What a fab night at the quiz last night - it was great fun - thanks all. That kept my mind off the cigs which was great. Went to bed tired and happy but the kids woke up continually from 1.00am with pains (due to muscle weakness) and Matthew was just not coping in his bed - wanted to go in my bed - so it was musical beds at 4.32am. So got about 3 hours sleep if that I recon.
Jessi (my little girl) kicked it all off nicely this morning with a raging tantrum as Matthew had moved something of hers - Autistic children cannot cope with certain things being moved it always has to stay the same. At that point I would have smoked 10 ciggies I recon - the stressometer was on high. Got them sorted in the end - had brekky and now feel like I'd like one but the crunchy feelings Buffy was talking about which were so strong an hour ago are easing a bit now. It didn't help that Hub said (when the kids were freaking) 'I can't cope with this this morning'). Considering he's away usually 12 - 14 hours a day, sometimes 6/7 days a week and I have to deal with it every day 365 days a year with no break, I told him to 'Shut up'. So he did.
Anyway just checking in. I'm doing a lot of making things with the kiddies today - cooking, painting, and am going on the PS with Matthew. Should be fun ....... but watch this space!!!!
Thanks to all = YOU'RE ALL DIAMONDS AND PEARLS!!!
Poppyfairyxxx (optomistic but nervous)
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My youngest has disabilities too and he never stays in his bed and gets in my bed continuously through the night, I am making a real effort to get him to stay in his bed but to no avail, takes around about three hours every night to get him to sleep, This morning we have had the upset of him not wanting to wear any clothes that fit because he has to have the label showing on his jeans, it is a big thing for him today and yesterday so we have had cloth changing repeatedly which lead him to wanting to tidy brothers new t shirt away, upset over the drawers not being right and him trying to make his bed, He came up to my bed with breakfast and then threw it all over the bed and thought it was hilarious, 5 and half years of this and five and a half years of trying to get him diagnosed
I know how you feel
There is me big secret let loose
Well, you would think you'd show a little bit of grattude when your kids bring you breakfast in bed hehehehehe
Diagnosis or no diagnosis, you know how he needs to be treated and loved. Only you can give him that.
Hope you get what you want for him sooner rather than laterer !!
Thanks for reply - I totally know what you mean. When you have kiddies with disibilities, particulalry mental ones like Autism, ADHD, it makes even the smallest things a huge trial. We have huge problems it feels in every area - either one or other can't cope. To leave the house and go out takes an hour of warnings and preparation and even then because the children have PDA as well, one of them usually turns around and says 'No I'm not going' - and it may be the hospital appointment you've waited 6 months for - and your head feels like it's going to explode!! With mine I have to remain soft voiced and calm all the time because they have severe sensory problems they can spot a change of tone of voice immediately and this will cause them to get worse - so even when my I'm stressed I have to be really calm on the outside.
The system in this country is a disgrace the way they are treating disabled children. By the time Matthew gets to go to school he will be 10 and been out three years - and I dread to think what the final tally in court fees for us taking the LEA to court will be.
You have done amazingly well to kick the smokes, be strong for so many others, and manage your own family life - I appreciate the support you have given me so much as I know how hard it is to get a moment of time on your own, and how stressful life can be.
Hey guys, I really feel for you, it must be realy hard sometimes. Makes me feel shameful as sometimes I think Theodore (my son) can be a real handful and we have a live in nanny to help out.
Hey guys, I really feel for you, it must be realy hard sometimes. Makes me feel shameful as sometimes I think Theodore (my son) can be a real handful and we have a live in nanny to help out.
What a lovely name!!! ooooh could your nanny pop round to poppys, boudees and mine
Thanks for a great night out/in - I had a grooooovy time. My hub nearly passed out in a faint that I went without watching BB to be with you guys - he kept shaking his head saying 'I don't believe it'!!!! (a bit Victor Meldrewey and a bit Danny Zucko (Grease) kind of laid back).
Thanks ever so for support. Theodore is a lovely lovely name for a boy. All I would say to anyone reading this if you are out in Tescos or anywhere and you see kiddies have wobblers please do not assume it is down to bad parenting as
A) All children at a young age have wobblers
B) The children may have disibilities and not be coping
Neither of mine cope in shops - Matthew has to have a full military type uniform on - Long Coat - Hood Up - Cap on - Peak Down - Collars Up - Sunglasses on - Earmuffs on - Game boy in hands - as he can't cope with looking at stranger faces at all - if he does he will scream Tescos down and we have a monster mammouth all earth consuming Tescos near us and the guy at check out number 85 heard Matthew down at checkout 4. I've had to have loads of Eastender Pub Moments over the years where people come and tell me what a bad mum I am, how dreadful my children are etc. Depending on the situation depends on if I will say something. At Tescos I usually do as so many people stop and listen to the person yelling at me - So I calmly tell them how dreadful it is to pick on disabled children (and Matthew is in a disabled buggy as well as he has leg probs) and they usually get very embarressed - as so does everyone else around- and then Matthew usually shouts out 'Yeah I've got Autism - what's your problem?' which is actually very funny.
Anyway FunkMunk have a great Saturday with your family - I'm off to make Chicken pie with Jessi - though we'll make it and she'll then say yuck wrong colour I bet you!!
What a lovely name!!! ooooh could your nanny pop round to poppys, boudees and mine
Thanks, I initially wanted to name him River but we came to a comprimise and namned him Theodore River, I sure I can arrange for Sarah (nanny) to call round and help you all out
Thanks for a great night out/in - I had a grooooovy time. My hub nearly passed out in a faint that I went without watching BB to be with you guys - he kept shaking his head saying 'I don't believe it'!!!! (a bit Victor Meldrewey and a bit Danny Zucko (Grease) kind of laid back).
Thanks ever so for support. Theodore is a lovely lovely name for a boy. All I would say to anyone reading this if you are out in Tescos or anywhere and you see kiddies have wobblers please do not assume it is down to bad parenting as
A) All children at a young age have wobblers
B) The children may have disibilities and not be coping
Neither of mine cope in shops - Matthew has to have a full military type uniform on - Long Coat - Hood Up - Cap on - Peak Down - Collars Up - Sunglasses on - Earmuffs on - Game boy in hands - as he can't cope with looking at stranger faces at all - if he does he will scream Tescos down and we have a monster mammouth all earth consuming Tescos near us and the guy at check out number 85 heard Matthew down at checkout 4. I've had to have loads of Eastender Pub Moments over the years where people come and tell me what a bad mum I am, how dreadful my children are etc. Depending on the situation depends on if I will say something. At Tescos I usually do as so many people stop and listen to the person yelling at me - So I calmly tell them how dreadful it is to pick on disabled children (and Matthew is in a disabled buggy as well as he has leg probs) and they usually get very embarressed - as so does everyone else around- and then Matthew usually shouts out 'Yeah I've got Autism - what's your problem?' which is actually very funny.
Anyway FunkMunk have a great Saturday with your family - I'm off to make Chicken pie with Jessi - though we'll make it and she'll then say yuck wrong colour I bet you!!
Big Hugs
Poppyfairyxx
Hey Poppyfairy.
I complertely understand, I really do My throw wobblers and tuns into a wild man when he cant get his own way, its just a phase of growing up.
I completely admire you Poppyfairy, you have my utmost respect and admiration, and I think you should change your name to supermum
I know 3 river's and not 1 Theodore! yet it's a more traditional name!!
funny that :rolleyes:
Look forward to seeing a bedragled Sarah when she reaches me
It is strange, one of my favourtie names is Montgomery, but my other half was having none of it.
My partner is a film producer and works all over the world so having a nanny is a great help, Ssometimes she can be away for 2-3 months at a time so it can be difficult especially as I work too. But my situation is minor and I respect everyone else who has children with disabilities as I know it must by very difficult somtimes but always very rewarding
Montgomery is cool - would it have been shortened to Monty? I like Raphael (it is the name of an angel). I have a thing about angels - Hubby was unsure so went for 'acceptable' first names and Jessi is - Jessica Amy Angel and Matthew is Matthew Marcus Gabrial - so I got angels in both see. I liked Ocean but it was rejected. My Hub, being a Chef wanted Corriander which I thought would drive the poor child mad everytime Gordon Ramsey or Jamie said 'Add a pinch of corriander'.
All families are different and have unique dynamics. The main thing is that it is filled with love and happiness as much as possible. You have a tough situation - seperation from loved ones is never easy but I'm sure you really value and enjoy the time you have together.
I would never change my children as they wouldn't be my children anymore and I loves them to bits - just as they are. Sounds like you're a very proud Daddy and a good one - lucky Theodore.
Off to make butterfly cakes now so getting prepared for more mixture on the floor than in the tins!
Listen Honey do not stop fighting the system - be it health, education or social services.
It was obvious from when Matthew was born he had problems. At 2 he had no language - just a lot of violence and lined up cars/trains all the times and rocked back and forwards (still does) and toe walked. Saw various bods from the health/education departments - most said suspected Autism but had to see the bigwig for a diagnosis - he took one look at Matthew who still had no speech etc. and said 'There is nothing wrong with your child and you don't need a diagnosis'. Hub and I didn't speak for 30 mins when we got in the car as we were so shocked. Anyway went straight to GP to ask for a referral to the Elizabeth Newson Centre for second oppinion. Went there and within 2 hours Matthew was diagnosed by one of the top Autistic spe******ts in the Country. The PDA, Dyslexia, Dysgraphia and Phonological Deafness came a year later. I can give you his name if you want - he is brilliant. Ask for a second oppinion from your GP. Our CAMHS is totally hopeless - I'm in a fight with them at the moment as matthew was meant to have an appointment 10 months ago but never got one and his gp, consultant and I have written and called to find out what is going on - he needs to see a psychiatrist as he now has mental health problems - depression. I've got a lot of contacts, numbers, info etc. - loads and files of the stuff so if you want anything at all just ask honestly I'd be really happy to help. United we can fight and beat the nonsense that is the system for disabled children.
Loads of hugs
Poppyfairyxxx (give me a banner, a tree and a megaphone and I'll be there)
Montgomery is cool - would it have been shortened to Monty? I like Raphael (it is the name of an angel). I have a thing about angels - Hubby was unsure so went for 'acceptable' first names and Jessi is - Jessica Amy Angel and Matthew is Matthew Marcus Gabrial - so I got angels in both see. I liked Ocean but it was rejected. My Hub, being a Chef wanted Corriander which I thought would drive the poor child mad everytime Gordon Ramsey or Jamie said 'Add a pinch of corriander'.
All families are different and have unique dynamics. The main thing is that it is filled with love and happiness as much as possible. You have a tough situation - seperation from loved ones is never easy but I'm sure you really value and enjoy the time you have together.
I would never change my children as they wouldn't be my children anymore and I loves them to bits - just as they are. Sounds like you're a very proud Daddy and a good one - lucky Theodore.
Off to make butterfly cakes now so getting prepared for more mixture on the floor than in the tins!
Poppyfairyxx
Your children have beautiful names. I especially like Gabrial, and Ocean is a lovely name. Not to sure about corriander though hope you all had a nice weekend
Do you recon kiddies will start getting called names of objects soon i.e. TV or Phone, or Window?? I was told many years ago by my grandmother when she was alive I was a millimetre from being called Gay Dawn Tucker (now the tucker lets be imaginative and think what did I get called at school erm..................) What a combination. It's a bit like meet the Fockers!!!
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day two - going insane
day 12-that's nearly two weeks!!!well done guys!!
