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.
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.
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.
Regular readers of my blog will know that Aspergers Syndrome, as well as other related conditions, are a subject very close to my heart. My daughter Chloe is currently on the waiting list for assessment, and we are also looking at another condition now that seems to fit with her concerns (and in some cases strengths!).
So as it stands at the moment we don’t know what label we can give Chloe, but what we do know is that there are definitely sensory issues.
Before having a child with these sorts of needs, I would have assumed a sensory need to be something like not liking the feel of a fabric, and that sort of thing certainly can be a sensory issue, but in reality, having sensory overloads can be so so much more. It’s hard to explain, but who better to explain what it feels like than someone who experiences them.
Louis Morel, is a young adult with Asperger Syndrome and has created a short video describing what Asperger’s is, and what a sensory overload feels like. The film has been made with Ambitious about Autism’s myVoice, an online space for young adults to connect and discuss issues they all face. It’s well worth a watch.
Although what Louis is describing is a more severe version of what Chloe experiences, her issues are quite mild compared to this, it has really helped me to understand, and I hope it helps you too.
For more information you can check out the Ambitious About Autism website.
If you’re following our story, you’ll know that Chloe, age 8, is currently on a waiting list for Autistic Spectrum Disorder Assessment. It’s a long old process which I’ve covered in other posts. Her anxiety has really stepped up a gear over the last few months, with panics daily or every other day for a period of time, thankfully that seems to have settled down again but the anxiety attacks always return at some point.
We now have a second referral in place for Chloe, after a meeting with the ASD team, they were extremely concerned about Chloe’s anxiety levels and suggested a referral to CAMHS (Child and Adolescent Mental Health Service). Again, nothing happens quickly and there’s a long wait for this, so I’ve been forced to find other ideas to help us get through these panic attacks.
We’ve long been aware of how important breathing is and as soon as we (either Chloe or me) become aware of what’s coming we start with the deep breathing. A problem for us is that most of Chloe’s panics occur when she’s alone in bed, so by the we are aware there’s a problem Chloe is usually too far into a panic to come back easily.
So I came up with the idea of putting together a little kit of things that can help her to relax before we get to full on panic attack stage. I thought I was being super clever, but it turns out that such kits are already a “thing”, and are known generally as Self Soothing Boxes, because the idea is for the child to use them to calm themselves.
So putting together our kit was quite easy, I had lots of ideas, some of which I’ve not yet done, but will mention at the end of the post. The items I included for Chloe are quite specifically chosen for her, some of her needs (and indeed issues) are very sensory, so I chose sensory products to go inside our box.
So I started by buying a box, something pretty and appealing for an 8 year old girl.
I think this one was £6.99 in W.H. Smith from memory.
Inside I put two chewy bangles. Chloe gets great satisfaction sometimes from chewing, I mostly like her to have chewy jewellery because if she doesn’t have it, she chews her hair or clothes, these cute little bangles are from Gumigem.
Next I added a little Taggy. Now, parents with babies may already be familiar with Taggies as they often used for babies. I bought this one from Ebay, Chloe, does love a good skull, and I bought it for two reasons. Firstly the fleecy fabric and ribbons feel nice, and for a sensory person, touch is important, and soothing. Secondly because I also bought a bottle of Lavender Essential Oil. I really believe lavender is a relaxing scent so I had the idea to add some drops to the Taggy, so that it was scented. The Essential Oil does not live in the box permanently, but Chloe is under instruction to let me know whenever the fabric needs topping up with scent.
Next I added a Fibre Optic lamp. This little bargain was £3 in B&Q in the sale, but they had themed ones (Hello Kitty, One Direction, Moshi Monsters etc) for £6.99. These are really gorgeous, beautiful colour changing lights, and very tactile (but because it was a cheap product I can’t imagine it’ll last too long).
Next I made up some home-made stress balls. Now I can’t take the credit for the idea but I can’t for the life of me recall where I got the idea from, however, they are so simple to make, basically just stuff some balloons with play doh, that’s it. Mine need a bit more work as they are a bit small and the biro faces are just rubbing straight off, but they work and Chloe gets satisfaction from squeezing them. I have bought stress balls but they never last longer than five minutes!
The final item is a bottle of Rescue Remedy. I’m going say straight off that I think Rescue Remedy is a load of nonsense, I don’t believe it does anything. I’m not an 8 year old girl though. I had hoped that there would be a placebo effect when entering a state of high anxiety, so if I told to take some Rescue Remedy to help calm her down, then she would willingly. Again, this item doesn’t live in the box, but its part of her kit and its where she can see it but can’t reach it, she just has to ask a grown up if she wants a drop.
That’s everything in Chloe’s box right now but its a work in progress.
I’m sure I’ll get more ideas and keep adding to it. It seems to work well, sometimes she goes and gets it out herself, and sometimes I have to give her a nudge, and sometimes she’s so far gone its just too late, but I’d recommend it for anyone, even kids who don’t have anxiety. A little box of favourite things to touch and look at can be really calming when a child is a bit over excited!
I’m also expecting delivery, tomorrow hopefully, of a weighted lap pad for Chloe, I don’t really know if weighted items will work for her but I’ve heard a lot of good things about the effect of weighte blankets on children with ASD and sensory issues, so I’m optimistic, but I’ll update on that another time.
I hope this post has been helpful to someone out there anyway.
It’s a misleading post title I know, as those of you who have been with me a long time will know this Aspergers Assessment journey has been going on for many years already. You could say it started when I repeatedly saw health visitors when Chloe was a baby, because she wouldn’t take a bottle (she never did), she wouldn’t let me brush her teeth (or tooth), or because I couldn’t wean her onto solids (she was over a year old before I got her to start eating), or when potty training caused us so much distress she would spend days crying because of her pain and need to go to the toilet but her fear of going stopped her (going back to nappies and a course of laxatives in the end). Or you could say it started when she was about two and a half and I couldn’t manage her gentle assertions and refusal to do anything I asked, and I attended a one to one parenting course to try and help me parent her better, or you could say it started when she went to school and I she was spending all her lunch times and break times alone and I was being called in daily because she couldn’t abide by simple rules (we moved schools and its all been better since then). Or you could say that the journey started when a Family Support Worker failed to support us and I went to the GP. At this point we were referred for assessment. Some months later we attended an initial assessment with a paediatrician who agreed it was worth proceeding to full assessment. The wait for which is two years in Exeter. You’ll of course know some or more of that from my last post on the subject.
Since I wrote that frustrated and angry blog post, things have changed a little, we now have a Support Worker who I connect with , who isn’t suggesting reward charts and going out more at the weekends, he understands the problems and he has suggestions I like and understand. At that time (back in January) I decided that the two year wait wasn’t good enough, things at home have deteriorated in a variety of ways, Chloe has multiple panic attacks a week now, Lola is still a victim of Chloe’s bullying day in and day out and we have been to the hospital re her teeth and lack of self care in that area, and she has to have seven teeth removed. I started reaching out to anyone I could and eventually struck gold when a Specialist ASD Practitioner suggested I go in for a meeting to discuss the situation. I have since learned that actually, the assessment process begins from this point, today, so thank god, the two year wait is is no longer the Case for us. I do appreciate that from this point in time things will not move quickly, and that in the scheme of things, we are probably low priority (although living with it day in day out, it doesn’t feel that way) so this is just another step along a very long road.
I am a ball of nerves and anxiety today myself, I don’t know how long I’ll have, I don’t know how much I will have to push, I don’t know what to expect, but at the same time I am relieved, relieved to be at the point where someone that can help us will be sat listening to what I have to say. There’s fear too, fear that after all this, they may not agree, they may not see what I see, they may not offer a diagnosis, and if that is case… where do we go from there? Does that mean there’s no reason for the issues we have? Does it mean we’re shit parents? I don’t know, I’m trying to not let those worries take over and concentrate on being optimistic, my beautiful Chloe deserves help, she deserves my positive outlook and she deserves to hear her concerns and worries are being addressed.
For other parents who are on this journey, I offer the same advice that has been given to me over the years, you will need to push and fight and keep going to get heard. Don’t stop. It will be hard, it will be exhausting, it will be stressful, but don’t give up. Don’t just settle, keep fighting for your family and for your child. Eventually, you will be heard.
How’s your Easter been? Lovely that the weather has turned s sunny for the second week of the school holidays… alas that means bad times for my migraines, but I learned a long long time ago that moaning about the sunshine causes other people to view you as a killjoy, even if it wrecks your health!
The school holidays have been a bit up and down for us, Chloe has spent half of it being spectacularly horrible to her sister, her sister has been particularly sensitive to everything, crying a lot. Both kids have been suffering with a hint of cold and some nasty coughs, and my ears have been all congested making me dizzy and my migraines have been pretty bad. Poor old Thor had a tooth removed yesterday and he’s feeling pretty upset about the whole thing today.
That aside we’ve had some pretty nice times, and some pretty good chocolate.
There were walks with tree climbing and duck feeding.
There are still a few days left before the girls return to school, they are out today with Nana at Crealy and I’m sat here blogging, waiting for the trail end of a migraine to disappear, but I’d imagine we’ll just be relaxing, with maybe a trip to the park tomorrow, winding back down before school starts again. I’ve got extensive notes to write up, ready for my appointment with the Specialist Autistic Spectrum Disorder team next week, re Chloe. I’m going to make sure I go armed to the teeth with information to support what I’m saying about there having been issues at home! After this Easter break, I’ve got more to say than ever.
All in all though, it’s not been a bad break, sometimes the school holidays can be unbearable, this one was about 50/50, still, I’ll be glad when life is back to normal and school starts up, it’ll be nice not to hear crying and arguing all day every day for a while!
After quite a lot of thought I’ve decided that actually, that I would like to talk about my daughter Chloe, on my blog. l think it will be helpful for me, but also that in talking about the difficulties and challenges of our family life, it may in some way help someone else, even if only so they know they are not alone.
This post however, isn’t so much about the ins and outs of our life, but more a gripe about the process.
So my starting point here is to say that we are awaiting assessment for Chloe and have been since August. We have over a year and half wait until we get to that point based on current assessment waiting times in Exeter.
Prior to this, we waited a year for an initial assessment that would tell us whether full assessment was warranted or not. Three years basically. She’s 8 now.
To give a quick run down of what’s going on here, Chloe has had all sorts of issues since she was a baby. It is fair however to say that we didn’t really start seeing the whole picture until around the time she started school. Prior to this I just felt she was difficult, each developmental milestone threw up problems and discipline was impossible due to the absence of emotion when dealing with her. When she was at nursery, I had one to one parenting lessons in order to address some of the issues. Some of the tips I was given helped, most did not as Chloe just didn’t respond as expected.
At school things went from bad to worse, and in fact we ended up moving her to a new school, where thankfully things have been much better in regard to school issues. The school organised an observation from an educational psychologist, she stated that she could see some social and emotional issues but that they were being well managed by the school, which they were, and that at that time there was no further requirement for her involvement.
Things at home though have never been good. Stress levels are high. After sobbing to the school SENCo a support worker was arranged. Although she tried to help, I felt there was a fundamental lack of understanding of what I was trying to tell her. We had already tried reward charts (although on her advice we tried again), the only thing that helped slightly was the behaviour management of giving a first warning, a second warning followed by a consequence but it was hit and miss because once Chloe is in melt down, consequences mean nothing to her. But the support worker insisted we keep going, despite my mentioning that Chloe doesn’t place much value on anything so we couldn’t find a consequence that was 100% effective.
It was also implied that we needed to keep her more active. I say implied, but actually I was told that we needed to do more as a family. I found it really offensive because we do plenty but I don’t feel the answers to the problems were being out and about. In fact, some of our worst days have been while we were out. In the end, both I and the Support Worker felt that it wasn’t helping and that ended.
It’s not just the behaviour that causes us problems, poor Chloe suffers terrible anxiety, we deal with fairly frequent panic attacks, and many more “nearly” panic attacks. And the sensory issues, some of which have led to tooth decay.
I said I wouldn’t, and I won’t, go into the details of life in general right now, I’ll save that for another post.
I ended up getting a referral from the GP. A year later we went to see a paediatrician for an initial assessment. It was quite thorough but there would never be enough time for me tell anyone everything. Regardless, the doctor felt she had seen and heard enough to proceed onto full assessment, which where I live is a 2 year wait. I spend a lot of time online talking to other parents, this is the longest wait I have heard of.
I have to say this is the point of my post. A two year wait is quite frankly obscene. We have absolutely ZERO support. My daughters teeth are still decaying, her anxiety levels are increasing and in the mean time her behaviour is still very difficult to manage, meaning the rest of the family’s anxiety levels are increasing.
And Chloe, for all the hard work, sometimes she gets upset, she says she doesn’t know why she’s like this? She can’t stop it. She is out of control, and I know she is, I can see it, I can see she can’t control herself. And it breaks my heart that in her moments of clarity, she’s so confused about it. I’m grateful that for the most part she couldn’t care less about it, or anyone, because on top of everything else she doesn’t need guilt to deal with.
And so here we are. Life’s hard, I’ve got health issues, I’m stressed, my youngest would be handful all on her own, and I have no help. I just cannot believe this is acceptable in any way, to leave a family, and in particular a child, in limbo for so incredibly long. I know people have it worse, I really do, and I always knew this would be a long journey, I just had no idea how stressful it would be.
Thank you for listening to/reading my rant.
PS: I think it worth mentioning that I went to my GP and asked about counselling, I was told my only free option was group CBT, or to pay privately, which is financially not an option for us.