Most people will remember the Summer of 2012 for the London Olympics, but for me it was the time that I first admitted that I wasn’t Supermum and the first time that I made a plea for help.
Since Joseph’s early arrival, life had been extremely difficult. Days before he was born, my mother in law had been diagnosed initially with a stroke and then the day before he was born, it was confirmed that she had a terminal brain tumour. Her illness affected the whole family and she lost her battle when Joseph was 10 months old. It was a highly emotional time for us all but particularly my ex-husband as he was trying to support his family the only way he knew how. During that time, we were contending with Joseph’s reflux and initial eye operation, followed by two further admittances where he had to endure general anaesthetic. I had also had a biopsy on a breast lump and had an operation to remove an abscess which took a long time to recover from. Joseph’s autism diagnosis came only 2 months after his father and I separated so it’s fair to say a great deal had been endured by us all. Most people would find any of these events difficult to cope with, even as isolated events.
So when Summer of 2012 arrived, I had probably been running on empty for not just the previous 8 months, but a total of 4 and half years. The shift work on top of the endless appointments with professionals, decisions around Joseph’s school and Footsteps coming to an end, finally took its toll. I was starting to panic as to what we would do without Footsteps and how Joseph would cope at a school without any support.
Strangely enough, work was my release; where I could be someone else and not just a mum of a child with autism. On the day I asked for help, I arrived at work for my shift and had already been awake for 12 hours; I was tired and emotional. After plucking up the courage to finally admit how low I felt, my comments were dismissed despite lots of warning signs being there about my state of mind.
Two days later I booked an appointment at the doctors and repeated what I had said at work. I recall sitting there for what seemed like an eternity and saying I wasn’t coping, the guilt I felt and how unhappy I was. I was initially signed off from work for 2 weeks and a referral made to a counsellor. I insisted I didn’t want any sort of tablets to help me sleep or help me numb the pain as I knew that wasn’t going to work for me. I was pinning all my hopes on the counsellor being the thing I needed to get me back on track and back to my normal self. I wasn’t to realise at that point that the wait for a counsellor through the NHS could be months.
Initially, I told very few people why I was off work and most likely used the excuse of being ‘a bit under the weather’. I felt ashamed in my inability to cope with what I saw as everyday life. I posted in further sick notes and there was no contact from work (apart from friends) until after six weeks, when I received a letter delivered to my old address inviting me to a long term sickness review. By this point, I had reached a point of anger, as I felt nobody cared enough to be bothered. I had quite an honest conversation with a manager who I had known for some years and I think he was shocked about what had happened and the lack of support I had received. A home visit was arranged with HR in attendance and yet again, I sat and sobbed and tried to explain how I was feeling. It was acknowledged that I had been let down, by what was a flawed system in use at that time. Following this, there was an array of support through occupational health, an offer of a change of working hours and a phased return when I felt ready to come back. I was disappointed that it took so long for the help I so desperately needed but appreciative that it was finally there.
I was sleep deprived, alone, frightened, angry, tearful and wanted anyone’s life but my own. I constantly questioned why this had happened to us. I felt like I was in a deep black hole and couldn’t see any tunnel, let alone the light at the end of it. I wanted someone to come up with the magic answer to fix me. Little did I know that the answer truly lied within; I just needed someone who could help me find those answers.
The solution came in the form of a counsellor that I found through the Autism Communication Team. It was the best thing that could have happened to me as she really did understand how having a child with special needs affected me as a parent. She is probably one of the reasons why I am able to finally sit here today and be honest about my feelings. Counselling wasn’t a quick process and it took me a long time to be able to talk in these sessions without crying and to overcome feelings of guilt. Even now, I don’t think I am totally where I need to be and can’t say I won’t need counselling again but I acknowledge how far I have come.
I have slowly learned to accept that I am not to blame for Joseph’s autism and that I cannot change his diagnosis. There are numerous theories as to what causes autism and I have yet to decide which one I subscribe to. It’s also possible that God does only put on you what you can cope with; but I hope if there is a God, that he knows that he has tested me over and over again and pushed me to limits that I did not know could be reached.
I wouldn’t say I am fixed; those that know me best would say that I am unfixable! But I know more about coping strategies and the times that I need to stop and take stock and breathe. I’m not sure what I should refer to this period in my life as, as recently there seems to be a lot of focus on Mental Health and everyone seems to be an expert these days. Was I depressed? Going through a difficult time? Having a breakdown?
My honest answer is, I don’t know. But just as I hate Joseph to be defined by his label, I doubt I need labelling too.