Today, there was a family get-together. The boys had been with my mother all day and she took them there. I came a bit later and as always, my boys gave me a warm welcome when they saw me. I had been looking forward to meeting everyone as I hadn’t met all of them since we moved back to Iceland. It was nice to see everyone, especially the kids who’ve grown so big since last time I was in Iceland. I think they were also glad to see us, particularly because most of them haven’t seen us in a very long time – most of them, not since we learned that the boys were autistic.
It was a get-together with my mother’s family which is pretty tight. I think that from a normal standard, we meet up a lot. What’s most important though is that we don’t just meet up for the sake of it – most of us actually like it. Everyone knows everyone, knows more or less what is going on with everyone else, we support each other and care for one another. But as mentioned earlier, most of them hadn’t seen me – and even fewer had seen the boys – for a very long time. Of course, they all knew about the autism diagnoses and the blog and had heard news from my parents about what’s been going on but I guess hearing about it isn’t the same as seeing it for yourself.
The boys had been behaving alright. Sure I had to jump in a few times to prevent a blow or scold them for some inappropriate behavior but mostly, they were just being kids, having fun, being loud, and playing. But suddenly, a glass broke in the loft where the kids were playing and we had to jump in there and sweep all the kids away so they wouldn’t cut themselves. That’s when the trouble started. My boys didn’t want to leave and when they were removed from the loft, they repeatedly tried to get back up there. No matter how I tried to explain to JA, who usually can be argued with, that it was dangerous and that he’d have to wait a bit while we cleaned up, he wouldn’t listen. My little V was not listening either. He couldn’t understand why he wasn’t allowed to get up there and began crying which soon turned into screaming. Every time I turned my attention to one of them, the other tried to sneak in. And every time they were taken away, they got more upset. It was awful. Of course, the others tried to help but when the boys are in that zone, fixated on something they want but can’t have, they’re not very easy to deal with. Eventually I just had to take V away from the situation altogether to calm him down.
Fortunately, I was at a place where everyone knows us and cares for us and I knew that neither me nor the boys would be judged. Yet, I felt awful that this was taking place and that everyone had to see it. Therefore, it struck me when my cousin, who’s also a good friend of mine and this very understanding type, took my hand and said in a sincere, sympathetic voice: “Wow Ragga, I know you’ve been saying that it can be hard sometimes but now I really understand what you mean“. I forced myself to smile in surrender but think it was more of a grimace as I was very close to tearing up. It wasn’t because I was angry or annoyed or anything like that. I actually felt a little relieved. It was actually nice that someone was just honest about it without judgment or pretense. She just said it in a way that was simultaneously sympathetic yet without making me feel like she felt sorry for me. I felt like she was neither trying to make me feel bad nor good. It was just the honest truth – an acknowledgement – nothing more, nothing less. And while it did make me feel better, it was also difficult not to break down in tears. I think it might be because you know it so well yourself but don’t want to burden everyone else by constantly complaining about it. And just hearing that someone is beginning to understand is both nice and difficult at the same time.
How do you feel when people around you realize how it can be? Good? Bad? Both? And for those of you that have years of experience, does it get easier? By all means comment below – I want to hear from you. Thank you. xx Ragga