Just Charlie G

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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)!

12 responses to “To Diagnose or Not To Diagnose”

  1. Natalie says:

    I seem to know a fair few people in the same boat as you, including family and most have eventually gone down the diagnosis route. Not because they want to label, I know a lot of them felt very strongly about labelling their child but because it u locks a whole heap of support that wouldn’t be available otherwise.
    If you think that the family support worker is not helping at home please ask for another (although this may be where getting a diagnosis would help – specialist help might be more forthcoming).
    Do you think if she was officially diagnosed she would understand that? I wonder whether it would help her modify her behaviour because she would know why it is happening, even if she can’t empathise she might be able to comprehend what she’s doing in a more logical and objective way?
    Whichever route you takr, i hope you find some calm and peace.

    • Charlie says:

      Thanks for the comment…in answer to your questions I really don’t know. I think it’s hard because as school manage her well there’s no need for a diagnosis and if we could just manage her at home there’d be no need there either… so hard. Much to think about and thanks for taking he time to read and reply x

  2. Barb says:

    I am a silent follower and I usually thrive in being a wallflower, but in this case I think I should pitch in. I am a teacher and I spent a few years early in my career working with children with ADHD and Aspergers. I think the most important thing is to find a happy medium. For you, your family and your child. I think working with a qualified doctor, a specialist is better than a GP, is a good thing. The older she gets, the more difficult her behaviour will be among her peers. I don’t see medicating or “labeling” is such a bad thing, first of all because she sounds like such a bright child and being able to focus properly on things would definitely be something that will make her happy and keen on doing more. Labels can be useful to find a solution and give guidelines to teachers – it is so hard for us to help students if we have no clear diagnosis!. Once students see that a new path opens up in front of them because the fog has cleared off they are more keen to comply, even more so when they are intelligent and can channel their energy in things that make them proud and make parents proud too. A big hug to you, you are a great mum!

    • Charlie says:

      Thank you SO much for coming out of hiding, and for your helpful comments. The only thing holding me back in regards to school is that the teachers often forget one behaviour as they learn to manage it, and so from the (excellent) teacher’s perspectives there are minor hiccups that are easily fixed…. put together and combined and remembered, it all builds a bigger picture. However, I am inclined to agree with you, and one thing the Ed Psych said, despite no diagnosis, is that “Aspergers can be particularly difficult for girls in puberty”… I won’t ever forget her saying that, because basically, it was then we realised that we weren’t alone in our thoughts on what it was, and I also thought at the time… okay…well thats great… what do we do about that when it hits then?! I really appreciate your input, and it’s very much taken on board. I think we will go tot he GP (to get a referral) and see where this path leads us… we can always stop the train if we want to get off I guess! Thank you.

  3. Daniella says:

    I didn’t want to just read and run. What a time you have been having, I really hope that you get the help you need soon as it sounds like something is lacking on the help front.

  4. LittleMama71 says:

    Thank you for sharing. I don’t pretend to know what it feels like to be in your shoes right now. I guess my comment would be this, I know it’s hard to digest that your child might have to be medicated in some form, but imagine if it really really helped her? It’s hard to get over the stigma of meds but the truth is sometimes it is required…sometimes it is life-changing. I’m thinking of you all and sending good vibes your way. Stay strong xo
    Hugs, Lisa

    • Charlie says:

      Thanks very much for your comment… no I’d never say never, we are going to follow the path and see where it leads us I think.

  5. My good family friend has Aspergers and was diagnosed quite late on. He has it very mildly but I think we could say he was difficult to manage as a smaller child. As soon as he got a diagnosis, everything changed, and in particular the label stopped him from being a ‘naughty boy’ in the eyes of others but someone who needed a little more patience and understanding. He is grown up now, and absolutely delightful – competent, has a job, has been to uni, and although prone to anxiety attacks, he is managing his life as an adult. Half of me thinks a late diagnosis meant that the family ‘muddled though’ and developed coping strategies they might not have otherwise – i.e. those that suited their family and not a stock strategy. I think it’s important to remember the whole family approach; that one person can’t necessarily have all the attention all of the time but quite how you find that balance is something that you have to find within your own family unit. Your support worker doesn’t seem to be listening to you so maybe get rid and drop a stress. You’re the one that knows your child inside out so you should do what you think is best. Sounds to me like you need a break to regroup and gather your strength – if it’s possible to make that happen, please do it! xxx

    • Charlie says:

      Thank you! Well I took a mental break from it all and have spent a week or two not worrying or stressing about it all (as much as is humanly possible at least), but an actual break… gosh… no, don’t see one of those on the horizon at all!

      You good family friend sounds like my husband! He had problems but is now married, a father, a company director, we’re not worried things won’t end well, we know first hand things will be fine… its the journey we need some help with! Thanks for your input, it’s much appreciated xxxx

  6. Helen says:

    I always crack on about Claire Sainsbury’s Martian in the Playground, I guess that’s partly because I found it accessible to read in comparison to other books a bought – but the bit that really stuck me at the time was that she said Aspies like labels – making a label a good thing.

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