Wednesday, 31 December 2014

A new start....

December has been a bit of a whirlwind here - some health issues for Jessica (I will give a medical update soon in another post, as quite a lot has changed recently), although nothing too serious in the grand scheme of things. The adaptations to the house are nearly complete - I can't believe I am actually able to write that (!).  I will also do a separate post on that subject when everything is finished - it is very exciting (is it a bit sad that I can get so excited about ceiling hoists???) And of course preparing for Christmas.

This is the first year that Anna has had any understanding of Christmas - well, I'm not actually too sure exactly what she understood, but she has certainly been very excited! We have had lots of outings - we took Anna to Winter Wonderland one day when Jess was at her respite care home  (we have taken Jess in previous years, but she hasn't always seemed to enjoy it - I think she gets too cold). Anna had a great time:

We took the girls ice-skating, Anna was a natural, and Jessica just found it hilarious when we went really fast with her:

We went to a sing-a-long version of the Disney hit film "Frozen", which both girls loved. and there has been a lot of singing going on ever since:
Jess made a very cute "reindeer" in her school concert:

We went to a Christmas party - complete with a bouncy castle:
I took Jess to see the musical Cats: in London's West End, Jess even got to stroke a "Cat"!!:
 There have also been pantomimes, Christmas shopping, Christmas dancing, and winter walks:

It is now the end of 2014, and I can't say I've enjoyed it very much. It has been a very difficult year for many reasons - Jessica's health has been a major concern and put a lot of pressure on us all, and there have been lots of negotiations with Social Services to get access to the support that we are all entitled to, and desperately need. All this has had such a negative impact on our whole family, from which we are still recovering.

But, like any New Year, in a sense 2015 is a new start. We have some respite care in place for Jess, which is a life-saver; and the home adaptations are nearly complete. Jessica's state of health remains very unpredictable, but there is nothing we can do about that apart from being as prepared as we can for the inevitable emergencies (i.e. have a hospital bag packed at all times, ready to go etc).

Sooooooo...... my resolution for 2015 is for us to LIVE. Not be so overwhelmed and completely consumed by Rett Syndrome and its complications as we have been this year. I want time for us as a family, time to re-discover who I am, and to have a focus beyond Rett Syndrome. I want to spend some time with my lovely husband, and to enjoy both Jess and Anna at the various stages they are at.

Too much to ask? I'll let you know!

Happy New Year to you all, and may 2015 be happy and healthy for all.  

Monday, 8 December 2014

Changing Places

As Jessica's parents we have always been very committed to making sure Jess lives as normal a life as possible, with all the experiences that she would have had if she didn't have Rett Syndrome.

However, as she gets bigger and heavier, this is getting a lot more difficult for many reasons.  One of the most significant reasons is the challenge of changing her nappy or putting her on the toilet while we are out.

Although there are numerous disabled toilets around, not many are suitable for people (children and adults) with profound disabilities. Many disabled people ideally need a changing table (ideally height adjustable), a ceiling track hoist and a toilet with enough room for a carer either side (as well as the facilities being clean, of course). Not just a large room with a dirty toilet in it, which is how a lot of disabled toilets present themselves.

Once Jess became too big for baby changing facilities, we used to be able to change her in her wheelchair, as the seat was able to be reclined. However, her new wheelchair doesn't do this - it tilts but keeps her in a seated position, which makes it very hard to change her on it.

So now when we are out, it is really difficult. Jess can't stand or weight-bear reliably, although we are doing all we can to improve this, as this would make life so much easier.   There is rarely anywhere obvious to lay her flat. We take a large changing mat out with us, but I refuse to lay her on the floor of a public toilet - the floors  are rarely clean, and Jess rolls over without warning and flings her arms and legs in all directions. I do not want her rolling around on dirty toilet floors. There will also come a point soon (in not the too distant future) when I am unable to lift her safely from her chair on to the floor and back again.

Which leaves us where? Only able to go out for 2-3 hours at a time? Not able to go far from home? How does that fit with us wanting to give Jess as normal childhood with regular experiences? Most children are able to have days out and to stay away from home for more than 2-3 hours.

Consequently, I have been asking everyone we meet - doctors, therapists, carers - how we can overcome this, and I was told there were no easy answers but to have a look at the following website:

This is a campaign for toilets in public areas which meet the needs of those who need one or more carers, a changing bench and a ceiling track hoist. If these facilities were easily available in public places such as airports, shopping centres, train stations etc, I cannot tell you the difference this would make to our (and many other people's) lives.

Monday, 1 December 2014

A token gesture....

This week I started thinking about where we can take the girls in December to meet Father Christmas, and generally build up the excitement for the festive season. A friend suggested a certain festive "experience", which while very expensive, sounded amazing. I'm not going to identify the company, as I only want to highlight the issue, not name and shame.

Now, nearly all places such as farms, zoos, theme parks etc offer a discount for a disabled person attending; we often pay for Jess,but then generally an adult can be free, to act as her carer. For the cynics out there who may feel this is unfair, I do think it is justified. If I have both girls with me, I would always take another adult with me (often a nanny or a carer for who we are paying for, if my husband is at work) as there is no way I could ensure Jess' safety (i.e. managing a seizure, setting up her PEG feed etc) while also looking after a hyperactive toddler. Indeed, I can't even manage to push both the wheelchair and a buggy by myself!

So I was looking on the website of this "festive experience" to see how we booked tickets for a disabled child, and what discounts they offered. They did have a "disabled day" where they offered a carer's discount, but this day was already sold out (I don't know how many "disabled tickets" were available for this day) and besides we would never have considered it anyway as it was a weekday during term time.

I emailed the customer service and asked what the arrangements would be for us to go on a regular day (not the "disabled day") one weekend. Their answer was that the carer's discount was only offered on the "disabled day" as that was the only day they felt it suitable for disabled people attend and be able to have their needs met. I replied, challenging the fact that this means any disabled children of school age can't attend and benefit from the carer's discount. Please note that we are not talking a small amount of money here- the entrance fees are £80/person for everyone over the age of 1year (I said it was expensive!). They didn't have an answer for this.

The "disabled day" feels like a complete token gesture- when challenged, they can say "yes, we welcome disabled people, we put on a special day just for them". But that is all it is. A token gesture.  Surely it is up to someone else (not this company) to decide if someone's needs can be met on a regular day? And while I know many people and children benefit from going to attractions on "disability days" (and indeed would only consider going on such days),  there will equally be many who can cope very well on on a regular day, and would choose to do so.

If this company were genuine about welcoming disabled people, they would offer the carer's discount on every day. At the very least they could have more than one "disability day", and have them at weekends and during the school holidays so what must be the obvious target audience (school age children) can go with the carer's discount. But they know that they will lose potential income that way.

I feel the spirit of Christmas has been lost somewhere here.......