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.
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.
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.
I try not to talk too much about this on the blog because well, I am wary of my daughter’s future, so I have already made a note on my calender to delete all these posts at a future point in time.
And so, if you’re a regular reader you’ll know about the issues we’ve had with Chloe. We strongly suspect Aspergers and I strongly suspect she suffers with some form of hyperactivity. Both of these issues, on a scale, rank fairly low, but throughout Chloe’s life they just keep causing problems. We can have a couple of weeks go past where we think we are imagining everything, followed by the month from hell with her.
A really brief run down of events to date in very basic form.
Social issues and bullying lead to my insistence that it wasn’t because other children were horrible (although actually some of them were), but that Chloe was unable to manage her relationships, and there was something about her that unwittingly making her a target for childhood banter. There were lots of issues that lead to us moving her to another school, but also to the involvement of an Educational Psychologist.
Chloe has been much better in nearly all areas of school life since we moved her, there’s no doubt it was the right move, there are still issues, but still, school is much better.
The Educational Psychologist did an observation of her at school and said in basic terms that she had seen signs of emotional and social issues but that they were being managed well by the school. Further discussion seemed to imply that she did agree that it was likely Aspergers, but as she was managing well at school, and the school were managing her well, that there was no further intervention needed by her at this time.
I have stayed closely in touch with the teacher and the School’s Special Educational Needs Officer (SENCO) and issues have been raised that are individually minor, but together, to me, raise a bigger concern. More on that later.
Meantime, Chloe’s behaviour at home has been appalling, stress levels are frequently sky high for everyone in the house. Let me be clear, Chloe is not a naughty child, but she is full of energy and so unable to settle to anything, ever (although as mentioned before, once in a blue moon she sits and does something for 15 minutes) but her energy levels are sky high. She hops around on the spot, and when like this is prone to irritating behaviour and spontaneous bursts of energy, which usually involve dive bombing her sister or trying to engage someone in an activity they don’t want to do. Combine this behaviour with an inability to take no for an answer and a total lack of empathy and life gets difficult.
I’m not even going to go into the panic attack aspects of life or other complications.
School holidays are my worst nightmare, I get incredibly stressed as it’s just not possible to keep her occupied all day, every day, her behaviour slips, she upsets her sister, won’t say sorry, it’s a circle that repeats itself over and over, all day. So I went to the school and asked for help.
They hooked us up with a Family Support Worker. Although she’s done some valuable work with Chloe on a one to one basis at school (which has helped us to see a bit more of what’s going on in that bright little mind), I feel the work she has been doing with us at home has been entirely useless. She refuses to accept what I’m saying about anything, glossing over it and suggesting rewards and taking her out to burn off some energy… well of course we’ve tried those things. In fact one of our worst periods ever was on holiday last year, out all day and every day… the behaviour was through the roof.
We’re in a calm ish patch at the moment…but I think I’m so used to the stress now some of it barely registers, we took the kids to the cinema yesterday, for two hours beforehand Chloe was absolutely out of control… we ended up shouting, she ended up crying and saying she couldn’t help getting over excited, I felt guilty because I know she can’t…. its not much fun really.
And so, having spoken to the School SENCO and the School Nurse, they have two suggestions, the first being that it’s time to get the GP involved, and secondly to have a round table with all professionals involved. I missed out much of the detail, but today Chloe’s teacher called me in and said she’d spotted a behaviour she thought would be worth mentioning to other professionals involved, which is great, but being the central point, the person who knows all the details from all the different professionals, becomes like juggling, trying to recall which professional said what, and what I need to tell all the others, and what I’ve already told them, it all gets a bit much at times so the round table meeting sounds helpful…
But the GP aspect I’m not so sure about. We need help with her for sure, I don’t want her childhood to consist solely of us moaning at her to try and calm down, or leave her sister alone, or whatever it is, but don’t get me wrong, the Aspergers side of her clearly doesn’t get affected by this sort of thing, but it really does upset me.
But if we take the GP path what then? Diagnosis has it’s benefits of course… least of all, just knowing, just having an answer, that would undeniably feel good. Of course, it may mean we get some more support that will actually help us.
But then she’s labelled for the rest of her life. Her teacher says that because she’s so capable, she will never need one to one help in the classroom so no one need ever know…but I don’t know, I have had others suggest we really shouldn’t.
And if she is hyperactive… would we want to medicate… no I’m not sure we do!
Really I don’t expect anyone to answer and tell me what to do, I’m just getting it out of my system by writing it down really but I’d love to hear from parents going through similar, because it feels like a constant battle and has done for years now. I don’t know where all this is going to end, or how it’s all going to end, or if she’ll grow out of the worst of it all, as I say, sometimes things are all completely normal (whatever that is)!
I know I’ve said it before, but just a little reminder. Whilst still very much a beauty blog I like to occasionally post about other things, whether it’s my life, or a book review, or some other off topic subject and just to keep things a bit separate I keep these for the weekends. So it’ being Saturday here I am.
As you all know there have been some issues with my lovely eldest daughter, Chloe. I don’t plan to go too much into it all because I’m always concious that in the future she may read my blog so mainly this is a bit of an update because I know a few of you care, and because it’s good for me to have a place to talk about these things. Not only that but our experiences might help someone one day who is going through the same thing. So I’m going to try to be both vague and open. A bit of a strange combination I know but here we go.
Okay so I’ve written before about the problems we’ve been having with her over her little life so far. It’s taken various forms, with emotional and social problems at school and home and behaviour problems at home. As the years have passed we’ve tried to help and fix things ourselves with various methods but nothing has helped. The previous school seemed to be powerless to help her with anything and so we decided to move her.
Since then, lots of ways things have stepped up a notch, for better and worse.
Her behaviour has been getting progressively worse at home but at school things have been good since we switched schools.
Actually now I’m here I’m not sure how much I want to divulge at this point in time but suffice to say that the school has been amazing and measures have been put in place to help us out at home and the school are managing her just fine. So although we’re at the beginning of a long road with her I do feel positive that strategies and support are in place to help out with what we have to come. She had her assessment with the Educational Psychologist who said at the moment her behaviour fell in what would be considered “normal boundaries” and there were social and emotional concerns but that at the moment they were small enough to be managed by the school. And fortunately CJ has an amazing teacher who just can’t seem to do enough to help and I’m so pleased. The school have arranged for some support at home. I was afraid that what would happen with the assessment was that they’d see a bright girl with no problems and say there was nothing wrong and leave us to it. But fortunately the Psychologist could see the signs and was concerned enough to want to review her again in the New Year. Which is a relief because there aren’t many feelings worse (as a parent) as having to try and convince people who think your child is fine, that actually, there’s something wrong. It’s a horrible feeling and one which brings with it much guilt. For now, I’m reassure that others in Chloe’s life believe what we say and indeed see some signs of it. The good news is that the Psychologist wants to review Chloe again. This is also the bad news. The reason being Chloe is still new in her school. The fear is that as she is more comfortable there and her need to give a good impression diminishes, the more the behaviour will slip and the more of the problem side of her the school will start to see. Hence the review.
So whilst a large amount of stress has now gone for the time being, there is still some stress remaining but a lot of sadness as we come to terms with the fact that this isn’t a phase and that the problems are problems that are going to be around for a long time. Looking positively though, we’ll get some help and Chloe will learn to manage life. She’s 7 next week, I can’t believe it!
Anyway, that’s that. I could go on, but I’d be surprised if anyone reads what I’ve written so far never mind if I really start going into the details of the situation and everyone involved’s feelings!
I don’t know if there’s anything in the world more painful than watching your child suffer… whether that be a physical suffering, or an emotional suffering. It’s fair to say that for a parent, this can translate to a physical nearly-pain like feeling. Very hard to describe.
I’ve talked before about the problems we have with Chloe and I don’t want to go into too much here really.
But she’s facing difficulties, socially (amongst other things), and at six years old she’s been having social difficulties for most of her little life.
So the school as a whole have been great at getting an Educational Psychologist referral and appointment but not all that great at any thing else, so today (Friday), I think I’ve finally made the decision to move her to another school. It’s not an easy decision and it’s not set in stone at this point but I owe it to my children to give them the best childhood I can, and the best education and the best school life I can. And having a school that actually seems to care would be a good start.
This crazy beauty deserves the best of everything and that means finding her a school where her teachers don’t find her annoying or irritating (and if they do, they are able to find a more diplomatic and sensitive way of saying so!).
If anyone has experience of moving a child to a new school at about this age (6), I’d love to hear how it went for you. Please share. Thank you.