take a stance

 

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 ?

(Fun fact: our school uniform is already blue!)

Preparation

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? 😉 

autism in the media–news show snippets

Autism is more and more present in the media. There are movies, tv series,  documentaries of all kinds… And then there is the odd ‘autism snippet’ on news shows on commercial television. It seems they are all follow the same pattern:  “this family wants you to see what their life with autism really looks like” – cue: screaming child wreaking havoc in the house. Parents talking about how hard it is. For them. Then, briefly some expert : “The causes of autism are not fully known…” (oh snap!) “..early intervention, ABA..” “high costs..” (critic of governments service schemes, ok) and THEN either “new hope for early detection” (in infants.. or before birth, usually VERY early studies..) OR – aaargh! – “the debate continues if autism is linked to [insert scientifically completely debunked autism myth here]” and maybe even room for some self-declared expert quax to deliver their spiel.
Total time: usually less than 10 min. My personal learning experience : zero.
Effect on the broad public : Autism is mysterious and totally scary.

Sh*t autism parents do – Let’s talk about …poop?

Ok. I’ll admit: That time I first met another autism mother IRL, as she let off some extreme constipation anecdotes, I was glad to know I was not alone. We might have laughed together about it. I wasn’t laughing at the ER with my son though and we had to medicate (gently!) for a long time to re-educate his bowel. I am still constantly watching his fibre intake (high), physical activity and water consumption. Boy gets VERY cranky with a bad, hard tummy. Who wouldn’t ?  We all know: the picky eating, anxiety and stress, the “holding it in”..Chronic constipation is a common problem in autistic kids.. Don’t wait, manage it with a doctor – it really can become a MASSIVE problem. (wiki link)
BUT. One thing : I have read in blogs of adult autistics that, from the get-go, parents will inquire about their bowel movements – meeting them for the first time !?
Uhm.. Poop is a pretty personal thing. I am really pro-dialogue in the ‘autism community’ but that’s maybe pushing it just a little bit to far?!

About the DSM-5…

I am not actually as concerned as many people were and still are about the changes of the DSM-5. I had always understood Asperger’s to be a form, or a variant of autism. I am not even sure which classification is actually predominantly used here in Australia, I have read contradicting information (and in the  WHO’s international ICD-10 Asperger’s Syndrome is still well alive). But I thought it was a curious, short lived development for a diagnosis, first described some 50 years before it was picked up to be included, and barely 30 years later, it’s already history again. If anything, it shows us that we are still learning, all of us.

Other people’s problems…

Inclusion shouldn’t stop in the classroom. But while – in spite of recent changes that brought an amount of troubles (see earlier comix) – we have made steady progress with the integration of my son in class and his academic performance, I can’t really say that he has made actual friends. This seems to come natural for all the other kids – to a point where the parents find it almost a bit too much… or so I hear. Nothing like the heartbreak about your kid never being invited to all these things that should be part of a normal childhood.
(note that we finally had another birthday invitation not long ago, comic coming soon)

mommy war zones

The internet is a great source of information, and as a new mother I was glad to have somewhere to turn to the different aspects of parenthood. But it easily gets a bit much with the different opinions and the online battles raging about one or the other subject.
Once my son was diagnosed, I found out pretty soon, that this is no different in the so called “autism community”. Don’t get me wrong! I think real debate is good.
But too often, people do not respect the basic rules of discussion, argument and reasoning. And it’s really just unproductive war mongering.

New situations

I am a way more protective parent than I thought I would ever be because of my son’s sensory issues and the problems he has with adapting to new things or changes. Sometimes, he surprises me though, and what I think is just a massive meltdown waiting to happen, turns out to be totally ok for him.
Before he had his official diagnosis, I was very confused by his reactions at times. We once went to a dog shelter and he found himself in the middle of a pack of happy, jumpy puppies. Nothing happened.

Running!

Running is big with my son, especially inside the house, in moments of happiness and anticipation – but certainly NOT for competitions in school. “Stop running!!!”has to be one of the most common phrases in our house as he also runs with filled glasses or plates, on socks, amidst the dogs (oh, they like it!) and when getting up in the middle of the night. When it’s relatively safe, I don’t mind it though, including the crashes into walls and doors…

Person first language ?

 

Striving to use politically correct and non-discriminatory language is not a new thing in the context of disability parenting and, as with so many things, our perceptions of importance and meaning are various. I hadn’t really thought about it much, when I realized there is actually a ‘debate’ about it.. Here is a very comprehensive article by Lydia Brown about it HERE on her excellent blog Autistic Hoya.