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So, we have done it, our beautiful little girl has her ‘diagnosis’.

The wait to see CAHMS was too long, the whole family was suffering and the ripples were being felt every waking minute so, we decided to pay for a private consultation. For us, the benefit of knowing  what we were dealing with far outweighed the initial cost. Instead of existing in a semi-real state for  months to come, we needed to move forward, embrace what was happening and ensure we could  do everything we could for our lovely girl. We are not millionaires, we are hard-working people who  were quite simply at the end of our tether – one more straw and our backs would have broken.

I appreciate we are lucky to be able to make this financial decision – this step towards the goal of  our daughter being happy was a sacrifice we were willing and able to make. It angers me so much  that we had to resort to paying privately (I have worked and paid full taxes for nearly 20 years now  and so has my husband). Being pushed to this decision out of absolute angst and upset, for it to be   the only viable way of getting the help we needed quickly, leaves me feeling rather sick.

So, why the heck do I feel I have to justify this decision? To be honest, I feel guilty because I now  know what is going on, I now know how to start moving forwards, I now know what the next step is.

So many families are still in limbo, so many are frantically trawling the internet for ‘symptoms’ and  ‘tests’ and back-up and support and someone to say ‘I understand’. I feel guilty because I can now  see a future, I have now realised that knowledge truly is power, I can feel the determination and  passion rising up inside me and I know that we can do it, we can get there, we can make her life  happier and better and calmer and more relaxed.

I feel guilty because my worries and concerns from  day one have been validated; I was right, there was something ‘wrong’, it wasn’t just me, I’m not a  bad mother, I’m not a useless wife, I’m not mad, I’m not deluded, I am correct.  I feel guilty because every mother of an Asperger’s/ASD girl should be able to feel this way without  years of heartache, without loneliness and isolation and turmoil. Every mother should be able to  know that she is doing her best and her best is good enough. She is not a failure, she is not useless,  she is not neurotic.

I feel guilty because I now have the confidence to push for questions, I now have the energy to fight  my corner, I now have the resources and the contacts. So what will I do to assuage my guilt? I will  fight on your behalf as well as mine, I will share my journey in the hope that it may help you, I will  continue to tell you all how incredible you are and I will always be on your side because I know how  you feel.

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2 thoughts on “Mixed Emotions

  • April 8, 2016 at 2:44 pm
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    As I said in reply to your husbands blog, W OW. That is a heartfelt statement your daughter is lucky that she has loving parents who are not quite on the breadline and can spend some money to look after her. The U K is supposed to be a welfare state but that seemingly does not apply to patients who are suffering from much more than the common cold. From your statements it seems that the post code lottery is alive and well. I am sure that you know who I am. Wy wife and myself can only offer moral support because of distance but sometimes that is not a problem.

  • April 8, 2016 at 3:37 pm
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    Hi Jim, thank you and we know you are there. I know that some of this will be very emotional to read and for that I am sorry it needs to be done at a distance. We appreciate all your good wishes and moral support – distance in no barrier to feeling cared for. G x

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