Saying goodbye to watching class plays forever. Thank f**k

Today I saw my last ever class play, Ali is yr 6 now and once they go up to senior school they don’t do the class play.
Ali hate’s them with a passion, they are not for him and,to be honest, they have made his life miserable in weeks leading up to them, this one being no different.  if you have read my pink/purple blog you will see that I won the battle. and Ali is dressed in blue.   He never said a word, and with the exception of this picture which I took at the end, he wouldn’t even look forward.  even here he wasn’t happy with having to turn around as there was still a lot of mum’s in the hall.  people, Ali doesn’t do people!

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From these picture’s you can see that while other kids may love the opportunity to take part in play’s and enjoy doing them.  Ali doesn’t.  

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refused to look as he does his part and  holds a banner. he is supposed to be facing front.

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Walks off after a few parents laugh because he won’t look forward after prompting from his teacher. 

Now some may say that he should have to take part in these things, but if they knew the meltdown’s we have about it, if they knew how upset this makes him, how unsettled, then maybe they would understand.  
I have never missed any of his class plays or Christmas plays. In fact, I have never missed any of the kid’s school productions. This was the first one ever that his dad missed due to work.  we have always gone and watched both boys, but I have to say.  I am so glad this is the last school class play I will ever have to go and watch.   Now we just count down to the Christmas play,  hopefully, now his teacher will understand the anguish Ali goes through and will think twice about what part he is put in.  
This evening he had a smile on his face for the first time since they started practicing the play because he knew it was over.  

A week later! Some things can never be unseen!

About a week has now passed since I last posted………….

After calling and explaining to the  receptionist at the district nurses office at 9.30am when they opened,  she said they would get a nurse to call me back (have you ever tried getting hold of someone at the weekend?) 
so  I waited and waited in the end about 11.30am by which time I was getting quite worried so  I called the hospital ward that Dad was on and explained again what has happened, and they told me to call his doctor.  (at the weekend yeah right)
So I tried the doctors and after no answer I got hold of 111 and spoke to the NHS services and was told that they couldn’t help unless I was with him so I said I would go around straight away. Told Dick head to tell nurse if she called to call his number. Went to start my dads car which I now have as he can’t drive for a month so im using it to go back and forth to his place as mine is going to its final resting place in the week  *will try and actually blog about that when I get the chance) anyhoooooooooo insert severe swearing here  ******  Now in English…… it wouldn’t start so gave up and got in the landrover to drive over there.

Got to the old man’s let myself in and the bloody nurse had just called and she would be around in ten min’s well she actually took over an hour and half   and arrived about 1.15pm but when she got here she was great she took dressing off and its a lovely neat scar so should heal well and the stitches didn’t need trimming.  
I explained the problem about the discomfort he was in and the fact that he had not pee’d since friday morning and she said she was capable of putting in a catheter but couldn’t because she had to get an ok from the doctor so here was are….It’s Saturday and she has to get a doctor out  to put in a catheter to help relieve dad while they find out the problem. She said she would be back in a couple of hours as they had a doctor who works with the District Nurse…….  So we wait…………… and wait……….. and wait………… and wait……….. bearing in mind she said a couple of hours and that would be about 3.30pm  at 8.30 pm I am starting to get really fed up, My dad is really starting to be in pain now.. and yes my temper is starting to get a tad frayed….  And to top it off I have no idea who to call.. I tried the district nurses office and there was no answer……… so I called NHS 111 and after explaining the whole thing they said they would get a doctor out to put in the catheter but it would not be a priority….. and to remember its Saturday night and people do silly things….. so they are very very busy.   

At 10.30pm the Doctor turned up..
put a catheter  in and did a prostate examination as an enlarged prostate is 99% of the time the reason why you can’t pee guys! 
  (  There are some things in life I never wanted to see and both of these came under that heading)
funny-celebrity-pictures-what-has-been-seen-cannot-be-unseenAnyway  …………..  the
catheter that was used has a valve so it can be emptied. so to give you an shorted version of events  5 litres of pee into a bucket by the side of the bed later  I left and went home…….  one cup of coffee all day is not a good thing…………. So since then I have been spending most of the day running him around to various appointments.. cooking and cleaning for him and then getting home and doing the same thing here.

Yesterday (Friday) I exploded……. I woke up feeling like shit……. I have had a dry cough for the last few nights that’s been keeping me awake and friday like I said I woke up feeling like death warmed up.. I called my dad and said that as he had no appointments to go to..  that I wouldn’t be coming around today.. there was a cottage pie in his fridge that all he had to do was put in the oven.. I had typed out a list of the times when he had to take his bloods and pills etc so he only had to look at that to see when to take everything.  Told him I was going to have a lie in as I had been up about 6am all week .. This is the school break bty……..
(Again one day I may blog about other things going on.. Lets just say I have seen it before and yes if someone asked me I would say my dad has onset dementia now to top off everything else…….. I have noticed signs for a long time but probably just swept them out of my mind after spending years looking after my mum with it…….. I guess if I ignored it I thought it would go away.)
Monday I have to take him to the doctors for another appointment to find out when this catheter is due to be taken out on trial to see if he can go without it but already he has taken a liking to it as it means he doesn’t have to constantly pee all the time because of the water pills he is on for his heart, so I have a feeling that he would rather keep it… I of course have to do the cleaning of said thing  YUK!

Anyway I had a day off on Friday………….. and screamed an shouted at everyone… and cried… in fact I did a lot of crying.. I have hit the end of the road… I can’t look after one person all week and then come home and have to do everything.  The washing hadn’t been done since last weekend… the  sink was so full of dishes it was overflowing.. in fact the dishwasher still had the stuff in it I loaded into it last Monday night when I got back in from my dads.  The house was a tip… Thursday I had to take my dad shopping on his scooter as he wanted to get some bits so I left the house at 9am  Now there was some Dr Who thing on in town and the boys wanted to see it so we were going at 1.30pm   I said to Allan I would be back and we could take the boys…….  At 1pm I called Allan to say I would be on my way back. I had some shopping with me and then we would have to go straight up the town… I get back and he is still shouting at the boys to get ready.. Ali who doesn’t do getting rushed or things sprung on him had gone into meltdown and refused to do or go anywhere..

This is when I snapped…  He had done nothing all day… not even got the boys ready or warned Ali that we were going out.  There are three adults in the house and as I’m out that left two.. and neither had done anything… except maybe sit and watch tv or go on bloody facebook all the time.  And this is why I had snapped…  
so Friday my day off I had had enough.. right at that moment in time I could quite happily have left the house and jumped off a cliff………   

I wanted to see this Dr who stuff up the town so told Ali that we would be going out later on for an hour or so an if he was good he may get an ice cream out of it so he went upstairs and got dressed… Thats all it took.
Have I mentioned the fact that my dad called at 8am to ask what time I would be around!! what part of having a lie in did he not get… oh yes the same part of Im not coming around ..   

we went up the town… saw the exhibition things…  picked up some bits… got myself some medicine for the lurgy and some cough medicine and got Shelby a few clothes and came home as we also had to do the newspaper run in the evening in the scout van collecting newspapers down a number of roads.

Got back at 7-pm and decided that sandwiches, cake and doughnuts and chocolate while not heathy would be a good enough dinner for the kids.
pulled the sleep sofa out and watched tv before going to bed.  I had phoned dad to say I would pick him up when I got up as I was having a lie in and that Allan had to go out and do a bush tucker trial thing with a scout troop up bexon lane and he would be gone in the morning so I would come and pick dad up when Allan got back and that I would bring him back to my house so I could get on with some stuff……..  plus he needs a new bog standard mobile phone as his is apparently not working properly..  (I think its more the operator that the phone but I stand to be corrected if I’m wrong)

So here I am… updating this blog while I’m waiting for Allan to get back and I have already had three calls from dad asking why I am late………..  arrrrgghhh!!

Autism Night Before Christmas:

Twas the Night Before Christmas And all through the house.

The creatures were stirring Yes, even the mouse We tried melatonin And gave a hot bath But the holiday jitters They always distract The children were finally All nestled in bed When nightmares of terror Ran through my OWN head

Did I get the right gift The right colour And style Would there be a tantrum Or even, maybe, a smile? Our relatives come But they don’t understand The pleasure he gets Just from flapping his hands. “He needs discipline,” they say “Just a well-needed smack, You must learn to parent…”

And on goes the attack We smile and nod Because we know deep inside The argument is moot Let them all take a side We know what it’s like To live with the spectrum The struggles and triumphs Achievements, regressions… But what they don’t know And what they don’t see Is the joy that we feel Over simplicity He said “hello” He ate something green! He told his first lie! He did not cause a scene! He peed on the potty Who cares if he’s ten,

He stopped saying the same thing Again and again! Others don’t realize Just how we can cope How we bravely hang on At the end of our rope But what they don’t see Is the joy we can’t hide When our children with autism Make the tiniest stride We may look at others Without the problems we face With jealousy, hatred Or even distaste, But what they don’t know Nor sometimes do we Is that children with autism Bring simplicity.

We don’t get excited Over expensive things We jump for joy With the progress work brings Children with autism Try hard every day That they make us proud More than words can say. They work even harder Than you or I To achieve something small To reach a star in the sky So to those who don’t get it Or can’t get a clue Take a walk in my shoes And I’ll assure you That even 10 minutes Into the walk You’ll look at me With respect, even shock. You will realize What it is I go through And the next time you judge I can assure you That you won’t say a thing You’ll be quiet and learn, Like the years that I did When the tables were turned…….

Author Unknown

 

 

I have found the perfect soft toy for Ali

Every now and then you come across something that catches your eye and you sit there and think “you gotta be kidding” because you can’t believe anything like it was actually made, marketed and is wildly successful, but rarely you come across something that is all those things, and I’m going to tell you about it, when I stop crying and scratching my head.

 

Let me now introduce you now to Pee & Poo,  http://www.peeandpoo.com/
Not that you haven’t met before, but probably not in this way. Created by Swedish designer Emma Megitt as a college project, Pee & Poo became so amazingly popular that they have t-shirts and stuffed… no, not animals, (let’s just call them number one and number two, shall we?) better yet, t-shirts and plush pals were created to… um, cuddle with? They are meant to address body functions in an open and playful manner and have been an instant hit with kids and adults alike. Seriously?

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Okay, I suppose they can be used for toilet training, or for adults who enjoy a little “potty” humour, ok what kid would actually really want one of these stuffed……erm toys you say..

Well the answer is MY KID.

Seriously as soon as I saw them I know Ali would love them  remember he doesn’t do toys but loves soft stuffed toys  , I saw these posted on the internet as just as stuffed poo and had to google and google until I found out where they came from (please no comments I didn’t mean like that) .. I mean where you buy it from . Anyway I posted the link on Facebook and straight away a close friend of mine said that would be right up her sons street……. and then my sister-in-law said her son would like it..

three other friends who I know via a Facebook group contacted me, all asking if I could find out a local stockist… yep their kids would love it to…. What is the common denominator between all these kids apart from the fact that they are a little strange because we know they would love the pee & poo soft toys… The fact that All are Autistic in some way… How weird is that… Anyway I found somewhere I can get them.. of eBay… (you gotta love that place)

http://www.ebay.co.uk/sch/i.html?_trksid=p5197.m570.l1313&_nkw=pee+and+poo&_sacat=0&_from=R40
so I have ordered a set and that’s another stocking filler put away for Christmas 2013 for Ali 🙂

An Open Letter to Parents Whose Children Don’t Have Autism…

I saw this posted on one of the Facebook pages I joined

https://www.facebook.com/singlemotherswhohavechildrenwithautism?ref=ts&fref=ts

 

And it really hit home because I know all about these melt downs we had one only today from Ali and that involved doors being kicked in, screaming, shouting and things being broken.

My friend’s sister has four children, ages 14, 13, 7, and 3. This woman’s 13-year-old son has a severe form of autism and a mood disorder with psychotic episodes; doctors have told his parents that their son is a very unusual case. As a result, life is extremely challenging for the entire family. Because their son is prone to frequent and uncontrollable outbursts, they’re all having a particularly difficult time in the condo complex where they moved last year for his mother’s job as a biotech scientist. Her heartbreaking Facebook post, which she allowed me to share, strikes me as the kind of thing every parent should read, particularly if he or she doesn’t have a child with autism–or any other disability or mental illness.

 

“I would like to say something to those people in our community who look at my husband, myself, and our disabled son in disgust or shout out your windows for us to just keep him quiet. He is a minor inconvenience to you. You get to go back to your lives, travel as you please, eat what you please, and go about your merry way. Imagine what it is like for us, constantly struggling to keep our son safe. Imagine what it is like for our other three children, whose friends’ parents won’t allow them to come over while our son is home, who are constantly told they can’t go places because it’s too difficult, and who often can’t make their needs heard above his yelling. But most of all, imagine what it is like for our son, whose level of anxiety is so great, whose suffering is so enormous, that he is driven to cry, driven to scream, driven to bang his head and bite his arms and legs. Have you ever in your life felt so much pain that you were driven to that? Be grateful for what you have, for being born with a normal functioning brain, and maybe you would consider being helpful instead. We could always use a home-cooked dinner, an offer to take one of our other children to a movie, or just a smile of support.”