This afternoon I was a desperate woman. I was exhausted, emotional and seriously worried for the safety of my son. His behaviour was dangerous, hyperactive and erratic. As I followed him round the house with him bouncing off the walls (literally) I felt like the loneliest mum in the world. My son was out of control, and I had absolutely no idea what to do about it. I had tried herbal remedies, essential oils, rescue remedy (homeopathic options become your best friend when you’re dealing with extreme additional needs that the NHS don’t really support), deep pressure massage etc. You name it, i’d tried it. They hadn’t even touched the surface of his behaviour. The only other time I have felt so helpless was when he was hospitalised as a two week old baby. Lying there attached to tubes, wires and monitors. The machine was in control, alerting the nurses when they were needed. I was superfluous. Except for the never ending supply of milk obviously…
So this afternoon I did the only thing I could think of, and I locked both me and the kiddo in his bedroom. His safe space. The walls are padded with memory foam in this room, furniture attached to the walls. And minimal objects for use as weapons. And then it happened. He went for me. As I sat on a bean bag in the corner of the room, watching him innocently doing forward rolls across the floor, he went for me. Fortunately he followed the same pattern he often does. Attempted a slap to my face, I gently block both his arms, he then comes in with a head butt and I move slightly so he hits the soft bean bag. I’m normally used to dealing with this line of attack, but today I was just feeling too vulnerable. Today I couldn’t handle the feeling of pure sadness when my own son attacked me.
So what did I do? Phone a professional? Nope. Answer machine messages don’t get picked up for days. No point. Although I do often email to update them on his behaviour, I never expect a reply. Call my husband at work? Nope. If I phoned him every time I felt low or needed help he would never actually be at work. I have to respect his work time, one of us has to earn the pennies! (He gets my onslaught of tears most days at 5 o’clock). Phone family? Nope. They will have a very sympathetic ear, but they won’t have any advice, how could they? No I needed a particular group of people. A group who’ve been there. A group who get how I’m feeling at this exact moment. I needed to talk to Mums of children with additional needs and disabilities. And where do I find this beautiful bunch? On social media.
It’s instinctive now. I need help, I feel blue, I feel concerned, social media is where I head. The forums are a library of information, experience and ideas. But above all they never turn you away, they never judge your actions, they understand your feelings in your most desperate hour. They are my rock when my husband is not here. And they are the most generous people I know.
Recently the kindness of two people really touched my heart. One afternoon I was searching for advice on sleep and a complete stranger came to my rescue. She messaged me and said “I know what you need”… “thanks!” I said, “I’ll get on and order some”. But she went one step further, she gave me her remedy totally free that afternoon so that we may have some sleep that night. When I attempted to repay her she simply said to me “pay it forward to the next Autism mum”. And believe me I will.
Another example was this afternoon, a complete stranger to me answered my plea for help on how to deal with kiddo’s violence. This lady took time out of her own day to discuss with me how she handles it and how I might be able to make us all a little safer. Nothing in it for her, just pure support and respect that we have for one another as SEND parents.
This has been the norm for almost two years now. Social media saved me when no one else could. The NHS do their best but they’re not instantly accessible, how can they be? I can’t expect family and friends with neurotypical children to have solutions either.
Facebook, Twitter and Instagram have fundamentally turned my life around. It’s a porthole to my underground world of parent carers (that’s another blog…). It’s a free way of eliminating the certain darkness of the loneliest of hours, by providing that shed of light. It’s a warm chat with another mum awake at all hours while their child is stimming, attempting to enter the lad of nod. It’s a way for me to share my writing.
Social media links us all together. It bonds us and allows us to guide each other in between the endless appointments and assessments. It allows us to pick each other up when we are down.
So the next time someone says to me that social media is a bad thing, and that I should live in the real world more, I’ll be telling them I do live in the real world. It’s just that my world can be so lonely, I need the online world for company and maybe a giggle or too 😉
Thanks for reading,