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:

http://www.changing-places.org

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.......


Thursday, 6 November 2014

Holidays.....

School holidays can be hard, but we find the best way to spend the shorter ones is for the four of us to go away together. So, this half term, we rented a cottage in the middle of nowhere in north Norfolk.

We have previously taken Jessica abroad, but since her condition became harder to manage, in the last year, we have stayed in the UK.

Holidays with children always need a bit of planning, but especially so with a disabled child. The first challenge for us is deciding where to go, and finding accommodation with a layout that works for us. Sometimes, we find a cottage first, and then research the area; other times we have chosen the area first.

For the holiday, it has hard to meet the whole family's needs. On one hand we have a hyperactive 2 year old, who just wants constantly to climb things (anything and everything!) And then we have Jess who has all the limitations of a girl with Rett Syndrome.

For the accommodation, it has to be wheelchair accessible, ideally all on one level with space for Jessica's wheelchair in all the rooms. Other things we need to consider are the bathroom and how we will bath/shower her, and what equipment we need to take to be able to use the bathroom. Also, in the bedroom, how are we going to manage Jess in bed without her electric bed with extra high sides. Sometimes we have put her mattress on the floor with pillows underneath it to raise her head (to minimise her reflux). If there isn't room for this, we have a special needs travel bed which can be fitted onto a normal bed and will stop her falling out, but this has its own complications.

Then comes the planning - ordering oxygen to arrive before us, making sure we have all Jess's medication ordered, arranging for the feed for her gastrostomy to be delivered if it can be.

It is impossible to pack lightly with a disabled child. The amount of supplies and equipment we need to take with us fills the car- oxygen cylinders and masks (for the journey) oxygen monitors, breathing monitors, a video monitor, Jess's sleep system, all her feeds, giving sets (if not able to have them delivered), syringes, medications, stethoscope, thermometer, enough nappies/pads to last the holiday, food blender, food thickener, bibs, bath seat... the list goes on and on.




One thing that we hadn't considered was that staying in a very rural area meant that we didn't have a consistent mobile phone signal. Fortunately, the cottage was close to a farmhouse where the owners lived, and they were very happy to lend us their back door key so we had access to a landline to call an ambulance if we ever needed to (which fortunately we didn't!). I didn't like the image of us running around a field in the middle of the night trying to get a signal to dial 999, so I was very grateful for this.

We had a great week, which we all enjoyed. One thing we all, as a family, have in common is enjoying being outdoors - albeit for different reasons. So we planned lots of trips to places like nature reserves and wildlife parks, which tend to have something for all of us, including some great play/climbing equipment for Anna. We managed to find a nature reserve with lots of wheelchair-accessible play equipment, a wheelchair-accessible narrow gauge steam train and a tour boat on the Norfolk Broads which had a wheelchair lift.

Another highlight of the week was going owl spotting in the evenings - looking for the resident barn owl on the farm we were staying at - both girls enjoyed this.

This was a much needed holiday, and we all came home feeling rested. I have so many lovely photos from the week, I can't put them all on here, but here is a selection:
















Tuesday, 7 October 2014

The good and the bad

I haven't blogged for while- that is to say I haven't posted for a while. I have however written lots of draft posts, I just haven't pressed "publish" yet.

When I first started this blog, a friend (who is well known for being quite blunt!) said my posts looked like I was trying to find the positive in everything, even though everything sounds really terrible! But now, those who are privy to reading my draft posts, say that most of my posts are a bit depressing, which is partly why I haven't published them.

This brings me to question why I blog. Is it as an outlet for myself? I definitely find it very cathartic. But if I just did it for that, just writing a diary may have same result. Do I blog to make contacts in the Rett/special needs world? Is it to provide information and support to other families going through the same or similar things we are? I guess it is all of the above really.

But I think a balance is needed. I wouldn't want all my posts to be all happy and cheery, going on about how great life is and how well we cope with it all - because that is not even close to the truth. Equally, I don't want all my posts to be moaning and complaining about how difficult everything, as of course there are good times, but there would be no point to this blog if it didn't represent our life- both the positive and negative.

There is no denying we have had an extremely difficult year, and we continue to be challenged by all that Rett Syndrome throws at us (two ambulance trips to hospital in the last two weeks being a good example!) but I think the reason I am writing so many negative draft posts may be more reflective of my state of mind than actual events.

Many good things have happened in the last few months and I think I need to remember that, rather than just feeling completely overwhelmed by everything.

So here is a general update from the last few months - both good and bad!

Jess got a new wheelchair, which is great. While I wasn't really aware of any problems with the old one (apart from the fact she had outgrown it!), this one suits her much better. It provides her with much more postural support, and most importantly, she was able to choose it in pink! It is a Caps 2 wheelchair.




We had a good summer, and while I think we all, Jessica included, were glad to get back to a normal routine, the holidays were good. We had a great balance of seeing friends, and staying with extended family, as well as a family holiday with just the four of us.








This was Jess' favourite view - she loves being surrounded by trees.
 
We got our new wheelchair-adapted car in September, through the Motability Scheme. This has made such a difference to us. We unfold the ramp, and wheel Jessica's wheelchair in, so she sits next to Anna. No more lifting Jess in and out of the car, and then spending 15 minutes taking the wheelchair apart and lifting it into the boot. Soooo much easier.
 



Please don't worry about how grumpy Jess looks in these photos. Two minutes previously she was going mad, giggling and dancing to Pharrell's song "Happy"!!

Jess has also started going for overnight stays at the place where she goes for respite care. Although Social Services eventually agreed to pay for one night a month, she wasn't able to go until the staff received training in how to administer the oxygen, in a case she needed it. Now this wasn't as simple as you might think, as the place that Jess goes to for respite is just over the boundary in a different London borough to the one we live in. And nurses and therapists are not allowed to cross local authority boundaries, so it was not clear how this training could be achieved. In the end, it was decided that if the staff from the respite centre could go to Jessica's school and the school nurse would provide the training. But by this point, it was July (we hadn't had any overnight respite care since December 2013) and the schools were breaking up for the holidays, so the training couldn't happen until September.

However, Jess has now had two nights there - and she loved it both times. The staff rang me in the evenings to say she had gone to bed laughing and giggling both nights. This has provided us all with much need breaks, and me with some much needed sleep. I cannot emphasis how much this regular break is needed.

We are moving forward with the very stressful process of getting the house adapted. I will add here that it has only been so stressful due to the dealings we have had with the adaptations department in our local council. We desperately need the adaptations as I am really struggling lifting Jess and carrying her up the stairs now. This process has been going on nearly a year, and eventually I ended up contacting the head of the department as we had completely reached a dead end in the decision making process. Fortunately, he managed to get things moving again, and even advised us to put in a formal complaint once he realised the extent of the problems we have been having. So the builders start next week (which is very exciting) but we are still arguing with the adaptation department about certain things, even at this late stage. Argggghhhh.......

With regards to Jessica's health it has been a good summer. One problem that got worse over the summer holidays was her reflux, especially when she was wearing her rigid brace. In the end, the decision was made to leave the brace off until the reflux is sorted as it was causing her (and everyone else) too much distress and it was too dangerous to risk her aspirating and getting a chest infection. By coincidence, her foot splints were also sent away to be adjusted over the summer, which meant we didn't have to strap Jess into lots of hard plastic during all those hot weeks in August, which was great. For the reflux, Jess was seen at Great Ormond Street last week, and the decision was made to change her gastrostomy to a jejunostomy. The theory behind this is that everything that currently goes through the gastrostomy will enter the gut further down, in the jejunum, and therefore be less likely to come back up again! It will also mean that there is more room in her stomach for everything she does take orally, meaning there will be less pressure in her stomach. I really hope this works and we don't have to look at more drastic solutions like surgery. And while I don't like Jess having to wear the rigid brace, I don't want her to be without proper postural support for too long either, as the longer she can't wear the brace due to the reflux, the more chance there is of her scoliosis deteriorating and her needing major spinal surgery in the future.

On the downside, Jess has had a chest infection (probably due to aspiration) which was the reason for one of the ambulance trips to hospital. She has also started having seizures in the day. Jess has always had odd neurological episodes at night, and was formally diagnosed with seizures last December. Jess was started on Epilim, which was having a good effect. She has had a few serious seizures (including where she stopped breathing, which is why we have oxygen) but they have ALWAYS been at night, when she is asleep. However, the last few weeks she has been having a LOT during the day. We have now got rescue medication (Buccolam) to administer if they don't stop after 5 minutes and we have to make sure this and the oxygen are with Jess at all times. The other day, I was on the bus with Anna, when the school rang to say they had just called an ambulance for Jess, as she had a 4.5 minute seizure and hadn't woken up. Not great. She is having an EEG this week, and an urgent epilepsy appointment so hopefully we will get it all under control soon. I am NOT liking this new development.

So there you go. The good and the bad. And actually writing all this down has made me feel a bit better about still feeling overwhelmed by it all, as actually, most of the good stuff has only happened in the last few weeks (new car, respite, date for the builders starting, decision regarding Jejostomy) so maybe it's a bit soon for me to be jumping for joy about it all. Add in the dispute with the adaptation department, the chest infection and the seizures, it is still a lot going on. Maybe, someday, life will settle down. I may even find it a bit boring if it does. But I can't wait for boring!!!!












Thursday, 11 September 2014

Hello!


Unlike some Rett girls, Jess had never spoken before she regressed. She very, very occasionally has said the odd word, but I could probably count the number on one hand.
What I will say though, is that they have all been appropriate and in context to the situation. She has said "dog" to a dog, and "Daddy" to her daddy.

Then, this weekend, Jess said "hello", in response to me sitting her on my lap and saying "hello Miss J". I don't know who was more surprised- me or her! I did a quick double take, and then thinking I might have imagined it, asked everyone else in the room if they had heard it, but they hadn't.

But I know I wasn't imagining it, not least due to the expression of both surprise and pride on Jess's face! Every now and then it seems as if all the neurons and proteins in her body line up correctly, if only for a few seconds, allowing a word to slip out, or a hand to do what she wants it to.

Her voice wasn't what I expected though. Obviously I am very familiar with the numerous different sounds she makes, and can often make a good guess as to what they mean. But hearing her say an actual word was different. She sounded very self-assured and grown up. It was a good reminder that she is in there- under all that Rett stuff is a little girl, who understands the world around her, and is growing up fast.

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.

 

Sunday, 27 July 2014

The best day....

On the second day of the school holidays, we were invited to a friend's house for an all day get-together. There were numerous other families there - some we know reasonably well, others less so. But everyone there had a child with a disability or special needs with them, as well as numerous siblings.

When we arrived, this was the amazing set up in the garden - both Jess and Anna were so excited!



There is something unique about getting together with other families who have children with a disability or special needs, and of course their amazing siblings. Despite the children having a wide variety of conditions and levels of disability/ability, everyone just "gets it".

It is a very comfortable environment to be in, knowing that everyone around you understands and no-one is going to judge you on anything (even letting your youngest child survive the day on crisps and cherry tomatoes as you are having too good a time to spoil it by having a fight. Or is that just me?!) We all had a great day.

Jess spent most of the day in the paddling pools. Her favourite was the biggest pool. Our friend had an inflatable seat, and we put Jess in it in the late afternoon and she literally just floated around the pool for over an hour.

Jess has always loved the water - swimming, baths, you name it, so this was always going to be something she would enjoy. However I think what she loved best about this was just how included she felt with the other kids. She was in the middle of the pool, surrounded by lots of other children who were splashing, screaming, coming down slides and bashing into her, using water pistols around her - and she loved every minute!

Everyone there was in awe of just how happy she was, and she was still laughing and grinning about it when I put her to bed that night.  It really was one of her best days ever! I can't express how grateful I am to our friend for hosting such a special day, and to all the other families for making Jess feel so included.





The only problem is, it was only the second day of the holidays. I'm not sure how we are going to beat that in the next six weeks!

Monday, 14 July 2014

Changed Expectations



Jess turned 5 this week,

We don't have a great history with her birthdays- her first went ok, we had a party for her although even then I remember having conversations along the line of "she'll catch up" and "all children develop in their own time". For her second birthday, Jess had only been diagnosed the week before, so we were very glad we hadn't arranged a big party as we really weren't feeling like celebrating. For Jess's third birthday, Anna was only 8weeks old, and was in hospital with meningitis. For Jess's 4th birthday last year, we went to Peppa Pig world, and I wrote here about how that didn't go to plan.

So this year, I didn't have high expectations. Her grandparents were here, and we had some lovely presents ready for her to open after school.  Her dad took the day off work so we could do up her bedroom as a surprise for when she got home.

As a parent, you always want special days - Christmas, birthdays, family events - to be perfect for the child, but with a disabled child there are just so many factors that are out of your control. Previously I have been quite upset when things haven't gone to plan, or Jess has been unwell, too tired or unhappy with events.

But this year was different. Jess had a lovely day at school, with a birthday party and even managing to eat some birthday cake. However, this all exhausted her, and when she got home from school, she was not all interested in opening her presents, or blowing out her candles- she made it very clear that she just wanted to chill out, watching CBeebies. And you know, that was ok. She opened a few presents that evening, some more the next morning, and the rest the following evening.

She did however notice her new bedroom layout and decoration. Despite being very tired, she gave me a massive smile and kiss when she saw it! And the next evening, she really focused on all the changes and was very excited.

I obviously recognise that it is not your average child who isn't interested in opening their birthday presents, but it didn't upset me. I was glad she had such a lovely day at school, and whilst it wasn't how I had planned or hoped the day would turn out, it was how she wanted it to be. Which is what it should be all about.  Another stage of acceptance maybe?