No More Birthday Parties

We moved into our house 9 years ago summer. It was shortly before Romany’s 4th birthday, and I threw a party for her with a few family members. She really enjoyed it, so despite not having had birthday parties for her in the past, I decided to throw her another party for her the following year, inviting friends as well. And nobody came. The year after she had spent her first year in a special school and again I threw her a birthday party, this year inviting her school friends too and some of my friends who have children around Romany’s age and were familiar with her. Again, nobody came.

I started to be a little more realistic – perhaps parties for Romany weren’t an option. Maybe people were nervous about coming because their children (in the case of Romany’s classmates) have their own difficulties and find parties too much for them. Romany’s best friend was on holiday – she was the only one to even RSVP if I remember correctly. Perhaps I didn’t give people enough notice? Maybe some people were worried that their children were too boisterous or that they might say something that offended me. Perhaps they worried about their children being hurt by Romany – it’s not as if that’s impossible after all. Or maybe people just didn’t want to come full stop. Whatever the reason, that was when I made a decision. No more proper birthday parties for Romany. We still have little parties for our family and we still have a cake, sing happy birthday and blow out candles for Romany. We just don’t invite other people to join us any more. Often we take Romany out for the day somewhere she’ll really enjoy as well. She doesn’t miss out – we celebrate in our own way – and it stopped hurting years ago now. But there is one thing that still hurts…

It’s not just that we don’t throw parties for Romany, she also doesn’t get invited to parties. In her lifetime she’s been invited to three parties, all of which we went to and all of which Romany thoroughly enjoyed. I think facebook is the thing that makes it hurt all the more – I wouldn’t even know how often Romany is overlooked if there weren’t the posts there to show me. Unfortunately her exclusion is practically advertised, which is hardly the fault of the person posting, but it still stings.

The thing is, I do get it. and I don’t actually resent it, perhaps surprisingly. Romany sometimes finds groups of people overwhelming, especially if things get excitable. If that happens I have to find a quiet space or take Romany home so she’s out of the situation and can feel calmer, which could mean her pretty much missing the party anyway. There is also the fact that Romany is strong and she can be aggressive. Putting her in a room full of children who are likely to be very giddy increases the risk of her lashing out through panic or confusion. It might not even be aggression – Romany has scratched, hit, pulled my hair and bitten me while actually trying to be affectionate. It’s a lot to expect parents and their children to put themselves in a position where those kids could get hurt.

Then there’s the food issue, which I absolutely understand. It can be very difficult to work around Romany’s dietary need because so much food – especially the food kids want for their birthday parties – has wheat or dairy in. Of course, they can’t put a full spread on that suits Romany – it costs more and I’m guessing most people imagine it tastes pretty foul too. It doesn’t – I have put on a full party tea for Romany every year for the past 7 years and enjoyed every mouthful. Pizza, crisps, chips, various pasta salads or suchlike – it varies every year – plus buns, biscuits and of course a delicious cake. As I said though, it doesn’t come cheap. Anyone with a child who has any type of additional needs knows that certain labels turn up the costs (disability, special needs, sensory – it all adds to the pound signs in the eyes of the company making whatever product they’re selling) and its exactly the same for dietary needs. A bag of pasta that would feed a maximum of 5 or 6 people a single meal is around £1.50 rather than the 50p or less it costs for a normal pack of pasta that’s the same size, for example. I’d actually bring food from home quite happily, but there’s still the pressure that Romany might get hold of someone else’s food. As much as it’s my responsibility to stop that from happening, I realise that any parent would still worry – eating the wrong food can cause agonising pain for Romany and my friends know that. They’d feel terrible if she got hold of food she shouldn’t, even though I’d never hold it against them – it happens and it can’t be helped.

Another reason for the lack of invitations is me. Socially I’m very isolated these days. I have 3 days through the week where I can meet up with people, and one of those days is taken up getting some valuable time with my mum and visiting my grandma who is in the late stages of Alzheimer’s disease. So two days isn’t much time to keep our social life going, and everyone has things to fit into their week, so I don’t really see many friends any more. I don’t hear from people often either. After a while, if you’re taken out of your social circle by the circumstances you’re in, people tend to “forget” you. Not because they don’t care, but because you’re not really current in their day-to-day life, and that means people don’t think to get in touch very often. Of course, when I mention that I have a day where people remember me and get in touch, but it doesn’t last. Occasionally I feel a bit resentful, but mostly I just accept that it really is just one of those things. And if my friends and I are out of touch with each other’s lives, it stands to reason that they’d not think to give us a shout for parties either.

There is also another consideration… Maybe the kids themselves don’t want Romany there. I stopped taking her to visit friends quite some times ago for all the same reasons that we don’t get party invites. I’m not going to sit there telling my friends children they can’t run, play and be excited because Romany is there. I don’t want my friends to worry about whether they have snacks in that Romany can have so she doesn’t get upset that all the other kids have crisps and chocolate. As kids get older they want to choose who is at their party, not have the decision made for them, and why would they want somebody they don’t normally see at their party?

I’ve never had more than one or two friends who visit us at home regularly, so we stay happily contented in our little bubble. It’s not perfect, but we manage and – perhaps surprisingly – we’re happy. Romany can come first and I don’t have to explain to anyone, make excuses, apologise – we just live our life the way we want to live it. That’s why it’s easy not to be offended or hurt all of the time. I’ll admit, yeah, I do sometimes say to myself “How come if I want to see friends I’m expected to go to them every time, or I’ll never see them?” but those moments last less and less time now, because I have less time to contemplate it anyway. And if I’m honest, I’m starting to care less and less because there is so much more to worry about. It sounds heartless, but would it be better to dwell on it? Feel wounded every time people exclude me from nights out or parties or days in town? That’s a path I’m not going down if I can help it. It can only lead to people feeling upset, surely, and definitely isn’t going to help matters!

I’ve stopped doing anything for my birthdays too – I don’t really drink any more, so it seems a little pointless to have a night out. The last time I went out for my birthday was about 3 1/2 years ago and I enjoyed it, but I wasn’t surprised to see that only a handful of people showed. I was already slowly slipping into isolation because things were starting to get difficult again with Romany, and taking her out was becoming much harder work, so my contact with friends was already slipping. Now I think that without facebook I wouldn’t even know what’s happening in anyone’s life. It would be so easy to be bitter – if I’m feeling down I’ll admit that it can creep in unexpectedly – but for the most part I’m fairly contented. I miss my time with my friends, but that’s just something I’ve learned to accept rather than resent. I’m sure there have been times in my life where I’ve let friends down myself – everybody has at some point – so it would certainly be hypocritical of me to hold it against anyone.

After posting this is possible – likely even – that worried friends will contact me quickly to try to arrange to meet up, concerned that I might be referring to them. It’s possible that there will be an influx of party invitations, but that depends whether there are any birthdays coming up in the next month. The buzz will die down within a few days, and we’ll settle back into the routine we’re in now, and that’s got to be a good thing. There will also be people out there whose immediate reaction is to say think “What a bitch!” because I’ve been so honest about what really goes on on. Seriously though, I’m a bitch because I’m honest? Or do those people actually feel guilty because they’re the ones who completely forget about until I post something on facebook, and prefer to be angry with me rather than honest with themselves… Or perhaps they’re the ones who don’t even see my posts any more because they never comment, and we all know about the dodgy facebook algorithms cutting posts out of our newsfeeds don’t we? If people feel guilty and turn it into anger, that’s a shame, but it’s not my fault…

The thing is, Romany is perfectly happy with how things are. She likes the way we live our life and for a lot of the time she’s very contented. That means that, for the most part, so am I. I’ll admit there are moments where I have to put my phone down and stay off facebook for a while. Despite the fact I don’t often go on nights out, it’d be nice to still be invited once in a while. Don’t get me wrong, I have a couple of friends who have invited me out, it’s just a case of finding the time to fit it in around when I have Romany, and I know I’ll have fun when we do go out. I’ll spend the day after in hell, but once in a while I can cope with that. And my best friend absolutely always has time for me. We’ve had to concede that days out with both our girls aren’t practical any more, but in the future we’ll be able to pick those days back up and start getting out more again. And we do still get time to meet up in that little window of time I have free…

I do wonder how things would be different if Romany didn’t have Rett Syndrome, but those thoughts pass quickly. It really doesn’t matter what it would be like – that’s not my life so how is thinking like that going to help? Our life is different. People rarely visit, but the handful that do are always welcome and almost never turned away (obviously there are exceptions, but they’re very few and far between). I’ve never really had a lot of friends who come to see me, and less so the older Romany has got, so it’s not been a sudden change.

I wonder, too, if there are people out there thinking “She shouldn’t post things like that – it’s not fair to make people feel guilty” but that’s not why I posted. Let’s be honest, I’ve repeatedly said I understand a lot of the issues people have, and I’ve also said that for the most part I don’t get bitter about it. If I wanted people to feel guilty I’d talk in detail about the brief periods where I do feel resentful, but what would a guilt trip achieve anyway? This blog was, and is, somewhere that I’m probably more honest than I am elsewhere. So I acknowledge that less positive side of my life is there, because it’s a part of who I am and what life with Romany entails. I’m actually extremely lucky in my life and also happier than I have ever been before. I’m pretty sure any of the friends I do see could tell you honestly that this is the happiest they’ve known me. So I’d rather not have people trying to offer unnecessary sympathy, or have people panicking and messaging me to arrange to meet up because they feel bad. The fact of the matter is that I don’t contact people much any more either. I stopped a while ago – I suppose it was a bit of an experiment to see who I still heard from – and my phone has never been quieter. I thought it would bother me, but it just didn’t. It made life much simpler in the end; I was often upset because I kept making an effort to contact people, kept trying to arrange to meet up, but more often than not was let down. Life is simpler now, and it’s happy. Of course I miss seeing my friends and hearing from them – I’m not suggesting I don’t care – but it becomes much easier over time. And I still care just as much and just as deeply as I always have. It’s a shame that life has got in the way of so many of my friendships, and I could say “If they really cared they’d be better friends” but considering I don’t contact people much any more I can hardly complain.

The thing is, life is good. In fact it’s FUCKING GREAT thank you! I have an amazing daughter, a wonderful son and an incredible fiancé. I have our house, our crazy cats and dopey dog. I have so much more happiness than many people do, so what on earth would complaining do?  I’ve never had so much love in my life. I’m lucky, for a million reasons. Who cares about birthday parties? The only party I’m planning is my wedding, and of course my friends will get an invitation – I want the people I love to be there! My friends are still my friends, regardless of whether I see them – I know they still care about me. It’s gonna be an interesting day, mostly geared around one particular young lady, and it’s going to be a hell of a lot of fun!

Anyway, here are some pics of Romany’s 5th birthday party – just cos it was a LOT of fun! 😀

 

Just when I wasn’t expecting it

Yesterday we had Romany’s appointment with the paediatrician, which I’d moved forward because of the various problems Romany’s had in recent weeks and months. I had a long list of issues to raise and went through each of them one by one with the doc asking questions here and there. He didn’t say very much, although he did occasionally interject with “Oh so she can do…” about a couple of things. I left feeling a bit dejected. I’d been determined to go in with a “…and you will damn well sort something!” attitude, but a certain young lady had other ideas. She was quite the handful, despite having her big brother there providing an invaluable extra pair of hands, and I wasn’t in any position to push anyone for anything.

We have a borrowed wheelchair at the moment, and some days Romany even need it for short distances. She definitely needs it more than we were expecting her to. Some days it’s even a struggle for her to move around at home, and if she’s under the weather it can be asking to much for her even to stand unaided. I was worried sick that the paediatrician was going to say she wouldn’t be given a chair – it seemed crazy that he’d do that despite being aware of how difficult thing were for Romany now. As it was he didn’t say very much at all about it.

Her tremor was an issue he seemed to barely acknowledge as well, despite her no longer being able to use cutlery and having such poor hand control and balance. Some days she struggles to sit safely in a chair without arms to stop her wobbling too much and falling. It’s affecting literally everything so it seems madness that it might be overlooked.

Breath holding is a worrying issue for us, although so far it’s not been as serious as it could be. It’s the fact that it happens during the night that causes me concern, but because it’s not severe he simply didn’t seem concerned. I was pretty stunned by that – surely the fact she has stopped breathing on one occasion would be cause for some degree of concern?

Having suspected for many years that Romany suffered seizures, but having no evidence of them, has been a huge frustration for me. Years ago I spoke to Romany’s then-paediatrician who dismissed my concerns, but since Romany’s seizure last November and the absence seizure in February that’s been on my mind again and I was asked for a few details.

Next to talk about was her swallowing a lot of air, which often leads to bloating and pain, and a quick prescription was run off for a medication similar to gaviscon. Hopefully that will see an end to one thing and pain for Romany – at least we achieved something!

I mentioned her excessive salivation as well, because it is common at night for her to face, hair and pillow to end up very wet. As yet it hasn’t caused any major problems, but I wanted to ensure that the paediatrician was aware in case that changed. Romany has always dribbled more than is normal, but recently it’s definitely got worse so I’d rather be cautious.

Although the paediatrician wrote a lot down and asked questions there was virtually no feedback from him. I wanted to push for more, but when he said he’d arrange another appointment for 2 months times I knew I’d at least be able to tackle things further then. Romany was becoming very tired and really wasn’t coping well any more, so I had to get her home. Everything is so exhausting for her lately and she finds it very upsetting, particularly when we’re somewhere unfamiliar. I knew we’d still have a wait at the pharmacy for her prescription, so we had to head off. It was a good thing we did – poor Romany was so tired once we got home that she was falling asleep within half an hour!

I was left feeling disappointed – I didn’t seem to have achieved anything. Without a wheelchair there would be no days out, and the one we have on loan is an adult chair so there’s almost no support for someone like Romany, who’s very small for 12 years old. Without something to help with her tremor I would be stuck watching the frustration build when Romany just simply couldn’t make her hands do what she wanted, or watching her shake so badly she can’t sit in a chair without arms to stop her from falling. And was I going to spend the rest of her life on a knife edge every night because of her breathing?

It’s awful at times, having to deal with all the various professionals. It’s a constant battle for the right support and at every turn you end up feeling like you’re not being listened to. It’s unfair that it should be such hard work just to get things to help Romany to have a little less to cope with. Every parent of a child with special needs has felt that way at some point, be it towards a teacher, a GP, any number of specialists – it’s the one thing we all have in common and none of us want it.

This morning Romany was having another bad day. Walking has been a real struggle all day and she’s tired out. I couldn’t tell you why for sure, but I know there could be any number of issues – she could have simply slept badly, she could be in pain, she could have been feeling hormonal… Regardless of why, she’s not the happiest. But I’ve still been showered in hugs and kisses (even if they do often hurt!) interspersed with something akin to Chinese water torture. Romany taps, nips and scratches me for hours on end. It’s not always painful, its just doesn’t stop. Constantly. For hours. My brain may well be slowly melting….

In the middle of all of this, the phone rang. Hardly anyone rings my landline other than the occasional salesmen (they don’t like me very much…!) so I probably sounded pretty grumpy when I answered. To my surprise it was the paediatrician, who was calling to check some details and ask a few more questions about the things I’d spoken to him about. He told me he wanted as clear a picture as possible when he sat down to discuss Romany’s case with his colleagues. I was rather taken aback – I’d walked away from yesterday’s appointment feeling completely pessimistic about what would happen next, but I had proof that he was definitely planning on taking action. He told me he was referring Romany to the physiotherapist to be assessed for a wheelchair and was going to work out the best thing to do next with the help of his colleagues. He also offered medication to stop Romany from producing as much saliva, however the side effects included reduced mobility and shaking, along with various other things, and at the moment it’s too much to risk. If the excess saliva starts to cause any more problems then, of course, things might change, but at the moment I’d rather not go down the route of taking more medication.

Another interesting subject came up – Romany’s diagnosis. It turns out that her autism diagnosis was never removed from her file, so her current diagnosis would actually be Atypical Rett Syndrome, Autism and multi sensory difficulties. However, the paediatrician and I agreed that the “Atypical” part didn’t make any sense. Romany ticks all the boxes for Rett Syndrome, whereas Atypical Rett means (the short version) Rett Syndrome minus at least 1 of the essential diagnostic criteria that is required to diagnose Rett. He also asked my opinion about the autism diagnosis and whether it needed removing, which is a tough question. Rett Syndrome does include autism-like traits which means she’d still be treated exactly the same way anyway. So that’s another thing to chat to his colleagues about, although despite it being interesting it affects very little in actuality – Romany’s needs won’t be any different regardless of her diagnosis.

Now it would be a waiting game – another thing we’re already familiar with. We’re waiting for appointments with the physiotherapist and the spinal surgeon, plus the next appointment with the paediatrician. For the most part, though, I’m just relieved to know I’ve been listened to. We were prepared for going into the next appointment all guns blazing, but as it stands there seems to be a lot that’s being tackled, so the next appointment will hopefully just be getting things put in place. I can hope right??

We also have a lot of filming to do so that we have footage to show the paediatrician, from her mobility to her hand control, that will give a much clearer indication of her capabilities that a description ever could. She’s such a cutie though, I don’t mind filming her at all!

I have to admit I had stopped feeling hopeful of anything useful happening at appointments any more. It had all become very much a kind of biannual monitoring scenario – every 6 months we’d talk about how little things had changed, and if I did have concerns they often seems only partially addressed. Imagine my surprise – while writing this blog post – to receive a further call from the paediatrician! Romany is being referred for a sleep EEG (she’d almost certainly pull the wires off if she were awake) and to a epilepsy specialist. An appointment with the geneticist is being looked into because I don’t remember having one and he couldn’t find evidence of one. Even if I had one, I’d probably have a million more questions now than I did straight after diagnosis when we had the first raft of appointments and tests. He’s speaking to Occupational Therapy about her tremor so we can hopefully find ways to help tackle that, which hopefully might make things easier for Romany. He also offered a sleep study to look into her breathing. At that point my head was apparently in a state of deep confusion, because I declined! Thankfully he did say “We’ll leave that for now” rather than saying ok forget it! That’s another phone call to be made… I’m getting by on very little sleep today and it’s showing, but once I’ve spoken to him and arranged that appointment (after slapping myself repeatedly – I do wonder how I get through the day alive at times!) I’ll feel better.

So it turns out the doctor I had doubted is simply a man of few words, but really did take on board every concern I had. It’s a while since I’ve been able to say that! And with that, I’m off to ring the paediatrician back and try to explain why my tired brain got so muddled!

Untitled….

I’ve been unsure for a while whether I wanted to write this post or not. Well, I knew I didn’t want to write it, I’ve more been debating whether or not to write it regardless. Things have become a lot harder here recently, but I was really hoping it was just a blip – I was hoping things would improve so this post would never be written….

I’ve mentioned before about Romany breath holding at night. It’s something she’s been doing through the day for quite a while, but night was always the safe time. Once Romany was asleep I just had to keep my ears open and glance through her door as I passed, whereas now I have to go in to check her breathing several times a night. Most of the time she’s breathing perfectly normally, sometimes she isn’t – it’s impossible to predict. She scared me to death in the middle of the night, choking so badly she made herself sick. She’s never done that before – I thought I was past getting surprised by her symptoms but new ones just keep on appearing… I can’t work out which way’s up. It’s a massive worry for me, but we have a paediatrician’s appointment on Wednesday which hopefully will mean we can get something into place – I’ve no idea what, but anything would be appreciated right now!

Added to Romany’s breathing problems, there are now other issues to worry about. I now know with some certainty that throughout her life she’s had seizures. The paediatrician didn’t recognise them because she appeared to have a degree of consciousness during them, so I was told not to worry. It turns out the episodes I was frantically worried about (despite the paediatrician’s advice) were just what I thought, but I guess it makes little difference now. Those episodes have finished, and hopefully the absence seizure she had in February was a one off, along with the terribly upsetting seizure she had in November 2014. But still, I can’t help worrying – could you?

The other thing that’s become a massive issue is mobility. Romany’s always been unsteady on her feet, but since she was 8 years old she’s not needed  a wheelchair and seemed to be progressing really well in terms of stamina. She could even walk to my parents’ house and back – 3/4 of a mile each way, and uphill all the way back. Amazing!! It was a slow walk every time, with lots of encouragement and occasional rests stops, but she could do it. Yesterday she couldn’t even walk across the room. She couldn’t even stand up. She was at respite last night, and it took 2 people practically carrying her to get her to the minibus. It’s the worst her mobility has ever been, and I never saw it coming. Not yet anyway. In stage 4 of Rett Syndrome mobility often becomes reduced, but I’d assumed that meant we might need a wheelchair in a few years for longer walks and days out. Lately it’s become clear that Romany can’t manage a day out without a wheelchair, but I thought that was as bad as it would get for now. But her legs have let her down three times recently and I’ve been trying to pretend it’s going to be ok, but increasingly the doubts are creeping in. I’d always assumed that if and when her mobility did reduce she’d still at least be able to get around at home, but now I’m wondering. I don’t have any idea what’s going to happen next.

Another factor is Romany’s tremor. You’ve all probably seen footage of Michael J Fox and the heartbreaking struggle he’s having with Parkinson’s Disease. He’s an inspiration to me – he always manages to keep smiling, even poking fun at his tremor. Well, Romany has a tremor too. A bad one, and it’s getting worse. It means she’s struggling more to use her hands, which is really frustrating her, and it’s another factor that’s affecting her mobility. It’s genuinely upsetting watching her struggle, watching a 12 year old girl who’s unable to keep her hands or even her head still. More importantly it’s making it even harder for Romany to do anything independently. She rarely uses cutlery any more when she’s eating at home – she generally doesn’t even try because she’s so tired all of the time now, which exacerbates her tremor. By tea time she’s struggled her way through a whole day – she’s exhausted and it shows. And I’m not going to push her, she has enough to deal with and she loves her food – the least I can do is let her eat however she chooses!

It feels like everything is up in he air all of the time with Romany at the moment. It’s like I’m trying to juggle a million balls, spin a thousand plates and turn cartwheels all at once. It also feels like I have an audience watching it all happen – paediatricians, occupational therapists, physiotherapists, teachers – it feels like everyone is watching and yet none of them are helping me keep everything up in the air and not crashing down to the ground. If I didn’t have my fiancé and son to back me up I’d never cope at all – they’re my lifeline.

When Romany was 14 months old I watched her lose all the skills she had learnt. The handful of words she had were quickly gone, she couldn’t join in with the actions of any songs or play peekaboo. I had no way of knowing why it had happened, and nobody else seemed worried, so I assumed I must be imagining it or maybe even that she was simply bored of doing those things. She still babbled away constantly, she just didn’t say any actual words, so it must just be one of those things… I actually always felt very lucky, when I looked back at that time, that she was so young when she regressed – the heartbreak wasn’t as sharp, because she had less to lose. Although I do believe if the regression had happened later it might have been picked up on more and her diagnosis might actually have come much sooner than it did. When Romany eventually got her diagnosis, it felt like I was losing her – I’d had this apparently healthy little girl, albeit with a lot of problems to cope with, to my little Rett princess with all new medical complications that I wasn’t even aware of. Romany always coped so well though, and so many of the issues associated with Rett didn’t seem to apply to her, so it was easy to stay positive – it felt as though we had dodged a bullet after all. And now it feels like I’m losing her all over again. She’s not the happy little girl she was – she spends a lot of time upset because either she’s frustrated or she’s tired or she’s in pain… She can’t tell me which either. I’m covered in scratches from her grabbing at me, distraught and desperate. The worst thing is, I just don’t know any more how to help her. We have a few tricks up our sleeve – her iPad is an absolute godsend – and it’s always just a case of trying things until something works. But I still watch her suffer every single day. I just hope we get somewhere when we see the paediatrician on Wednesday. I’m not holding my breath though….

Meanwhile, my brave girl will be home from respite this afternoon, and whether she’s upset or not I know I’ll get to see that beautiful smile. It still makes an appearance – she’s still quite happy much of the time. And if she can do it, I can too. It’s that simple! After all, she’s the one with the real battle to face and she’s brave as a lioness. The least I can do is stand right there beside her, and fight with her for every step she takes.

 

Grief, Hope and Fundraising

When Romany was 3 years old she was diagnosed with severe autism and multi-sensory difficulties. Many people seemed to think I should be upset about it, but in a lot of ways I was relieved – I’d been worried for quite a while that Romany’s extreme aggression, lack of speech, inability to walk and all the other symptoms she had were my fault. Was I spoiling her? Was I just a terrible mum?? Getting a diagnosis answered those questions and gave me hope that things would improve. We got a lot of support in those early days and one of the most common remarks I heard was “She’ll improve so much with the right support and therapies” along with lots of reassurances that there was always room for improvement, every single day. I knew it was going to be hard for us both, but I was filled with hope. I was also very aware that autism didn’t necessarily come with medical issues, so Romany’s health was not considered to be at risk.

The first 5 years of Romany’s life were fraught with emotional and intellectual difficulties that we battled through daily. Still filled with optimism we both worked hard to overcome everything we faced. It was a tough decision to move Romany to specialist provision, but it made a world of difference. Being in a school where people gave her so many options to help with communication, mobility and understanding was a breath of fresh air, and helped Romany to be so much more patient and calm. Things were slowly starting to get better.

When Romany was 8 years old she started seeing a new paediatrician, who noted straight away that Romany was grinding her teeth and wringing and biting her hands. He asked if she’d ever had a blood test for Rett Syndrome. I cast my mind back to the raft of blood tests she’d had aged 3 but couldn’t remember what the hospital had tested for – I’m sure the paediatrician told me of course, but 5 years on there was no way I was going to remember. So Romany was referred for more blood tests. Not an easy thing to work around – she wouldn’t be exactly keen on sitting still while someone stuck a needle in her arm! Luckily I’d developed a technique to deal with it – emla cream to numb the area, a bear hug from me with one of Romany’s arms conveniently poking out behind me, and a terrible rendition of The Wheels on the Bus from me to keep Romany calm & distracted. Blood test over we headed home with strict instructions not to start looking everything up online.

So – obviously – the first thing I did was Google the 3 or 4 conditions Romany had been tested for. I can’t even remember what else the blood tests were looking for – I forgot it all the second I saw the list of symptoms associated with Rett. It was like seeing Romany and her difficulties laid out on the page. I was heartbroken, but it didn’t exactly hit home at that point. We hadn’t got the blood test results so it wasn’t real at that point. It wasn’t long before I had a call from the paediatrician to ask me to go into hospital for an appointment a few days later. She desperately tried to avoid telling me the blood test results over the phone, but I knew there was only one reason for her to be calling us back in. I badgered her so much that she was forced to admit that I was right – Romany’s original diagnosis was wrong. Romany had been diagnosed with atypical Rett Syndrome. She repeated her request for me not to Google it (yeah right!) and said she’d see me in a few days, and I calmly told her I’d see her then. I hung up and collapsed onto the sofa, crying hysterically. I’ve never cried like that in my life before and I hope I never do – I don’t think there’s a word for what it felt like, but it felt as though I’d never be able to feel happiness again. That’s when it hit me – nothing would ever be the same after this.

I grieved and grieved hard. I saw my little girl’s future slip away and her health suddenly become at risk. Everything had changed and I’d gone from feeling calm and optimistic to lost and afraid. I knew autism. I understood autism. But that wasn’t what I had to deal with any more. A whole new world had just opened before me but it wasn’t one I wanted any part of. I can’t ever remember crying so uncontrollably other than that one day. That was the day the grieving started.

I grieved for my girl’s future, for her present, for her everything. I read everything I could from reputable sites (Rett UK, Reverse Rett, NHS etc) and felt my heart break again and again. Reverse Rett describe Rett Syndrome very succinctly – Imagine the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorder… All in one little girl. That’s what my little girl deals with every day. Can you even imagine that? She has seizures, breathing problems, anxiety, gastrointestinal and orthopaedic issues, mobility problems, huge difficulties using her hands, hypermobility in her joints, scoliosis (curvature of the spine), a severe tremor that effects her whole body, low muscle tone combined with muscle rigidity – the list goes on and on…. And it’s not possible to accurately predict her life expectancy beyond the age of 40 – many girls with Rett don’t make it that far, but many do – because Rett was only discovered fairly recently (1983) and older women who may have Rett can’t be accurately diagnosed due to there often being a lack of appropriate medical notes (they couldn’t know what things to test for when Rett “didn’t exist” I guess!). I was lost in a world where everything was alien and risks lay around every corner.

The shock of her diagnosis hung around like a fog, clouding everything and leaving me reeling, but I slowly found my way back to our normal lives, remembering that no matter what diagnosis she has, she’s still my Romany. She’s still the girl whose smile lights up an entire room, whose eyes capture every person who looks into them, whose laugh is so infectious it can thaw the coldest of hearts. She’s still the most beautiful girl in the world, and no diagnosis could ever take that away. I edged my way back toward hope as we went through test after test – EEGs, ECGs, ultrasounds… We battled through with the help of paediatricians, physiotherapy, occupational therapy, speech therapy, and goodness knows how many amazing special needs teachers and teaching assistants. I looked at all the ways that scientists the world over are fighting to treat and even cure Rett Syndrome. There is hope. There is a LOT of hope. And it gets easier to cling to it the more you read about it – with so many experts attacking from all sides, one day we will see Rett Syndrome cured for good.

But the truth is I do still grieve at times, just not in the way I did and not all of the time. I watch my friend’s children grow and become superb little people who I adore wholeheartedly. But it never stops hurting when I watch children fly past Romany – watching a 2 year old child progress is wonderful, but watching them surpass my beautiful 12 year old daughter hurts more than I could ever say. It only hurts for a moment though these days, just a sharp stab as I’m reminded just how unfair life really is. It doesn’t last for one reason – Romany. How much of a disservice am I doing by focussing on what she can’t do, what she may never do? Every single moment of her life she is fighting, and I stand right beside her backing her up all the way. She fights so hard already, she deserves my respect and she deserves her efforts to be recognised. If I spent my time grieving I’m also belittling her bravery. She deserves better than that, because she’s the most courageous person I know.

My girl finds climbing the stairs so difficult – impossible at times – but she keeps trying. She’s so scared of falling down the stairs when she walks down them, but she slowly but surely manages it (not every time, but mostly) eventually. She suffers from extreme anxiety, but still manages to find time for her smile and her laugh to win out. How unfair would it be for me to compare her to other children, when she has such an indomitable spirit that she’s prepared to fight her way through every day despite everything being agonisingly difficult for her?

When Romany was diagnosed with autism I often said that despite her problems I wouldn’t take away her autism because it was part of who she was. That’s the one thing that really has changed. I’d take away her Rett Syndrome tomorrow if I could. Nobody deserves to have so much to deal with as she does and it breaks my heart to watch her suffer the way she does. Could I cope with everything she deals with daily? I’ve absolutely no idea, but I know I wouldn’t want to, and she shouldn’t have to either. I know every other Rett mummy feels exactly the same – that’s why we fight to raise money for support and research. So I make no apologies when I badger you for money – why should I? As a family we have a lot to cope with, but none of us more so than Romany. If that was your life, do you think you’d just sit idly by and do nothing? Of course not. And while I’ll admit that hearing people tell me how wonderful my beautiful girl is feels great, actions speak louder than words. I always remember who donates and who doesn’t, no matter how often you praise our family….

You might have realised by now that we have another fundraising event in the pipeline, but at the moment it’s top secret. Soon everyone will hear about it though, and prepare to be surprised because this isn’t any ordinary fundraiser. It’s not a burlesque show, it’s not Tough Mudder, it’s not something we’ve ever done before. I haven’t decided yet when to announce our plans – there are so many things we need to put in place first – but keep your eyes peeled because you’re about to find out just what we’re all made of. Especially Romany…..

 

The Truth.

So firstly, a bit of background about Rett Syndrome… There are 4 stages that girls (and those very rare boys) with Rett Syndrome go through. Stage 1 is  referred to as early onset and generally begins between the age of 6-18 months and last from a few months to a year. Symptoms are  can be subtle and are often missed – they were with Romany (in fact I even had a doctor call social services because the health visitor believed I was neglecting my children!). Development slows a little and there can be a reduced level of eye contact and a lessened interest in toys, along with delays in gross motor skills (sitting, crawling etc). The rate of head growth may reduce and there may be some hand wringing or similar hand movements. Stage 2, the rapid destructive stage, begins around 1-4 years, lasting a few weeks or months. It can be a gradual process or happen quickly, and can be very traumatic for parents as they watch their child lose their speech and purposeful hand movements – it’s not pleasant to watch all your child’s development go into reverse, trust me. A range of stereotypical hand movements may begin at this point – wringing/washing movements, clapping, tapping, grasping & releasing and hand to mouth movements. Breathing irregularities (apnoea, hyperventilating, breath-holding) can begin, but generally only while awake. Autistic traits develop (loss of appropriate interaction & communication) and walking may be unsteady or may not happen at all. It’s during this stage that a delay in head growth is often noted. Stage 3 is known as the plateau or pseudo-stationary stage. The onset of stage 3 is between 2 and 10 years and can last for years. Apraxia (an inability to perform particular purposeful actions), motor problems and seizures are some of the difficulties associated with this stage. There are often improvements in this stage in terms of irritability, alertness, attention span and communication. Many girls stay in this stage for much of their lives. Stage 4 is the late motor deterioration stage and can last for years or even decades. Reduced mobility, scoliosis (curvature of the spine) and muscular problems (weakness, rigidity, increased muscle tone with abnormal posturing of limbs or the upper body). Girls who previously walked may lose their mobility, but understanding, communication and hand skills do not decline.

It’s hard to say whether Romany is in stage 3 or 4 at the moment. She’s had seizure activity for a few years now (although I didn’t realise what was actually happening when she was younger) and had an absence seizure on Wednesday while we were out for the day. She also has significant motor problems and apraxia. So, stage 3 sounds likely. Until you take into account that she has scoliosis, which is steadily worsening, and her mobility has reduced to the point that she can’t manage a day out without using a wheelchair any more. So that sounds like stage 4. I’ve been second-guessing where she is for months now, but in reality it doesn’t really matter. If she isn’t in stage 4 now she will be eventually, and despite all the worries I’ve had recently I know it’ll just be another thing to get on with as best we can. But that doesn’t mean I’m not scared.

Actually I am scared. In fact I’m terrified sometimes. One of the things that is on my mind a lot is Romany’s breathing. Over recent years she’s started breath-holding and it’s gradually become more and more noticeable, but I always reassured myself with 2 facts – she doesn’t have severe episodes, and it’s only happened during the daytime. That’s not the case any more though. On a couple of occasions when I’ve checked on her at night I’ve discovered she’s been breath-holding in her sleep. Last night while eating her tea she stopped breathing – she just stopped. She looked terrified, and I thought she must be choking again. As my fiancé and I did the last time she choked, I grabbed her and hit her firmly on her back. But she wasn’t choking, she just wasn’t breathing. Suddenly she took a shaky breath, and was ok again (apart from attacking me – after all, in her eyes I just started hitting her for no good reason!). So now I’m not sleeping that well any more – I fall asleep but wake up again and again, wondering if Romany is ok. I can’t even check on her sometimes – after about 4am I’d be risking waking her up and leaving her exhausted for the rest of the day. A lack of sleep and walking around with my heart in my mouth isn’t doing me any favours.

Romany was never a particularly medically complex girl growing up. As much as I knew she had Rett Syndrome I felt that we were the lucky ones. She didn’t have seizures (wrong!), she didn’t have breathing irregularities (wrong!), she didn’t have problems swallowing (so far it’s unusual for her to choke while eating, but it does happen occasionally) and her heart is strong (or it was when she was 3 years old – but I need to request another ECG as heart problems can occur at any point). I saw her problems primarily as behavioural and mobility-related – for years I’d believed she had autism with sensory problems and I’d stayed in that mindset because looking into her future with Rett to contend with was scary. I didn’t realise it but I was burying my head in the sand. My girl would be fine. I know so many children with more severe disabilities than Romany – so she’s not really at risk, surely? Except now I’m starting to have to accept that she is. Not high risk, perhaps – but I really don’t know the statistics and I don’t know if I want to. I’m gonna have to find out, so I’m going to start asking the questions I should have asked a lot sooner.

I don’t want to ask – I don’t want to know – but I have to, whether I like it or not. I feel like my beautiful, brave, clever, determined, strong and wonderful girl is starting to fall away. I know she’s still her, and I know I’m never going to stop loving and fighting for her, but she’s always been so strong and it’s breaking me to watch the little weaknesses creeping in. I don’t want my girl to be at risk. I want to know she’s always going to be healthy and vibrant, able to walk and communicate.

I don’t know where we go from here. Last night I watched Romany stop breathing, seemingly for no reason, and I’m terrified that I’ll see that again. The fear in her eyes cut right through my heart – it kills me to see her scared because nothing I can say will console her. I think part of the reason is that she could feel my terror. I can’t describe what it’s like to see your child just stop breathing – I think most parents can understand that petrified moment I had, but thankfully there are so many less who truly know what it feels like, because I wouldn’t wish it on anyone.

So now things have to change. Romany has always been a priority, but we have so many issues to deal with now that it feels like she’s been diagnosed all over again. I’m waiting for an appointment with the spinal surgeon so we can get a fuller picture of what is happening with Romany’s scoliosis. I have scoliosis but it’s barely noticeable, however it does mean I have some insight into what’s likely to happen at the appointment at least. I don’t think it’s likely that surgery will be on the cards – not yet at least – but it’s hard to say for sure. I hope I’m right though. I have to get a new referral to wheelchair services so that Romany can have her own wheelchair again that’s just right for her, so we can carry on going for days out and not end up living like hermits. I need to speak to the paediatrician about her breathing, checking her heart, the absence seizure she had, her tremor which now affects her whole body rather than only her hands as it did before…. It really is like living through all the assessments she had when she was young, because nothing is how it was any more.

To my friends – I’m sorry. I don’t have much energy left to be very sociable any more. Romany’s behavioural issues on their own leave me exhausted, and the stress of worrying about the next time we’re both gonna be scared by the effects of Rett means I’m hardly holding it together at times. So I’m apologising for not being available. For not being in contact very much. For not being a very good friend. I haven’t talked about all of this because, put simply, I’m not coping with it. I swing between thinking I’m overreacting to feeling that I’m not doing enough. I don’t know which way is up any more. I’m on so many groups on facebook where I could ask for advice or support, but I don’t even know what I’m asking for any more. I don’t want to be the person who stops seeing their friends because they’re only focussed on their child, but right now I can’t help it. I can’t go out in the evening as much or for as long because I’m worried constantly that something will go wrong, despite having every faith in Romany’s big brother to take care of her perfectly well. Through the day I can get out, but often I don’t feel up to it. And equally I often find that everyone is very busy through the day, so making arrangements is difficult anyway. So I need to apologise and say that it isn’t that I don’t care, and it isn’t that I don’t want to see you, I’m just struggling at the moment.

To my fiancé – thank you. I wouldn’t be able to get through this at all without your support. You’re the person who stops me from completely unravelling when I’m hanging on by a thread. You’re the person who can pick me up when I’m on the floor and you’re the only person in the world who really knows what I’m going through right now. Last night you walked through the door moments after the panic over Romany stopping breathing and when I told you what had happened you saw just how anxious and afraid I was and you pulled me back to the real world. I don’t know what I’d do without you.

Now I have to follow Romany’s example. I have to be brave and keep smiling. I have to fight like a tiger – I have to keep going whether I’m exhausted, over-emotional or scared. I can’t say I’ll always be ok, and I definitely can’t say I’m going to suddenly start getting out in the evening, but I’ll keep going. Because no matter what else, I have a little girl who needs me to stay in one piece and fight for the things she can’t take on herself. The fact that the little girl in question is simply amazing means that I know I’ll never back down. I might just be a little quieter than you’re all used to….

 

A Day In The Life

I thought I’d give you all a bit of insight into a typical day for us. One day is never like the rest; simply put, every day depends entirely on Romany. If she’s tired, we only do the basics. If she’s in a good mood and full of energy we can tackle bigger challenges and more complex activities. Obviously some things will always be the same, though, with just a variation on timing.

When Romany wakes up she usually has a nosey out of her bedroom window – every morning after my alarm wakes me at 7am I go in to find her knelt at the window. She very rarely tries to wake me up, so I don’t always know how long she’s been awake. Unfortunately her bedroom is across the hall from mine, so if she’s just chatting quietly to herself there’s no chance of me hearing her! I’m greeted by a smile most mornings, although I’ve learnt not to go in for a cuddle straight away – Romany likes to have a few minutes to adjust when things change so a hug from me as soon as I walk in can often lead to a sharp smack from madam! So I just give her a cheery “Morning Romany!” and wait for her to start to clamber out of bed, with a helping hand from me.

Getting down the stairs can be quite difficult some mornings. Rett Syndrome brings with it a variety of symptoms and one of the symptoms that is often quite noticeable with Romany is her Parkinson-like tremor. It’s often worse when she is tired or has just woken, so of course making trips up the stairs every morning and evening can be quite a struggle as her tremor makes her nervous and unsteady on her feet. It’s also possible that she has a problem with depth perception, as she finds it difficult to gauge the distance to each stair. That could also be due to her scoliosis, though, so both avenues are being investigated and hopefully we’ll be able to improve her mobility a little.

After a slow trip down the stairs, Romany sits on the sofa snuggled up to me to watch Monkey Life, which she loves, while drinking coconut milk. Next is her cereal (rice krispies and gluten & dairy-free chocolate balls with more coconut milk) which I feed to her – I would let her feed herself, but after practically bathing in coconut milk the last time I tried that I decided that I’d better lend a helping hand on school days! Getting Romany dressed takes a while – some days much longer than others if she is particularly anxious, upset or tired – but she helps out a little. I ask for her feet to put socks on, sometimes having to touch her leg as a prompt, and then it’s time for her trousers. Sometimes Romany will put her foot into her trousers without support, sometimes not, but she’s well practiced at “toes down” (aka pointing her toes) to help her feet slip in more easily (it took a LOT of practice!). She can slip her arms into the sleeves of her blouse and her jumper, which is such a help – trying to get her arms into sleeves in the past took an age! She does have a tendency to get a finger or thumb stuck, or get her hand wedged at an awkward angle, but being prepared to help out means she doesn’t get upset.

I have to give Romany laxatives to help her bowels function effectively, so I spilt the dose in half, giving her one in the morning and one in the evening. More snuggling ensues, before Romany sits in the “Hair Chair” to have her hair brushes and tied up. I’m useless with hair styling as it is, but I have to be extremely on the ball with Romany – as with young children, she doesn’t relish sitting perfectly still, especially as she can’t understand why it’s necessary. I can’t say her tremor helps all that much either, but we get there!

At the moment we’re having another try at toileting, with the support of the community nurse, so Romany is taken to the toilet when she first gets up, and again around 8am, and we mark on a chart if she uses the toilet etc. It’s rather hit and miss at the moment (no pun intended) but we’re persevering! Obviously we have to brush Romany’s teeth as well, which is interesting to say the least… We have a hard foam wedge that she bites down on while I do my best to get her teeth brushed. It’s not easy, but the main thing is that Romany doesn’t get upset. If she did, she’d always associate the negative emotions with getting her teeth brushed and I’d never get her to open her mouth again! I’m assured by her dentist and orthodontist that her teeth look great so I must be doing something right!

By 8.30 all Romany needs is her shoes and coat on, so I can usually sneak another cuddle in before getting her ready to head out of the door to the minibus that takes her to school. While she’s at school she gets up to all sorts! Singing, dancing, swimming, horse riding, cooking, gardening, riding adapted bikes and having all manner of visitors. That’s along with play therapy, physiotherapy, occupational therapy and speech & language therapy all thrown in, and at least one trip out a week where she learns social skill and hopefully, eventually a better sense of danger and how to stay safe.

While Romany’s out there are always plenty of things to keep me occupied, not least of which is the housework that it’s impossible to attempt while she’s home. I also make sure dentist appointments or similar for myself are arranged during school time because it wouldn’t be at all feasible to take Romany. Any shopping that needs doing has to be sorted through the day when my fiancé isn’t working and can take me in the car. I don’t have much of a social life now, but what little I have is generally fit into school hours as well. Add to that anything I might need to make for activities that I want to try that might help Romany to learn and develop, and any little adaptations or changes around the house that we want to make for her. Put simply, we’re pretty busy!

Romany is brought home around 3.45pm and comes in demanding “Cat!” at full volume – her way of asking for Over The Hedge to be put on. She uses her DVD a little like a comfort blanket – when she is unhappy she watches it intently and gradually calms down, and when she’s happy she watches the first few minutes, then nothing much after that (although you can guarantee she’ll know when it finishes….!) other than the beginning when it restarted. Once she’s settled into being back at home we have our hourly trips to the bathroom, some successful but others not and Romany’s almost constant requests for a drink. Seriously, how does one tiny girl drink so much?? I’ve no idea how she does it!

Romany spend her time “helping” while I cook, which mostly involves watching me and being asked what various foods are and several little nibbles of ingredients used as well. Sometimes Romany remembers the name for one vegetable or another, but the only things she will say correctly and without hesitation are meat, pasta, rice, potatoes, egg and beans – she knows what she likes!

Bath/ shower time is difficult as Romany struggles to step in and out of the bath and is too heavy for me to lift. She does love splashing in the water though! She’s happy to tolerate me using the hairdryer now, and since Romany has so much hair, that’s a very welcome relief. It feels nice to be able to give my 12 year old daughter a blow dry too, if I’m honest!

Before heading up to bed Romany has her melatonin to help her sleep and the second half of her laxative. Then it’s a steady trudge up the stairs with a little guidance and support along the way, or a piggyback up if she’s overly tired. Into her freshly decorated bedroom, making sure to switch on her radio (Classical FM is her favourite station) before she berates me and putting on her UV light so her bedroom will come to life once the lights are out. Romany isn’t overly keen on getting her pyjamas on and also tends to demand her DVD (I suspect she gets her DVD put on in her bedroom at her grandma’s house…) rather loudly. Sometimes she becomes quite edgy and can become aggressive at times. Suddenly, though, as if a switch is flipped her attitude changes and she starts her nightly bedtime babble and is all smiles again.

With minimal support Romany climbs into bed and curls up on her side with her back to the door. A kiss goodnight and that’s that… Plenty of babbling follows until she drifts off to sleep. I check on Romany a few times during the night, more often than not I have to change her at some point. I bought a set of electric, colour-changing candles which can be operated by remote control and that makes it a lot easier to check on Romany without disturbing her too much.

Most nights I get to sleep around midnight and although I often wake in the night I manage fairly well on the sleep I get. I’m always yawning, but that’s just being a mum for you!

A Battle for the Right School

Everyone has been posting throwback photos on facebook, so here’s one of our own….

This was taken when Romany was almost 5 and we went to visit Pathways School while I was looking into moving Romany out of mainstream school. My little lady enjoyed her visit so much and even learnt a new phrase “ball pool”, despite never having put two words together before! It was so obvious she loved it there from the moment we walked in so when it came to deciding which school I wanted Romany to go to that was the deciding factor. Both the available schools were simply fantastic and definitely better for Romany than mainstream, so it was a relief to be able to follow Romany’s lead in making a choice!

It was a very difficult decision for me when I chose to take Romany out of mainstream school. It was a huge admission that Romany’s difficulties weren’t just going to go away – I knew they wouldn’t, but admitting that out loud wasn’t a nice feeling in the slightest! I’d been very lucky to have a lot of support from playgroup as I mentioned in a previous post, and when Romany started lower foundation the I again received a huge level of support from the school she started at. She had her own little corner where she could go to have some quiet time, with low lighting and lots of sensory toys. We also spent time there every morning when she first arrived at school to help her settle and she had lots of activities provided by the pre 5 service to help her to learn new skills.

Unfortunately there was a house move on the cards. We had spent a few years living next door to utterly horrific neighbours, which both my children found upsetting, and we needed a third bedroom as well. With a house move obviously came a school change, and in all honesty I was again impressed with the school’s determination to support Romany. There was, however, one problem – Romany. Settling in her new school wasn’t the issue I’d expected -the school has a very similar feel to her previous school so she was really quite comfortable there – but once she moved to upper foundation it became clear things weren’t working out. She simply couldn’t cope with any class activities that involved sitting still, following instructions, working with other children or concentrating on anything she didn’t choose to focus on. She couldn’t make friends and understood very little of what was being said to her. Quite often she’d be taken out of class to walk around school for a while. I can’t fault the staff, and knowing Romany as I do I’m well aware of just how disruptive she was (and is) capable of being in class.

Her annual education review was coming up so – taking my mum along for moral support – I went into the meeting ready to explain the changes I needed to make, for Romany’s sake. Things didn’t happen quite like that though… I suspect school were aware that I would want to move Romany to a different school. They were certainly well aware that inclusion was not happening at all and I’m quite sure they realised that despite their efforts this wasn’t the best school for Romany any more, but nobody said a word. Nobody asked me if I was happy with everything – or anything for that matter – and the meeting felt extremely rushed, followed by my mum and I being ushered out without an opportunity to raise any concerns. I didn’t know quite what to do. This was the first time I was in a position where playing the role of advocate for Romany meant standing up to anyone who mattered.

After trawling through paperwork I finally worked out who I needed to call to say that I wanted Romany to be moved to specialist provision. I was told I’d be called back, which I was fairly quickly. The first thing the chap on the other end of the phone said was that if I had an issue I should have raised it in her review, so I explained why I hadn’t, only to be told that if I’d done things properly they could have set the wheels in motion straight away rather than me “not bothering” to tell the head of Romany’s school that I wanted her to be moved. I repeated the fact that I hadn’t been given any opportunity at all, which he made clear he didn’t believe, and he went on to imply that they might not be able sort anything because of that. I do wish I’d known then what I know now. Luckily I knew enough to say “I’m not going to be spoken to like I’m an idiot, so either treat me with some respect or transfer me to your manager!” which led to a miraculous change of attitude and a promise to look into things, because “the paperwork from the review hasn’t been finalised, after all” which made me more than a little irate considering his previous comments…

Still, things were being sorted out (hopefully!) so I moved on to the next step – looking into the options available to Romany. There are a number of schools with attached autism units (remember, Romany’s original diagnosis was autism) but I knew in my gut that specialist provision was the only real option. After visiting both schools I knew which I felt would be the best option for Romany, but got a surprise when I next dropped her at school – I was called into the head’s office. Apparently the head of one of the schools, the first I looked around, was a friend of his so he knew I’d been to visit. Erm, and? He even said something to the effect of “We teachers do talk to each other, you know” although to this day I don’t know what the implication was meant to be. So they talk. So what? He told me he felt that they were perfectly capable of looking after Romany’s needs and he didn’t think there was any need to move her. I didn’t say very much – I don’t for a moment think he believed that any more than I did – but it remains one of the oddest meetings I’ve had about Romany in my life. I later received a call to update me on Romany’s placement – her case had been sent to be reviewed by the autism panel so I had to wait to see whether they agreed that she needed more specialised support. They told me school had said Romany was “doing fine” at which point I said that if fine was enough then I found that disappointing – Romany deserved to do better than just fine.

So I waited for a phone call, having been told when a decision would be made. I don’t think I’d ever been so glued to my phone before! When the call finally came, the lady I spoke to was so lovely and said that Romany could have gone to either of the schools I had visited. As I’d expressed a preference for Pathways, that’s where she was to start the following September, about 2 months away. The fight – that fight at least – was over.

There should never have been a point where I felt I was going against the people whose main aim was supposed to be to ensure that Romany received the best support, care and education. At the point where it became clear she couldn’t be included in class activities the first actions of the school’s head should have been to reassess her needs and admit that she needed more support. Many times people have said to me that it’s down to the extra money schools receive for children with disabilities and additional needs. Some people have said it’s because the school struggles to keep numbers up. I don’t know what the truth of that side of things is, but I do know that one thing they didn’t concern themselves with was what was best for Romany. That’s something I’ll never forgive.

Soon it was the summer holidays. Weeks of not being able to leave the house other than for absolute essentials lay ahead and I’ll admit I was dreading it. There was the promise of a new start for Romany, but there were 5 long weeks to get through first and Romany was by no means any easy child to care for. By the end of August I had received Romany’s start date for school, but transport hadn’t been arranged. I was told, curtly, that they already had their journeys worked out before they were told another child was being “added on at the last minute” (The last minute apparently is a very loosely used term….!) so I’d just have to wait until they found space on one of the buses. After a week had gone by I started to question this call – how could Romany be denied schooling because they’d not been able to get transport in place despite having so much notice? Towards the end of the following week I rang again and was told the same thing. This time I wasn’t accepting it, though. I rang the LEA and complained – after all, if I kept Romany off school for 2 weeks because I’d not been organised enough there’d be hell to pay! To my surprise, the voice at the other end of the phone was stunned and angry…. “We have Romany down as starting on the first Tuesday back – are you saying she’s not even started yet?!” and when I explained what I had been told she was furious – transport hadn’t bothered to mention that there was a little girl missing school because they hadn’t put anything in place! I was promised a call back which came within an hour, along with a guarantee that from the following Monday (it was Friday when I called) a taxi would arrive to transport Romany, although I’d need to travel with her while a proper route was sorted out for her and the taxi would drop me home afterwards.

Monday arrived, and I nervously loaded Romany into the car driven by a very lovely man who was our driver until the day she moved onto a minibus. Within a week there had been a miracle. My frustrated, angry, aggressive, distraught and confused little girl was smiling, giggling, laughing – I would never have believed it was possible. Our whole lives changed. Yes, the angry, aggressive side still arose at times and it was still very hard work, but she was smiling again.  I’d finally got my little girl back.

At the time that I went through all of this I was young, confused and timid. I didn’t know how to stand up for my girl, but sorting out the right school for her certainly changed my attitude. I shouldn’t have had any of the battles I had to just get the right care & support for a vulnerable little girl who was struggling every day. It’s disgraceful that so many people involved in the care of disabled children put anything other than those childrens’ needs first. I don’t expect everything to be perfect – I’m a realist, I know that budgets aren’t unlimited and sometimes things just don’t go to plan – but the system really didn’t help Romany at all. I fought for her when I should never have had to and it was hard as hell. But I’d do it all again tomorrow if I had to, because she’s worth every single second.

What to do if you’re not okay with this image.

This is something we have to face so often with Romany. It’s awful having to lay Romany on a toilet floor to change her. It’s degrading and she deserves better.

learninganddisability

This is Wilson.

Wilson is five years old and needs Changing Places to be able to safely be changed after using the toilet. Without them this is the standard disabled toilet offered at Churchill Square .

Wilson’s Mum, Zoe did the #‎barefootchallenge at this time, bravely helping to create awareness. This is the reality faced by thousands. I believe Wilson and Zoe deserve so much more.

After this image was shared on the Facebook Page for Changing Places over 125,000 people viewed the photo, and some left negative comments. Negative comments such as ‘this is disgusting, why would you lay your child there’. Before commenting and leaving your comments for the world to see, think about what you want to achieve. Negative comments do not help the person in the picture, they only hurt their loved ones.

If you see this image, and believe that people should not have to meet their…

View original post 98 more words

It’s Just One Simple Test….

I knew for a while before Romany was assessed that she was struggling and that something “wasn’t right”, for want of a better phrase. As I mentioned before, it was the fantastic staff at Romany’s playgroup who got the ball rolling with getting a diagnosis, and I’ll always be grateful for that. I can’t imagine what it would’ve been like for Romany or myself when she started nursery if we hadn’t got a diagnosis beforehand. Yes, it was the wrong diagnosis initially, but the simple act of being able to say that Romany was not neurotypical (NT) and even had a statement made a massive difference. We got support from the pre-5 service and Portage home schooling before Romany started school, and the pre-5 service continued to help once she was in nursery. The other thing that happened was the appointments to have tests. Lots of tests. We saw the consultant paediatrician, occupational therapist, physiotherapist, clinical psychologist and goodness knows how many more! I lost count of how many blood tests she sat through – not as terrible as you might imagine, once you’ve found the technique that works just right and have blobbed on some emla cream… She endured all kinds of prodding and poking and amazed me with her bravery, considering how little she understood of what was happening.

One test that Romany’s paediatrician referred her for was a hearing test, so we could be certain that her problems with balance and communication weren’t as a result of a problem with her ears. It might even have explained her aggression if something was causing her pain. She’d had the usual hearing tests but not responded to the various beeps and buzzes, although there was no way of knowing if this was relating to a hearing problem or a lack of understanding, so further checks would be needed. As usual, Romany and I set off with my (now ex) partner to her appointment not knowing exactly what it would entail, but with Romany in a fairly good mood I wasn’t worried. We reported to reception and sat in the waiting room, chatting and amusing Romany until we were called through.

When we walked into the room the doctor explained that he would be placing an instrument in Romany’s ear and that she would need to remain still without opening her mouth. Yeah right!! I knew there was no way we would manage that – staying still wasn’t something Romany did exceptionally well at 3 years old, for starters. He told me to the best position for the test would be to lay Romany across mine & my ex’s legs and hold her head steady in my lap. Expecting her to keep her mouth closed for more than a split second wasn’t likely with my little chatterbox – she may not have been saying much that anyone else could understand, but that didn’t mean she was quiet!  I explained my concerns to the doctor who said something to the effect of, “It’s just one simple test – it only takes a few seconds. And if she gets too upset we’ll stop anyway, so there’s nothing to worry about.”

That’s probably the last time I trusted a doctor without question. As soon as he tried to place the instrument in Romany’s ear she started to squirm and cry. I had to wrestle to hold her still because no matter how hard she screamed the doctor refused to stop, even when I said there was no way to manage it as she was way too upset now. He wouldn’t stop and soon my ex and I were using all our strength to pin a hysterical little girl in place so the instrument being used didn’t damage her ear. I remember this disconnected voice in my head saying “This can’t be happening! Why won’t he stop?!” while the doctor hissed through gritted teeth that if she’d just close her mouth he could actually do the test. I couldn’t quite believe what I was hearing – it was almost as though he was saying it was Romany’s own fault that she was so upset. I was absolutely livid but until he stopped I couldn’t even loosen my grip. I opened my mouth – I really don’t know what I was going to say but I don’t imagine the doctor would have appreciated it – just as the doctor pulled away. Poor Romany was in pieces, and I felt utterly to blame. Why hadn’t I screamed at him to get the hell off of my gorgeous daughter?? Why wasn’t I screaming at him now that I was going to report him?? I just sat there numbly listening to him complain that he wasn’t able to complete the test because Romany was too uncooperative. I was dumbfounded. How could a grown man put a small girl through all of that and then try to imply she was to blame for the trauma?

All I could think about was getting the hell out of there and calming my poor girl down. She was so inconsolable she was starting to hyperventilate and every trick I’d learned to calm her was useless. I could feel the tightness in my throat that came before tears just as a nurse rushed over to help us. She ushered us into an empty room and asked if she could do anything before leaving us to settle Romany the best way we could. Wrapped in my arms Romany wept until she was exhausted and eventually fell asleep, but even then she jolted awake every few minutes in a panic. After more than half an hour she was slowly starting to calm down and it was time to get her into her pushchair to make the journey home. It was at least another 15 minutes before we left the hospital with a much calmer, but still very upset little girl.

I never reported the doctor for his horrific attitude and behaviour. Unbelievable, right? The thing is, I was convinced I must be overreacting – after all, the nurses didn’t do anything to try to stop him and my ex didn’t either, nor did he seem to think reporting it would achieve anything. I assumed it must just be me – I must be really oversensitive because I’m so protective of Romany. Surely that must be the case or somebody would’ve backed me up in the appointment, right? It’s not though. It’s not right at all. The doctor should never have put a small child through that sort of trauma. The nurses should have intervened when things started to get out of hand. My ex should have spoken up to support me and he should have encouraged me to report the doctor. Mostly, though, I should have raised the roof when the doctor pushed Romany too far. I should have screamed at him to get his hands off my child. And I absolutely, definitely, should have reported him. But that’s what that appointment taught me – I needed to have more faith in myself and not care whether anyone else has the balls to speak up too. I have to admit, though, my fiancé isn’t one to mince his words, so these days I have backup anyway – every single time. Just when I’m strong enough to cope without it. Ironic eh? But just because I’m stronger now doesn’t mean the support isn’t needed at times, and it’s good to know I don’t have to worry. He’s always got our backs!

The aftermath for Romany is that she’s now scared of having her ears checked, and having anything put in them is extremely distressing for her. There’s only one GP at my practice who can get a look at her ears so when she’s ill I always pray he’s working. She can’t stand being restrained either, even lightly, and spent a long time being scared of the hospital the hearing test was performed at. Luckily it was so long ago that the hospital has since been rebuilt, so Romany doesn’t get upset going there any more!

The thing is, this post might be about something that happened to Romany, but really the message I want to leave you with is about standing up for yourself and your family. Don’t make the same mistake I did – the doctor does not always know what’s best. Stand up and be sure your child is treated with respect and your opinions are listened to. I would never let anyone put Romany through that sort of trauma now – it seems insane to me that I ever did! I’ve since even stood between a consultant and my daughter and said, “NOBODY is putting ANYTHING in my daughter’s ears!” after a vile doctor put me once again in a position where I was forced to pin Romany in place because she wouldn’t listen, and this doctor cut the inside of her ear after insisting an ear exam was essential (and later admitting it wasn’t!). Luckily for her she stopped just as I was about to say “If you don’t take your hands off my daughter right now….” and was scared enough by my anger when I saw Romany’s ear was bleeding that she pretty much ran out of the room.  When she brought the consultant he didn’t even try to argue with my assertion and just tried his best to catch a glimpse down Romany’s ears while she clung to me, still visibly upset and shaken. Things have changed – I have changed – and god help anybody who hurts my little princess now. I’ll certainly report them – and they should count themselves lucky that’s all!

Staying Positive is a Habit

Ever since Romany got her original diagnosis people have asked me how it’s possible to stay so upbeat. There are a few answers to this, most notably “I lie”. And I do – it’s impossible to actually be positive 24/7 but I’m yet to find a person who says “Hey, how are you?” when they bump into you in the street who want an honest aswer. Everyone expects pretty much the same answer, don’t they? “Yeah, not bad. How about you?” Obviously friends are a different matter, but I actually very rarely tell friends when things are really bad either. Why? Because they have their own issues to deal with,and I don’t find talking helps me to cope any better. In fact, it breaks into my ability to stay positive and chips away at it until I often end up feeling down for the rest of the day if not longer. That’s never going to help anyone… That’s not to say I can’t or don’t talk to my friends, of course, it’s just that when things are at their worse it’s a lot harder to hold it together. Talking about what is making things so hard is usually the tipping point, so I save it for times when breaking a little is ok so I can just have a really good cry and pick myself back up. Thankfully my fiancé is always there to help me pick myself back up and keep going, and he can, somehow, always make me smile eventually.

Most of the time, though, the thing that keeps me positive is habit. It would have been very easy to fall to pieces when Romany was diagnosed with Rett Syndrome. Suddenly the future was a much scarier place and it would have been so much simpler to wallow, weighing myself down with everything Romany might never do until I drowned in my own grief over her future. I have to admit it was a tempting thought – the idea of holding it together after such a huge shift seemed verging on impossible when I’d been struggling as it was. If I’d done that, though, what would Romany do? It’s one thing thinking “I can’t cope” but what is the alternative anyway? Just stop taking proper care of Romany? Send her to live elsewhere? I could never have done either of those things. So the only other option was to cope, no matter what it took.

I tried antidepressant medication – helpful, yes, but they don’t solve the problem. Counselling did nothing to help at all so that was a bust. In the end, facebook was my saviour. Most people these days accept that the face you present to facebook isn’t necessarily the whole truth. If you’ve sat around all day eating junk food, wearing pyjamas , watching cheesy films and being lazy you might post on facebook in a joky way about what you’ve done. Or you might not say anything at all about that but mention something more “worthy”, as it were. Some people are more honest than others, of course, but that’s life! The thing with an online persona is that you can steer it somewhat towards the type of person you wish you were – you’re hardly likely to post about the fact you screamed at your 3 year old after they put paint in the washing machine and ruined the whole family’s clothes (no, this isn’t something I or anyone I know have done, just an easy example!). You might post a picture with a funny caption or an amusing status update but you’d hardly add “…and I lost my temper and screamed him/her” even though I can imagine most of us would be furious (I’m not suggesting it is or isn’t ok to scream at your child, I might add. I’m not even starting with debate haha).

The point is, without intending to initially, I doctored the image of my family that I let the world see. It’s very rare that I’ll talk about the truly difficult times I have with Romany – it does happen, but only when I’m actually coping quite well with it at that point. I hardly mention the day-to-day difficulties either, because those are the things I live with every day. Talking about them makes things much more difficult because that pulls the discrepancies between Romany and a typical 12 year old to the forefront of my mind. I talk about the things she can do, the happy times we have, the funny little quirks of her personality that endear to so much to everyone who meets her. I post pictures of her looking pretty, wearing fancy dress, doing things she loves. I talk about future hopes and plans, places we want to take Romany, things we want to show her. I talk about my vivid, beautiful, brave, passionate girl who fights through every day and always manages a smile, albeit sometimes only briefly. I could talk about Romany forever. I talk about issues within the area of Rett Syndrome, disabilities and additional needs, charitites, even just films or animals that Romany loves. I talk about the bad times occasionally, too, but not often.

For a while I felt like a fraud, particuarly when people praised me for staying positive, because I wasn’t telling people how it really was. After a while though I came to realise something – I was feeling better. Through facebook, I was spending my time focussing on the positive side only on the positives for so much of the time that it had become habit. If Romany is anxious and I spend a lot of time stopping her from biting her hands because she’s hurting herself (even if she doesn’t feel it the same way we would) then I don’t talk about it. I talk about the funny thing she said, or the giggle that erupts from her lips every time our dog gives her kisses. Of course, when my fiancé comes home it’s a little different – from the first glance we exchange when he comes through the door he knows how it’s going – but that’s a different matter!

Now that I’m writing a blog I’ll probably talk more about the negative side of things at times, but only when I can write from a more detached, dispassionate place. While I’m feeling strong, I can talk quite objectively about the harder times we have and I want to be honest about the reality of our famiy life. I can’t do that properly while I’m not coping well enough at the time, so those posts might refer to events that happened days, weeks, months or even years ago. That’s just the nature of the beast for me.

Getting into the habit of focussing on the positives happened by accident, but I still have to work at it. I have to dig my heels in when I just want to scream that it’s all so damn unfair and remember that I’m not the one who has it the hardest – that’s Romany and she deserves no less than my best. When I want to curl up in a ball and cry because everything has just become too hard I remember there are a million ways it could be worse. So I sit there and take a deep breath and think of something good, anything at all, and try to focus on that. It’s by no means infallible and I don’t always manage it, but I still try. And if I fail – if I just can’t look on the bright side and honestly want to simply give up – I won’t be talking about anytime soon…