Advice Needed: Hi, I just want some advice or... - Mencap

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Advice Needed

Orange45
Orange45

Hi, I just want some advice or thoughts - I first made a post December 2019 my son who was is 20 yrs old and Autistic with learning difficulties at the time had been going to 2 Day Centres and stopped going as it caused so much distress and he was become very agitated and started pushing staff and we were being called to come and collect him. The best way to describe how he became is depressed not wanting to go out or shower basically losing all interest in everything he liked doing.

Fast forward to where we are now my son seems a lot calmer and has starting to want to go out coming with me to do the weekly shop or go to Greggs, McDonalds evening going for a walk (weather permitting), Pleased to say we managed all this without the need of medication. I realised it wasn't as simple as going to the doctor asking for some calming medication for my son. Talking with my sons social worker we both thought it would be a good move to introduce 1-2-1 support who work with Autistic Adults as they would be better equipped in supporting my son. We had one support worker who came for a few weeks before lockdown first happened in March. The support re-started with the same support worker end of July/August but my son didn't want her to come and after about 5 visits indicated for her to leave. We then introduced a male support worker and things seemed to be going ok as we went on some walks as he joined us at the top of our street rather than coming to the house- as this could have been a reason my son rejected the other support worker as we have never had support coming to the house. As he has always gone to the place ie school day centres.

So on Tuesday 22nd Sept we met the support worker at the top of the street and this was early evening 5;30pm and my son after about 20 minutes started waving and saying goodbye to the support worker so he went. Now I am thinking what do we do now. As my son is rejecting outside help, Could it be he might not be ready for the 1-2-1 support yet as he is still coming out of the dark place he found himself in early this year? or is it that he prefers to have just his dad and me being there. I am currently working full time at the moment as I recently got promotion so am having to train full time but will go back to 3 days at the end of November 2020. My husband works but he has managed to change his work pattern so he is around in the day while I am at work. So my son is not left alone for very long.

Sorry for the long message but I just wanted to see if anyone else has experienced anything similar or has any suggestion that I have not thought of, of how best to build trust with the 1-2-1 support with my son. We have never had 1-2-1 support before so this is a new concept for all of us.

My sons seems happier than he was 6 months ago I am pleased to say compared to how he became over Christmas 2019.

I would very much appreciate any advice or thoughts

14 Replies
oldestnewest

Hello. I’m not sure if anyone would know why he might be doing this but I understand my own need to build trust gradually with people and situations. I agree that maybe the person coming into the home was too big a change so the stepping stones need to be clearer. I would continue with gentle encouragement but maybe keep visits short for a while and gradually build them up over time. If he can understand then allow him predictably, I.e. meet the person at a routine time and be clear that you will spend time with X until this time or this activity ends. If the support worker is trained in autism then they too might have some good ideas. It feels like he needs time and space to build trust with the person and new arrangement. Good luck

Orange45
Orange45 in reply to Iolo

Hi lolo, Thank you for your reply. I understand what you mean about building trust I did take the approach of getting to know the support workers by them coming to the house and just myself and the support worker chatting in a separate room but still visible so my son could see us. But as you said maybe this was a massive step and probably a little ambitious on my part. Moving forward with the new support we started to meet outside and he joined us on a visit. I suppose what I am wondering is should I still continue with it but take it at a very slow pace?

Iolo
Iolo in reply to Orange45

Hello. It sounds like Waterthorpe’s experience and advice is really helpful. I do think it will just take some time, at your son’s pace with gentle encouragement. A massive step for you all. Take good care.

Orange45
Orange45 in reply to Iolo

Hi lolo, Yes wise words take it at my sons pace encouraging thank you

Hidden
Hidden

Hello,

I went through a very similar experience. I persevered with the social clubs. It was the fact that my son went through the doors and everyone looked at him, it was noisy. So one of the support workers from the club used to come out and meet him and I said goodbye outside the club. Perseverance and small steps. Talk to him about it before hand what is going to happen emphaize with him and tell him you know it is frightening you will be ok. He also may think you are coming back, so tell him you will be back home at about such a time. ( of course don't give him the exact time incase you are late, say about 6ish for example). If you decide a one to one, invite that person into your home and let your son see you chatting with him a couple of times. Then may be go out for 10 minutes and leave them together and gradually increase the time.

Hope these suggestions help.

Kind regards.

Orange45
Orange45 in reply to Hidden

Hi Waterthorpe, Thank you for your reply. He used to go to a social club but after a year and half decided it wasn’t for him. I tried the suggestion of the 1-2-1 support coming home and I was chatting with them for a few weeks and then left them alone for a little while only for my son to go up to them and ask they leave. With the new support worker I thought perhaps my son didn’t like them being in the house so decided to meet them outside and for the support to join us in the activity of going for a walk which was going ok for a few weeks then the last one he was asking him to leave. It has occurred to me that maybe because the other times were in the afternoon and this last one was early evening could have been the problem.

Hidden
Hidden in reply to Orange45

Hi,

Can I ask how old is your son? Will he understand if you sat him down and said that you need to work, but you also want him to be happy? He obviously loves you very much and you him and I know from reading your text you put your family first all the time. But in the future this will benefit him as much as you.

Orange45
Orange45 in reply to Hidden

Hi Waterthorpe, my son is 21, he knows I go to work as I always have since he was 6 years old. He’s none verbal but understands things like not wanting to do or go somewhere, things he likes or dislikes simple forms of understanding. I am just having trouble with him accepting this new aspect of having a 1-2-1 rather than him going to a day centre where he wasn’t happy. Me going to work isn’t the issue just the new process of the support so he doesn’t come to rely on both me and his dad. It’s just overcoming that really. It’s not helped by me having to go full time whilst I am training for a new role as I was recently promoted. Also the support is unable to come at the weekend as he has his other clients that he supports already.

Hidden
Hidden in reply to Orange45

Hi,

It does sound difficult, is the support worker trained in Autism? I have found from experience that the Autistic person needs to go to them rather than the support being full on and trying hard to make the situation work. Talk to the support worker about your son interests. It could be sensory like playing with sand or water or visual things like playing games on the play station. Let the support worker into your home and he could bring some interesting things in for your son. I.e new game for a playstation or coloured rice for him to dip his fingers in. Don't show your son straight away, let the support worker play with these, this will get your sons attention and he will go up to the support worker. It is all about your son and being in control of the situation. Rather than the support worker trying to go to him and make the situation work, your son has to feel in control.

I hope this makes sense, the support worker might be trying to hard but not in an Autistic point of view.

Also don't worry about asking him to do these things because he would understand if he wants to work with Autistic people. I find the whole experience fascinating. Even the way you speak to people with Autism makes all the difference.

I have learned loads from my son over the years. Now I know what he is going to do before he does it.

Good luck, and please keep me informed.

Kind regards.

Orange45
Orange45 in reply to Hidden

Hi Waterthorpe, yes what you have said makes complete sense thank you. I think my own expectations of the support worker and how quickly things should go have probably overshadowed as I so want it to work sooner. I will keep you posted on how things progress as it’s going to be a long road. Thanks again for your advice I really appreciate it!

My learning disabled son susses people out depending on their voices. He has to be defensive about his contacts because rejection follows the same neural routes as physical pain, and having a compromised cerebral vascular system means anxiety will increase his heart rate and vascular discomfort.

Orange45
Orange45 in reply to Greenroad

Hi Greenroad, thank you for your reply. Yes I agree they do suss people out and respond when they are ready themselves. Thank you

Sarah_Mencap
Sarah_MencapAdministrator

Hello Orange45

I can see that you have had a lot of great responses to your post. I really hope they have helped a little.

Please also call Mencap's helpline on 0808 808 1111

(or email helpline@mencap.org.uk) if it would help to talk to one of our advisors. It is free and confidential.

Best wishes

Sarah

Hi Sarah, Thank you for your message and yes the response has been great with some helpful suggestions.

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