CRAZY JANE tells me over and over again how happy she is with her diagnosis. She tell's me that she finally knows why she does things now, why she's a little bit different. This is great but she also uses it to her advantage. CRAZY JANE I swear if you don’t get out of bed, I'll drag you out, well mum, you know I have problems, and tiredness is one of them. Oh is it now, so is staying up reading and playing DS till 3 in the morning, well mum, you know im a crap sleeper. Grrrrrrrr She is interested now in doing some courses in CTYI if she can get in. Her IQ scores are really good so fingers crossed.
Crazy jane had been receiving group speech and language therapy before assessments. I now get told that she will have to go to the local mental health services for all further therapies since she now has a diagnosis of Asperger’s. Crazy jane refuses point blank, I don’t blame her, I’ll fight tooth and nail to keep her from ever being under DR George's care again, I’ll go to news papers, radio, td’s you name it. Here is a new fight, bring it on, I’ve spent the last 4 years fighting, I can do 4 more.
A miracle has happened. Mr fabulous and Lunatic john although not the best of buds are kind of ok together, KIND OF. They can be left with supervision or separation by corner in the same room. Wow this is a major break through. Lunatic john loves to follow Mr fabulous around; Mr fabulous just about tolerates Lunatic john, just about. This is not perfect or an issue resolved by any means but its something. Lunatic john even is sleeping a bit better at night, A BIT.
We find our selves having to screw the telly even more to the wall than what it was, Mr fabulous likes to hug it and slap it ferociously. We have to board up our chimney, yes Mr fabulous liked to go up there, get stuck up there and paint the front room and hall with the contents from what’s up there. Mr fabulous also decided that the couch was thirsty; he poured a full 2 litre of milk down my comfy, lovely cream leather couch. Oh the lovely fresh smell of sour milk. Please go away smell as I love my leather couch and never want to part with it. It does EVENTUALLY thank god. Oh this is just great fun. Mr fabulous is becoming so interested in his surroundings, and investigates, eats, colours, paints everything in site, he even rips the wall paper off the wall, go Mr fabulous, explore away, oh god, he is a nightmare.
Life, it’s not perfect and I sure as hell know it never will be, but it really really is just the little things that really make it all worth while. Mr fabulous is non verbal but yes he can communicate. If he wants a drink, he’ll waddle over with the bottle of 7 up, milk, juice, which ever one he wants. If he is in the sitting room and needs a drink, he’ll simply fling his beaker at you, erm yea thanks son, same to you with bells on. If he wants fruit he will stand in front of the fruit bowl, clap his hands in excitement and simply vocalise an eeeeeeeee sound so that you hear him and see him. You see Mr fabulous is very clever, the Pecs cards are Velcro’d to the press of all his favs, but Mr fabulous is a stubborn oul shite. Mr fabulous knows that he should hand you the Pecs card, but why would he do that when he can simply open the press (even with the child lock on) and get it him self. If it has a wrapper he will simply throw it at you as if to say, oi you, mummy person, open that for me.
When I think of Mr fabulous I think of stewy from family guy. I think that’s exactly what goes on inside Mr fabulous’s head. (Well now you know what I mean, I don’t have to explain) I see Stewy and I instantly think of Mr fabulous. You see I know Mr fabulous is extremely intelligent; I have no worries regarding Mr fabulous in that area. I also know Mr fabulous is very stubborn and again wilful. I know he thinks all sorts in that head of his. The cheeky grin says a thousand words. Im sure in fact positive Mr fabulous will screw up some day and speak a full sentence. I say screw up because I know he can do it if he wants, and he loves for us to think that he can’t. I think he quite likes to keep us puzzled as to whether he can or can’t. I think he deliberately holds back as he enjoys his way better.
I understood a long time ago that Autistic kids are just the same as us, only their world is just a lot better than ours. Why listen to noise if you don’t want or have to, let’s block it out. Why put up with a screaming baby, he’s not my screaming baby, you deal with him, just keep him away from me. Work, I will if I want to, but don’t think for one second that you can make me. Hand you a card, you mean seriously if I want a banana I have to hand you a card, will ya feck off you insane person, if I want a banana I’ll get a bloody banana thank you very much. The smell of that is irritating me, remove it please. Eat that, hello, no I won’t, look at the 50 million colours on that plate, I want simple food, not that Gordon Ramsey make shift shite.
I’m very accepting of Mr fabulous’s autism, and I always have been. I see my boy, happy, enjoying his own world. I could have done ABA, but to be honest, Mr fabulous didn’t need it. I could have strict routines and strict rules, why, Mr fabulous simply does not need that either. I could put intense pressure on him to speak, communicate words like WANT, I, HELP, why? Mr fabulous will grab your hand and make you help him if he needs it, Mr fabulous will more than let you know what he wants, Mr fabulous is able to communicate extremely well that even strangers know what he wants, because of this, he does not suffer frustration, he does not get angry and hurt, lash out etc. Mr fabulous is in fact a very calm, easy going and very expressive and communicative non verbal autistic child. I encourage the words as do the school and he is making excellent process and his vocalising sounds at the minuite are just brilliant. I also am convinced along with tutor and other family members that we have heard words and in the right context. This is just fantastic news but again, there will be no major pressure put on him.
I know other autistic children are not like this, and I know im very fortunate that Mr fabulous is who he is, im very fortunate to be able to go to a restaurant with my son, yes even a snobby one and have a nice meal. Mr fabulous loves his food way too much to let autism ruin his dinner. And if he squeals a few eeees and yummms do I care, no so long as he is enjoying himself and behaving to some extent.
We can go to parks and shops with him, it took at lot of encouraging and persavering on our end, but he does it now and enjoys it, so long as he has munchies to snack on and its not way too crowded and noisy.
I love my children unconditionally and I don’t care who looks at them different, who slag’s them off, who stares if Mr fabulous is flapping his ears, I don’t care because I am fortunate enough to know better. I am educated to know better. I’m above it all and do know better, it’s the lookers and the starer’s problem. The rate Autism, ADHD, Asperger’s, and all these disorders are increasing, it will not be long before the on lookers them selves will be also witnessing a loved one’s, friend’s, or in fact their own child’s special needs.
I know i have more battles and i taught id have a break from this story for a while but recent events leave me with more to add soon.
Lunatic john is having problems, more issues with services, entitlements and Crazy jane's issues with services are taking over our life once again.
I will tell all soon, but for now im just happy to share this blog as a good happy blog.
7 comments:
Blondie gal said...
I really enjoyed reading that Mandie, great words and glad for you its a happy blog... I hear ya on Mr fabulous being able to make himself known without Pecs and talking, Matthews a similar creature, he learnt a while back, if I want something I'll go get it or I'll do i myself, instead of process of elimination with these eejits!
And the umms and ee's out and about instead of speaking, we get them too.. I dont care anymore though (primarily because Matthew himself doesnt bat an eyelid and has a fantasticly dismissive personality even at his age to those who try and patronise him!)
Anyway look forward to reading more!
January 12, 2010 8:45 AM
Taz said...
Nice one Mand!
January 12, 2010 9:29 AM
Jen said...
"Mr fabulous loves his food way too much to let autism ruin his dinner". Send him my way please, to have a heart to heart with my fella! Jen.
January 12, 2010 9:54 AM
coolkid said...
Will do Jen, right after he has a word with lunatic john about his dinner lol
January 12, 2010 10:11 AM
Anonymous said...
Another wonderfully descriptive peek into your day Mandie. X
about a minute ago
January 12, 2010 12:55 PM
Lora said...
Kudos to you Mandie for your undying love and patience with Mr fabulous and for not caring what people do when you go out to eat. It is a shame when parents are embarrassed by their autistic or DD children.
I love that you acknowledged that autistic children are quite comfy in their own little world and do as they please and why should they do this or that or tolerate this or that? Well put indeed!
Thank you for visiting our blog and I look forward to getting to know you better and Mr. Mr fabulous and your family through our blogs and through fb.
Take care, Lora and Griffin
January 14, 2010 12:19 PM
Veronica Lee said...
Hi! I'm visiting from MBC. Great blog.
January 16, 2010 5:07 AM
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