It’s proving extremely difficult to book special assistance with @TUIUK and @SunExpress who seem to be incapable of working together to book people’s holidays. Constant going around in circles. Looks like I’ll be sitting separately from my disabled son
Some autistic people are non verbal, Non verbal absolutely does not mean non intelligent. It also doesn't mean they can't hear every single word you are saying.
Sean, a teacher and one of our hosts described his typical day:
“get up 5am
Out of shower 5.30
Get breakfast and talk to partner about the day ahead (also a teacher)
Leave for work at 6.45
Arrive 7.10
Photocopying, all retrieval tasks prepared, hole punched, place in rooms where I am on the different sites, lessons in correct folders
Then briefings on Mondays/Thursdays
Then teaching
20 min break and 30 min lunch - if I don’t have a free, I am left with about an hour to do other stuff I need to do
Adding behaviour points on SIMs, interventions after school, twilights.
Time disappears into the ether - you still have loads to do when you get home!
I leave school 4.30-5pm
25 mins drive - only time I don’t think about school
5pm onwards - life stuff! I have 4 kids, cleaning, dinner etc
6.30pm dinner
7.15pm into office and work to around 10pm unless mock exams etc and then sometimes later to 11pm”
Sean describes his typical working day! Listen here - https://t.co/Q1h6jZtkjT
The biggest fear I have as a parent of a autistic child with learning disabilities is who will fight for my son when I'm gone. The world we live in can be very cruel, very unforgiving, who fights for our children when we can't.
So this is Jaxon he will be 8 in October- Jaxon as spina bifida & hydrocephalus he as hyper mobility in his hands wrist elbows & shoulder he also as speech delay and other conditions- Jaxon can not use his hands like most so can not write and needs help with things like feeding - he’s a lovely little boy who loves life - as a mother I’ve done everything I can to fight for what he needs such as services & vital equipment but unfortunately this comes at a price of facing threats and bullying from some nhs staff in wales - he’s had very little if any physio for years - and OT services have neglected his needs - they refused him a specialist bed left him in a travel cot till the age of 7 I then got a bed by setting up a go fund me - we’ve been refused stair lifts and many items even in school other professionals requested a seat so he can sit on the floor with friends at school but unfortunately school was told by the nhs prop him up against a old radiator mind knowing he can not sit up without support- in lockdown a charity offered to help with a iPad but OT services refused to sign for it stating they couldn’t justify it - we’ve been refused so much for this little boy and faced poor services some of which they’ve admitted yet @OmbudsmanWales refused to investigate it and as you can see @HIW_Wales as refused again @WelshGovernment send me down the complaints procedure knowing I’ll get threatened and knowing they never do anything- jaxon deserve better my family deserves but unfortunately this is what’s allowed to happen- as a parent with disabled children all I want is what’s best - thank you for reading and please share so everyone can see how bad cwm taf health board are along with me having a recording of a chief executive stating their doctor was influenced to bully me - Jaxon deserves better my family deserves better
A uk carer gets £3.624.40 a year, if you can claim it ,if you get to keep it think about that, less than 4 thousand a year for being a carer that often works around the clock, doesn't get time off , no clocking out as you are always on duty, Easter, Christmas , Bank Holidays....always on duty , often forgotten, always caring for their loved ones.
You've been up 16/20 hours you've cared for your child,you've attended interviews,filled out forms ,sang their favourite song so many time you are hoarse, then you can finally go to bed but you can't sleep because you lie their worrying who will care for them when you are gone.
@flybe Hi, I am trying to check availability on a flight departing from Amsterdam this evening but the online booking system won’t let me input anything? Are you able to assist?
I just learned that the Māori word for autism is takiwatanga, ‘in his/her own time and space’. It’s such an empathic and gentle way to describe the condition I’m trying to come to terms with.