what a day....

Oh my! What a day... Spending most of it in bed with a migraine.... Whilst I was meant to be doing a table top sale with my lovely friend steph. Hence the sleeping all aft, im wide awake now! So much to do & so little time!.....
On a positive note I designed myself a profile pic ready for aprils autism awareness campaign.... In doing so a few other asked if they could have them! Im proud to say they are now scattered as far a Australia, America, Japan and England! I've sent masses out! :-)
I've also met some lovely people tonight.... Both on fb & blogs..... I know that together we can share and promote awareness of the awful disability we are consumed by. Xx

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Busy week ahead......

This is a super busy week ahead.... Monday is the second of a 4 session course run in conjunction with Early Support. The sessions themselves are run by parents, with group participation. A chance to share info,links and gain knowledge of an entirely different world than the ones expected initially. Chris heads the sessions, informally with passion.It's nice to see a daddy expressing,sharing thoughts, feelings ideas! Im sure Oliver was pleased to see him on the first session!. The boys are looked after by the action for children ladies in a room nearby, they loved it last time :-)
Tuesday is the first of the Makaton training sessions run by Marie ( James' teacher at the willoughby). Although I have thrown myself into signing, ( harry being proof of this now he signs!) theres always more to learn! Good ole Mr Tumble showed me the sign of a leaf the other day on his show..... How im going to fit this into a conversation with someone yet... I dont know! Lol

Wednesday being last day to finish house ready for Thursday! Loading the van will no doubt lead to lots of swearing and me just getting in the way!.... There has been so much preparation to this move. Thinking of James every step of the way being at the forefront of mind!
Our really lovely kind friend Sue is looking after the boys on the big day, we've spent a few weeks visiting her home, showing photos etc. I dont think people realise how much Autism changes your life almost completely, nothing is as easy anymore as just getting in the car and going..... The whole day is planned with precision.... What shops to steer clear of etc.... But I wouldn't have it any other way, it's what makes James what he is.... And I for one have learnt & shared so much in the last year....... X

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James & harry enjoying some march sunshine!

This is the first time James has interacted with the same toy as harry at the same time. An emotional moment for me!

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New Home.........

As from Thursday.. no longer will we live here at Tunnel Bank.... We've had some fab times here.. its a lovely place to live but with the oil being stolen twice and living in a big ole drafty house.. the elec bill has been HUGE!!!!
So we're off to a 4 bed, with central heating.. woop woop....... James & Harry will have their own rooms.. hoping to get a little more sleep this way, currently they wake each other up constantly.. James has never been a good sleeper, he wakes several times a night.... gets up, sleep walks wonders about.. and Harry. well Harry just wants mummy  and Boobie...... Harry will be going into a cot for the first time in his life.... OMG.. we have ordered a motion sensor ed mattress.. it will vibrate ever time Harry wakes..... He's too old now for me to feed him constantly and its not for milk its for comfort.. oh my poor boobies! ;)
So a new start.. James cant escape from the garden... ( he could here after the sugar beet lorry removed the fence one day to my disgust.. it followed him as he drove off.... unaware... MMMMMMM

.. so the house is packed up and ready to go, pictures have been made of the new house and shown james.. he's been to look round a couple of times too......
what fun it will be.... ( maybe not on thursday though.. when im highly stressed! lol )
xx

New Blog

Hi evereybody, I've decided to swap my blog from one place to another.I have copied all my previous blogs over....hope you continue to follow. Posts have been a bit sporadic but theis new way of blogging will make me blog more. You are either thinking "Great she is going to blog more" or "Oh good god not more blogging" lol. Please sign up to the new blog.

Much love
 Annie

Hello.. and welcome to the newbies

Hello.. and welcome to the newbies

Posted by Annie on February 10, 2011 at 11:19 PM

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Hi everybody.. how are you all? and a BIG welcome to all the newbies that have joined... remember.. I want you all to join in.. whether you have a child on the spectrum or not.......
Been a funny old week.. what with having our bloody oil stolen again.... visits from different people.. saying different stuff and finally I've nearly finished that bloody DLA form... nearly....... lol

all written in rough .. on part 12 in 'neat' so only 476574676 parts to go!

James has had a good week... we've met a lovely lady who came round to the house with our FAB portage lady ( caroline)... Dee knows lots about lots and was really helpful in answering some of those little niggles that i wanted to ask......

We've decided to buy james some ear defenders.... not to wear all the time , but to wear  when in loud places... and where children go 'ROOOOAAAARRRRRRRR'. it terrifies him.... now just to work out a way to get them on his head and keep them there... Little harry loveds them.. so in fcat we are using him to wear them.... i know for sure if harry has them james will want them!
can but try.

WE have decided to let Maisy move on to a new home, James has decided, he no longer likes her, which is such a shame as most of you know we had great hopes for her.. esp when we first got her he slowed down his sppinning.. and even started to abble to her.. but now he cries when shes in the room........ like i said such a sh=ame.. but it looks like she is possibly going toa super home <3


trying to think what else ive got to tell you all..... urmmmmmm...
sleep has been awful this week.. with some nights not going to bed at all.. or just as we got to bed ( about 1.30... its the only way we get to have a conversation) james wakes up and then is up till about 7 am.. followed by just two hrs sleep...... we stay in his room and pretend to be asleep... but OMG how can anyone sleep with some jumping on you, biting you, head butting you.... so lets just say sleep has been on the rare side this week!

No words from james this week... that 'bye bye' and wave from james a couple of weeks ago.. never came again.. doesnt mean to say it wont( ever hopeful) .... sadly we've had a few swear words from him... but hey I wont be bragging about those ones! LOL

Watched autismfile on TV tonight and will now be cleaning the bath with a grapefruit and salt! will cetainly give it a try.....

have met some super people lately and I'm really thank ful for that... some great advice and some I'd like to think advice given abck

but for now.. I'm off... off to finish reading my book @the real boy' or something like that... so far nearly every page I've felt like I'm reading our life.. and im sure others have too.......

Night night peeps... until anoter day.. xxx

James' Letter came Through

James' Letter came Through

Posted by Annie on December 31, 2010 at 1:18 PM

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James' letter has come through the door today ... from his assesment.. we knew what it would say but when you read that someone else has written... ' he is less socailly interctive' ' much worse then when I last saw him' it make s me cry... we live with him but when we are taken out of our comfort zones it always leaps out at you whats happening.....
Iguess very much the same as James. whilst we're here at home we are all content... when we d something differnt it's hard work and sometimes awful.. and maybe even sometimes impossible.
saying that we went to the seaside.... it was freezing cold but thought it would be a nice change and not many people about..... fun was had by all i think even harry who was made to sit in the pushchair the entire time... i knew too much sand would be eaten otherwise!! lol

James seemed content to stand at look at the sea for long periods of time but arent we all...... te only difference.. when the sea came up to his toes and beyond he didnt run out the way.. in fact just walked further into it... so with 8 very wet feet ( james' Tom's Jack's & Oliver's) we headed to some shops...... XXXXX 'STOP... not that shop' we shouted as we headed inside and jaes started to protest...... 'too much colour' too crowded'... so quickly we have learnt with shops are 'ok' to go into and others that are a complete no no.

i like to think of it a as a way of james trying to make me spend no money.. these full bright, cluttered shops are full of crap I dont need anyway! LOL so in essence I thank you James!

It's New Years Eve........ Harry's first birthday tomorrow , to which we wil have a little cake I cant beleive how much has happend in the last year..... and poor little Harry sometimes gets almost forgotten about.. James is constant appoinments and the ways in which we have changed our lives has a huge impact on him.  So this year when we Start Team James, Harry will be able to have much more interaction with other children that will surround him.....

I thank each and every one of you that has supported us this year, in what looking back has been scary, fun, tearful, some wonderful times with the fete and some terrible low times with some friends.

Here's to a better year.. a positive year, a HAPPY NEW YEAR

Much love to all xxxx ♥

:)

:)

Posted by Annie on December 22, 2010 at 11:21 PM

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Hello!

I'm back
So much has happened over the last few weeks....
Lots of fanastic stuff and some sad stuff too......
Fantastic stuff would be: Team James. as some of you know Oliver and I decided... there just sint anywhere local where we can take James and Harry where we feel comfortable when he kicks off or does his different behaviour.... so we have turn the playroom into a fab one... with a little help from our friends have got some great toys to constantly change them round, so James doesnt get stuck on certain things.... we're just about to do the flooring... its a foam floor so when he head bangs etc he cant hurt himself ethier.
We decided to open the playroom to other parents that would like to bring their children too.... they dont need to have special needs of any kind to come.. and can bring their siblings too..... esp in the summer where we have lots of outdoor space to play safely.
Team James so far in just a month has raised £480.
We did The stamford Santa Fun Run, had a childrens Christmas Party held at Rascals in Stamford too... as well as others doing their own fundraising. That amount is AMAZING.

On wednesday starting in Jan , we open our house ....... a chance for parents to come and feel supported... talk.. cry... and share stories about anything...... we all have the same hopes and fears for our children, and sometimes talking to someone differnt helps.

We want to be able to help those who see a certain toy maybe that they feel will help their child in development and be able to purchase them it, we want to be able to say ' lets all go on a trip out' maybe to a zoo or the seaside. But go as a group.... supporting each other.... .
and that what Team James is all about.. being a Team.

Have lots of ideas... you know me my brain never stops!!!


Sad bits:

James has had his 3rd assement. The Dr feels he is worse. his spinning around and his constant mmmmmmm'ing  is getting louder, his lining up of items is crazy.... although his eye contact is more . she feels it's because he sees people as objects rather than people
he comes and kisses people now but again thats because he gets the same reaction every time ( joy) it's called Cause for Reaction. He does the same thing with Harry... he pushs him onto the floor.. Harry crys.. James loves it. not in a nasty way... its the cause for reaction. Harry will cry every time with out fail.

James ' biting has become much worse.. so much so that he now has  a cloth hanging from his clothes... when he needs to bite theres always something on hand...... he looks like a mini gangster with it hanging off his trousers! LOL

You know what ..... some of the hardest things are these.... when we go out and james gets excited he hand flaps.. people look at him oddly.... Harry although 1 year younger  is probably now beyond James in his development. Harry has picked up makaton signing.. James still does not look.
and to think that a year ago.... there were just a couple of indicatons of different patterns... we have lost so much of him in the last 9 months...... my fear is that while he's still so little the true colours of his Autism havent shown them selves yet and he slips even further away..... if thats possible.

breaks both our hearts .
we love him dearly no matter what.. but that dream of having two babies so close together and having fun, playing, going motorcrossing.. and all the dad stuff they should do probably wont happen now as a family.
the trip to the seaside, the picnic.... James is a wonderer..... we can be in the middle of a field and he just starts walking off... of course you call him.. but he does not respond.. of course you go and get him , but you put him down and he's gone again...off on the same route.. we could do this fifty times.... its so draining.
I tell you I'm sure people think ' they've got no control'.. and you knw what we havent when we are somewhere differnt. he ethier lies on the floor face down or  is off on a wonder..... whilst he's so little we can get away with it i guess but as he gets older its going to get harder. but we know that and will just get on with it.

God I love all my children so much xx

It's been so long!

It's been so long!

Posted by Annie on December 22, 2010 at 5:10 PM

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Gosh!! It's been so long, so much has been happening.. but now Im back! and hopefully a few newbies will join us too.... and dont forget  you can always post too....
this is a relatively new site and I encourage you to join in.

Right now I'm just dropping by to say hello..... so much to write and so little time, so i'll be back later with a proper update of my rambling thoughts.......

Incase you didnt know Team James is going really well... over whelmed with the support really! and we have started an event on FB of Autism and ADHD awarenes... crazy to see people changing their status'..... if we can make just a few people think twice about the typical thoughts then thats a start.


love to you.. remeber PM if you'd like or add me on FB... or add Oliver

I'll be back   xx

Positive things....

Positive things....

Posted by Annie on October 31, 2010 at 3:34 PM

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As most of you know I'm not one to be negative... and I was thinking... be positive.....
Lots has happened over this last week regarding others aswell as our normal pretty crappy (at times) life.
My dear Friend, Lost her son.. he was diabetic, young ( early twenty's) and cleary a well loved young man by all those who new him.. ( his facebook wall is full of great words ), a few other people mailed me to say they were fed up about their problems too..... then I thought......

Team James~  we need to raise some money to get a few things to make our playroom safe... different flooring etc so James doesnt hurt himself so much when head banging in a meltdown moment.. and to save poor little harry's head to when he's pushed to the ground... some certain toys to build on james' imagination... learning makaton ( expensive gig that is! ) amongst other things... some will say ' well pay for it' then and i can see where they are coming from... BUT having a child that needs extra support in anyway.. is lets say HARD..... bloody hard in fact.... we run our own business from home, so both of us can be here... I could certainly not cope alone everyday with the two of them, James needs constant supervision.. he gets him self into danger too quickly to be left for a second.
A friend of mine suggested we try to fundraise and all though at first i was a little embarassed about it.. I then thought.... we could do this for James and potherc hildren in the same boat.. they wouldnt have to have ASD.. they might be ADHD, be poorly with cancer , diabetic... anything really.......
We want to help those children too....... we can all apply for grants at some stage and all truely thank ful for them.... but if you have had no Diagnosis this is hard.... Now I'm not saying we can provide every body with something and of course depending on how much we can raise on a on going basis, we would certainly be hoping to offer that support.. It maybe a certain toy that my be benefical.........
As some of you might remeber some of our lovely friends donated £100 to us... and i was overwhelmed..... that was before Team James had even started!! so as more people say they would like to do a fundraiser we though we had better do one too...... So.. ALL of us will be entering the Santa Fun run... Dressed as Santa!! LMAO!! I am the unfittest person about, but will succeed........ People will be able to sponsor us via our website, and I am really hoping some friends come and support us & join in to.... and hopefully get sponsored for doing it.
Talking of support... we both want to be able to reach out to those that have been going through the same emtional stuff as us.. the questions ( of which there are no answers)  So would like to again, reach out to those with specail needs... parents carers etc... smeone to share their problems with... and problem shared is a problem halved is SO TRUE.

Now at this point I MUST POINT out........ WE ARE NOT A CHARITY but RAISING FUNDS FOR A GOOD CAUSE'
we would like to eventually become a  little charity though. ( that was my legal bit)

I have met some wonderful people during our process of our life changing . I wonder how many people are out there are waiting for someone to come along and say' hey you ok?' remember not everyone is as forward as me!

So if you read this... why not share it with a friend, it doesnt matter where in the world you are .... support can be just as effective via email, telephone, The Web......
This isnt just about me .. my emotions anymore.. this is about making some magic in lives that need it..... even if just a sprinkle..........

continued from earlier....

continued from earlier....

Posted by Annie on October 22, 2010 at 11:33 AM

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Right I'm back. Writing this whilst I feed Harry and James draws on the Walls ...... He isn't currently but I'm sure it won't be long....... How many times I shout PAPER!  God only knows. It's so hard having someone that doesn't respond to anything you say.... Getting james in engagement is a task in it's self.
Last night when he woke screaming ( after falling asleep at 10 , waking at 11.30) he laid in the dark for about an hr doing weird stuff with his hands in front of his face., followed by screaming... A scared screaming , Harry was up, Oliver was up, Tom was probably up but decided to stay in his room! So I made tea and toast at 1.30 this morning and sat and watched the teletubbirs etc till 6am. It's the only way to break the cycle of screaming otherthan going for a drive. And sometimes poor Oliver just can't face going for an hrs drive in the middle of the night.

(James has just fallen off the settee flat on his face.... Walked off.... I want him to cry and come for a cuddle.... I worry about his pain threshold )

Anyway, shoul have known what would occur last night as I took both James and Harry out yesterday with my lovely friend steph. Lovely day bit the backlash always spoils everything we do
We attempted to look round some shops. To start with a toy shop.... You would think he would love that, but instead cries. Too much going on in there I think, too many colours surrounding him. Steph made a sharp exit with him whilst Harry and I had a quick look round. ( we have separate pushchairs, James doesn't like the close contact of a double)

I feel for little Harry, he just wants to play, follow James around ..... The opposite happens, if we're not careful and Harry gets pushed to the ground with force

I just thought... Everything sounds like I'm moaning all the time I don't mean it to sound lik that
I just cant think of many great things lately.
I want to see my friends, go out. Go shopping, go for a meal with Oliver somewhere... All of which are near impossible. Everyday I wake up my first thoughts are 'what will today bring'

Happy things I hope today.....

one i found but didnt post

one i found but didnt post

Posted by Annie on October 22, 2010 at 11:32 AM

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something i wrote the other day......
As I write this I want you to know it's 3.30am, currently in bed with Harry .
That's how I started my nights sleep... At 11.30 in bed with Harry, at 1.30 in bed with James. At 1.45 back in bed with Harry, 2.30 lying on the floor with James till 3.20 jump in bed with Oliver for all of 10 mins before Harry turns over thinks 'christ where's my mummy' and shouts for me.
As it happens I'm now downstairs with a wide awake Harry who just had the worst nappy in the world to change, let alone at 4.15 am!
Anyway this week has been full of ups and downs!  Trantruns like I've never seen before, lasting hrs at a time till the early hrs of the morning.... What a drain they are..... Thank god for Oliver and his patience , if after about 4 hrs Oliver will take james out in the car.
I wish James wouldn't smash his head against the floor, or throw it back the way he does. Honestly he'd break your nose with one of the throw backs he does, one day I just know I'm not going to be fast enough in dodging it!
He had also taken to not letting people sit down, at first it was just moving me out the room and clearly a sign that he wants to be alone. But now he's taken doing it to visitors !
So we're trying a new tactic....... Don't move even when being pushed until it becomes painful!

:)

:)

Posted by Annie on October 22, 2010 at 10:42 AM

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right, a quickie...
OMG what a fortnight.. ups and downs almighty...


 some positive things though with James coming to kiss me.. and we even ventured out.. YES i know I cant beleive it ethier!! we took them to the east of england show... james sat in his pushchair whilst harry happily looked about in wonder....
that really saddens me.....

but when we came across the sheep james was a differnt children... WOW the sheep made him come alive.. it was crazy! I wanted to stay in with the sheep all day!! ( oliver said we're NOT allowed to have one in the garden! ) LOL


the backlash of going out though loomed over us.. and as predicted happened.....
 sleepless nights of trantrums is so very hard when harry wants breast feeding all night and tom of course has to get up for school.........

we can deal with being up all night, its just the voilent screams and behaviour that i dont like.... Oliver is so good and saying right... Ill take him out in the car'


screaming is taking place... I'll be back......