Walking on rocky ground…

So, this is exactly how I feel right now. I don’t usually mention this too much but this week has been tough. Our local services have been entirely useless over the last couple of years with Megan and have failed to diagnose correctly or provide the help that I desperately need for her. She had been doing so well but a combination of events have lead to a tough time lately. I’m completely drained as she isn’t sleeping and her anxiety levels have been sky high so she doesn’t want to leave my side, which is thoroughly exhausting. Quite frankly we are at crisis point and although I’ve made it this far I’m not sure how much further I can go without some support. She would appear to have a rare form of autism which means that there are not many specialists in the country. Local authorities seem reluctant to refer her, instead choosing the pointless exercise of assessing her for more typical forms of autism which she obviously does not fit. I’ve had to become the expert in the condition to prove to the so-called professionals that the diagnosis and management they are recommending is not appropriate. In fact, it makes the situation worse and it is heartbreaking to not be able to help your daughter lead a ‘normal’ life. Social situations and interactions are increasingly difficult, to the point where I am worried about taking her places as she cannot interact and needs tight control of every situation to lesson her anxiety. If she does not feel she is in control her behaviour can be come extreme which of course is not acceptable in daily life in the outside world. She has been at home with me for the last three and a half weeks (due to illness and Easter holidays), which has escalated the problem and I’m worried if I take her away this weekend her behaviour will result in long term problems for us. 

I am now scared, not just for her future but also for mine. I know this will sound completely selfish, but I’ve raised her alone for pretty much the last 12 years and I never could have imagined how tough it would become. It has made relationships so difficult and impacted on my health and to be honest, the thought of spending the rest of my life like this terrifies me. I’m a strong person and have got through so much, but some days are dark and I don’t feel so strong. Of course I love her more than anything and will never give up on her, but I need a break. It breaks my heart to hear my daughter say that she never should have been born and I hate her to see me cry but I’m running on empty and do not know where to turn. I’m so grateful to my friend who took her out for an hour or so today. I haven’t slept in nights due to her being too anxious to be alone and because I can’t switch my head off at night, so to have an hour just to lie down was well needed. This post isn’t meant to be whingey or sympathy seeking – I just needed a release. This isn’t the best written post, the stress has made my fibromyalgia pain worse and affected the fog that it causes in my mind. It’s hard knowing the words are in there but not been able to communicate them but hopefully just getting all this written down will mean I can close a door on feeling like this and wake up tomorrow with some new found strength.

Amy-Louise
xx 

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