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.
Well today’s been horrific. And by horrific I mean by 7.30pm two of us were crying (me and Lola) and by 8pm Chloe had joined the club too.
I know due to many previous comments from you lovely lot that there are lots of you who have been through or are going through the same thing and whilst I spend huge amounts of my time shouting and reprimanding, warning and doling out consequences, some days nothing works.
Some days the behaviour is beyond the pale. Some days nothing you do or say makes a difference. Some days it feels like a losing battle and you can’t keep being calm and collected, doling out the prescribed first and second warnings before following through with the consequences. Some days you just explode with exasperation, exhaustion.
The days when one child is at her most extreme, and the second child starts to copy the behaviour so then you’ve got two mini tyrants on your hands.
Today has been that day. Add a migraine into the mix and you’ve got a lethal recipe on your hands.
Bedtime saw youngest child going to bed with no story, and sobbing because she was just “sooooo sad”, although all of it could have been avoided if she’d brushed her teeth as she’d been asked. Then eldest child also wouldn’t do as she was told and was being vile at which point there were tears from me, and then that behaviour those with children on the spectrum will recognise, the complete lack of concern that Mummy was crying.
All finished up with a dose of eldest crying about how she knows what she’s doing but she can’t stop it and how when she tries to have a nice day it all goes wrong and she can’t help it, and that it happens at school too and she starts a nice game and no one will let her be what she wants to be, even if she started the game and why is her life like that.
And then my heart is breaking for her and I don’t have the answers and I don’t know. I’m just tired, and she’s just tired.
And we cuddle and I’m crying again for my baby and I’m crying as I write this because life shouldn’t be like that for her, or 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.
Something a bit different.
Life’s been a bit hard of late. We’ve been having problems (minor) with my daughter, one problem after another since she was born really. I think I’ve always known what the problem is but had hoped it was something she’d grow out of, just a passing phase. It started with her refusing to take a bottle as a baby, being unable to eat solids until six months after the recommended age, dropping her naps stupidly early and most recently we’ve added panic attacks to the six short years of her life so far. With plenty of other stuff in the middle. It’s not fair and it’s not nice, particularly for her. You can’t imagine having spend six hours sitting with and trying to calm down a six year old girl screaming in the middle of the night because she thinks she’s dying of a heart attack and she needs her family around her because she doesn’t want to die alone, it’s heartbreaking.
And so I’m waiting for a referral to the Educational Psychologists, it’s not necessary in diagnosis terms because I already know what it is. She has Aspergers. We’re of course waiting for the official word as my personal friend can’t give me a formal diagnosis, but I know and all of us that know her, know that’s exactly what it is.
Both my husband and father have it. I already know what it’s like, I don’t need to look any further that my immediate family to know she’s the same.
And the thing is, although I know what’s coming, and although I’ve been ready for it for a long time, I feel absolutely gutted because now there’s no hoping it’s a phase, now it’s reality check time.
It’s upsetting to have to deal with this but it’s hard to deal with the stuff at home all the time at the moment, and life is emotional to say the least. I’m sorry to my readers who sometimes have to see me tweet negatively about blogging, I try not to do it often, but sometimes the negativity leaks into other areas of my life. I still love blogging and yes it is disheartening sometimes but other times its the best thing in the world.
On a positive note, I’m back on Weight Watchers and I’m having my gym induction (9lbs lost so far), at the very least it’d be nice to not be worrying about how fat I am amongst all the rest of the crap that’s been raining down on us for years now.
I love you Chloe Jayne, every single bit of fight is worth it, just to have you in my life. You are a legend, your cuddles are the best, you are completely hilarious and so so so so clever. I’m unconditionally proud of you. Always.