Looking for contact with families of autistic children who are in residential care

EllyBellyBooBaa

Hi, My son is 11 years old and moved into his second care placement in December last year. He has severe autism and is non verbal. He is amazingly clever and a beautiful soul but after trying everything, including a huge home care package I came to the realisation that I am unable to care for him, my two other younger children and myself all at the same time. I searched for a placemnet and found one that looked good. Its 300 miles away from home but looked so promising that I hoped the distance would be outweighed by the positives. Short story, it hasn't. I miss him, my heart is breaking and the placement is not living up to what it promised. I have been through this before with a more local placement and I am beyond deflated at this. I am strong and independent but need someone to speak to who shares some of my experience. My son's social worker suggested I try a message on here. So is anyone out there?

Alex_Alumni

Thank you for sharing your experience @EllyBellyBooBaa I can't imagine how difficult these decisions are, not being a parent myself, and I'm sorry to hear that it's not as positive as you were hoping for. Just to clarify, is your son at home with you all at the moment?

Hopefully another member with a similar experience can share their thoughts before long, and if you need anything in the meantime, please ask

EllyBellyBooBaa

Hi Alex, my son is in residential care currently. I previously had a huge care package at home but it didn’t work out 

L_Volunteer

It sounds difficult that it didn't work out @EllyBellyBooBaa. Was there a particular part that didn't work out or was it generally unsuccessful and how is residential care going?

I would definitely recommend talking to the local authority and the residential care placement about what's not going so great and how it could be made better - e.g., with additional or different provisions.

Please do not hesitate to let us know if you would like to talk about this further or if there's anything, more specifically, we can do to support you with this

EllyBellyBooBaa

I hai have spoken to
both the LA and the home. I trained as a social worker so I’m not seeking advice more connections with people who have gone through this. Looks to be drawing a blank here too unfortunately 

surfygoose

I am sorry you and your son are having a hard time with his new place. I know I’m not what you were asking for because I’m not a parent but I wanted to reply anyway to say things can get better and also don’t feel bad about it not working out at home even with home care package. It isn’t your fault. I am 36 so a lot bigger than your son but I have autism too and live in residential care and it doesn’t make me think my parents don’t love me or anything. I know you didn’t post saying you were worried about that but just in case because I know my mum gets worried so much about me and she loves me so much she feels bad herself if something goes wrong for me, and I wanted you to know you sound like just as lovely a mum. Also I did live in a local placement too which is what we wanted for me to be near my family and I was there a long time but it got bad and failed it’s inspection and I wasn’t doing well there anymore. Actually I’m with my parents just at the moment before I move in to my new care home that I’ve already looked round. It seems much better, though I have to move much further from mum and dad, but I bet I will still have my problems because that’s me and my autism and no residential places or anywhere are perfect, but also bear in mind it can take a long time to settle in. Like with autism we take way longer to settle in so maybe things will improve for your son. Even years. Can you see about things like the one to one hours? It was better for me having the right support hours, things never worked when it wasn’t the right hours but this time around it’s 17 hours one to one in person support per day and then a waking night staff watching a video monitor overnight. Maybe the right support level just might not be found yet for your son? Also sorry it sounds dismal but me and all my friends in other homes, their parents always have to keep on at the homes to make sure they keep all their promises and keep looking after us well. My mum and my best friends’ mums, they said they imagined we would move out (I know this is a bit different because we are much bigger boys than your boy), but that they imagined we will be looked after by our care home and our parents will see us for the fun bits more, but they realised they all still have to phone the homes a lot and keep a close eye on everything. I hope your son does settle in. It is really hard. Being around others can be hard and other people’s behaviours even though we have our own behaviours but we can all trigger each other and stuff but it can get good and fun too. He might get staff he gets really close to. It can be very hard when they leave though but good staff can make things more settled. Also making friends living with other people is nice. Even if we didn’t seem like we would make friends before but do it in our own way. Like just sitting next to someone and both doing our own thing and people can think we aren’t interested in the other person and don’t notice they are there but actually we are best friends and just do it our way. My best friend doesn’t speak and we like to watch our separate things on our iPads next to each other and we are both calmer and happier together. When I move to my new home we will live very close together so we can see each other lots of times per week. Anyway I don’t know if I said anything helpful but I didn’t want to ignore your post because I do hope you are ok and that your son will be ok and happy too.

EllyBellyBooBaa

Surfygoose, thank you so much. I can’t express how amazing your response is. The placement is coming to an end soon because they are neglecting my sons needs. He has a speech device and he throws it a lot so sometimes it breaks. He’s always done this so when it breaks I have others, I get cheap devices so he can keep communicating. Sometimes we have to use paper pecs. In the home they have given him nothing. So he can’t communicate. He has lost lots of weight but when his dad went to visit him last week they gave my some nothing to eat or drink from 3pm-7pm. After school!! Everyone wants a snack after school!
I see the connections my son makes. He’s amazing at making friends. He’s a beautiful soul and very clever but the home don’t understand this. They think he’s cute when he’s got a blanket over his head but actually he’s overwhelmed. I’m so sad to have to move him again because I worry about the damage it is doing to his sense of self. He needs to be where he is understood. When he moves it will be closer to me. I am the staff member and the friend who will never leave. I want him to know he is loved and important and I can’t do that from 300 miles away. Thank you again. I hope one day that my boy will be able to communicate as beautifully as you. Thank you for telling me about your mums experiences I needed to hear that. 

surfygoose

I’m sorry I didn’t understand how to know when someone has replied on here so I only just found your message back because I spent this time trying to work out how to check if you replied and somehow managed to find the question again.
That sounds a good thing that your son will be moving closer to you. Standards of care will always stay higher if you are that parent that turns up and keeps them on their toes. It’s sad that everything is always a constant fight but I think even the good places require a close eye to make sure they keep on top of things.
I don’t know what device he’s using for communication so I’m sorry if I’m not being helpful but the one I use is on a tablet and my dad puts it in a really tough case, the type you can throw it down the stairs and the device inside is still fine or get it ran over by a car! Just thought I’d suggest if it was possible that you could get that sort of case if there’s something that fits your son’s devices.
Extreme weight loss or gain seem to be a feature in lots of residential places. In my experience living in residential I find that if it’s specifically in the care plan a nutrition issue and you’ve requested for it to be recorded then care staff stick to it much more. Make a specific point of it in your son’s new place that he’s at risk of weight loss and make the plan of what he should be fed and ask for it to be documented so you can keep a check on it and regular weighing, then they tend to stick to the plan I think.
I get that like you said with the blanket. I’m the same. I think people don’t always understand well why we do things. Care / support staff come and go quickly which can mean people don’t know people as well as they should.
I hope the new place works out much better. Your son sounds lovely. There are some genuinely lovely staff around who do want to get things right. I’ve had some lovely ones look after me. That’s nice that he makes friends. I bet he will make nice new ones and it will be lovely you get to see each other more.
I’m still waiting for my house move, it seems to take forever. Please do stay in touch and say how it goes for your son. I bet you will get there and he will be ok. I bet he will because he has a lovely family looking out for him.
I am a bit terrified of moving to my new care home too and it gets hard doing waiting for each stage and not knowing when exactly it’s happening. I like having set dates and I don’t like uncertainty. Mum and dad said I can buy some cool stuff for my bedroom when I move though.
Thinking of you all while you get the move sorted out.