Friday, 23 August 2013

Jessica's favourite way to relax!

I posted here how some Rett families often say that they love seeing their girls asleep, as it is the only time their bodies look at rest, and how this is not the case for us as Jessica's sleep is so disturbed.

However, there is one place where Jessica is completely relaxed - in the bath. We have a bath chair for her, to make lifting her in and out slightly easier for us, but this doesn't let Jessica fully recline in the bath. So sometimes, as a special treat, we don't use the seat.

When we place Jessica in the bath, she immediately lies back so her head is in the water. You can then visibly see her relaxing, and the stresses and the strains of the day easing away from her.

(Sorry the photos are not the right way up - I couldn't work out how to rotate them!).



 
 

Thursday, 8 August 2013

Bureaucracy


I have thought long and hard about whether I should post about the various issues caused by having to liaise with our local council/education/health service. But it is such a major part of having a child with complex needs and this blog would not be a true reflection of our life if I didn’t mention the stress, frustration and upset that this can cause from time to time.
On the whole, Jessica’s team are brilliant, and I like to think that I have a good relationship with the therapists and her nursery. However, when you get beyond the frontline contacts, and start having to deal with managers, budget-holders and the general bureaucracy of the local council, things become a lot different. 
It can also be exhausting. Trying to chase someone to sign a form to authorise the payment for a chair that was ordered in JANUARY of this year, for her to use at nursery - that she still doesn’t have.  Having to amend a significant report (that is very important for resource allocation) that bears no resembalance to Jessica (apparently, she can use her hands well and feed herself!) - that took two weeks, two meetings, several phonecalls and a lot of upset to sort out. Added to which there was a complete lack of communication regarding Jessica’s school place that led us to believe that she had been allocated a mainstream school instead of the special needs school we had requested. 
It took 10 months, and a ridiculous amount of work and effort on our part, to get Jessica a suitable wheelchair, with our local service suggesting it was perfectly acceptable for Jessica to only leave the house for 2 hours at a time, as this was how long she could tolerate the chair they originally gave her before she became too uncomfortable to sit in it. We have also been waiting nearly five months to trial a piece of equipment that the council has acknowledged that Jessica needs “urgently”, and had to fund several pieces of equipment ourselves, because there is either “no funding” or there is funding, but it will “take too long” and the equipment will be pointless by the time you actually get it if you wait for the funding to come through. This is in addition to me having to carry out my own assessment of Jessica in order to use a particular service (using the council’s paperwork that they had emailed to me) because someone was off sick, and there was no-one else covering their work.
All this takes up so much time, energy, and thought. In the daytime I am trying to look after, play with and enjoy being with my two gorgeous daughters. I don’t want to be on the phone or on the computer constantly trying to sort all these things out. And in the evenings, when I am exhausted from the day, and (barely)surviving on very little sleep, the last thing I want to be doing is sitting down to rattle off a million emails. Somewhere in all that, I am also trying to lead a normal family life, and deal with the cooking, laundry and other general household “stuff”.
I love my daughter dearly, and I want to be the best mum I can to her, and for her to have the best chance in her life to reach her potential. I just wish it wasn’t made so very difficult by the services that are supposed to help.

 

Monday, 5 August 2013

Going to the theatre

I love taking Jessica to the theatre – she always seems to enjoy it, and it is one thing she can experience in exactly  the same way as everyone else.

Jessica was lent (given? I'm not sure they are getting it back!) a book by a good friend of ours, called "Room on a Broom". It quickly became a firm favourite -  it is not unheard of for her to request it to be read to her 6+ times in a row, always accompanied by howls of laughter. So when we found it had been turned into a theatre show, we HAD to take her.

During the show, Jessica was very quiet, and at the time I was a bit worried she wasn’t enjoying it as much as I had expected her to. But then that evening, she was on a complete high, and everytime I said the witches’  “magic spell” she dissolved into giggles! So I think she did enjoy it after all.
Sorry the videos are a bit dark, Jessica was supposed to be winding down for bed (!) so we only had a little lamp on!
video
video