Technically, it is already the 3rd April here in Australia, but here is my contribution to the blue light discussion. I thought the message by the UN goes in the right direction.
Shining blue lights on public monuments or buildings can be a very costly ‘event’ and if not accompanied by actual actions that benefit the autistic population (and not in the form of more funds for the ‘research for a cure’ but actual concrete help and support), it is a vain and empty feel-good operation that really changes nothing.
All on the awareness bus already. Moving on!
So it’s April and I almost didn’t post with my own pc now a warranty case, but it’s a BUZZ out there, April is ON in the autism “community” and I had a couple of strips prepared. So here.
It’s April and ‘awareness’ is in the air… you ‘aware’ yet, everybody ? AUTISM is HERE!!
Oh, you already knew?
Look, I get it. Calling for awareness is good to draw attention to something, even sometimes, it helps raise funds, but for many adult autistics it has become the red cloth Autism Speaks is wiggling in front of them (although, really, the date of the 2nd April for World Autism Awareness goes back to the UN – 1989! and no blue lights either..) and every do-gooder and click-activist who makes themselves feel better by sharing a post here or there, or dutifully awing and owing at beautifully blue lit monuments. So ‘aware’, one day of the year.
Well, dear ‘awareness people’ it’s been 25 years. I think we could really move on to ACCEPTANCE… And yes, that’s so big we need the WHOLE MONTH OF APRIL.
We saw a lot of kids and grown-ups dressed in orange today in our school, and I should not be a cynic who thinks wearing a t-shirt in a certain colour changes really not so much (there are some other actions of course..). So I won’t think that..(although a quasi-free dress day without the obligatory donation would help in an otherwise uniformed school, too..) I just think it’s a bit vague and does not go very deep. Who would be FOR bullies anyway?
There has been no ‘autism awareness day’ (acceptance/month, whatever) in the school so far, and I have been explicitly told talking about autism might lead to bullying (..?) which basically only made me start this blog in September last year.
So April is coming around and so far I don’t know what is planned, I don’t know what to think again, is it really just about donning a bit of blue and say “Autism!” for one day? What is your take on ‘awareness days’ vs actual action, information, education?
Are you doing something in April ?
We are having an “adventure day” tomorrow. Well, actually, we are just going into the city. Lately, we have made good progress on the acceptable drink when out, but it’s still true that I think carefully about what I put in my bag, where we are going (and where we can make breaks) when we go for a longer outing. It’s important to have adventures though. See new things, get in new situations. Learn to prepare, to say when it’s too much and also to cope when we cannot immediately change it. Or when Mum took the wrong kind of drink. (“red juice” is apple-blackcurrant. still his favourite.)
nb: I made a new FAQ page and changed the header.. – check it out? ;)
Our year continues with more trouble in school. Nemo still has daily support (the new aide is kind and calm) and they have now been willing to trial a few preventive solutions I have put to them (quiet lunches, respite days), but his current reflex to swear and get angry (at least that’s what it looks like) in situations of stress, is taking a bit of a toll on the ‘support team’. On me too, to be quite honest, but since things are rather chill at home in terms of expectations and environment, I simply do not have the Rumpelstielzchen experience on a daily basis, and there is only so much I can do when he is in school. Needless to say, that we do NOT swear like sailors at home, we do not condone it at all and I understand the school has to draw a line…But I still believe that the use of swearwords in moments of distress does not prove he is making the conscious choice to be ‘naughty’ or whatever?! Will be really thankful for any input…
To say that Nemo has had a bit of a rocky start into the new school year, is probably putting it mildly. . Today, I had a meeting with his brand new ‘case manager’. I am hoping for a fresh start, he likes her… I also think that I made it quite clear she has to jump in on it and get him out of the spiral of stress situations and disciplinary measures in the school. I am not totally contesting them (there was swearing, running off and kicking things.. and people) But just telling him to count to ten and breath when things are getting too much…just not good enough!
Yeah, not so sure about this day.. The meeting was incredibly awkward, I felt that the suspension was as much meant as a “wake-up call” for me as for Nemo. Which might be necessary for some parents, but I am kinda ‘all over it’ already, at least as much as I personally can be (because, you know : life). In brief, I felt judged and the whole ‘formalisation’ (reports, letters, behaviour contract) made me feel like it has more effect on administrative, and possible legal, follow-up (in case of what ?) than actually being efficient steps towards handling the situation (ie managing anxiety and anger).
Having had some really sad news the night before (re: life..), I really couldn’t say much at all.
But I told Nemo that I loved him, no matter what.