Carers finding my son too challenging?

For issues specific to autism / Asperger Syndrome.
Hi everyone,

I suspect that carers are finding my son too challenging even though they are part of a care/respite agency sub-contracted by local social services for 'challenging children and young adults'

This is week two and I have suspected that they have been struggling with him since session one but like everything, I gave it a chance to smooth out any teething problems.

They are two guys and they are supposed to take my son out into the community four days a week for five hours per session.
They also sometimes have access to a house owned by the agency as a sort of base but it's never guaranteed when it's going to be free to use.

Every session when they have taken my son out, usually 10am until 3pm they have brought him back early without warning or any explanation for their early arrival.
The first session was 2.30pm and they sat in my house with me until 3pm then went onto their new placement.

The next day when they arrived to collect my son, I asked them to text me if they are going to come back early to make sure that I am home. I explained that if I wasn't home then my son would become extremely anxious that he couldn't get into the house.
So that session, they texted me at 2.10pm saying that they were on their way back and they arrived at my house at 2.20pm and sat and chatted until 3pm then they left.
Every session they tell me about the behaviours my son has displayed and I've sensed that they are struggling with him but are not comfortable saying so.

I mentioned to the SW about a autism parent support group that I would like to try but it is in the evenings which is impossible for me to arrange care for my son.
The SW suggested using the agency for evening support so we changed this week's rota at the weekend meaning that yesterday support was scheduled for 3pm - 8pm instead of the usual 10am - 3pm.

The guys turned up just before 3pm and I noticed that one had a mark and scratch on his eyebrow and cheek. He pointed out to me that they were caused by my son. He did it in a half laughy/jokey way and half wanting me to know about it (though he had already told me about the incident the session before)
He also made a few subtle digs at me because the rota was changed last minute meaning he's missed out spending time with his daughter.
They eventually left though I could tell that my son didn't want to go with them.
I went shopping but got a call at 4.30pm to say that my son wasn't settling and whilst driving in the car, he kept taking his seatbelt off and trying to climb into the front. One of the guys sat in the back with him but he kept doing it.
I could tell that they wanted to bring him back but wanted me to say it rather than him.
I told them to bring him back and they said okay.
They arrived with him at 5.10pm and left at 5.30pm after telling me that driving with him is dangerous (I have no issues with driving with him) and how it's the worst they have seen him.

I just feel that they are finding his behaviour too difficult to manage but they don't want to say which is why they are bringing him back early at each session.
I no longer feel comfortable or confident that these men can manage him or that my son is happy going with them.
Spending hours and hours on parks each session is not ideal but that's what they always do with him even though I keep pushing for them to find a base for him as well as suggesting a local children's centre which would be perfect!

I have cancelled todays session and asked my SW to phone me.

Any advice would be welcome - thank you
Hi,
I think five hours out in the community without a firm, consistent base is too much for your son and for the care workers. What is the story with the children's centre? Is it suitable? Do they have their own room? What are the facilities? What is there to do there? Does it have grounds?

The care manager should be sorting out a timetable of activities for your son and the care workers that is predictable and has the right balance of activity and down time. E.g swimming, return to base for favourite activities (DVD/ music or whatever) lunch and then another planned activity ... Your son should know in advance what the plan is.

Driving to a house that might or might not be available, care workers not impressed at short notice change in hours ( understandable) plus the change in hours unsettling your son is all a recipe for disaster.

On the evenings you are attending your support group could they have a shorter outing and then bring him home for tea and an evening at home, as if they were babysitting?

You are allowed to ask for more/ different care workers but of course every change will initially impact on your son.

No easy answers, but perhaps my questions will help.

Melly1
Hi Melly,

The Children’s Centre is somewhere they would hire for themselves so my son would be the only child in it.
It’s perfect for him as there’s lots of crafts, paints, pens, crayons as well as toys and puzzles not to mention the space to run and jump.
It’s also a place he’s familiar with.
When I suggested it to the SW she thought it was a great idea and has pushed the agency to hire it. I spoke to the manager about it again on Monday and keep pushing for it which they say they’ll look into but he haven’t heard anything from it.

You’re right about an activity timetable or some sort of plan sent to me prior to the carers collecting him.
I asked for that at the initial meeting but I’ve never had one.
My son needs prepping to be what he’s going to be doing that day and that’s not been happening.

The carers are due to take him tomorrow 3pm - 8pm but unless there is a base such as the children centre in place then I’m going to cancel it as I say I’m not happy with the poor setup and I know my son is struggling with it.

I’m just hoping that my SW understands why I’m doing what I’m doing and she just doesn’t see it as I’m refusing support.
What qualifications do the staff have? Expertise?
I don’t know about qualifications but when I asked about experience their reply was ‘lots! There’s really nothing that we haven’t seen’

I know this sounds terrible but caring for him now is making me utter miserable.
We’re locked in the house as he escapes from the garden and please don’t ask about making it safer as that’s a whole other story!!!

I keep asking about residential accommodation but I keep getting told by SS that there’s nowhere suitable for him even though my son is ‘on the edge of going into care’ (quoted by our SW)
I love him so much but I’m so unhappy and can’t do this anymore
I'm so sorry Amanda, I know how awful that is.

You will need help and support to get a place in a residential school.
Have you searched for Camphill Schools, or The Sheiling School yet? This will give you a starting point.

When I was trying to find a suitable school and get it funded, I found IPSEA really helpful, I couldn't have managed it without them!! Some special schools are open 52 weeks a year.

I know from a friend that Southlands School near Lymington is part of the Hesley Group, and another place is called Coxlease.

Start by having a look at these places online to see what sort of thing is available, and also search "Residential Special School" for the County where you live.

Education will be reluctant to give you information I'm afraid, so you will be better off saying "I want him to go to..."
bowlingbun wrote:
Wed Aug 22, 2018 3:16 pm
What qualifications do the staff have? Expertise?
I would push them on this.

Nobody (even pc plod in one case) gets direct access to main caree without either the correct training, or a person to accompany/lead them who has the training required to keep them safe. Its not out of disrespect, they would not be alive today if I did not take this stance. Hospital nearly killed them last year through ignorance/neglect of this.

Side note - maybe it is a good idea to start with 1 outing a week for xx amount of time, then 2, and go from there.
I can see how it might stress your son out as hes also got to build "trust" with the carers (and vice versa they must become comfortable working with him)

Best wishes
Someone mentioned Camphill Communities. We have one not far from here and I know two people who work there. neither had any experence of working with people with special needs before. One is a nice, kind person who does her best but she says she gets little support from other staff or management. She has now dropped all the daytime work and just works nights when she prepares the residents light suppers and sees them to bed and she sleeps there too which she finds less stressful or demanding as the daytime shifts.

The other woman I would not let anywhere near vulnerable people because I know a lot of her background and its not good but I dont want to mention it on here.
M was at a Camphill School from the age of 9, to 19. It transformed his life, and he still talks about his teacher Heidi with great affection. We exchange Christmas cards every year with Heidi, who is probably now about 80. She was very fond of her class. (They don't always change teachers every year).
bowlingbun wrote:
Sun Sep 02, 2018 5:45 pm
M was at a Camphill School from the age of 9, to 19. It transformed his life, and he still talks about his teacher Heidi with great affection. We exchange Christmas cards every year with Heidi, who is probably now about 80. She was very fond of her class. (They don't always change teachers every year).
Thats good to hear. the Camphill here is for adults.