Any advice

[ShindaDad]

I am the father of a 23 year old son who has been diagnosed with learning disability and on the spectrum when he was 19.

Have had no real help or support from local social services, only recently as his mental health has detrerioted sharply in the past few months and ended up in hospital twice.

We got a psychiatrists appointment mid June 2023.

Just looking for advise as am sometimes overwhelmed with all the information and regulations regarding my sons condition.

[Steve__]

That sounds really difficult for you both. Sorry to hear that. It can be hard to get help from the services you mention... Most of us with long experience become very persistent! If you have access to money, then private routes can be faster to become accessible (but always get a recommendation of any practitioner).

The psychiatrist appt sounds promising... maybe take a friend to take notes, support you, or to take your relative off somewhere so you can have a fuller discussion with the doctor (I routinely do that).

Keep notes of everything that happens in terms of your relative's mental health, behaviour, support, lack of support, impact on other things and you, (especially anything going wrong or badly in any way), and tell all this to the Psy... it can be helpful later on if the psy letter documents all the serious needs. You may need to approach social services again in future with fresh evidence, etc, and the better that is the better your chances.

I'm no expert...approach perhaps Mencap or NAS main support lines for direction. Others on this forum have mentioned private social workers... Never tried one myself, but one way or another some advice from a fresh and expert source is vital for most of us!

Good luck, Steve

[ShindaDad in reply to Steve__]

Hi Steve, thank you so much for your advice. There a few things that I have not thought of, much appreciate your words.

[Maurice_Mencap Partner]

Hi ShindaDad , that does sound like a difficult situation especially as you're not getting regular support. If you are based in England, it would be worth contacting our Learning Disability Helpline on 0808 808 1111 and talking to one of our trained advisers about what's going on, as they may be able to offer some support and guidance to you.

There's more details on our website here; mencap.org.uk/advice-and-su...

[ShindaDad]

Thank you so much..

[InclusiveZoom]

What brilliant advice from lovely people.

All I can offer are free Zoom sessions where we work hard to build friendships and self-confidence. We would love to welcome your son to come along. We have a wide variety of activities which are all on Zoom. You can try them for free so you have nothing to lose.

The website is inclusiveonlineactivities.com please do get in touch. Meanwhile I wish you all the very best, Carol x

[ShindaDad in reply to InclusiveZoom]

Hi, thank you so much for the offer but he will not engage online.

Although I will have a look

[InclusiveZoom in reply to ShindaDad]

Aw thank you for your reply. Do let me know if things change

[Annabellelily Community friend]

Hi there, I’m so sorry to hear that you are both without support right now, I am sure this is incredibly difficult for you and your son. Others have given great advice, and I also really recommend writing down as much as possible, from symptoms/observed behaviour, to what doctors have said in appointments, letters, etc, so it feels less overwhelming and is easier to keep track of. Keeping all the information in your head can make it a lot harder.

I also just want to say that this online community is here for you for guidance and support with any troubles that may come up in the future. Even from this brief post, you sound like a fantastic father and I wish you and your family the best of luck going forwards.

[ShindaDad in reply to Annabellelily]

Hello, thank you so much for your kind words and have already taken on the advice offered on this platform.

[jazzy15]

Hi ShindaDad,

I know this is a couple of months old, but I just wondered how are you doing? Has the psychiatrist appointment been productive?

I’m a single mum with older teen & adult children with disability, (autism, adhd, cyclothymia and poor mental health). I can totally understand just how overwhelming it all is, so much information to take in, whilst at the same time, not enough information - at least useful information & so little support. Muddling through this jungle is exhausting.

[ShindaDad in reply to jazzy15]

Hi Jazzy, thank you so much for your message.

It's a comfort to know how that someone understands the struggles.

They came to the house and done an assessment, the psychiatrists in going to refer him the ASD team but is taking a long time writhing the report, despite my ringing the department a couple of times a week.

The problem is, that it is the same team that he was referred 4 years ago and they said he didn't meet their criteria. So one big circle over 4 years as his mental health has detrerioted significantly in that time. The complex team he was assigned to have done little to nothing, even after going through the complaints procedure.

I am thinking of contacting the local MP to see if he can help.

[jazzy15 in reply to ShindaDad]

It is often a never ending process of going around in circles isn't it. I've know people who have children with additional needs in some form & they will say things like "my child wasn't diagnosed until their 5th assessment, they kept saying they didn't meet the criteria, but I knew & I kept on fighting" & you look at the child & think how on earth did it take so much, when they most obviously have a need.

It gets harder as well when they become "adults" I feel its like always being told, it doesn't matter now, they don't need to go to school, so we don't need to help. It's as if being an adult magically cures them, when in fact they need the support more than ever.

Another thing I hate is "they don't a diagnosis, they don't need a label"

I've had two children diagnosed one very young & support in some form in place from the age of 3. The other diagnosed much older, then no support, I have another child who I never got diagnosed, & I always tell people that, I have had the different experiences & having that diagnosed, makes a world of difference. I explain that I don't see it as a label, I see it as a reason & people respond better when there is a reason that my child acts differently than what society expects of them, people make adjustments. When there is no reason (no diagnosis) people are reluctant to adjust, without the reason my child is "weird, difficult, odd, naughty, lazy"

Does your son, engage online with others of similar age of similar needs, like my daughter talks with others online, through Instagram, Facebook, I have to monitor, but it really helps her having a community.

Are you in the UK?

If you are uk & near Staffordshire area, look up PEGIS.