Decided to stop current support from Organisation

[Orange45]

Hi, I haven't been on for a while my son is 22 years old is autistic with learning difficulties non verbal. But on the whole a happy chap who likes to go and about has support for 9 hours a week from 2 different organisations. So on Thursday I received a text from the 1-2-1 support worker who takes my son out for 4 hours every Friday to do activities within the community. The text was went like this Hi, I'll come for 9am tomorrow as, as it's getting colder and there isn't much we can do with him as things are closed eg crazy gold I may drop it down to 3 hours.

So reading this text that was sent I sensed that the support worker has decided that she can't be bothered to look for other means of activities to do with my son and in a way has thrown the towel in. Bearing in mind she was his teaching assistant a few years ago at his school towards the last few years. So she knows him fairly well and has been supporting him since mid April 2021. I texted a list of suggestions of things to do outdoors with my son today and she agreed. But on return I asked how it went and she said that my son said no to everything that was suggested but still did it.

I have decided to end the support and will email the company on Monday as 28 days notice is required. I contacted the support worker he has on a Monday and asked if any spaces were available for a Friday and have decided to go with them, The support is more structured as he will go to the gym on both mornings go to the pub for lunch and go swimming/walking or do an activity ie bowling, crazy golf or something of their choice.

My question is have I done the right thing or do you think I might have acted in haste. I just got a bad vibe from the text I received from the Friday support worker and feel that she no longer is putting the interest of my son first. I also think she has another support straight after my son in the afternoon whereas before she hasn't. Maybe I am being over sensitive? I would appreciate any feedback and be interested on other views/opinions.

Thank you in advance

[Jofisher]

It’s so hard at the moment to find activities out in the community for our loved ones with special needs but support workers need to be innovative and guided by you as you know him best. Structure is also really important for those with Autism and I’m sure asking your son what he wants to do is to bigger question for him to answer. Your his Mum you know what’s right for him. Does your son understand she won’t be doing it anymore and is he happy with the other support worker it sounds from what your saying he does a much better job with your son. So I do hope this works out for you both now.

[Orange45 in reply to Jofisher]

Hi Jofisher, thank you for your feedback! Yes it is hard finding things to do and even harder finding the right support. And as a mum you know your child best and can only tell and advise on what they like or dislike. The support won’t stop straightaway so I will try and explain to my son nearer the time.

You can only hope you are doing everything you can with them in mind as you are the only voice they have.

[Jofisher in reply to Orange45]

Absolutely we are their voice

[SpeedyH]

I would have done exactly the same in your situation. Any change to the service the organisation provide to you should have been discussed in a review, and agreed with you. Apart from anything else it is very bad manners and certainly would make me question their commitment. Having said that, it might be an idea to keep looking for an additional person to support your son as it is never a good idea to have all your eggs in one basket. Now is a good time to look while his care is stable, rather than when you are desperate!

[Orange45 in reply to SpeedyH]

Hi SpeedyH,

Thank you for reading my post and replying. I have another 1-2-1 support starting on Tuesday in the afternoon. I have realised that it's best to have other options in case things don't work out.

[FragileXmum]

I think you have made the right decision to stop using this person to support your son. The clue is in the word 'support' after all! Is this person paid for by a local authority budget? If so, the budget will have been assessed on the basis of a suitably able support worker being proactive and meeting the needs of your son to access the community and activities that will benefit him positively. Our non-neurotypical adults continue learning and progressing throughout their lives and they mustn't be left to stagnate. They need support workers, not baby-sitters. Good luck with moving on and finding the right support for him, I know it's really hard at the moment but there are wonderful people out there who do a really good job and have a positive impact in what they do.

[Orange45 in reply to FragileXmum]

Hi FragileXmum, Thank you for reading and replying to my post. You do wonder if you are making the right choice for your loved one and getting a gut feeling if something doesn't seem right is always a good sign that you are doing the right thing. Even thought you question yourself a million times. Everyday is a learning day I have found and nothing is forever.

[Tracidu]

Hi Orange45 , I understand your feelings and don't think your being over sensitive , I have questioned my self many times about this but I feel your gut feeling to this carer maybe right, I have been in your position many times ? I find carers do loose interest over time ,which is very sad . Has your area got a building base daycare service that might be better for your son as its really not easy finding things for them to do , especially in winter , I used to hate the thought of my son wondering around with a carer on thier own , I was always the one who was looking for things for them to do , my son has very little speech or understanding but can say no and be stubborn if he doesn't want to do something.

I hope you find something soon , take care

[Orange45 in reply to Tracidu]

Hi Tracidu,Thank you for reading and replying to my post. Sometimes just hearing someone say you have made the right choice like you have and know I am not alone with having these feelings regarding my son. As everyone who is a carer for a loved one must go through the same process whenever they feel something may not be right. And just need reassurance that they are voicing their feelings on behalf of their loved one. It's all a learning curve having to rely on other people to make a better world for your nearest and dearest.

[MontyCat]

Hi Orange45. I agree with the comments other readers have made so far and, whilst I totally understand your self-doubt and concern that you may have acted in haste, I do feel that as mums of vulnerable young people we gain a kind of sixth sense, more acute than what we have for our neurotypical children, and often get these 'gut feelings' that something just isn't right. Your instincts are almost certainly right, and as has been said already, the support worker is not entitled to make unilateral and arbitrary decisions about their hours or what they do to support your son - it is a contract of work just like any other, and their role is to provide whatever support and activities your son requires, according to his support plan and his personal wishes. I hope you have more success with your new workers.

[Orange45]

Hi ,Thank you for reading my post and replying. That is so true parents with vulnerable children or adults gain this kind of sixth sense you just know when something doesn't feel right, It is reassuring to know that I am not alone, and also a shame that we have to experience this with having vulnerable adults on top of everything else we might have to deal with regarding are loved ones. I did think it was rather offhand to receive a text with a suggestion of just reducing her hours without even consulting me or the organisation.

[xenababe999]

Hello

Calm down please without sounding condesending (cant spell it LOL). You know your son better than anyone. Support workers adhere to a fixed employment routine and sometimes do not listen emotionally to their family. My only advice is contact your sons support network or even further agencies (mencap is amazing). I have spent the last two years volunteering for this amazing community support including working every week in the shop (met so many amazing support volunteers with their friends (thats my name for them). Good luck and keep smiling. I have suffered and survived.....XXXXXX

[Boeing-747 in reply to xenababe999]

i think you have done exactly the right thing.You know your son better than anyone else.Support workers should listen to you and act on your advice.It is important to realise that even though your son said no to these activities he actuaally did them and may grow to enjoy them.It aappears to me that this support worker just simply couldn't be bothered any more

[Orange45 in reply to Boeing-747]

Hi Boeing-747, Thank you for reading my post and replying! I agree and just needed confirmation that I had done the right thing.

[HolisticMum]

I don't think you've done the wrong thing at all. I think that worker no longer wanted to do the job but couldn't tell you straight. Don't worry about it, your son is your priority and you have his best interests at heart. Well done. May even turn out better, I really hope so. All the best.

[Orange45 in reply to HolisticMum]

Hi HolisticMumThank you for reading my post and replying. I think your right and I totally agree with what you have said. Thank you for that!