Autism sucks

This might seem like a provocative statement but I truly believe it does. This does not imply that people with autism suck.....I feel very warm towards autistic kids and identify strongly with their parents. It's a very hard battle at the coalface at every developmental stage....early years when it's very full-on, pre-puberty is AWFUL, early adolescence is a rough ride....I hear (and it seems to be bearing out with mine) that they settle down eventually.

It must be awful to be autistic, in a sense, with such a confused perspective on the world...so it certainly sucks for Andrew when he gets really angry and can't communicate at all.

I sometimes feel that it's a disability that's totally dominated my children. The world revolves around their wants and obsessions to the extent that other things have to give. You need to be one of those Indian gods with eight arms to fulfill demands! My nursing background at the Kids certainly helped my organisational skills.

Will still wants things yesterday and is an expert at verbal harrassment. He makes your life impossible if he doesn't get what he wants, hence his nickname. Plus, he is well aware that he physically dominates everyone around him. I have always tried to be firm and not cave in to his demands....trying diversion tactics, contracts, etc. Will's behaviour reminds me of one big power struggle. Will is SO inflexible.

Here's Will with my daughter and mother....BIG lad, yes! And he KNOWS he's big. This was three years ago so imagine how much bigger he is now! He's a Colossus. (I reckon he could wipe the floor with the Hulk.)

Andrew gets a bee in his bonnet about something and it's extremely hard to guess, with his muteness and inability to retain many Maketon signs, what it is he wants. Sometimes COMPIC and PECS work and he can point to them - it sometimes reminds me of those charade games! Often he wants the unachievable - if it's not there, we're in deep shit. He can lose it badly and need timeout in the seclusion room if the situation gets extreme.

I didn't realise, until after they were placed, how much of a prison our home was. I carry a jailor's set of keys...and it took six months for me to get used to leaving the backdoor open when I hung out the washing....we could even put a keyrack up and hang the keys up. Then a year later, it dawned on us that we were so much in a routine that we should be taking Holly out to more activities on weekends....like the snow and visiting friends.

When Andrew visits, we still have to lock the front door and supervise him. He's a joy really but you have to watch out that he's still in the backyard or upstairs and also that he is not ripping up video covers and reefing the VHS tape out. Will's visits are monthly and he, unlike Andrew who WANTS to see US, really comes to use our computer....he's not interested in what we have been up to, how we feel, per se.

...but Will has never been warm, which is sad. He is very stiff and rigid and hates all physical contact. If you touch him, he freezes. Yes, for a mother especially, autism sucks!