Sunday, 30 March 2014

A sense of peace

I mentioned in this post here that I was taking Jessica to visit somewhere she could go to for respite, possibly one night a month. It is a purpose-built facility run by a charity, but it is used by Social Services to provide respite (or Short Breaks as it is now called) for children up to 19 years old with disabilities or special needs.

When I looked round previously, I was very impressed and felt happy that Jess would be well looked after here. They have all the equipment she needs such as hospital beds in the same style she has at home, hoists, hi-lo baths, sensory rooms etc, and the staff are all trained to use gastrostomies and can administer oxygen. It is somewhere I can envisage Jessica going to for many years in the future.

So I took Jess to look round, and to meet the staff. Jess seemed very happy, and the staff all fell in love with her. She will start by just going for the day to start with, and build up gradually to staying overnight. I am sure that Jess will really enjoy spending time there.

However, when we were there, something else happened, that made me realise how far I have come in the world of Rett Syndrome.

There was another girl staying there - a teenager who has Rett Syndrome. Now we belong to a support group for Rett Syndrome (part of Rett UK) where most of the families have older girls, and I have found it really difficult meeting them - I can't imagine either Jessica or Anna at 19 years old, let alone Jess being a 19 year with all the issues that she may have then - that is a whole new level of acceptance.

But it was different this time. Maybe it was because it caught me unawares - it is not often you just "bump into" a Rett girl, outside of a specially organised Rett event. I wasn't expecting it. Or maybe it was because the few times I have met older girls with Rett Syndrome have been very emotional times anyway- once was very soon after Jess had been diagnosed and another was just after I had given birth to Anna.

But I looked this girl, and saw the hand  movements and the abnormal breathing. But it wasn't these actions that gave away her diagnosis to me. It was when I knelt down next to her wheelchair, and said hello. She turned to look at me and gave me that intense, all-knowing, all-understanding look that only Rett girls have. She seemed so calm, so content, and had an aura of peace around her - I can't really explain it.

I found the whole visit very moving - meeting this other girl (maybe I am just coming to terms with what Jessica's future holds a bit more), combined with the relief that we have found somewhere Jess can go for respite, where she will be well looked after and be really happy, and all that that means for our family life. I came away so relieved, as if a huge weight had been lifted off my shoulders. And with a sense of peace that everything will be all right somehow.

Friday, 28 March 2014

Running for Rett Syndrome (my friend, not me!)

I have lots of amazing friends who love Jessica, unconditionally and just for who she is.

One of those amazing friends is Galia, who adores Jessica (and it has to be said that the feeling is mutual). Galia is running (for the second time) to raise money for research into Rett Syndrome, and this time she is doing a half marathon.

If you feel able to donate, and support the valuable research that is going on to find the cure for Rett Syndrome, and to support Galia, please click below to access her Just Giving page:

Galia's Just Giving page

It will be very much appreciated.

Thank you

Monday, 24 March 2014

Light at the end of the tunnel

Well, there is no denying it, these last few months have been incredibly difficult.  And although there are more challenging events coming up over the next few months, we can see a bit more clearly when and how life may settle down a little.

Jessica seems to be in a better place, health-wise. She has managed a couple of consecutive weeks at school (hooray!), and we managed (yet another) chest infection, but this time at home without needing to go into hospital. We have got the hang of the NG tube now, and can clearly see how it is making a really positive difference to both Jessica's life and the rest of the family's life. I will blog about this is in more detail another time. Jessica is having her tonsils removed soon, which should hopefully mean we don't need the night-time oxygen and oxygen monitoring, and shortly after that, she will be having a Gastrostomy which will replace the NG tube.

We are moving forward with the plans to adapt our house, and now have a bit more of an idea of how this will work. We are looking at ceiling hoists and through-floor lifts, as well as working out issues around the bathroom and access in and out of the house.  We will be receiving a Disabled Facility Grant (DFG) from Social Services, as well as contributing to the changes ourselves.

This process is supposed to be done in collaboration with the relevant team at Social Services, but I have to say, we have not had a great experience here (slight understatement). I don't think the "assistance" we have had could have been any more unhelpful, obstructive or less individualised if they had tried. This attitude has significantly increased the stress we have been under, and we have only been able to make progress with this process because we hired our own architect (something I would strongly recommend to anyone having issues with the DFG process) and pointed out to Social Services their various statutory duties to a disabled child (again, something I would recommend).

And the problems we have had have not even been just about money. We wanted to (and probably are going to) purchase a piece of equipment that meets Jessica's needs far more than the standardised, textbook adaptations that Social Services wanted to do, which would be far more appropriate to an elderly person after a stroke, rather than a 4 year old child. The piece of equipment was recommended to us by another OT who knows Jessica very well, so we are happy that it is suitable for Jessica, and it is actually cheaper than the plan from Social Services. However, they refused to even consider it, because "we've not done it before". It is crazy that in the current climate, huge amounts of money could be spent on things that don't even meet people's needs.

However, after a lot of arguing and presenting of our very good reasons for wanting to have this piece of equipment, and Social Services not being able to give any good reason as to why we shouldn't have it, they have finally agreed that we can go ahead.

Our other success has been to reinstate some respite care for Jessica, but again this has been a huge effort - fighting (begging?) Social Services for some help - after our previous arrangements became unsuitable for Jessica due to her increasing care needs.  We have only had 3 nights' respite since July 2013, and since December 2013, Jessica's care has become a lot more complex with the NG tube and night time oxygen. We have no-one else apart from me and my husband who can currently look after Jessica. Obviously her school can, but she has often been too unwell recently to go to school, and has missed much of the last few months' schooling. Caring for Jessica,  24/7 without any break in sight, as well as trying to keep on top of everything else going on, has been very difficult, and has taken its toll, both physically ( I am in constant pain from lifting Jessica) and mentally; I desperately need some regular breaks.

The support we have had from Social Services through this time has been shocking. I know there are financial pressures, but that really is no excuse for the rudeness, and blatantly uncaring attitude that we have witnessed and received over the last few months, as well as their attempts to clutch at any straw to avoid them having to meet even their most basic legal obligations towards support for a disabled child and her family. I can totally understand why people give up trying to get the input they need (and are entitled to) and succumb to despair.  It can be exhausting and draining.

But we have got there, and I am taking Jess to a place this afternoon that she can hopefully go to for some respite care. I have already looked around it, and met the staff, and I think it would really suit her and that she would really enjoy spending time there.

So yes, there is some light at the end of the tunnel, even though it seems very far away. It has been a difficult few months, and my advice to any other families out there is to keep fighting for what you need - nothing is going to be offered to you on  plate, even to the point of you very likely being given misleading information (or even completely inaccurate information regarding Social Services legal duties to you). Do your research, and stand your ground. It is your child and your family that you are fighting for. Although it is so, so exhausting, and it really shouldn't be so hard.

Friday, 7 March 2014

Kindred spirits

Last weekend we all went to the park- Jess in her wheelchair and Anna on her scooter.

This was the first time that we had taken Anna out on her scooter, she normally just scoots round indoors at home. She was hilarious (although we have decided that we need to buy her a helmet!) and we were all, Jessica included, laughing at her antics.

However, quite quickly Jessica became a bit cold, and was less happy, so I decided to take her to the cafe, while my husband carried on scooting with Anna.

While we were there a gentleman came over and sat down next to Jess. He didn't want to talk to me or even ask about Jess, other than her name and to check that she could hear him.
He wanted to talk to Jess.
They "chatted" for ages, him about everything and anything, responding to her giggles and  squeals of delight, with the pair of them giving each other "high fives" throughout. Jessica's face lit up, she was so alert and animated, it was amazing to see. It was like they were long-lost friends.

It was also a learning experience for me - clearly I meet lots of disabled children at Jessica's school, and other activities and places we go. And while I always try to interact with the children, I also like to find out a bit about them. But this experience made it clear that this is for my benefit- not for the child. Jess was so happy to be acknowledged and have someone to "chat to" and that is what made this interaction so special. Jessica felt independent in her own right.
When the gentleman was saying goodbye, he told me that he has a son, who is now in his forties, with learning difficulties, which explained a lot.  In watching that brief interaction between him and Jess, I learnt a lot. 

Tuesday, 4 March 2014


Who knew that one word could make such a difference to our lives?

Jessica is very good at communicating choices between items held up to her, or between photos of those items (we have not yet really progressed to symbols). However, this form of communicating makes it very difficult to communicate more abstract needs -pain, hungry, thirsty, more, finished. etc.  However, Jess and I have established a very reliable way of her telling me when she is  "finished".

This could be that she has had enough to eat, that she has had enough time in the bath (very rare that this is the case as she loves her baths so much!), that she has finished on the toilet, finished watching television.... you get the idea.

It started when we were giving Jessica baths more often than we are currently able to (she is now too heavy to bath her frequently, and we are waiting for the home adaptations to be done that will allow her to be bathed more easily; see here and here).  I would sit her on the toilet before putting her in the bath and asked her to look at the bath when she was "finished" on the toilet and ready to be lifted into the bath. In our house, the bath is to Jessica's left when she is sitting on the toilet. She very quickly got the hang of this, and somehow, I can't really remember how, this got transferred to other areas of our lives. So now, if she wants to tell me she has finished, she will look to her left, and then back at me.

I realised that she fully understood this one day when I was with her at school. I sat her on the toilet there, and asked her to look to her left when she had "finished". However, she immediately looked to her right. This confused me somewhat, and I wondered if she didn't actually understand the concept, despite using it reliably for some time, or if she couldn't transfer the skill to a different environment other than home. However, I should know not to doubt her. She looked to the right again, then used the toilet and then immediately looked to the left and back at me!

I can't tell you how amazed I was, firstly that she was able to transfer the "finished" signal to the school environment, but also that she had grasped the concept of opposites ie, looking to the right for "more"! I had not tried to teach her this at all.

She is one amazing little girl, who knows what else she is capable of given the chance? I love every time we have a "connection" like this, where we are able to communicate together and know that we understand each other. And she always looks so proud of herself. Just as she should.

Sunday, 2 March 2014

Saturday, 1 March 2014

The four stages of Rett Syndrome

When you read about Rett syndrome, a Rett girl's lifetime is typically split into four stages. You can click here to read about them.  

Jessica had her main regression when she was roughly between 18 months and 2 years old- you can read about her regression here.

Given this, we assumed that she had entered stage 3 of Rett syndrome, where there is a period of stability and development, and indeed this has appeared to be the case over the last 2 years.

However, the other day I contacted the amazing team at Rett UK, to ask if they had any thoughts or advice on the numerous complications we have suddenly found ourselves trying to deal with- both regarding Jessica's health and the issues around respite etc.

They suggested that there can be an overlap between the different stages of Rett Syndrome. This could mean that Jess has not fully left stage 2, the stage of regression, and that she is still experiencing Rett changes that her body (and us!) need to adapt to.

This could explain all the different health issues Jess has been experiencing in the last few months and why so many different body systems are suddenly changing how they function all at once, when on the face it there is no obvious connection.

This is both reassuring and scary at once. Reassuring that there could be a reason for all the seemingly random developments of late, and also that hopefully this won't continue forever and that stage 3 period of stability will arrive.

Scary because we don't know what else Rett Syndrome is going to throw at us, and for how long all these dramatic changes are going to keep on going on.

Bring on stage 3.