Thursday, 28 August 2014

arghhhhh....... Appointments

I posted here about how our world can seem like one big appointment sometimes. My whole life is scheduled around Jessica's various reviews and assessments. However, even bearing this in mind, the first week of September is ridiculous.

On Jess' first day back at school after the summer holidays, she has no less than 5 appointments scheduled, all at the same time, on the same day, in 3 different (and several miles apart) locations. Needless to say, no matter how I juggle this, she is not going to be able to make school!

Equally, with the best will in the world, I can't get Jess to all these appointments. But cancelling/re-scheduling appointments is not as easy as you may think. Some of the appointments are in clinics that only happen 4 times a year. Others are for investigations that need to be done in order for the results to be available for a future appointment. If they can't be done on the specified date, then the subsequent appointments will also have to be delayed.

And, obviously, every team thinks THEIR appointment should take priority. Even though I fully explain the situation to the various teams-and emphasised that it is not that we are not willing, or prepared to take Jess to these appointments, but it is just logistically impossible, they still talk to you as if you are being deliberately obstructive, and imply that you don't care about your daughter's health.

In the end we have managed to juggle timings, and while Jess will miss school that day she will, in theory,  be able to go to 4 out of the 5 appointments. I say "in theory" because clinics often overrun and have delays, so the day itself will be a bit of a juggling act too. But I think 4 out of 5 isn't too bad!!!!

Sunday, 24 August 2014

Does Society have a responsibility?

This is a slightly different blog post to the ones I normally write. It was prompted by my feeling that many people focus too much on the wrong things when discussing disabled children.

Lots of phrases are bandied around when you talk or read about disabled children - "a burden to their families", "immeasurable suffering", "better not to have been born", "a burden on society"- and often these phrases place an emphasis on the financial cost to society as a whole.

However, illness and disability are inevitably a part of life - they can't be eradicated.

Even if every pregnancy were tested, not all disabilities would be picked up - there are a large number of profoundly disabled children who don't have a diagnosis. And even if you could, there would still be a significant number of people who wouldn't terminate a pregnancy anyway for personal, religious or legal reasons, regardless of a disability or illness in the child.

But supposing research did develop to such an extent that every condition could be diagnosed in-utero, where would it stop? Would it be permissible to terminate a foetus who will go on to develop asthma? Someone who will develop extensive cancer in their 20s? Someone who will develop Alzheimer's in middle age? All these scenarios require a huge amount of input from family and health and social services resources - the cost of 24 hour care for an adult with aggressive dementia, who lives for decades after diagnosis, is enormous. And what about those children who sustain brain damage after a difficult birth, or the adult who is in a car accident?

In the UK, the NHS and various charities spend massive amounts of money treating and saving premature babies, yet a large proportion of babies born early will go on to have some level of additional need or disability. Surely, having spent thousands of pounds on each child whose life is saved, there must be a responsibility to these children to continue to provide them with what they need to live as fulfilling a life as possible? If not, how can the earlier decisions and actions be ethical?

As I said, illness and disability cannot be eradicated. So surely it should be accepted, and possibly even embraced? As a supposedly developed society, we accept that people are different and we have laws against discrimination and laws which promote equal and fair treatment. Everyone, and I mean everyone, can contribute to society in some way- albeit maybe not in a financial way. But money is not what life is all about, or at least it shouldn't be.

Jessica is very much loved by many people. She has family and friends who actively choose to spend time with her because they enjoy her company. They enjoy giving her the attention that she needs in order for her to communicate and interact. If you are prepared to put in that effort with her you get a lot back - laughter, giggles, high fives and active communication. She becomes excited when she meets people whom she likes, and loves being included.

Jessica has taught a lot of people who are involved in her life so much, and has the potential to enhance people's lives hugely, if they are open to it. I know Jess has taught me a huge amount. She puts up with so much, and yes, there is suffering, but she copes so well, and rarely complains. There's a message for all of us in there somewhere.

When you decide to have children, you never think that something like Rett Syndrome will happen to you. But when I look around Jessica's school, it's full of profoundly disabled, yet gorgeous and amazing children who are clearly much loved by their families.

Obviously, I would do anything for Jess not to have Rett syndrome and not to suffer. But she enjoys her life, so who has the right to say that she is not entitled to input from the NHS, Social Services, or other organisations- even if there is an additional cost to society-if it enhances her quality of life?

Rett syndrome is very complex, and it cannot be managed without the knowledge, skills, and input from the NHS and Social Services. Even as a relatively proactive family who do a lot of research into what is best for Jess, we still rely on the experts for advice and help.

The financial burden on families with a disabled child is also huge - everyday items cost so much more - I have just bought Jess a swimming costume for £40 that is suitable for a doubly incontinent child. I would never dream of spending that amount on a costume for Anna. Jess's car seat (a special needs one) cost over £600, and that was the cheapest, most basic model out there. The rain cover for her new wheelchair cost £180. I could go on.

There is no way even the wealthiest of families could afford everything a disabled child needs- equipment, care, respite, therapies such as physiotherapy, the high staff ratios at school....... Again, I could go on and on. And yet, these things are essential for these children - firstly to manage their medical and care needs on a day to day basis, and secondly to give them as good a quality of life as possible.

And while people (and by that I mean me!) moan about how hard it is to get the input that we need- and they are very valid complaints- at least here in the UK we have such a system. I read in horror how families in America have to submit endless insurance claim forms for every appointment and piece of equipment. I have no idea how families in other countries cope.

So yes, a disabled child does cost the rest of society a lot financially. And yes, Jess's life experiences may be limited compared to some other children, but she is one of the most accepting, happy and loving people I know. Let's not see disabled children as a burden on society - as I say, money isn't everything - these children are as much a part of our world as anyone else, so let's take the time to see and appreciate what these children can offer us in return.

Wednesday, 6 August 2014

If Jessica didnt have Rett Syndrome......

At the beginning of our Rett journey, a lot of my thoughts used to begin with this sentence. However, these days it doesn't happen very often. I think our lives are now so far removed from what they would have been if Jess didn't have Rett Syndrome, that now I have no idea what our lives would actually have looked like.

Would I have returned to work, and continued my career? Almost definitely - in some way or another. Would we have had a third child? Possibly. And the little day to day things- would Jess have had sleepovers and play dates and parties without us needing to be there? Probably. Would I have been able to have a night away with my friends? I expect so. Would weekends and holidays been easier to cope with? Yes.

But like I said, we are so far into this Rett Journey ( and yes, even after just three years, I feel qualified to say that) that this life I am describing above (and the life I envisaged for our family) is so alien and so unimaginable to me now that it rarely even occurs to me to try and envisage what our life would have been like if Jess didn't have Rett Syndrome.

But this last week was slightly different. We were in Devon staying with family, and we took the girls to the beach. It was a lovely sandy beach, with shallow calm sea for miles out from shore. However, it was low tide, and the sea seemed miles from the beach. I took Anna down to the sea edge, and she loved it. It was the first time that she has properly been to a beach where the water was warm enough to play in, and she spent hours running in and out of the water and playing in the waves. It was lovely to see her enjoying it so much.

However, it also upset me, because in another life, if Jess didn't have Rett Syndrome, I could imagine the two girls playing together, and knowing how much Jess loves the water, I know she would have absolutely loved it. It was a shame because it meant I didn't fully enjoy the experience with Anna. It was a bittersweet moment.

I was determined to get Jess down to the sea, but it just seemed so far to carry her with the sea at low tide, and pushing her wheelchair all the way through the sand was an impossibility. But with the help of Jess' Grandad, we got her there, and she floated around in an inflatable dinghy with Anna pushing her.

It wasn't the same though, as it would have been if Jess didn't have Rett Syndrome.