When the disability team screw up....

shegirl

princessdon wrote: »

Shegirl - Do you have a friend you can call and ask for help? I know people don't like asking but people will often help even if just for 1 night or a few hours.

I know I have mentioned before that I run a surfing club for Severe Autism, where we have 2 or 3 to 1 as a ratio for youngsters. It means they get to surf, the volunteers get a lot out of it and the parents get a few hours at the weekend.

It would have been around this time last year I was dropping off the new medical forms (we don't operate during the poor weather for obvious reasons) and one of the parents was utterly exhausted when I dropped the forms off. Like you seem now, she was as my gran says "living on her uppers", to the point of drain. After a chat (her respite had been stopped too), I arranged for myself and his favourite surfing bud - my 23 year old nephew to cover the whole of the weekend in her house, as it had been a while since he had seen us therefore taking him from his evironment at that point wouldn't have worked.

Just a night with sleep meant the difference. We then had him overnight every now and then when things got tough, luckily he is now back with regular overnight and holiday care. I wouldn't have known if I hadn't dropped the forms off and she said she felt bad asking for help.

Do you have anyone you can call on? Even if they need to sleep on a floor at yours for a night or two?

Nope ds doesn't tolerate people in the house so friends don't visit properly while he's home.So,he'd hate it,they wouldn't know what to do (and may possibly be hurt),and they have their own kids to look after.I couldn't ask them to do that.

princessdon

shegirl wrote: »

Nope ds doesn't tolerate people in the house so friends don't visit properly while he's home.So,he'd hate it,they wouldn't know what to do (and may possibly be hurt),and they have their own kids to look after.I couldn't ask them to do that.

It was worth a suggestion just in case it was you feeling like you couldn't ask - as opposed to circumstances.

I guess it's easier for me as both my hubby, nephew and myself are respite trained specialising in ASD and Learning Difficulties, so you sometimes forget that people don't feel comfortable asking people who are not used to meltdowns.

I really hope you get this resolved soon as it can't be good for either of you.

Confuseddot

Really hope you get some respite soon. Thinking of you and wish there was more I could doto help.

shegirl

Well,they've started the new assesment they have to do to get the funding (taken their time,haven't they!). Worker came round to start it last week-2 hours of asking/giving details of our day,what ds does and when and what I have to do.That's 2 hours of my life I'll never get back!!!Fair enough,they're finally starting to move their backsides (well,dragging) but I could've written it out in ten minutes.Ho hum:rotfl:

She has said she'll be in touch soon to get more of it done for the paperwork.No idea when.She has offered for them to pay for the cleaner I have employed,for a couple of weeks as their temporary way of assisting.

They are constantly being hounded,including by ds psychologist and psychiatrist.Both of whom have repeatedly told them it is unacceptable.

They are informing them of any difficulties at present so there is a record of them being useless.They even insisted on informing them I am not well (horrid fluey thing and infection past one and a half weeks.Shattered!) because they want it on record that SS say ds is too complex for teams of professionals yet think it's fine for me to be alone and ill...

Aside from that,I'm enjoying my cleaner lol

SEE

shegirl wrote: »

Nope ds doesn't tolerate people in the house so friends don't visit properly while he's home.So,he'd hate it,they wouldn't know what to do (and may possibly be hurt),and they have their own kids to look after.I couldn't ask them to do that.

Shegirl, you would not like to know the life story of myself and my autistic son, but be careful what you ask for, or decide that you need.

I say this because if you push to hard they actually section them when they come of age and they NEVER come home again. They will even alter their mental capacity illegally to ensure it.

I personally will never forgive myself for asking for help. It destroyed my sons and my life.

SEE

shegirl wrote: »

Well,they've started the new assesment they have to do to get the funding (taken their time,haven't they!). Worker came round to start it last week-2 hours of asking/giving details of our day,what ds does and when and what I have to do.That's 2 hours of my life I'll never get back!!!Fair enough,they're finally starting to move their backsides (well,dragging) but I could've written it out in ten minutes.Ho hum:rotfl:

She has said she'll be in touch soon to get more of it done for the paperwork.No idea when.She has offered for them to pay for the cleaner I have employed,for a couple of weeks as their temporary way of assisting.

They are constantly being hounded,including by ds psychologist and psychiatrist.Both of whom have repeatedly told them it is unacceptable.

They are informing them of any difficulties at present so there is a record of them being useless.They even insisted on informing them I am not well (horrid fluey thing and infection past one and a half weeks.Shattered!) because they want it on record that SS say ds is too complex for teams of professionals yet think it's fine for me to be alone and ill...

Aside from that,I'm enjoying my cleaner lol

When my son was 4, I had meningitis. No social worker, no police officer, or doctor would help my son. He stayed locked in his room with a biscuit barrel and a 2 ltr cup of water in a soiled wet nappy on his own for 5 days while I lay literally dying in the other room.

nlj1520

Just checking in to see how things are going and to give a virtual hug. Hang on in there, so sorry you've been so ill. It's hard supporting our son's at the best of times and when we're ill it's nearly impossible! I remember having a violent tummy upset one school holiday and using one of his continance pads so that I could 'play' in the garden with him. Must have looked ill because a trusted neighbour came over and called the doctor for me. she sent me to hospital to force social services to DO something. I know it's worse out there, than it was when my son was growing up (and it was pretty bad then!) but it sounds to me as though social services are not acting legally with their treatment of you and your son. Keep going and threaten them with court and eventually something will improve.
thinking of you and sending you all the positive energy I have.

Confuseddot

Thinking of your too.:)

shegirl

Just wrote a longish update and lost it,so will update later!

shegirl

May be getting somewhere!

They are hoping to get ds a place at a respite centre we know,it's not in our city but a short train journey away.They are also going to see if he could take a worker from his old respite centre with him.It may not happen but fingers crossed for both!

Ideally I'd want him at his old centre but have been told due to certain other children being their longer now and an increase in noisy kids,so it wouldn't be suitable for him now that's happened

On the plus side,if we get lucky with the other one it has leisure connections (surfing for autistics etc) and is part of an organisation that also does one day for a term life skills programmes,a special needs college and adult residential care (not that I ever want that for him,he's my baby lol).So,there could be good links there for his future

They also cater up until the age of 20 in the respite centre which could be used to help with his transition,and gives me an extra couple of years without panic:rotfl:

They are also considering enablers to take him to clubs at school over holidays,which would be great

If it doesn't happen the only other way is a huge assessment to fund a service put together just for him!Special boy I've got...:D yes,that's pride :rotfl:

We could have carers in the home instead but that wouldn't work for us,he wouldn't want them and it wouldn't give him what he needs.

On an irritating point,some twits have been putting me down and disgusting themselves over my (and my sons!) need for respite and others to take him to clubs.Mindless idiots should know better.We both need it and ds needs to be able to do things without mummy-his favourite possession!

On another more positive (possibly lol) note,ds appears to have natural musical talent (to the surprise of many,but he is his mummys boy!) even if he doesn't quite seem to always connect it.He has always wanted a trumpet (a toy one for many years,bless him,he didn't think he could use a real one!) so,given his talent,interest and the fact he's started running to play his harmonica instead of scream,at times,I've bought him one for his birthday next week

It could go two ways: 1.He experiments plying with it,learns how to use it then plays by ear well OR 2.He constantly experiments and plays about with it in a way only a severe autistic who is daft as a brush and delayed can, giving me constant ear and headaches while putting our soundproofing under serious testing!:eek::rotfl:

Either way I need earplugs!