Saturday, 23 May 2015

There was a LOT of mud...

I blogged here about how our friend Sam and her father were planning to complete a Nuclear Run to raise money for Rett UK. Rett UK is a charity very close to our hearts, and has given us a lot of support, even before Jess was formally diagnosed.

The Nuclear Run that Sam and her family ran was just under 8km long with VERY muddy obstacles to overcome. BUT they did it!!!! And raised nearly £1000 in the process!!!!

We went to watch, and can vouch that this was not an easy run. However, Jess had a lovely day - we set ourselves up next to the last obstacle, which was a 10foot slide into a waist deep pit of mud. Jess found it hilarious watching everyone fall into the mud - especially those who went down the slide very fast, and splashed her with mud, and  those who swore very loudly as they slid down!!! That sums up her sense of humour!!!

We are so touched that Sam and her family decided to do this in honour of Jess. If you would like to donate to say WELL DONE, and help get that total to an amazing £1000, the link to Sam's Just Giving page is here.

Wednesday, 20 May 2015

Vulnerable and scared

Back in 2011 my husband and I watched a Panorama programme highlighting the abuse of patients with learning difficulties at a hospital called Winterbourne View

At this time, we knew that there was something wrong with Jess, but we had no idea that it was Rett Syndrome. The programme was incredibly distressing. Firstly, because what happened in that hospital was appalling, but also because we had no idea of what Jess's future held, and the idea of her being subjected to such treatment was heart-breaking.

Winterbourne View was a Treatment and Assessment Unit for people with learning disabilities and challenging behaviours. These people will have usually been admitted to these units by law, often miles away from their families and friends.

I can't imagine being a parent of a child where, under the law, all your rights and input into how (and where in the country) you want your vulnerable child (or young adult) to be cared for are taken away from you. And then to find out that they weren't even safe there, or treated with dignity and respect, must be soul-destroying.

Since the investigation into events at Winterbourne View, Mencap have launched a campaign to stop people being moved far away from their families and homes and put into institutions for the purpose of assessment and treatment. This is widely supported by families. However, it is still happening, and their are many examples out there of families in this position. Some examples are of this family, where it was actually ruled in retrospect that the young man's detention had been unlawful. Another tragic example is here, where a young man was admitted to Treatment and Assessment Unit, against both his and his family's wishes. He was known to be epileptic, and it was clearly stated in his care plan that he was not to be left unattended when in the bath in case he had a seizure. Well, he was and he did, and he died.
Since then, another campaign has been launched in this young man's name, trying to change the way people with learning difficulties are treated. You can read more about it and pledge your support  here  for the proposed LB Bill, which will hopefully be passed in  Parliment very soon.

As families of very vulnerable children, a lot of whom are non-verbal and cannot say if anything detrimental has happened to them, we have to trust those who are responsible for their care when we are not with them. This can be carers in the home, at a respite centre, at an Assessment and Treatment Centre, or at school. We often don't get a choice where our children go for these services, and we hardly ever get a say in who is providing any care on an individual level. So imagine my horror when I read this blog about how a 12 year old with autism (and some physical disabilities) was the recipient of a "spit hood" whilst at school. If you don't know what that is (and I didn't, and I wish I still hadn't heard of it), please read the blog. A warning though, it is a difficult read, and I was in tears at the end of it.

Jess is never going to display aggressive or challenging behaviours in the way some children and adults with learning difficulties or autism do, so I feel it is unlikely that she is ever going to be restrained or sectioned under the Mental Capacity Act . There is not much that is positive about a Rett Syndrome as compared with other disorders, but that is certainly one plus.

However, all these examples just demonstrate how very vulnerable our children are, and how dependent we, as their families, are on outside agencies who don't always get it right, and who sometimes get it very very wrong. And that is very very frightening.


Thursday, 14 May 2015

Fundraising... For Rett Uk

Sam , a good friend of Jess' (and the rest of our family!) is doing a Nuclear Run to raise money for Rett UK. A Nuclear Run is 7km long and involves over 50 obstacles, most of which seem to involve a lot of mud and freezing cold water!

Rett UK is a charity very close to our hearts, and has been an invaluable source of support for us. If you feel able to, and wanted to support Sam, then you can find her Just Giving page Here.

Sunday, 10 May 2015

A Burden?

A friend of mine who blogs here wrote about myself and jess on her blog. She is very honest in her writing, and in being so honest, raised some very difficult questions. At her request, I wrote a post which she has since published on her blog:
"I have previously written on my blog here about if disabled children and those with special needs place a burden on society. However, Celia, in her blog asked if having a disabled child is a burden to me, her mother.
My daughter has Rett Syndrome. This is a condition where children (mainly girls) develop normally for their first 12-18 months and then begin to regress, losing the skills they have already acquired such as walking and talking. They end up being profoundly disabled- my daughter is 5 years old. She cannot walk, talk, use her hands or control her movements. She is fed through a tube that goes into her bowel and has her medication administered through a tube into her stomach. She has severe reflux, her spine is curving and she has to wear a rigid spinal brace, she has seizures which cause her to stop breathing, and we have to carry oxygen around with us at all times. She needs 24 hour care for all her needs and will for her entire life.
Is she a burden to us? What I will say is it is hard work being her parents. The level of care she needs, and all the background work takes up all my time, such as the ridiculous number of appointments we have, making sure we have enough feed, medications, nappies and equipment at all times. Her needs are very unpredictable- I regularly receive a phone call from her school to say they have called an ambulance for her. Equally, she has severe sleep disturbances- for example, I went to bed at 10pm last night, and Jess got up for the day at midnight. All these factors do not make for an easy life. I have had to give up a much loved career in order to care for her.
Historically, girls with Rett Syndrome were thought to be severely disabled with severe learning difficulties. However, new developments and new technology are demonstrating that they do not have severe learning difficulties, they are "locked in" and unable to express themselves due to their physical disabilities. They DO understand what is going on around them. One exciting piece of technology is the Eye Gaze computers, where the girls with Rett Syndrome can move the curser with their eyes, just as we would with use the computer mouse. There are girls in America (where eye gaze technology has been used for a lot longer) in mainstream schools sitting (and passing!) mainstream exams.
I know that my daughter understands everything, and her communication (she doesn't yet have an eye gaze device, but it has been ordered) whilst subtle, is there. She can spell her name and her sister's name, and she clearly demonstrates her likes, dislikes, wishes, choices and love for us. For example, her dad was on he the phone the other day and I had put him on loud speaker, and Jess started blowing kisses down the phone. I know she understands, and that she loves us. And we love her. Very much.
We understand Jess, and the amount of input and love we get back from her, makes everything we do for her worth while.  However, I know parents of children with other conditions who do not have the same level of feedback and love from their child- they may have severe brain damage, or challenging aggressive behaviours. And yet they still love their child, and want the best for them and work hard to achieve this. Lots of people talk about the love you feel for your child being unconditional and it's the same if they are disabled or have special needs. As a parent, we all have the same very basic hopes for our children- that they will be happy, they will achieve to their full potential and any hurt or pain they suffer in this life is minimal.
Jess herself is not a burden. However the burden of responsibility on us as her parents is huge. The effort of just looking after her on a day-to-day basis can be overwhelming, and the responsibility to make sure that she enjoys her life and is as pain free as possible, given all her various physical problems is not insignificant. We go out of our way to make sure she enjoys a wide variety of experiences. For example we are very conscious that we have a window of opportunity while she is small to do things like Alton Towers and Disney World, while she is a size that we can lift her onto the rides. She absolutely loves things like that, and it breaks our heart that we are not going to be able to take her on things like this for much longer.
The other huge task is to make sure that others around her- family, peers, school, carers etc understand her, and include her, and that she has all she needs (including correct medical management and equipment such as the eye gaze device) to achieve everything she can, and be as happy as she can be in her life.
 We are just parents, like any other parent, trying to do the best for our child. It's just, for us, it is very difficult, exhausting, lonely and heartbreaking.
Research has shown that there is a possibility that Rett syndrome may be curable in the future. Scientists have demonstrated in mice that if the abnormal protein levels found in the bodies of girls with Rett syndrome are corrected, the symptoms of Rett Syndrome disappear. This research is moving at an astounding rate and it is thought that Rett Syndrome may be the first condition of its kind to be cured.
How amazing would that be???"