Last night I went along to a local support group for parents of children on the spectrum. It’s the only one I can get to now due to working every morning and, although I’m in loads of Facebook groups, it’s so important to go out and meet with people face-to-face, even though I’m a social mess, and find it so hard to do these things alone.
Support groups are vital when you suddenly find yourself facing the prospect of a life different to the one you had envisaged Before Diagnosis (henceforth known as ‘BD’). I found one local to me just after Tink’s diagnosis last summer and turned up not knowing what to expect. What I found was a room full of women (and they were all women, these things often are) who just got it. They’d all been where I was and knew pretty much just how helpless I was feeling. A cuppa and a pastry were thrust in my hands, an offer of a seat in a little group was made and listening ears gently asked what had brought me to the group. Comforting pats were given as I began to talk about how Tink’s diagnosis had come about and tissues were offered as I began to sob (as I usually do) – both with despair and then relief as I began to realise that these ladies understood. They knew. I wasn’t alone. We come from all walks of life, all kinds of family situations, but we all have that one thing in common. I don’t get to go to that particular group at the moment, as it’s a morning session, but I still interact with those ladies on Facebook and occasionally we meet up at some thing or other with the kids. I hope to get back there one day in the not-too-distant future.
So last night, I was sitting in my car, waiting for the group to open (because, if you know me, you’ll know I just don’t do late) when I spotted a lady looking a little lost. And I just knew that she was looking for the group. She looked just like I did the first time I went along. I jumped out of the car and walked over to her and asked if she was looking for the autism support group. “Yes!” she replied, relief on her face. I pointed her in the right direction and we walked together. Then I gently asked what had brought her along. And her face fell. Oh god, what? What had I opened up?
She proceeded to tell me that her teenage son was in the process of being assessed, as his behaviour at school over the last few months had been deteriorating and she was concerned. School aren’t being particularly helpful (think very large, results-driven academy school who mentor other local schools) and she felt as though they were looking for an excuse to be rid of him. She was hoping the group could help her, advise her as to what to do next and if there are other, more accommodating school she can try. She described how he’d always been a bit ‘quirky’ and now she was wondering if there was something wrong with him.
I said, “but there’s nothing wrong with him!” And she just looked at me like I had two heads. So I repeated, “there’s nothing wrong with him. He’s just a bit different. And different isn’t wrong. It’s as if he’s on a different operating system to others, but both systems work.” And you know that bit in ‘Despicable Me’, when Gru pops up out of the ground and says, “lightbulb!”? That. A look crossed her face as if she was thinking, “oh my god. I’ve been thinking about it all wrong! He’s not defective, he’s just different!” Or maybe she was just thinking that I was an utter nutter and how could I possibly think there’s nothing wrong with our children? But I think I had made a chink in her defensive armour, as we sat and talked for a few minutes about how it’s just that the world isn’t geared up for how our children see it and it’s our job to give them the support and tools to go out there and smash it against all the odds. “You’re in the right place here,” I told her.
But I don’t know if she’ll ever come back to the group. I don’t know that she got answers to her questions that night (I was chatting to someone else for a while about EHCP plans and special schools). She didn’t seem very comfortable, despite my best efforts, as well as the tea and cake on offer. She’s not on Facebook, which is a real shame. I know it’s not for everyone, but there is so much support out there in the virtual world that I think her, and others like her would really benefit from joining, even if that’s all they do on Facebook. There are many other members of the group that didn’t attend last night who have probably been exactly where she is right now and could help her out. She looked so lost and so despondent. That’s why support groups – real or virtual – are such as lifeline to parents like us. There will always be someone who has walked in your shoes and can guide you, and make you feel like you’re not alone.