Wednesday 29 April 2009

caught up....

completed my two quarterly returns Sept to Dec and Jan to March, for the direct payments for Ix's carers; yeh...

took a few goes to get it all to add up but did it. it always seems a daunting task but isn't once you get down to it...

phew...one less thing on the list.

tomorrow have to ring to confirm L's tooth extraction operation for 13 May.....

and do the gluten free food prescription ...

and more importantly, do the passport info for our ryanair flights to Spain - to stay with friend - in August. It did start off at £0.99 per ticket but add in taxes, luggage bla bla bla and it all adds up. but will be fun.

Sunday 26 April 2009

...and Rome....



intense planning paid off:

packing done, picked up Ix from playscheme central London and up towards M25 to drop off at respite; drive back to leave car, pick up luggage. train to Gatwick; plenty of time for eating...plane then taxi organized by hotel, who had emailed to ask if I needed it. not cheapest way but needs must on a late flight...

so a late night but ready and eager the next day for sightseeing, meeting up with Sister and BIL in the morning. who had travelled by train via France to save the environment...

L studied Romans last term so was excited.

G age six was happppy to wander, see, too.

coloseo fun for all...



G particularly liked walking on the "big cockle stones" - "can we go again please?"




and the "mouth of truth" was a big hit



you cannot beat Italian gelati:




we climbed many steps... the Spanish ones of course





and spent time in the park, including on hire bikes





It was a great trip - the Sunday we got up, had breakfast, packed, paid, took train to airport - just missed one train and got stuck in security queues but boarded flight just in time.

arrived back - Ix had been picked up by his carer and was absolutely fine.

could we have done Rome with him?

yes - with a carer in tow, with plenty of downtime with DVD, computer, wholly organized, less "oh let's go this way...".

but ultimately, his needs are different and it is OK to spend time differently - and with the other two. who also need some "attention".

While he was well cared for and happpy in his own room at respite residence, and with a routine he knows well.

"I went to bed at respite" he told me proudly on his computer when we were all back and ready for bed at home again.

It is all about creating memories, good memories, good times...

they were the best of travelling companions, with each other, with me.

will do it again sometime!

next holidays will be with Ix, based around his needs as well as the girls; but the way is open to take advantage of the residential respite and go on many more mini-adventures...

catch up quack

London duck tour - early April.

with medical students who take Ix out, part of a wonderful programme which will help future doctors become more aware of disabilities.



G was out with friends for the day so went with L and Ix, students and their partners...

London views



After, Macdonalds then wander down southbank, meeting weird and wonderful people en route:






and the clear favourite:




seems we will HAVE to go to Eurodisney soon...

catching up with myself...

behind ...need to get quarterly direct payments returns done by end April... is an hour or so but a clear hour sat with the paperwork...impossible!

aargh....

not sure where time goes, but have been pottering in garden, making most of sun! planitng potato tubers with girls, out and about....

and the children had first supervised contact session with their dad saturday, which seemed to go ok.

so there was two hours free for ME...- hmmm - paperwork - or quick look round primark, poundland and a cappuccino in nice cafe?

is a no-brainer...

Monday 13 April 2009

"I went to bed at the night"

early in the morning...dragged to lounge, put on CBEEBIES.

turn on Ix's communication device - he always asks for it first thing.

begin usual conversation -

"aunty M has a purple car nissan micra"

"go to school on monday"

"Sunday go visit friends"

"let's go to P's house"

"peter lost his rabbit horrid henry took it"

lots of autistic scripts...some predictive typing, some set stored phrases.

"may I have some crunchy nut cornflakes please"


then i go to make my tea, he sits on floor near tv to watch "mama mirabelles home movies adventures" on CBEEBIES, eating his (dry) cornflakes.

they are talking about nocturnal creatures who sleep in the day; and those creatures who sleep in the night. the owl sleeps in the day. the tiger sleeps at night...

he types...

brings to me:

"I went to bed at the night"

with predictive he has actually typed "I we.. to be.. at th. ni..." but he has chosen the words...

a near perfect sentence, topical, a comment

very proud :)

Friday 10 April 2009

craving....



a child who wakes at 6 a.m. and is just about persuaded to stay in bed til 7.30 as is holidays...

routinely wakes at 7.00 a.m. latest 7.30 a.m. - is a good alarm clock - but on weekends: 6.00 a.m. why?

get up, put on CBEEBIES, put food....slump on sofa, close eyes...

never sleeps in on a weekend. maybe when he really becomes a teenager?

so yes i should go to bed earlier but need some "me time" too....aaarghzzzzzzzzzzzzzzzzzzzzzz