I’ve wanted to write about this particular subject for a few weeks now, but I haven’t been able to string the right explanation together. I wanted to talk about isolation and loneliness in SEN parenting, and how it’s more than just being on your own.
Sometimes, when I’m lost in thought or hyper focussed on something, and my husband speaks to me but I don’t hear him, he starts singing “Mr Cellophane” from the Chicago musical in order to get my attention.
“Mr Cellophane should’a, been my name, cos you can look right through me, walk right by me, and never know I’m there!..” he’ll sing.
It got me thinking, that’s exactly how I would describe SEN parenting. The complete invisibility you feel. You can look straight at a SEN parent and never see the struggle underneath.
For example, I recently took Noah up to visit his daddy and all our scouting friends while they were camping over the summer. I had been on my own with Noah feeling a bit lonely and decided to go and see everyone to cheer myself up.
They had a huge open field to themselves, and when Noah got there, all he wanted to do was run up and down a concrete area on one side of the site, which happened to be the opposite side to where everyone else was camped. As always, Noah has to be supervised, so I set up shop on a bench near by and desperately waited for the novelty to wear off, so that we could head back over to the group, and I could get some company and socialisation.
It didn’t happen, and every time I tried to encourage him back towards the group he would scream and run back to the concrete.
During the time I was sat on the bench, no body came and spoke to me other than daddy. No one offered to take over or to sit with me. Everyone assumed I was over there by choice rather than necessity, but in reality I felt lonelier than I had at home and begun to question why I had bothered to venture out in the first place.
My mum was one of the leaders on site, and after a while I asked daddy to take over and went for a little walk with her.
In the end I tried to explain how isolating it is to have everyone assume you’re okay on your own rather than actually check on you. It feels like you’re invisible, and that no one really cares if you’re there or not. It’s the same reason why I shy away from play dates with most other mainstream children we know, because I end up stuck in one corner of the park pushing the swing for hours on end, when everyone else is able to casually chat as they follow their children around, playing together on different things. For me, it’s no different to being at home while Noah is on his swing in the garden. It doesn’t provide me with any social support at all.
My husband convinced me to take Noah back up to the site the next day, and I could really feel the difference. This time, daddy took Noah away from me as soon as I arrived and took him off to play whilst I was made to sit, relax and chat with everyone else and finally get that company I’d been craving. Everyone started to realise that Noah’s ways meant I needed a little bit of help to feel included, and that made all the difference to me.
But you know what I can’t shake? I hate that I had to say something in order to be noticed. I know that sounds entitled and selfish, and I know that all parents at some stage face loneliness, but I really feel that SEN parenting especially falls into the “out of sight, out of mind” category of society. To the outside world, our kids are too difficult, or too hard to communicate with, our struggles with them are too heavy to hear about, and for most people it’s easier to leave us to it and pretend they can’t really see us, than to get involved. Mrs Cellophane, invisible to the naked eye, unless you’ve donned your caring cape.
The only other people (aside from close family and some very close friends) I’ve found who don’t make me feel like that, are other SEN parents. I never have to ask for help, or show them that I’m drowning before they step in to chat and see how we are.
A few days later, I took Noah in to see my Nan in her care home. She’s slowly loosing her memory, and doesn’t fully understand why or how Noah is different, but she still loved seeing him. I was encouraged to let him roam around the communal room for a little while and all the little old ladies loved watching him bounce and flap and dance. The carers stopped to talk to him, and so many of the residents wanted to engage with him, and I just couldn’t help but think: loneliness recognises loneliness, and seeks to negate it wherever it can. I didn’t have to ask to be seen, because everyone in there already knew how it felt to be invisible to most people.
As much as I hate that I had to point out my isolation, I can’t deny that it made a huge difference in the end. It’s the same principle as expecting a child to follow certain rules; you can’t get mad at them for breaking them, if you didn’t teach them the rules in the first place. How can someone recognise the signs of isolation if they don’t know what to look for.
If you’re a SEN parent feeling lonely in a crowd, I urge you to speak up to those you trust and let them help you out of the mud. If you have a SEN parent in your life, check in with them. Take them somewhere that their children can be free and safe to play so they can actually relax and have a chat. It will make all the difference to them and they will thank you for it tenfold.
