What a difference 8 weeks make…….

WOW, what a busy few weeks! 
I wanted to write about how MUCH Penguin Boy has changed, since this was/IS the WHOLE point. 
PB officially left school 8 weeks ago, 2 weeks out for his op and recovery so that has left us 6 weeks. Looking back, 9 weeks ago, he was STRESSED, he was screaming at everything, he refused to get out of bed every day, he couldn’t even manage to spend an hour in the classroom. He was refusing to go out every day, even socially, he was refusing to go out with his respite workers, he was VERY difficult to get dressed every day, he was chewing, everything, his fingers were bleeding, almost daily. He would often attack me and Princess Moo. In fact the day before he finished he had her pinned against a door while he repeatedly punched her and screamed at her. He never hugged us, we couldn’t touch him and every word was yelled at high volume with a hateful, angry tone. CONTROL was massive, PB had to control everything, even down to what we said in the house. 

He WAS Broken. Broken down, emotionally, socially……….I was heartbroken for my boy. This was NOT my PB. 

 

This week, Ah this week has been GLORIOUS. Everyday we just have to open his curtains and 5 minutes later he happily wonders downstairs, the FIRST thing he does is say good morning to us all and dish out the hugs. After which he asks what the plan is for the day and can he have his breakfast.
Tuesday this week went went to Penguinopolis and Mama and Dada P got new phones, PB happily sat, for about an hour, he occasionally wondered over to interact with the HUGE touch screen advert, laughing. 
Thursday this week we went to Penguins-by-the-sea to see some HE friends and go to a soft play, for FOUR hours PB was off, in another room, he had ONE argument with Princess Moo and he MADE friends, he looked after Moo, when she fell he picked her up and supported her arm while she (fake) limped to me. He walked past a crying toddler and stopped to show some compassion,

‘Oh, what happened? Are you ok? I am so sorry your sad little girl’ 

Happily, he left, without screaming and running away, quietly did he sit with his ipad on the train and some earphones. 

Friday…AH FRIDAY was amazing!!!!! Friday we got up and went to the local cafe for brunch, talking to PB’s former beaver leader and telling her he has earned his Bronze Scout award (which is a pretty big deal). After that we wondered to the pet shop and had a play with some kittens, holding some bunnies and just generally loving small animals. We went to the shop and walked home. Some friends then came over. PB’s best friend J. Both boys were warned that arguments over the xbox would be no playing on it. After about 10 minutes both boys came downstairs, they were in the hall and i heard PB say

‘J, what would YOU like to play, i don’t mind as long as your happy’ 
OMG, that is HUGE, for PB to relinquish power like that……………………..

THAT is why we took him out of school!!!!

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and this is the point where i hate Autism the most!!!

I embrace Autism, i truly do, it makes both PB and Ser Lex individuals, clever, funny, quirky, glorious individuals.
Unfortunately it also makes Sleep non existent!!!! 
Sweet glorious sleep! Last night Penguin boy was awake, WIDE awake until 4am! At 3am he woke me and Ser Lex up because he was calling the cats!!! He then had to get up at 8am to go see Dr Penguin, who Mama P decided from the meeting today, is as much use as a chocolate teapot, standing guard by a fire!!!! It’s currently Half 12am and again, Sweet PB is rattling around his room chatting to his beloved cats!!! 
Dr Penguin has ‘referred PB to a sleep clinic’ which we have done several times over, i fail to see ho this time will be different, also the referral could take ‘6 months’!!!

OY Mama and Daddy P will crack UP!!!!! 

World Autism Awareness Day 2nd April 2014: A different ‘Normal’

Today is world Autism Awareness Day. 2nd April 2014.
If you follow us you will know Autism is something we know well here!
Ser Lex is Autistic and so is PB.
What does that mean to us? To US? Not a lot really, we have adapted as a family and as parents to parent Ser Lex and PB as they need, and even Princess Moo, because, although she isn’t Autistic, Autism effects her life just as much as the boys. To a ‘outsider’ out there on the ice? Probably means a LOT.
I don’t even notice certain things now, PB’s ‘ticks’, Ser Lex’s language, How Princess Moo can hold her own in a cage fight because she has had so much practice (i’m kidding, kinda, i don’t actively place her in cage fights but she can certainly hold her own).
Nor do i even notice some of the funny looks, the tutting……..
If you were to meet us out there you probably wouldn’t even notice us, we ‘fit’ as much as any other home schooling family. Sure we likely stand out as having school age kids not in school, but as we scoot and waddle by you’d probably give us a funny glance and go about your day.
BUT (always is one, also anything said before the word BUT isn’t important, and yes that is a GOT reference for any geeky penguins like me out there LOL) If you were to come in our home, or spend some time with us anywhere, the differences begin to show.
As i sit on the sofa now in our Igloo i look across at PB on the other sofa, he has the lid from a ‘fruit shoot’ bottle, he is trying to stick it to his tongue, while playing on the PSP, he has his ear defenders on because Princess moo is watching some Disney movie that annoys him. He is also ‘snorting’ and making all sorts of strange noises, Alternately chewing his chewie choob and the lid while shouting random things at the game, peppered with laughing like a maniac!
For a chick with auditory sensitivity he is the loudest one i know! This is HIS normal, so much so that Daddy P is peacefully dozing between PB and Princess Moo. Occasionally he answers a question from either, of pushes PB’s head (Deep pressure therapy helps him be quieter) when PB places his hand there.
Ser Lex has just walked in the room and flipped over the back of the sofa, after a quick reminder of gymnastics inside he bundles out onto the trampoline, shouting at the sky, to our neighbors it probably sounds like nonsense, to me i can clearly hear him singing Minecraft songs. He stops and ask’s one of the other’s to “do the swing thing” only it comes out as ‘Do da Ing Ting’ which means can you swing high on the swing while i sit on the crossbar. He LOVES the feeling, sensory seeking at it’s finest. He’s also only wearing a pair of PJ bottoms, with a great big hole in the knee, he hates certain clothes and would rather freeze then wear weather appropriate things. Thankfully the weather is turning warmer in Penguinville, So while he will get chilly he will be fine.

If someone who didn’t know us were to walk in now we would make a ‘odd’ bunch i am sure.
But a ‘different normal’ doesn’t make it any less.
Autism isn’t a different processor, it’s a whole different system!!!
It’s the Lynx to the Windows, The Apple to the Sony, The quirky to the mainstream.
I know SO many people, who TRY to fit into the mainstream, and some can’t, some choose not to and some just loose themselves along the way.
I REALLY hope, 2014 and all the changes happening this year allow ALL Penguins to embrace the different normal.

Thanx for reading Chicks xxxx

What a difference 2 weeks make!

So last time i wrote Penguin wasn’t doing so good 😦 he was indeed released from hospital that day. He had already gone downhill from me posting that to 1pm when they formally discharged us, he was laid flat out on the unmade hospital bed, not moving, not eating, not even drinking. The nurse assured me it was tiredness and that as he had eaten that day he would continue to eat. She REALLY didn’t understand PB!!!!
We came home, he slept a little in Nanna Penguin’s car, he climbed onto the sofa, had some meds and went HYPER!!!!!!!!!! 
He was running about the house like a crazy person! 
At this point i went to bed, when i got up the next morning Daddy P told me he had eaten, very little, but eaten……After that EVERY mouthful, every sip, EVERY SINGLE CRUMB was hard fought and hard won……..by Tuesday he was down to a single bowl of jelly a day! We could NOT get any more into him, we fought, we begged, we PLEADED, no go!!! We rang and spoke to the hospital and they suggested the morphine sent home with him, if he was no better the next day or Thursday to call GP who would asses weather he needed to be re-admitted! He drank a bit more and we thought we would wait and see….Wednesday he wasn’t really improved, we banded about speaking to GP, but decided to wait to the next day. 
So Wednesday evening, Daddy P took Princess Moo to her ballet class, he had never taken her before, i stayed with PB to pick Ser Lex up, he gets dropped off JUST outside the iceberg, so PB wanted to take the scooter, he got on it, he scooted 20 yards, got off and said he wanted to walk, odd, walked another 20 yards, he started walking funny and promptly fainted!!!! 
PANIC……………………………………… Daddy P was the next few icebergs over, 15 mins on bus, Ser Lex could only be released to me, i couldn’t move…..he was only out about 20 seconds, i got him to sit on the scooter backboard and rang Daddy P, who suggested i ring Nanna P, she sent over my Brother (the kids beloved Uncle) i managed to ring Ser Lex’s escort and direct them to me, as Ser Lex turned up, shortly after so did Daddy P and the Princess, followed by Uncle. 
We decided that it was probably linked to lack of food and to get him checked. 
Off we head to the Chicks Hospital, PB see’s the nurse, he say’s he feel’s fine, we wait 1/2 hour, the Dr calls us, he JUMPS over Uncle’s feet, and SKIPS into the hospital room…………………………………………………………………..by the time i catch up he is hanging upside-down off the bed, chatting to the Dr!!!! She decides he’s ok, but she would like the ENT’s to see him, 3 hour wait!!!! During which PB drinks more then he had done ALL week!!!! 
The ENT Dr’s come and look, tell me it looks ‘perfectly fine’ and that although they INSIST on ‘crunchy’ food, jelly is perfectly fine (yeah i don’t understand either) so we come home, with a spray to help numb. He starts eating better but not amazing 😦
Monday morning, he wakes up, ask’s for toast and eats the lot, ask’s what else is available, can he have a drink? Can it be a hot one? 
13 days on the DOT, he announces, ‘i’m all better now Mama P’ 
JUST like that!!!! 
This Penguin amazes me!!!

The trouble with tonsils is……. *warning, this post is no holds bared*

Poor PB 😦
Monday night was a round of Musical beds in the Penguin house, PB wasn’t gonna admit it (or couldn’t) but he was anxious as anything about his op, We all got very little sleep!
Tuesday morning, PB and myself got up, got dressed, PB had his meds and we got in a taxi to get to the bus stop on time! All went without a hitch and PB was in his room for the day by 7:45 ish. We unpacked, he read some books and played on the Ipad, all going very well!
We met the anesthetist, she was very lovely and concerned about PB not coping with the anesthetic so said they would likely give him a pre-med, that was fine by me! We got changed, he had the pre-med and got into bed, for the next hour he went VERY sleepy but as high as a kite (at one point he sat BOLT upright and announced he was flying!!!) the nurses gave him a mask to play with and he spent a large portion of time trying to attach it to his face!!!
Anyway, he went down, went to sleep VERY easy and had surgery, came back after about an hour and 15.
After a while he started to stir he was REALLY out of it and i could hear him swallowing, I said over and over to his nurse, he was swallowing blood, she looked in his mouth and said no, it was just ‘old’ blood, he was also dribbling blood, only small amounts, wouldn’t remove the sick bowl from his face and at one point asked me who i was…….i KNEW he wasn’t right!
He seemed to come round a bit more but kept saying his ‘throat is gone’ and wasn’t really coherent, talking to himself and crying, Daddy P took him to the bathroom and he threw up blood everywhere!!! We managed to catch 99% in a bowl and waited for the ENT’s………………..Well we waited, and waited, and waited, about 3 hours in total, during this time he wasn’t with it AT all, sleep, barely moving, talking in his sleep, really unwell!
The nurse kept telling me the blood was ‘dark and there for old, probably what he swallowed in surgery’

ENT Dr’s turned up just before 3, looked in his mouth with a tongue depressor and saw a pretty large blood clot at the back of his throat!!! They went to talk to their boss and Mama P came home to grab some bits, no matter what happened there on, we were in for the night!
While i was away, he was really sick again, more blood, within 45 minutes he was back in surgery! I came back just after he got back into his room, he was sleeping still!
We moved rooms to a different ward for the night, he woke about 11:30pm (had surgery about 4:30pm) and ate half a sandwich, had a drink and went back to sleep, he was on fluids and constant monitoring so Mama P has hardly slept, because they kept beeping!!!
He was up for the day at 5:30am, after they messed about with one of his cannula’s, has eaten a bit more and drank some more, we are waiting for breakfast now and ward rounds, but everyone seems hopeful we can go home today!!!

So, the trouble with tonsils is……….they don’t always do as they are told!!!!