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Tuesday, 28 May 2013

look for the small things to stay positive

What a week! The ceiling falls down, I get a speeding fine in the post, all those poor people lost their lives and homes in Oklahoma and some lunatic hacks the head of a young man on our streets. When your drowning - not waiving, it doesn't take much to sink you. Combined with the fact Ed has crept in bed with us for the past two weeks, so I am a little more deprived of sleep than normal, it was just enough to send me into poor me mode. Whether or not my mood affected him or whether he was feeling it as well, Ed had joined in with a general angry mood. That's quite interesting when your non-verbal, you have all sorts of angry activities. Angry weeing, angry eating, angry running and biting something, angry hoovering, angry opening the front door, angry throw something random out of a window, angry tip something over - do you get the gist? so we haven't been the happiest house, and hence I have been a bit slack posting anything. Being in a miserable mood you start to notice all the things your happy mood blocks out. The broken curtain rail, the marks on the carpet, the marks everywhere! The holes in my cushions, the general broken bits and pieces that however many times are put away are out again. The three hoovers with their trailing wires that clutter up everywhere, the torn and strewn books .......

Now I am just getting back to myself when sponge bob comes on, normally I love him, but this episode just added to my gloom, sponge bob forgets how to tie his shoe, normally this wouldn't mean anything to me but I just look at my boy and think "will he ever be able to tie a shoe lace?' not a massive task, but just one more small thing he has to conquer. That's where he is at, for all the massive improvements he has made, he is still so far behind, we really have a mountain to climb. In my miserable mood my darling sister picks me up, and I try again to re-connect to all that there is.

When you are really down you need to pull a rabbit out of your arse to get you pointing in the right direction, and here my previous action has paid dividends. Last year I made myself busy and shook the tree as hard as I could to see what fell out to help me. As I tap away, Ed is at a holiday club which mixes ''normal' and 'special' children, the lady who runs it is so kind, despite a rocky start last year, he ran in today as happy as Larry, and to see him have the opportunity to do something other than his normal rituals at home, like play, something I always took for granted, has put a renewed spring in my step. I need to be quick now because its time to pick him up, but my blessings are once again out numbering my obstacles, my house just looks lived in, I have food in the kitchen for tea and a family who love me, and I am ready for my wee man, just hope he has lost the angry too!

Tuesday, 21 May 2013

looking at autism differently

Have you heard the saying 'things go bump in the night'? Well, we had a bump last night, and for once I'm not talking about a wee creature with 16 elbows that ended up taking up all the bed again! No, its better than that. The ceiling in the hall way fell down and decorated the floor with builders rubble!!!!!! Great, just what we need. I kinda did feel a bit sorry for my self. So, I got on with getting all the other bodies up and out to where they should be before dealing with the new treat of the day, but not before a cup of tea, after all I am British. And so I put the news on. Well, my small bump in the road is nothing compared to the mile wide tornado that has ripped through Oklahoma. So if that's my karma to deal with, thank you God, I can deal with that, don't sweat the small stuff. It got me to thinking about how different things can seem, even when they are the same thing. Let me share with you a story that actually happened to me, and being a bit slow, it only took about 20 years for me to begin to understand the enormity of it.

The worst cup of tea in the world

I don't know exactly how old I was, but I think it was during a holiday when I was a college. Mum asked if I would like a cup of tea, which of course I did. Now normally she makes the best tea ever, but this was truly awful. It tasted off, it smelt, and was the wrong colour and everything. It was disgusting, and for some stupid reason I kept drinking it! What was wrong with it? Then I realise. What a idiot, it was coffee!!!!!!! I took another sip, and the taste completely changed - it was a really nice cup of coffee!!!!! Now do you see why it took so long to understand the significance of this? or even why I think it significant at all! (loving the exclamation marks!!) Well it so important that it deserves a whole line to itself.

The coffee didn't change - but my perception of it did - and my experience changed with my changed perception.

Now I'm not bragging, but people have written tonnes of self help books about that one line and made millions from it, and I've done it in one line, for free! Move over Wayne Dyer and Louisa L Hay - there's a new kid on the block!!

So where does that fit in with my autism thing. Well, before he was diagnosed, he was a nightmare and we all knew something was very wrong.  A blind man in a box could have told you that, but we had no idea what to do to help. With his diagnosis came understanding and a place to start helping. I have had many moments when - God forgive me - I wished he had never been born. But then, I wouldn't have met so many wonderful people, and I wouldn't have realised my purpose. My life would have been calm and predictable ( which don't get me wrong would be nice now and then) but it would have been stale and stagnant.

Now back to my ceiling. A few years ago, before I got a grip and started interventions with Ed (more on that latter), we had an exciting few hours. I can't remember all the fun in the correct sequence, but it involved my darling sister coming for a visit to light my darkness. As I bathed in her company, Ed had done a massive poo somewhere, and I had him upstairs to clean him up, and cleaned everything else. So disaster averted, I was laughing with my sister when a loud plopping sound came from the hall. He had only flooded the bathroom. So 3-4 years latter, that bit of ceiling had just had enough and ended it all on the floor. So, I just have a bit of sweeping to do, and I would much rather do that than search through the rubble for my loved ones. As for autism, I really believe I can 'recover' Ed, and for that I am grateful.

Monday, 20 May 2013

its difficult to socialise and go out with an autistic son

Finally one of the countless elbows makes direct contact with my face, it would have woken even the dead. My head slips off the few inches of pillow it had been on and I nearly fall off the wee bit of bed I have managed to hang onto. The culprit is taking up most of the bed, which is quite a feat as its quite large and he is quite small. Suddenly my heart sinks at memories of the night before, God, what has he done to his bedroom! I was just to tired to even look because I was to tired to do anything about it last night.

My darling sister had bought us tickets to Warhorse at the National Theatre (which was absolutely amazing, and the first night out Richard and I had had since I can remember)  and had also offered to babysit. She had come all the way from London and had gone back home about midnight, I got a text to say she was home about 1am, and remember distinctly hearing laughter coming from his room, this could be bad! I just hoped that he was laughing about what he had got up to with my sister. When we had arrived home, both her and Tom were laughing about it. Apparently he had got himself wet in the downstairs department so she had changed his pants. Remembering what I had said about his sensory issues, she thought he might like it if she put his pants on his head! Apparently he did, because he went upstairs and put on ever pair of underpants he could get his hands on, 14 in total, all on at the same time like some Guinness book of records. They had all had a great laugh and night together.

WOW! what a great Saturday, and it had all started off so badly. Ed had woken in bed with us, again, but in a really bad mood. Literally sat up in bed screaming, fell on the duvet biting it, ran down the stairs in rage and opened the front door, (its one of his things), and sat screaming in the living room. We played open the door shut the door a few times before he calmed down enough for me to remind him Auntie Margaret was coming today! Magic sentence, instant calm.

So its morning, I braved a look in his room to get him dressed. Now, the limits of what he could have done in there really is only limited by him imagination, anything is possible, but thankfully he must have just been playing the day in his head and laughing at putting on all those pants. With a non-verbal child, you never really know. This really was going to be the best weekend ever, because Lauren was coming today to take him out, so off they went to the local play farm. He loves it there, although I am not so sure they love him. The past two times he'd been, he lifted the latch on first the sheep and then the following week the pig pen, and let the animals out. Apparently they had been quite cross, but Lauren in her Action for Children top had stood her ground and pointed out perhaps they should have locked it. Also, the last two times he had licked some poor child on the cheek. My dear girl in her work top had just fronted it out bless her. This week we swapping licking for pushing. According to Lauren, Ed had been playing in the sand pit when a boy walked past and shoved him, Ed didn't respond immediately but when he had the opportunity - shoved him back. Now the boys sister either hadn't seen the first incident or had ignored it, but acted when she saw Ed shove her brother and came over all indignant. This is just the sort of thing I dread, its the straw that breaks the camels back and whilst I think I am quite a strong person - can't take that. I guess it's because I have to explain everything and it reinforced what autism has stolen from me. So I only ever take him out when I think its quite, and spend the whole time in like a high anxiety state. But my darling girl stood her ground and fronted the girl and her mother out. I am reminded of an occasion earlier this year, the weather was intermittently drizzly, Ed was bored and kept opening the front door, so I took him to the park. When we got there, there was only one other family, 2 adults and an older boy. Something about the boy and the way the adults stood back from him, set of my spider sense and I knew he had some special needs. He was having a great time. I watched them out of the corner of my eye as Ed went round and round on the roundabout, I was kind of thinking about our future. Would that be us? Then the sun came out, and with it other families, and the boy and his parents simply melted away, and part of me wanted to go up to them and tell them to stay, but I was busy at the other end of the playground looking after Ed and couldn't. I just felt desperately sorry for them, no one else had noticed. I felt invisible.

Friday, 17 May 2013

With a pretty normal day behind us, Ed gets in the bath with my best teapot filled with cranberry juice a few days ago. This teapot was bought in Bude, Cornwall with some birthday money on holiday BC (before children) and is stainless steel in an Art Decco style, so its not breakable. Generally, if its not dangerous or going to break anything, I let him do what he wants, you have to pick your battles carefully otherwise you have endless days of conflict. A teapot of cranberry juice was small stuff and we had an otherwise uneventful night, leaving the pot in the bath.
 Ed has a history of pooing in the bath, but recently had lulled me into a false sense of security on the matter, so I was quite laid back about him playing with it next bath time. Because of his sensory issues, he loves to stay in the bath, and I use this time to try and sort out the days carnage round the house - but whilst this time is useful its also a bit like Russian roulette. This particular night I got a full chamber (not knowing anything about guns I hope this means I got shot this time). There he is, happily sat in a large bath of poo soup. My beautiful teapot perched on the side of the bath is full to the brim with almost recognisable digested pieces of peas and sweetcorn (where do they all come from, even when you haven't served them that day) and chunks of floaty brown bits and bobs. My boy is just lying in it like Cleopatra in a really bad bath, and this dear readers is my normal. My spray bleach is on hand and I always have disinfectant, a bit like I always have a bucket ready for the next pair of soiled pants, or whatever gets in the way of Eds ol' faithful.

Now yesterday was interesting, Ed got out of the taxi quite happy, in the door quite happy ( I mention this because at any of these points something could go wrong for him and he flips ) but once in the hall something is wrong.
My son as I have said previously is non- verbal, so this means nobody has a clue what the matter is. Screaming he heads straight in the office for Tom and pulls his hair and tries to bite him in a completely unprovoked attack. Out he comes screaming looking in the under stair cupboard. I think he is upset because the hoover isn't out, and my offer to hoover the house for him eventually calms him down after a couple of minutes of hot hoover action, and then we have happy Ed again.
One thing most parents will agree on is that you use all your senses looking after children. It is simply impossible to be with them every minute. As a carer, you do your household cores when your charge is gone, this never happens as a parent and you just have to get on with it. So you use your ears, the different sounds they make give you an idea of whats happening, your nose gives clues as well and if your child has special needs you use your 'spider' sense. My spider sense went off whilst I was clearing up after tea. I had heard him run to the toilet but not come out, he was making funny little sounds, I couldn't smell anything so I thought he was maybe just flooding the sink. But no, there was a big soft soggy poo on the floor, half in and half out of his trousers, he was naked from the waist down except for the pair of poo pants he was wearing. Bits of poo were on his hand, he had tried to wash them off so there was poo on the taps and sink and poo on the towel. Just to mix it up a bit, there was poo perched on the edge of the toilet seat and joining all the dots was a sea of wee. Being a massive fan of CSI, I could look at the crime scene and deduce the following: Ed had not got to the toilet quick enough having left it to the last second playing with the hoover. Once in the toilet things happened quickly before he managed to get his trousers down. Once down he had tried to get on the toilet for a wee but was too late again, when from the edge of the seat he started to wee before he managed to push his willy down and so therefore weed all over the floor. So how could I be cross? he had tried. At least I could put him in the bath with a 50:50 chance of taking him out of a clean one, you win some you loss some.

normal service has been resumed!

Well, I was so proud of myself last Friday. I'm pretty clueless about technology and have only recently started using a mobile phone, so actually getting something up and running was a real achievement for me, so there I was all fired up about sharing the exciting world of caring for Edward. Saturday came, normally the weekends are really quite "exciting" - but no nothing. So there I am in the early evening getting our tea ready and going over the day in my head, really, he had plenty of opportunity to kick off, and I am convinced he is sabotaging my plans for this blog with his psychic abilities (more on that latter). In the morning, Blaine had forgotten his keys and couldn't open up the Saturday Club so we had to go home, this would normally have led to a melt down, but nothing, not even when we got home, no complaining. Blaine called, keys acquired, back to Saturday club, happy all morning, happy all the way home, happy eating lunch, happy playing with some toys - yeah I said it, playing with some toys! what the hell was going on! So, there I was cooking tea, when I realize all the cushions have gone, and Ed is walking down the hall with one, so I follow him to find out what he's doing. He is now laughing madly (which is usually a bad sign) and running in the living room with it, and that’s when I see he has posted all my cushions through the top window and they are all in a bush out in the pouring rain, this apparently was hilarious. The rest of the evening involved a lot of hoovering, a lot of chuckling (which as he is non-verbal I assume he is laughing at posting the cushion) and one pooh in the bath. Normal.

On Sunday I drive down to my parents. My lovely brother has bought them a bio-mat to help with Mums bad back and Dads prostate cancer, this mat emits far-infrared rays and looks like it could help, but its too heavy for them to get out of the box.  I am really excited about what this could possibly do for them and set it up for them. Its about an hours drive, Ed is really excited and has had the hoover at the front door ready to go for some time, but having set off happy, something happens and he gets upset in a flash. I have no idea what it is, and can't do anything coz I'm driving, he unbuckles his belt and is kicking the back of my seat, real tears, screaming NO!!!!! Thankfully, it only last for 10 minutes, but starts again as we are nearly there, as we pull off the motorway and he recognizes where we are, he is all smiles again. As for the rest of the day at Nanny and Babas’, he is really good again, much calmer, but still a lot of hoover action! So we have a lovely day with them, get the mat up and running and Ed is fine going home. With nothing else really to do on the way home but drive, I play the weekend over in my head. Edward really looks like he has turned a corner from the screaming, biting, kicking, head-banging, shit smearing child that we have known over the past few years, even when that calmed down he would still have me on my feet all time, and other than pouring 3 pints of milk down the drain and eating all of the toothpaste, he had been really good. So I call my parents to let them know we are home safe and sound from my mobile (coz now I am all technical) and he jumps out of the car and runs up to the front door where he pulls his pants down and wees all over my front step. Bath time is 2 poo’s, 2 baths! normal service has been resumed!

Monday morning. Ed like his mother is not a morning person. I generally leave him alone till he is ready, but this morning he is all smiles. I think he is still laughing about weeing on the doorstep (he was amused all night with it) off he goes in the taxi to school, and I look forward to having sometime not looking after anyone, when the school calls to say he has been sick in the car, come and get him. I am told to keep him off for 48 hours!!! arghhhh!!! When he comes to reception with Deanna, the sweet lady who is his primary contact he is all smiles and happiness, there is nothing wrong with him. He was sick in the car last Monday and really enjoyed the day off, and I am sure he has stuck his fingers down his throat to get the day off again, I know that sounds harsh, but 2 Mondays on a row! no sickness anywhere else!! no loss of appetite!!! happy!!!! Well, what will be will be, so on the way out I talk to Deanna about the weekend and starting this blog, when I get to him peeing on the doorstep, she asks what’s up with all the weeing? Apparently he has been weeing everywhere at school, including the wastebasket in the classroom and the playground where he added the creative touch of peeing whilst spinning so no-one would go near him to stop him till he finished. She has agreed to let me know what he gets up to at school so if its 'interesting' I can add it on. So dear reader, there are still rich pickings to be had.

Friday, 10 May 2013

why write this

After the normal 5-6 hours of madness that follow Edward getting home from school and into bed, I sat on the sofa exhausted and phoned my friends and made my excuses for not making another night out. The following morning, I received some sweeet message wishing me well, and how they understood - but nobody who hasn't looked after an autistic child does. An so the idea for this blog began to germinate, because unless someone tells you how can you know! With autism affecting 1 in 100 children, some saying 1 in 80, the chances are good it affects someone you know. Picking my way through the emotional and physical minefield of autism is the most difficult and interesting thing I have ever done. I have come across all sorts of bits and bobs that I think would be of help to others in my situation and interesting to those who arent.

The name for the blog is the statement Eds taxi driver came out with as Ed strolled in the house after school, this was after he had got out of the Houdini harness + velcro cumber-band which was supposed to keep him in his seat, headbutted the escort and bitten him through his leather jacket as he tried to let him out, stripped off and had a redhot sweaty screaming fit. "He looks like a little angel" he said incredulously, I use this phrase all the time now with my family when we have an Edward moment.

I am the mum of 3 boys, 18years, 14 years and 6 (my bonus baby-Edward) my life is like ground-hog day except that whilst I seem to be doing the same everyday, I get older, fatter and more knackered (tired to those that dont understand that saying) my life is funny and tragic, and I hope that you'll enjoy sharing my ups and down. So to all the mums of 'normal children' I hope to give a glimpse of what life is like for all those warrior mums of 'special children' and to them I want to offer hope, friendship and understanding.

So, this is my life....