Just Charlie G
26. 01. 2015

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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.

8 responses to “The Road to Diagnosis”

  1. loveaudrey83 says:

    I don’t really have any words of wisdom or anything, I just wanted to let you know I think of you all often, especially Chloe. You might not feel like it, but your obvious worry and concern is just another sign that you’re an amazing mother who’s doing her best to help her daughter. I hope everything falls into place eventually.

  2. Worshipblues says:

    I am so shocked and disappointed that you are left to tackle all this alone in a country where we are lead to believe has one of the best support systems in the world. I really don’t know what to say. 2 years sounds so wrong! I know you have probably thought of everything under the sun that you can do so pardon me for asking, but can you not self refer somewhere? Like in a larger city where more help may be available?

    I feel so useless because all I can do is read and send send you virtual hugs. Hang in there!! I hope a light appears at the end of this tunnel for you very soon!

    • justcharlieg says:

      I really don’t know. I have sent out a plea of assistance to the department we saw for an initial assessment. A local MP offered to take it up for me, but was unable due to my postcode. I am doing my best to find a way before crack! Thank you. As always xx

  3. Moi says:

    Firstly, I’m so sorry to hear that you have had such a long road. Both children are gorgeous and a credit you you both. You need to remember to look after you too. 🙂

  4. BritBeautyBlog says:

    Oh, this is so angry-making – how utterly and absolutely crap that the wait is such a disgrace. I don’t have any words of wisdom but your determination shines through as always as does your love and care. xx

    • justcharlieg says:

      Thanks Jane, I’m definitely determined, I spend my life making phone calls, sending emails, talking to MP’s and so on! Its absolutely unacceptable to me and I know I’m biased but I think if I wasn’t I’d still feel the same, just slightly less emotionally invested! We may not even get a diagnosis in the end, who knows, but the wait is absolutely appalling.

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