Annoyance

Paediatric visit today, what an annoying thing that is. She used to come to school, but because of cut backs instead we had to take M to hospital. Can you imagine how confusing that is for him, change of routine, strange place, and he doesn't know he's different so doesn't understand why he has to go to a hospital to see a Doctor. We told him it was because she was busy and had invited us to visit her. He was so nervous. He never made eye contact once, and she asked him all sorts of stupid questions. Lecturing us on teaching him how to do chores and cook, for god sake he's 10, and he's never going to be independent or leave home. Also banging on about his diet, which is very restricted, I found it very patronising, she has no clue what its like.

Found it all upsetting and frustrating, we do OK, and don't need reminders like this. Kev was fab and supported us brilliantly, don't know what I'd do without him.

So today not a good day, feeling tense and wound up, think it could be cider o'clock soon!

Nothing else to talk about today, have a great bank holiday everyone, enjoy the royal wedding, me and M are gonna watch it.

Adios x

Its been 4 + years!

Its been 4 years and 4 months since Ive blogged on here, I came across the URL and took a peek, it bought back alot of memories, somethings have changed alot in the last 4 years, some very much the same.

My beautiful boy M is now 10 ½, he is still very typical autistic, he is obsessed with lego, Harry Potter and various characters from Time Crisis, he will talk about it every waking minute, he says "Daisy can I tell you something" (he hasn't called me Mom for years, always Daisy), I say "yes" and its into the blah blah blah of it all again, i always say yes hoping he actually has something to tell me, but its not often. Does my fruit in, but i never let him see it, i couldn't hurt him like that, so always listen with a smile on my face and give the answers he needs. He is a very loving little boy, full of kisses and cuddles, I am so thankful for that as I know other parents have it much worse.

He's still at the same school, with the ever wonderful Julie supporting him, I can't believe there's only 18 months left, time has flown since the early scarey days. M copes very well now, in the last 4 years at school Julie has been off with Breast Cancer, now recovered thank goodness, M had a new carer, Sam, who was 18 and very different but they got on well, who would have thought he'd cope with that. He's been on loads of trips, done loads of plays, and is getting better and better. We don't have very many meltdowns over school, though from time to time he feigns illness, but ive learnt to recognise that.

Weve had various birthdays, Christmases and holidays and ups and downs, but on the whole all good with some blips inbetween but mostly good.

M's half-sister G has moved in with us, 3 years ago, her b***ch of a Mother (who I will refer to as Frau Slag Bag) went to live in Germany with her boyfriend leaving G here, how much does that suck, what sort of a Mother would do that, so at the tender age of 14 G had to move house, school, friends and came to us. Then the bloody woman went and had a baby with her bf, G feels replaced, I tell her she's not, but if i'm honest, i agree with her. Life living with G has its ups and downs, she is a typical teenager thinks mainly of herself and her troubles, I don't think its even occurred to her that it was difficult for all of us, and Ive had to learn to parent a teenage girl, with no experience. I love her very much, but i get saddened at her selfishnss, rudeness and ignorance. I find it very hard when i talk to her, sometimes shes fine other times, I just get a grunt or a look, which hurts, and lets face it, this is my own home, why the f**k would she be like that. All we ever try to do is love her, support her and give her a good and happy life, just occasionally it would be nice to know that she's OK instead of seeing her lie in bed attached to a laptop 24x7, what sort of a life is that! All this tinged with the quarterly visits from Frau Slag Bag, which totally f**k G up, Frau Slag Bag sails back off the Germany to ass kiss her twat of a boyfriend, and we pick up the pieces......do I hate her.........F**king right I do!

Me and K, what is there to say, he is the love of my life still, we have our ups and downs, not enough time for each other, often go round in the same old circle of being distant, have a row, pull it back together. On the whole were good, but sometimes i think weve lost something along the way, but life does that to you doesn't it.

Me Ive changed to a less pressured job, which bores me to tears to be honest, but it pays the bucks so i can carry no supporting and loving my mad old family.

Thats all folks, catch you later blog fans x

Me, Max and Autism: This Week

Well, been a mixed week so far. Max is seriously hyper-active, I think cus very excited about getting XMas presents, or it may just be all the non-routine activities right now. He is coping well though, in the past he would have withdrawn totally. He is getting angry at times, but Grace came up with a great idea, instead of punching us or the wall, punch a cushion. It worked! So though we can't stop the punching, at least this is a safe way of doing it.

All the XMas pressies bought now, all wrapped. The main food shop is done, just the fresh veg to get at the weekend, and some present delivering to do.

Now find I am doing a party at our house on boxing night for 30 people! Oh holy sausages! But...Max will like it, all the people he loves in the world will be there, and he will have a ball. I know you'd expect it not to be so, but he is safe and happy with family, cousins etc, and its all that.

Feeling stressed, suspect partly to do with not smoking, Kev says I am agressive and snappy right now. I'm having a bad womans thing right now though, which is probably also to do with it, and the stress of XMas, worrying that Max will cope on the day.

I have to say though this year not been as bad as previous years. At least this year when other parents ask if Max looking forward to XMas I can truthfully answer yes. Always had to say no in the past, and people never know what to say to you, which isn't nice.

Going out with friends on Saturday night for our annual booze up, so will be good for nothing on XMas Eve. I am looking forward to it, it will be really nice just to go out and let rip with mates, and no kids. We are staying at Kevs Moms and she is having Max for us. Can't wait, by then all preparations will be done, yahoo.

Me and Kev not getting on that well at the mo, we seem to be very ratty with each other, its always one or the other of us in a mood. I do love him so much, but wish he could be a bit more cuddley with me, but he says as I'm so angry all the time, why would he want to be around me. But I get angry cus he's not around me. What a vicious circle. Sometimes I long for the old happy days when we didn't have responsibilities and worry like we have now. But, you can't put the clock back, and its probably unhealthy to long for it, but can't help it sometimes.

If I don't get to BLOG again, before XMas, hope everyone has a good one, and survives it.

Merry XMas and all that sh**

My Sisters Birthday

Well, Max is bouncing off the walls right now. Its nice though, he's so excited for XMas, finally at 6 years old, he likes XMas....so far. He's done his XMas play at school, he wore his headphones, and Julie (TA) sat with him, he looked bored through most of it, but did his bit really well, and didn't cry at the end. Normally he cries his eyes out, so excellent. Think he's glad the play is all done though.

It was my wonderful sisters birthday yesterday. We went round last night, with Max, my elest sister and husband was also there, and my brother and his wife. God my brother can be such a total knob cheese! Max was really enjoying himself, running round, and telling everyone about Preston Pig DVD, he did a whole rendition of the quiz off the DVD, my sisters were just loving it, seeing Max animated and happy. My brother made comments about his hyper-ness, and said "God must have looked at Max and said ooo theres Jo, she deserves him". But it wasn't said in a ice way. They all have this thing that I was a bratty child, as I am lot younger than them, (they are 11, 16 & 18 years older than me). So apparently I deserve a child like Max cus of how I was? What a shitty thing to say. I didn't realise last night, but now thinking about it, I am most miffed. What a typical comment from my brother! He always has to make nasty comments. Its a shame as he can be a lovely bloke, but he always has to go and spoil things.

Apart from that, my 2 sisters just loved it, and it was really nice, but god how tiring it is at the moment. I can't complain though becuase Ive waited a long time for this.

Me and Kev are OK, both permanently tired, and don't seem to have time for each other. Got some problems in certain areas of our marriage, but it has to be faced, and together we will sort it out. Its very hard for Kev, and I had to be quite hard on him today, as I think he is burying his head in the sand, but I said what I said because I love him more than life itself.

So......lets see what happens next in our mad lives.

Sorry its been so long

Gosh, its been along time since Ive done anything here. Sorry, been very ill, Had flu, then chest infection, gave up smoking, coughed so much cracked a rib. Just not had the omph to BLOG.

Apart from that.....

Things pretty good here right now. Had Max's statement review, and managed to keep his 27 hours 1:1, so thats good.

He's been on 2 school trips, to an environmental centre, and to a performance of Pinnochio, (he's never been to cinema or theatre before), he sat on Julies lap (his wonderful TA), and coped really well. He also loved the environmental centre.

Now its preparations for XMas. This is the first year he's ever liked it, he is looking forward to getting presents. He doesn't look to convinced of the whole Father Christmas thing, suspect his sense of logic tells him its impossible, but I am following on with the traditions anyway.

Jo

Max's Birthday

What a busy but brilliant weekend!

Saturday went shopping with my sister (a rare treat), to buy other other sisters 60th birthday presents, and treated myself to a Radley handbag. Been salivating over it for 6 months, and decided to splurge. Love it.

Got home and took Max to his friends birthday party at the Tumble Jungle, mixed success. He loves the first part playing on the equipment, slides, running round etc, but then its up to the party room. Not good! It was boiling hot, an enourmous sound system blasting out heavy bass reggae. Someone dropped a drink all over Max, he was saying "Mommy wipe it off", then he just couldn't bear the noise. He calmly said "Mommy its too noisy", so I took him back downstairs. He ws ever so brave though, he tried to do it. He found a car to play on and all was well. Went home (had a crippling agony IBS attack on the way), and we all chilled.

Yesterday was just the best day ever ever! It was Max's 6th birthday. He has always hated birthdays, doesn't like presents in shiny paper, doesn't like surprises inside, doesn't like all the people saying "happy birthday Max", so each year weve guessed at presents, played it all down. Not this time! As he can talk quite alot now, he has been able to tell us what presents he would like, and as he can understand alot more now, we have been able to prepare him for his birthday, and that people would come, and that he would get presents. Grace had baked him a birthday cake on Friday, and bought it over Saturday night (Grace lives with her Mom). She had bought him an enormous talking Lightening McQueen, he loved it, played all night with it, took it to bed with his torch so he could look at it. Just great. Sunday morning, we quietly sang happy birthday to him and gave him his present, a Disney Pixar Piston Cup 500 race track, you should have seen his face, he was saying "Oh wow", and couldn't wait to play with it, he didn't even mind all the noise of it. Through out the day various family members came round, all bearing presents that he wanted,and loved. Julie his wonderful LSA from school bought him a talking car, perfect. What wonderful lady taking time out to visit us this weekend.

By the end of the day everyone had gone, and we were all shattered, Max just cuddled up to his Dad and stared into space, but happily.

Over the years I have been very upset about Max's autism, and how occasions like birthdays and XMas are hell for him. I have felt jealous of other families that can enjoy these normal activities. But something I thought this weekend was, all parents out there take alot of things for granted with their kids (not there fault, just natural), to most people a childs 6th birthday, though lovely, is yet another birthday with the hassle of parties etc. For us this year, for the first time ever in Max's life, he has had a proper birthday that he has enjoyed and we have enjoyed giving to him. So though life can be hard, its these little leaps that give us huge satisfaction. I'm not wording this very well.....things that people take for granted, we have learnt are precious things, and I am so thankful for it, it makes you appreciate everything. Right now I am feeling like the luckiest person/Mom in the world.

Funny old Night

Gosh I was so tired last night, got home from work, and took the rare decision to let Kev do it all. Had a cigarette and went to bed to watch TV.

Max had left school slightly early in floods of tears, and we couldn't find out why. Its always guess work, he just won't or can't tell us. He had refused to do outdoor PE, then had got upset when in topic they were playing with skittles and he couldn't do it. Max would hate that. He also said a boy had hit him, but again unlikely as this is his stock answer. That was it no idea. He was in a difficult mood all night, everything made him angry, stamping his feet and screaming. He does tend to copy cartoon characters though, and this is a cartoon character act, if I tickle him he instantly changes to happy little boy. Sometimes its so frustrating I don't know whats the real Max and emotions or the ones he's copying from something he's seen. I so wish he could tell him things, it makes me very sad.

Its his birthday on Sunday, 6 years old, I can't believe its that already. Weve known about his autism for 3 years now, half of his life. In fact its so the norm now I don't know what anything else is like. My friends little boy is 6 on Saturday and i had to ask her what to buy him as I have no idea what "normal" (sorry to use that word) 6 year old boys are into. Thats not good really is it having to ask that. Apparently Power Rangers, Max wouldn't know a power range if it smacked him in the face! Max loves Disney Pixar Cars right now, he is Lightening McQueen and I am Doc, and Kev is Mater. Gosh I'm rambling aren't I.

Working from home today, hoping it will be quieter as I am very tired, got a busy weekend on, so need to try and preserve some energy, so todays plan, work, cook big stew, throw some of Maxs old toys out, do a supermarket run after school, collapse in a shattererd heap as usual.

Listening to Will Young on the IPOD now whilst typing.

Upwards and onwards