So at the end of May, Chloe was diagnosed with Autism Spectrum Disorder. While it was no surprise to many who know her, it was still something of a shock to the system to have it there in black and white. The assessment reports were upsetting and really hammered things home.
We always strongly suspected Chloe had Autism, problems at home meant we really needed some assistance and diagnosis seemed logical. With a confirmed diagnosis we hoped we would be able to access services and interventions that were not available to us with out the label.
Oh how wrong we were. In Exeter, the Autism team is diagnosis only. They do make some recommendations on their reports, but they don’t actually offer any support and so we found ourselves saying thank you and walking off out into the rest of our lives with our daughter having this diagnosed condition and no support.
Can you imagine rocking up to A&E screaming in pain, them doing an x-ray and finding you have a broken leg and sending you off into the world to find a way to fix it yourself? No of course not, so why was this the case with our daughters autism? What’s worse is that we’re not alone, its a story you’ll hear repeated up and down the country with all sorts of neurological conditions.
Our kids are being failed. It’s been proven that the earlier a child is diagnosed and they can get interventions, the better, as the brain develops there is much more ability to change, learning new behaviours is easier.
You know me, not one to take things lying down I’ve spent months trying to find out what we can do. Camhs tried to close our case, “autism isn’t a mental health issue”. It’s been a dark time with lots of tears and stress from me…”how can they do this?!”, “where do I turn?” and while we still don’t know our way in some areas, I’ve managed to access help and support in others, through research and sheer determination borne of my absolute fury.
Lola starts attending Devon Young Carers this week, so she can have something of her own and meet other youngsters in similar situations. I hope it will be valuable for her.
Chloe’s sensory and dental issue continue to be a problem. The specialist dental service have now done a referral to the Occupational Therapy team in Exeter after seeing my desperation. I think the wait, as always, is lengthy, but I’m hoping some of those sensory issues will be looked at. If the dental service hadn’t done this, I would have done the referral myself.
We have had a “Resource Allocation Assessment” and budget has been approved for Chloe to have an enabler for a few hours a fortnight as well attend groups and activities for kids like her, run by trained professionals. Again, if this isn’t done for you by a professional involved in your child’s life, do it yourself.
In addition the Communications and Interactions Team are going into Chloe’s school to observe and make recommendations. I hope this will help the school really get a handle on Chloe and provide advice for helping her through her school life.
Speech and Languages went into school to assess Chloe and while there’s no further need for their involvement they’ve been incredibly supportive, going above and beyond and giving the school advice and helping get the message home, just because she seems okay at school, doesn’t mean she is okay at school. Again, I did this referral myself.
As for Camhs, well they grudgingly agreed to do three sessions of exposure work with Chloe. They didn’t do that, they have done three family therapy sessions instead, the first with just Graham and I, the second with Lola, Graham and I and the final one will be one hour with Chloe. So they have offered one hour of support to Chloe. They have made it clear they don’t want to help any further. As other things have fallen into place however, it feels like Camhs are less important. I would argue though, that Chloe’s mental health is affected by her Autism and they have a duty of care to help…but its the only battle I cant be bothered to fight.
Finally feels like we’re getting somewhere, I say this tentatively though because we’ve learned the hard way not to be optimistic.
My advice to any parent in a similar situation is this:
Don’t accept what you are told. Don’t settle. Don’t stop fighting. When it feels like you can’t fight any more, keep going. Don’t let people pass the buck. Make people accountable, demand that if they won’t help, they will help you find someone that will. Demand a Team Around the Child Meeting (TAC) and get everyone there, hold them all accountable.
And while all this is going on, and you’re trying to negotiate the system while living with a child who has additional needs, try your hardest to make time for yourself, you need all your strength. Take up a hobby, see friends, read books for fun whatever it is you need to wind down, do it. And find support groups, online or otherwise, find people who know what it’s like, who have either been there, or are going through it themselves, you’ll find other parents a wealth of knowledge about what’s out there and your rights. If you are local to me, Exeter, drop me a line, I can point you in the direction of groups I use or know of.
Just keep fighting.
It was in 2013 I think that first talked about Chloe and the possibility that she has aspergers and since then I’ve blogged sporadically about the difficulties we have faced as a family, the decision we faced regarding getting whether or not to get a diagnosis, and once that decision was made, our time on the extremely lengthy waiting list. If you’re interested, you can find all of my previous posts here.
And so it was that Chloe was assessed a few weeks ago. The wait for the diagnosis (or not) was excruciating, although thankfully very quick. We had no idea how Chloe had been in her observation as we were in a separate room. We also were aware the Chloe is capable, on occasion, of seeming perfectly fine (she’s always fine but I mean not displaying any signs of what we suspected). There were times where I hoped there was no diagnosis (meaning there’s hope that things could be “fixed” in simplistic terms) and there were times I was desperately afraid we wouldn’t get a diagnosis (well why do we have the problems then? how can we get help if there’s no diagnosis?)…but both views were accompanied by a constant feeling of anxiety.
As I say, we didn’t have to wait long, about three weeks. I was actually told Chloe’s diagnosis on the phone. The procedure is normally that you would go in for a face to face meeting to discuss the results and next steps (regardless of the outcome), but the assessment team wanted us to have the results quickly as we had a meeting at the school the following day.
To cut a long story short, Chloe has Autism Spectrum Disorder, as we have always suspected. Asperger Syndrome is not diagnosed any more hence the diagnosis of Autism Spectrum Disorder.
I’m not going to lie, the report was incredibly distressing to read, the detail of her observation, in black and white, by professionals, hammered home the problems, making a mockery of the fact I was ever concerned they might not see it.
And it’s hard to even describe how I’ve felt the last few weeks, happy, sad, relived, vindicated, positive, negative… and everything in between. So far though, for me personally it’s had a definite impact on how I view and manage situations, it’s like something’s clicked in my brain…instead of wondering “why is she behaving like this? arghhh!” now (nearly always but not every time!) KNOW why and knowing means I can manage the situation considerably better than I could before.
At this point in time I don’t know whether I will continue to discuss this subject on my blog, Chloe’s older, more aware, and I’m keen for her not to be defined by this label, but equally, it provides an outlet for me and I think talking about this stuff can be a great help for other parents going through the same thing. I have no doubt there’s much more of this story to tell, getting the help we need, family life and so on, but I may choose to keep this private from now on.
But for my blog, and for those who have followed this journey all the way through, I wanted to share the outcome. Thank you to everyone who has supported, shared their experiences and been so kind over the last few years, it really does help.
Gosh I don’t know where the time is going at the moment. It’s been a week since I last blogged, although it’s fair to say that my last post my mind has been elsewhere! Mostly on the kids. We’ve had parents meetings, assessments (no answers yet!), dramas, days out…it’s been non stop.
Speaking of the kids, well they have been trying out a new product, OptiBac Probiotics.
My two are particularly prone to picking up every single bug doing the rounds at school. Chloe doesn’t cope well with illness and finds it very stressful, while not much gets Lola down but it often feels like she’s never 100% well. In addition, Chloe’s eczema is not good at all at the moment.
I’m terribly au fait with probiotics but we’ve been giving them a go.
Children are full of bacteria, good, bad and benign, but recent studies have shown that a dose of good bacteria can decrease the risk of common childhood infections by 25%. Probiotics work in different ways so its good to opt for probiotics specifically for children. Each box contains sachets of powder. You can either purchase a box of 10 or a box of 30 (£6.99 and £16.99 respectively).
Each sachet provides 3 BILLION live cultures and 0.79g of FOS fibres which are well documented for their effectiveness on the different level of the immune response. It’s also worth mentioning that pregnant and nursing mums can also take For Babies and Children as the natural bacteria will pass through to baby either during birth or while nursing.
Practically speaking I was concerned I would never get this product into my kids because they are both so incredibly fussy, one of them has never even taken Calpol. I needn’t have worried. Ideally these need to be taken with a meal, ideally breakfast and as they are flavourless you can just mix them into food or drink. Lola never even noticed these slipped into her milk.
Having only been using these for less than a month its hard to say whether Chloe and Lola have been less prone to bugs but I am totally convinced that there’s no harm in introducing probiotics to their diets, they can only do good, or at worst, nothing. It is worth mentioning that Lola had a cold just over a week ago but it cleared up in record time so I’m inclined to think these are helping to strengthen her immune system.
Time will tell if these make a difference but for now it just feels good to know I’m doing SOMETHING.
I would recommend these for new mums, babies and children up to the age of 12 and I also recommend the reviews section of the website, the reviews are really incredible.
You can purchase OptiBac Probiotics for Babies and Children from the OptiBacProbiotics website, and be sure to check out the rest of the comprehensive range too while you’re there!
*Product received free of charge for review purposes
Well it’s been a very long time since I’ve done an update of this sort. Those here for the lipstick posts may wish to skip this one. If you’re interested in the background, you can find relevant posts here, here, here and here.
I woke up feeling sick this morning. Literally sick to my stomach, the reason being the time has nearly come. After three long years, some of you will have been with me this whole way, on Monday Chloe’s assessment starts. I am not sure how long the assessment process lasts, I think it could be months, I really don’t know. I guess it all depends on how many people they wish to involve and how much there is to investigate.
Three long years we’ve waited for this appointment and now it’s nearly here I kind of wish I had more time. I’ve got so much information ready both in my head and on paper, we’ve even got what is called a “working” diagnosis, of Aspergers, but still I’m so frightened. It’s not like I want Chloe to be labelled, but there are issues we desperately need help with and in order to get this help we have to go through this process. In fact, I’ve been assured a diagnosis isn’t all that important as there will still be, or should be, a plan of action after the assessment, regardless of the outcome. This is what we have waited for.
Chloe, like all children, indeed all people, is ever changing, but what sets her apart from say, her sister, is that her needs are so demanding. While we can have months with one problem (refusing to travel anywhere new for example), this can quickly disappear to be replaced by another issue. It is my belief that Chloe actually lives in a state of anxiety all day, every day, which is the root of many of her issues, and these can change as she focuses on one thing for a few months, then switches that over to another. She is still argumentative and challenging in the extreme and her behaviour is hard to manage, she also seems incredibly hyperactive a lot of the time. Add into all of this some sensory issues that just make every day life a bit more tricky..
I’m playing a lot down as I’ve detailed the problems in other posts and while things change constantly, NOTHING changes.
Some things have improved of course, we can now travel further distances in the car and aren’t so housebound any more, and she is much much better at occupying herself for more of the time so things are just generally easier, however, outbursts are more aggressive, and more extreme and socially things are not good. Don’t even get me started on the dental issues.
The Easter holidays, which have always been a source of extreme stress, have been relatively laid back, and bar a lack of social events for Chloe, haven’t been too bad at all, we even enjoyed a lovely grown up trip to town, the highlight of the break in my opinion.
So, with this looming and the Easter holidays I hope you’ll forgive my infrequent blog posts, and wish me luck for next week…I think I’ve got a few anxious days ahead of me. Chloe meanwhile, is blissfully unphased by the whole thing 🙂
It’s been a long time since I’ve done a post about our assessment journey with Chloe and life at home.
In truth, nothing has changed much. We are still awaiting two assessments with Camhs and the ASC team. We have a wonderful support worker who has been fighting our corner really hard and Camhs have now said Chloe is near the top of the list and our wait shouldn’t be much longer. But that was a few weeks ago now, so any hopes that things would move quickly have disappeared and I’m pessimistic again.
Chloe has taken a huge down turn with her anxiety, and things have been difficult. She struggles to go anywhere now that isn’t extremely familiar (Supermarket, park, school), and she won’t entertain any journey that is outside of our town, so we are unable to visit relatives or take a trip to the local forest, or beach. Basically we can’t go anywhere. She recently had to miss a school residential trip, which was so sad, as she so wanted to go, she just couldn’t. That said, we’ve had some big successes lately, and Chloe has managed to do a few things that she previously couldn’t. The behaviour issues are all still there, along with the hyperactivity. The residential bought things to a head a little more and the school have been more helpful since, I don’t think they realised quite how bad things are until then.
The other thing that seems successful is that Chloe now sees a Counsellor weekly, she enjoys it.
I’ve had cause recently to reflect on just how much extra care Chloe requires, I won’t go into why I’ve had to do this but to see it written down is really eye opening and a little upsetting. As a parent you just get on and do, and the really bad days are the ones that stand out, but actually each day is pretty hard going for various reasons. Starting with just the simple task of getting ready for school in the morning… taking up to 45 minutes to get dressed, not brushing her teeth properly, if at all. Tantrums and screaming matches if you dare to ask her to hurry. That’s a standard morning and actually features nowhere on the list of bad days. That’s just standard. It’s just one small example and I know that lots of parents will related to the not getting out of the house easily in the mornings. But imagine every single step of the day being the same. And then add a load of extra stuff on top for extra fun. I think I’ve talked about the details quite a lot so I’ll resist going into it all again.
I’m increasingly frustrated at the system, but again, I’ve moaned about that before, and I’m always wary when moaning about the assessment waits, after all, its not the fault of Camhs, the cuts have been crippling, and although life seems too much for us sometimes, actually there are so many far worse of its natural that we are lower on the priority list, but even so, as time passes, our priorities are changing as we become more housebound!
In other news, Chloe was 9 last month. Nine Years! Where has that time gone! As she’s growing and defining her tastes its becoming clear that she’s a little fashionista. She absolutely loves clothes, so long as they are black 🙂
So there we have it, not much has changed, we’re still waiting. Nothing much to report, other than increased anxiety, but it has to be said, that while that aspect of Chloe’s life has deteriorated (and therefore ours) Chloe has been incredible when overcoming some of her fears lately!
If this is something you are going through and you are interested to read more about our journey, you can find all my related posts here.
She’s read it and I’ve read so here’s what we think! My first comment is about the cover, I think its beautiful! It reminds me very much of the paintings by Margaret Keane. Actually, the official cover has been changed since we received this Cinderella version. The new cover is the equally gorgeous Alice in Wonderland.
The book is part of the Once Upon a Zombie franchise which is kind of a big deal in the US, and as well as this book there are dolls and costumes available, here in the UK. The book is aimed at children aged between 8 and 14 ish but I’d say that depends on how sensitive your child is, Chloe, was quite nervous to read this, if you’re at all familiar with Monster High, I’d say this is a step up in age suitability from that.
I like reworkings of fairy tales and this is no exception.
The prologue explains that fairy tale authors have been rising from their graves.
The story is based around a 14 year old girl, Caitlin Fletcher, who is afraid of everything, and her sister Natalie who is bright and brave. Their lives change when Caitlin is tricked into going into a rabbit hole. It’s not just any rabbit hole though, it is actually Lewis Carroll’s grave and Caitlin ends up in the fairy tale universe…but its not pleasant, the world is decaying and teeming with zombies.
The plot is a rehash of Alice in Wonderland, mixed up with zombies and a touch of high school drama and of course a plot twist I can’t go into!
It was a great read, a real page turner, and its far more worthy than I’d expect a book of this sort (attached to a toy franchise I mean) to be. The characters are engaging, and all the fairytale favourites are present and correct, Sleeping Beauty, Cinderella, and Snow White and its an exciting race to the conclusion.
My only downside to the story itself is the beginning which is a bit annoying, but that’s short lived and before the zombie storyline really kicks off.
Chloe found the book an uncomfortable read but I tried to encourage her to read it regardless. The reason being, the main character, Caitlin, suffers with severe anxiety, like Chloe, which she works through in the book which I felt would be great for Chloe to read. The reason it was difficult was because of her sensitive nature, she read it afraid that on each next page would be something she was scared by, but actually, that really wasn’t the case, and she did enjoy it. Her issues weren’t to do with the gruesomeness of the story which was fine, but more that she was expecting there to be gruesomeness she wouldn’t like. Based on that, I’d say, proceed with caution if you have a sensitive child.
All in all a great read though and one I’d definitely recommend. Makes a nice dark change from Rainbow Fairies and My little Ponies.
*Once Upon a Zombie received free of charge for review purposes.
Delighted today to bring you something a bit different as well as a brilliant giveaway if you have kids.
Chloe and Lola were both lucky enough to receive one of the newest Bratz dolls from the Study Abroad range each. I’m going to do a review first and at the end of the post you can enter my rafflecopter giveaway to win for your own child, or even you if you want!
So we received Sasha who is visiting the UK and Yasmin who is visiting Brazil.
Firstly meet Yasmin.
I especially love the accessories with this one. She has a suitcase and stickers to decorate it and in addition she has a full outfit, a brush, a bangle, a necklace, red phone box earrings and most importantly for visiting the UK, she has a teacup and some lovely biscuits on a plate.’
It’s far to say Lola loves Sasha as much as Chloe loves Yasmin.
Firstly, I know that when I was little, if these were around I would have wanted them, no question, they are bright, fun and attractive. I also love the fact they come with loads of accessories. The accessories are such that they are prone to getting lost easily, but thats where the suitcases and bags come in handy, so you can keep all your bits close to your doll. I also like the fact that they come with a complete other outfit, its lovely for the kids to have that, you don’t often get that included with a doll unless you buy extra outfits. What I also loved was the easy opening to learning about other cultures, of course you can always do this with your children anyway, but I do love that it prompted the questions from my kids. We ended up looking up Brazil and what it looks like, where it is on the map, what things from Brazil are famous…. it was less the case with the Sasha visiting the UK as we live here already, but personally I loved her British outfit. It must also be said that the dolls seem to be really high quality. I will mention that Sasha’s hair has a greasy feel, I believe there is some product on her hair, and I’m all for that if it keeps it sleek and shiny. I am a mother who is tired of combing impossible tangles and knots and frizz out of dolls and toy ponies.
I know there are concerns about the unreal shapes and details of the Bratz dolls and while I do think this is an issue of wider concern, its not one that bothers me a huge amount in this instance because I think the positives outweigh that issue really, and I believe that if I’m teaching my daughters positive attitudes and being a good role model as well as surrounding them with good role models and messages then a doll won’t make a difference.
I am being honest when I say I really love these dolls and would recommend them as quality toys that won’t fall apart, and there is no doubt that there has been great attention to detail paid when they have been designed.
Bratz Study Abroad dolls are available now at all good retailers, including Argos, Asda, Debenhams, Smyths, Tesco, The Entertainer and Toys R Us and the RRP is £24.99.
And with that glowing review I’m delighted to be able to offer you a chance to win a Bratz Study Abroad doll of your own. It will be one of the following and it will be a random selection, so unfortunately if you are the winner you will not be able to choose which one you win, but don’t fear, they are all fabulous!
All terms and conditions can be found within the Rafflecopter widget.
*Dolls were received free of charge for review purposes.
When I was in Lush recently picking up the Salted Coconut I also grabbed a pot of Love Lettuce Fresh Mask in an effort to fix my unhappy skin.
Its been years since I’ve used a face mask of any description, never mind a Lush one, but I always used to like Lush Fresh Face Masks. They are so fresh you have to keep them in the fridge and they last about four weeks (providing you have stored them in the fridge).
Love Lettuce seemed perfect for my skin. It’s brightening thanks to agar seaweed gel, soothing and moisturising thanks to the honey and almond oil, it also exfoliates with almond shells. It’s highly scented with French lavender, which I love, and its a bonus that Lavender is so good for the skin and your wellbeing!
To use you simply just smooth over the skin and rinse off after 10-15 minutes. I’ve found it good to just moisten it then gently massage so you can exfoliate with the almond shells.
Its an absolute pleasure to use and Chloe insisted I share the experience.
After removal my skin felt so soft and smooth, and it wasn’t dry and tight feeling either which was great. I’ve used it weekly and my skin has improved, however I felt that my skin would have improved by then anyway as the breakout was hormonal. I definitely think it brightens and smoothes, and there’s no doubt that lavender is great for redness and blemishes, it also didn’t aggravate my skin at all. I would definitely use this again, however it’ll probably take me a while to get round to it as there are others I’ll probably try out first, just because!
75g is £6.50 from Lush.co.uk
It’s a bit of a weird thing writing a blog about multiple subjects and I’m not entirely sure that it works yet. I have got a lot of new followers lately (hi!) that I’m fairly sure are here for the beauty content (stay tuned for Urban Decay lushness, more Makeup Revolution, and some fab skincare posts) but I wanted to make this blog about something more, something about me, my family and my life, hence the posts about Aspergers, and Migraines and of course Thor based posts. I think those blog posts make my blog a bit more personal, rather than just being another beauty blog as I was before, not that there is anything wrong with that at all, I just wanted to be a bit different this time round.
I’m not sure what people think, but I’m hoping that if you are just here for the beauty posts, you’ll forgive these posts that seem to go off topic from time to time, and either read them or just skip them.
Anyway, short ramble aside, I thought it was about time for an update on Chloe and whats going on with that issue currently.
The short answer is that nothing much has moved on, we are still on the waiting list for assessment, but we now have a second referral in place with the Child and Adolescent Mental Health Service (CAMHS) to look at the anxiety and panic issues Chloe has been experiencing. Although, thankfully, that is in a lull at the moment and the daily panic attacks have subsided.
A friend recently sent me this link and I am now suspecting this might be what we are dealing with. Pathological Demand Avoidance, but that said, I am not sure how likely it is that this is something that would only occur at home.
Behaviour wise things are still pretty bad and Lola still takes the brunt of it all and I worry about them both a lot.
I reached out again to the ASD team, stressing again how concerned I am about the long term effects on Lola and while they have said they will come back to me on this, they have replied in the interim saying they share my concern and that it may be a safeguarding issue…cue days of high anxiety and panic and waiting for Social Services to turn up on my doorstep. I’m calm and rational again but I still don’t know what they mean by that (although I understand the concept of safeguarding) or what it could mean for us.
I’ve lost my temper with the school, when I went in in my panic about the mention of “safeguarding” they were surprised and said that they didn’t realise it was that much of a problem. Clearly they have not listened to a word I’ve said or paid any attention to my tears over the last two years. The support worker they hooked us up with, the one who offered such promise as he seemed so fantastic has disappeared. He went off to do some kind of placement for a couple of weeks and we never heard from him again. No one contacted us, no one told us until I went in and asked, and they apologised because “they didn’t realise he was so involved with us”… so we are back to having no support at all again. With nothing offered in its place.
And then there’s the dental issues, last week, Chloe had six teeth removed, due to sensory issues she had five seriously decayed teeth and one wobbly one that had been wobbly for nigh on a year. Again, I’ve been flagging up to professionals since she was a baby that there were issues with her teeth and oral hygiene…and now this… and I don’t really see that we won’t be back again in another couple years having more out, because we’ve got no advice on how to help her with this. The operation itself was upsetting, as it would be for any parent, but it was short, the most frightening thing for her was being put to sleep, but for me the most distressing thing was her belief that she wasn’t real when she woke up, she was frantically pinching herself and crying “Am I real” “Am I here”…. awful, I hope we don’t have to endure that again. She’s had that reaction to bad dreams before, woken up and not believed she was alive, thought she was actually dead. It’s a horrible thing for any parent.
As always I feel like I want to stress that despite our issues, I’m truly appreciative of the fact that on a scale, our problems are fairly minor, and I’m thankful for that, so many have it so much worse.
So, time passes but nothing changes…but lets just have it on record, that its not for want of trying on my part! And sometimes, the girls actually seem to like each other.
Me and Lip Smackers have a long history! Back in the 90’s there was a chain of stores called Bow Bangles here in the UK, it was bought in the mid nighties by Claires Accessories, and thats how it still is today.
When Bow Bangles arrive in Exeter it was a treasure trove the like of which we’d never seen before and my friends and I were particularly addicted to Lip Smacker lip balms. Prior to learning about Lip Smackers, your only flavoured lip balm options were Chapsticks and this was a whole new world of lip balm pleasure and quite possibly the reason I still have more lip balms than I really know what to do with these days!
These are the ones my friends and I were totally into.
I was really pleased to be sent a Lip Smacker Coca-Cola Party Pack* to try out.
My absolute favourite is the Grape Fanta, with Cherry Coca-Cola coming second, but they are all lovely! Chloe likes the classic Coca-Cola flavour and Lola likes Pineapple Fanta. They don’t just taste and smell good, they are very moisturising and protective too.
I’m happy to see the Lip Smacker brand going strong, they will always have great appeal to all ages I think.
This Party Pack is £12 and available from Claires along with lots of other Lip Smackers…. I’ve got my eye on the Disney Frozen ones (Blueberry for Elsa and Coconut for Olaf) but again I think it’ll be a battle with Chloe and Lola!
*Product received free of charge for review purposes