I’ve taken a break from blogging recently. About a month ago I reached a cross roads where I had to decide how to take my life forward.
I was stressed. Unbelievably stressed. I had been fighting the NHS for a referral to a large children’s hospital in London. I had been arguing for more social care support and funds to help us with overnight care. I had been pleading with the paediatrician to help us with medication. And I had been working a lot with our learning disability nurse who in her selfless wish to simply help our family, took on as much as she could so I didn’t have to fight anymore. Then one day, I broke.
It was pretty spectacular. I didn’t see it coming, and I’m not particularly proud of my actions. I had decided after a very long and hard think that I would put in a formal complaint against our social care team. Absent. That is the only word I could use to describe them. Actually, maybe throw “ineffective” in there too. However you put it, they just weren’t there for us. Now I realise the strain and pressure on our social care services, I really do. But the fact was that we needed help and we weren’t getting it. I followed the rules, I made the complaint in a cool and calm manner. I was composed. Until the day our social worker called me.
He admitted that he had been absent from our family and wasn’t able to provide us with the support we needed. So his recommendation moving forward was to downgrade us to community care and remove us from his workload. I let this sentence resonate in my ears for a moment and actually repeated it back to him just to be sure I was hearing him correctly. And then it happened. The emotional explosion of a life time.
I didn’t hold back. And I shouted. Really really loud. Whilst I can be assertive at times and firm with my tone of voice, I do not make a point of shouting. It’s rude and unnecessary. We are all human beings. So no, I’m not proud of the way i spoke to this person. But I did mean what I said. I dissolved into tears following the phone call. I felt completely lost and almost back to square one when kiddo started mainstream. Alone. Terrified. Vulnerable.
My dad and step mum were visiting at the time. After my husband consoled me and made me feel better about life, I sat down next to my step mum. She pointed at kiddo and said, “You see how happy he Is? Look what all this fighting is doing to you”. It had ripped me in two. Literally torn me apart. I was at a cross roads. Was I to continue fighting the social care complaint? Or was I to accept a social injustice (which I’m not very good at I admit) and enjoy my beautiful family. Start to live life again. I decided at the time to let the social care complaint run it’s course, and whatever the outcome, leave it. For my health, I had to leave it.
A month on and I’ve thrown myself into painting the house and working on my garden. It’s been blissful. Kiddo is happy at school and I was happy at home. But a shadow has been hanging over me, and today it was time for it to rear it’s head.
There are still therapies and services we believe kiddo needs. Sensory integration therapy. Social space desensitization. Specialist speech therapy. They all need fighting for. And I don’t know what to do. Do I fight and rediscover my feisty exhausting self? Or do I accept what the state can offer and take responsibility for kiddo not having everything i know he needs? In other words, am I just being a spoiled brat? A special needs mum who is shouting and stamping her feet until she gets her own way? Or am I determined to fight for every tiny thing possible my child needs.
I still haven’t made a decision about what to do. I was in my garden this evening and I noticed what used to be a pile of mud. All by itself it had grown beautiful wild flowers. Long stems of green silk and colours from nature’s rainbow. It’s the one area of the garden I haven’t touched. Maybe it was trying to tell me something? Maybe sometimes leaving things to flourish all by themselves leads to a stunning result with no effort involved. Which brings me back to my original question.
Do I fight for the remaining needs of my child? Or do I let life find a way and flourish all on its own. I still haven’t decided. I’ll let you know…
Thanks for reading,