Saturday, 26 September 2015

Children grow!

Children grow. As they get older, they tend to get bigger. I don't think anyone should be surprised by these facts.

For the average family, when children have a growth spurt I assume the parents just visit the shops of their choice and expect a larger than normal credit card bill at the end of the month.

For us it is not that simple. Jess has had a massive growth spurt. So much so, that her dietician has reduced the calorie intake that she receives through her jejostomy feed. So much so, that not only has she grown out of all her clothes, but also all of her equipment, like her wheelchair, her hoist slings, her sleep system and, very nearly, her bed. She has already needed a new rigid spinal brace and foot splints.

But it seems the public sector is just not set up to accommodate growing children.

Imagine if your child had grown out of his shoes, so you took them to the only shoe shop available to you. Imagine then, if the shoe shop said:

"Yes, we have shoes in all designs and sizes, there is bound to be something for you. However, you can't have any new shoes until we've measured your child's feet and there is a 12 month wait for measuring. We'll be in touch when you can bring your child in to be measured."

Hmmmm. That's kind of the position we are finding ourselves in with equipment provided by Social Services.

The NHS works slightly differently, but with similarly frustrating results. They seem to carry out the assessments reasonably quickly, but by the time the request for the equipment has been approved, the finances processed, the equipment ordered, delivered and then a rep has been out to set it up,  9-12 months may easily have passed. By which time the child has probably grown again and the new piece of equipment is already too small. This has happened to us on at least two occasions, with very expensive pieces of equipment.

If you follow this through to its logical conclusion, it means you always need to be requesting equipment two pieces in advance.

However, to actually do that would, first of all, be ridiculous and secondly would place even more pressure on an already overburdened system.

There is no obvious answer to this very frustrating process!! 

Monday, 14 September 2015

Seven Weeks

Jess's school had seven weeks of school holidays this summer.
Seven weeks with a child who can't do anything independently to entertain themselves is a long time.
Seven weeks with a child who might be up for 20 hours out of every 24, is a long time. That's a lot of entertainment to provide. That's a lot of Peppa Pig and Disney's "Frozen".
But we survived!
The first week, we went to stay with the girls' grandparents in Devon, where we had some fun days out:

The next three weeks, we had a carer, Sam, working with us, whom I've mentioned before on this blog here as she has raised a lot of money for Rett UK.
On the second week of the holidays, Sam and Jess went together to attend a week-long workshop run by the Chickenshed Theatre Company. Chickenshed is an inclusive theatre group, who in the holidays run workshops for children. There were 85 children on the workshop, of which several had special needs or disabilities. It was an amazing week, with lots of arts and crafts (not usually Jess's favourite activity, to be honest) and lots of music and dancing (which she loved), all building up to the group putting on a performance for family and friends on the Friday afternoon.
The show was amazing - the talent and effort of all the children was breath-taking - but I think the real success was the rest of the week. Jess loved being included in such a big group of children, and I think the other children benefited from spending time with her as well. Sam said that even from the beginning of the week, the other children were very interested in Jess, and asking a lot of questions. By the end of the week, they were actively looking out for her, making sure she could see, that there was space for her wheelchair in the circle, and were able to understand some of Jess's communication to help her to be included. I think this would have been a valuable experience for the other kids to develop alternative communication skills, and the awareness that everyone is different but can contribute, as well as empathy.
Jess and Sam after their Chickenshed performance

The next two weeks we spent at home, some days chilling out - long baths for Jess (which she loves but doesn't always have time for) and time in the garden, as well as some fun days out. We went to a fair:

We went to the butterfly exhibition that was on at The Natural History Museum:

The butterfly thought Jess's hairclip was a flower!

We also went to see The Gruffalo live on stage:

We then had a two week holiday in France, which deserves a post all of its own. I will try to write that soon!

The final week of the holidays we spent at home, catching up with things and getting ready for the return to our normal routines.
This describes the fun things we did. It does not cover having to go to Great Ormond Street Hospital four days in a row for appointments, the ridiculous length of time spent waiting around in various pharmacies for medication and the vast amount of time spent organising everything that had to be in place to take a child with all of Jess's needs to France for 2 weeks. It does not cover all the lifting of Jess that we had to do for her to participate in activities, and the difficulties we had changing her nappy when we were out and about.
I feel I spent the whole seven weeks telling Anna to "just wait a minute" while I attended to Jess, and she clearly missed the time with me one-on-one that she has when Jess is at school. Unfortunately, this resulted in more attention-seeking behaviour, which just resulted in me saying "just wait a minute" even more. A vicious circle.
Seven weeks is a long time. I found it quite hard work - trying simultaneously to meet the very different needs of my two daughters, and make sure they both enjoyed the holidays, as well as carrying on with the normal demands of keeping on top of Jess's medical appointments and management.
But we survived! And I think the girls enjoyed the majority of their holidays (although when told we had to go the the chemist for umpteenth time, Anna did exclaim "not again!") However, Jess is back at school and settling really well into her new class. Normality has also returned for Anna - nursery, swimming lessons, ballet classes as well as time with me.
And I've had my first morning child-free in 2 months, when Anna was at nursery and Jess was back at school!! I went back to bed for nap.