consequence of this is that Tilly has been unable to stand in her standing frame, so her legs are suffering and becoming painful behind the knees. Tilly’s spine is also ready for a lengthening of her spinal rods so she is listing badly to one side, and this would be alleviated if Tilly had splints and could stand.
The Orthotist was very understanding and suggested that Tilly’s feet are just about past splinting as a correction to one side of her foot would lead to a deformity on the other. We all agreed that Tilly should now been referred back to the Orthopaedic Surgeon who may consider surgery. In the meantime, Tilly was cast for new splints in a very gentle position that should make them wearable night and day.
At every point during the consultation Tilly was asked if she was happy with the way forward. Tilly, of course, is delighted and is looking forward to new splints as it will herald the purchase of a new pair of boots to go over them! Ultimately, however, I think that Tilly is hopeful that the surgeon will be able to make her feet ‘shoe-shaped’, but is prepared to endure the splints until that happy day dawns.
Tilly managed a couple of hours at school before I scooped her up for her weekly swimming session in the warm waters of Horton Lodge Special School. We all watched in absolute amazement as Tilly SWAM length after length without any buoyancy aids. It was all the more wonderful because Tilly’s retiring physio, Elaine, saw this wonderful achievement, and was actually handing Tilly’s paperwork over to the new physio that evening. What a high note to hand over on!
I said to Tilly, as she was being hoisted out of the pool, that I never believed that she would ever swim without aids. “I did”, said Tilly, “And so did I!” said Elaine. This wonderful commitment and belief in Tilly is what has made Elaine so inspirational. We shall miss Elaine at our weekly sessions, but will endeavour to keep her on our radar. Some folk are just too good to let go!