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.