Just Charlie G
14. 05. 2013

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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.

17 responses to “Life”

  1. loveaudrey says:

    Beautiful. Chloe is one of the nicest, brightest, kindest children I’ve ever met and you are a wonderful Mother to her Charlie.

    My nephew has Aspergers and I’ve seen what a family goes through trying to deal with the ‘condition’. I hope I don’t need to tell you that I’m here if you need me.

    xxx

  2. Lily M says:

    All of the nicest people I know are on the spectrum somewhere or other, and I used to tutor a teenager with AS and various other learning differences and you know what: she was a joy to work with. I haven’t been reading your blog for very long but already I can tell that you’re a wonderful person and I can tell Chloe will grow up into a wonderful person too.

    (And frankly, if we were all the same life would be a bit boring, wouldn’t it?)

    And well done on the 9 lbs!

    FWIW, my version of the screaming about dying of a heart attack was when I was about 7, I think. We’d done fire safety at school and for months after that I was absolutely terrified that there would be a fire and I wouldn’t get woken up and I’d die. I think everyone goes through a similar stage.

    • Charlotte Gray says:

      I think we ARE all on the spectrum, some just more pronounced than others, and in no way does my daughter have profound problems, but enough for her little life to be difficult age 6 bless her.

      Sorry for your panic attacks, they are horrible for adults, never mind children eh? Thankfully I haven’t experienced them, but I now have experience of them them if that makes sense!

      Thank you for your lovely comment x

    • Lily M says:

      I share some of the symptoms of AS – when I first heard about it it explained a lot of things in terms of how I relate to the world, but when I was six or seven my parents had a lot of other stuff on their plate in terms of their parents being ill and so on, so I just got on with it. The hardest thing was when aged 11 my headteacher said I’d stop getting bullied if I was more like the other girls… Right.
      I’m now 19 – and for the last four years or so of high school pretty much my whole year group respected me for sticking to my guns and being who I was. I was never ‘popular’ but most people liked me, and those who didn’t weren’t worth liking. So it gets a lot lot better, I promise 🙂 If you ever need success stories of really really socially awkward girls (that’s mainly how my difficulties manifest themselves these days – that and worrying over every. little. thing.) then just head over to my blog or email me.
      It’s quite difficult in some ways with the public perception of AS being spotty boys on computers, but as I say I can tell you’re a wonderful person and I’m sure Chloe will get all the love she needs 🙂

    • Charlotte Gray says:

      Thats an amazing inspiration thank you. My husband unfortunately had the polar opposite experience as a child and teen with AS. I hope Chloe follows your path xxxx

  3. Julie says:

    Aw Charlie – stay strong. We found – when the final diagnosis came even though we already knew – that it was as if a total and utter weight had been lifted. No one is to blame and once you have the official diagnosis I’m sure doors will open for both Chloe and you and your family to make life so much easier. It’s so hard being a parent – especially a parent of an Aspie – it’s something they never prepare you for at all those ante natal checkups!

    Keep fighting!

    Well done on the weight loss too!

    • Charlotte Gray says:

      Thanks for the lovely comment Julie, I’m worried that when the ed psych observes her at school they won’t see any problems. She’s generally not too bad at school although losing interest with every passing day….

      I know what the next steps are if this isn’t helpful, but I’m praying for smooth sailing! x

    • Julie says:

      They’ll base their findings on many observations – I’m sure they’ll see enough to make their recommendations. At least you have an idea of what the process is – the not knowing what is happening is very frustrating for everyone.

      You’re a great mom and Chloe is a very lucky young lady x

    • Charlotte Gray says:

      Thanks Julie, really appreciate it xx

  4. Jan says:

    Goodness me Charlie that is so hard, I don’t know that to say other than I am thinking of you. With lots of love Jan xx

  5. Helen Gray says:

    I really hope that it is smooth sailing for you, keep strong xx

  6. I have nothing to offer except big squidgy hugs. You are obviously a great mum. x x

  7. Jaime-Lee says:

    I’m so sorry to hear you & your family have been going through a tough time. I can’t even begin to imagine how you must be feeling. Sending you & your beautiful family lots of positive thoughts!
    Congratulations on the 9lbs, that’s amazing work! xoxo

  8. chloe and lola are both gorgeous girls. a credit to you both.

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