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When the disability team screw up....
Comments
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I am so pleased to hear that it's beginning to progress for you and your son. Great news and you have done really well to get this far. Keep pushing and you'll get there.
I know your son and you will have a close and unique relationship and it's really scary letting others provide support for him, and you will grieve as it happens probably. But he has to learn how to tolerate this for him to have a fulfilling life and function at all in this world. you need the break so that you can enjoy times with him (rather than wondering how the hell you are going to survive the next 5 minutes, 1 hour etc etc) and it will be SO good for your health and therefore his.
I visited my son yesterday in his rented bungalow where he is the sole occupant. He has 2:1 support during his waking hours. He is SO happy with his own space, the peace and quiet and so proud of how independant he is becoming. When he lived at home we averaged 2 major incidents a day and countless minor ones. Now he is older, and in the right environment for him we have had minor incidents occasionally and 1 major incident in 4 months! It is hard accepting that I couldn't provide the right environment for him to be that happy at home, but he looks forward to seeing me, loves the time we have together and then happily waves me off so long as he knows when I am coming again.
I hope that you can end up in as good a place as we have and I know some of how you are feeling, so please accept my admiration and a big hug! We mothers of ASD sons and daughters with challenging behaviour are amazing people and have a strength that others should marvel at!'Do not follow where the path may lead. Go instead where there is no path and leave a trail. Only those who will risk going too far can possibly find out how far one can go.' T S Eliot0 -
A little update...ha!
Disability worker has now finshed the new assesment (yes,literally just!) and will be sending it out along with placement request forms shortly:rotfl:
More than two months since a possibility,the manager of the possible respite centre has now arranged to observe ds in school to consider whether he could attend.I have been told to keep my fingers crossed but not to get my hopes up as they usually turn down autistics with challenging behaviour (anyone got spare sedatives for wednesday?
)
I've also found a sports club for asd teens over the summer hols and provisionally booked ds in,but he would require extra staffing and given how slow the disability team are..
You wouldn't believe my son is funded under a wrap around package (an unusual one granted as i provide his care) given nobody does anything!!!!If women are birds and freedom is flight are trapped women Dodos?0 -
A little update...ha!
Disability worker has now finshed the new assesment (yes,literally just!) and will be sending it out along with placement request forms shortly:rotfl:
More than two months since a possibility,the manager of the possible respite centre has now arranged to observe ds in school to consider whether he could attend.I have been told to keep my fingers crossed but not to get my hopes up as they usually turn down autistics with challenging behaviour (anyone got spare sedatives for wednesday? )
I've also found a sports club for asd teens over the summer hols and provisionally booked ds in,but he would require extra staffing and given how slow the disability team are..
You wouldn't believe my son is funded under a wrap around package (an unusual one granted as i provide his care) given nobody does anything!!!!
Glad to see things moving forward and hopefully he'll get the placement and sports club too.
Didn't fully get "wrap around package" bit, btw is your son in adults services now?
time2saveTime to change for the better!
:):)
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Glad to see things moving forward and hopefully he'll get the placement and sports club too.
Didn't fully get "wrap around package" bit, btw is your son in adults services now?
time2save
No,he's still under childrens.
A wrap around package is a package for the most complex meaning that all services have a responsibility and the 'burden',as they put it,of the care and education,life skills,behaviour etc is shared among everyone and never to be left entirely to the carer because it's not possible for one person to be able to do everything for the present and future.So,they take responsibility and have to provide to ensure the best possible care and future and to prevent the carer being stranded and unable to cope.He has specialist education under it too.
On another note...
YAY!YAY!YAY!
Placement requests went out.Still waiting on the weekly overnights again BUT disability worker called this morning and has had interest from an agency to provide male workers to take ds to activities over school holidays,for 15 hours per week.So,he'll be able to go to the ASD sports club I booked in the summer
:j Now to decide on the rest! If women are birds and freedom is flight are trapped women Dodos?0 -
It sounds like things are going to plan..
I've only just started another journey with my asd lad of 18years who at the moment is stressed out beyond belief on medication which I am not sure is doing the trick and a female carer who is little older than him!! any tips0 -
I'm having similar problems with youngest shegirl but for me it is when the education system screws up!
The end result is an incredibly stressed and angry 15 year old complex autistic who has lost trust in the school, in education, in people, who cannot sleep, cannot learn and has regressed back to his own agenda and shutting himself off..it's been an absolute nightmare for the last 9 months and is only getting worse.
We reached crisis point earlier this week which resulted in a hospital trip after he had hurt himself...but still the school say that everything will magically be sorted in September.
Not sure what planet they are on but this is not going to be magically sorted by September unless they clone youngest and give him a new personality minus the ASD..oh and wipe out the last 9 months.:rotfl:We made it! All three boys have graduated, it's been hard work but it shows there is a possibility of a chance of normal (ish) life after a diagnosis (or two) of ASD. It's not been the easiest route but I am so glad I ignored everything and everyone and did my own therapies with them.
Eldests' EDS diagnosis 4.5.10, mine 13.1.11 eekk - now having fun and games as a wheelchair user.0 -
They do seem to expect magic fixes singlesue!Pure madness and they wonder why we get annoyed and forceful!
Well an update on the 'positives' that I needn't have bothered being positive about.
Total farce.
1. The other respite centre won't take him as they don't believe he'll fit.
2. The ASD sports club,two months after booking,phoned me last Friday to say 'after talking to the council we can't have him'.They then went on to say they don't take autistic who need additional help in school!!!I offered two support workers and still they say no!If they won't let him attend where else is he meant to join in activities?????
3. Three weeks ago someone from the care agency,that had said 'yes' to providing support workers for activities over the holidays,came with disability worker to get the info they need.Disability worker kept butting in,not letting me get a word in and gave the wrong impression and info.
4. Support workers met with his main assistant/teacher this week.They will phone me next week to make a 'first visit' appointment,then make plans then work on him trusting and getting to know them to take him out.THIS IS MEANT TO BE FOR THIS SUMMER HOLIDAY!!!!!We go on holiday for ten nights in 3 weeks and he's back in school the day after we come back.They'll never do it in time so no help at all.
5. Dumbass disability worker decides they're being slow so this week sent out requests to others...yeah I'm sure that would be quicker given the time *rolls eyes*
6.Disability team are saying respite,when they decide he's 'improved enough' (bloody joke),would be a service created for him-isolation from other kids.That is the opposite of what he needs and wants.
7. Disability workers New assessment was so wrong and full of unsubstantiated assumptions it went straight in the God damn bin!
8. A POSITIVE ONE!! New psych (well technically nurse specialist/clinical manager whatever and have known her before) came last week and....she knows it's all been got wrong,is referring ds for an advocate to help and suggesting a meeting where I can go and put idiots right.
To say I'm fed up,trying my damndest to hold onto myself and not lose it,and incredibly p!ssed off would be an understatement!If women are birds and freedom is flight are trapped women Dodos?0 -
soft_texture wrote: »I blaim the parents.
In your case I expect your right. Did yours not teach you it is spelt blame !!!!!0 -
soft_texture wrote: »I blaim the parents. must have crappy genes to crap such a retard.
btw, I come here for some advice and get ganged up on like cligly parents at the school gate, try and ban me with a dongle doucebags, they proucuse a diffrent IP address every time you switch them off and on.
I blame your parents too.
Luckily for me I have an amazing,beautiful son.
God knows what your poor parents did to deserve you
If women are birds and freedom is flight are trapped women Dodos?0 -
Already reported, ignore the pillock. School's back next week, they'll be kept busy after that.All shall be well, and all shall be well, and all manner of things shall be well.
Pedant alert - it's could have, not could of.0
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