Published on 12, July, 2020
hey im vicky
I've got a 7 year old boy who is in the process of being referred to community peads. Been fighting 2 years while home schooling him. LA dont seem to bother much. Feel like im hitting a brick wall.. as not getting any help and don't know where to even start.
Hospital have told me their still working on Dec 2017 referrals and I started referral Aug 2018 .
Any help would be grateful... or even just to make a friend.. dont have many of them
Hi. I got referred may last year and got given a choice after a year waiting of either continuing to wait for nhs or accept referral to healios. It does seem to depend on ur location as to how efficiently u get dealt with. Friends are few and far between these days. Have you been to ur gp?
Yes, gp is one who referred him. Have done this 4 times since aug 18.
Since then ive had local LA come out for home schooling and asked about EHCP and they havent even put me in touch with them.
I'm based in Wiltshire, I know different areas get seen a lot quicker but here its like 3 year wait.
Yeah since my son has been showing signs of adhd and autism friends dont really want to know anymore.
Coping I think. How bout u?
hope your ok?
Just spoke to doctors, no help whatsoever... told me to ring social services to see if they can help. Dont really want to ring them and get them involved
They should do. If not set me on them mid meltdown
yes hoping doctors will actually get off *** and at least put me in touch with someone that may be able to help
That’s ok. And sounds very much like you have a good case going for a diagnosis and the risk to ur daughter as well should prompt a response.
Thank you so much for your time. It means alot. Ive just answerd a 31 question test and he scored 25 outta 31 so states he has some sort of learning difficulties.
Will make sure they listen tomorrow, im frightened for my daughters sake. She can't fight him off like me and my mum can.
Good luck with that. Make it clear you are all suffering and you need to get him the support to help all of you and to ensure he has an education. You are not alone. us nice people do still exist in this selfish planet of ours.
Fingers crossed, im going to look into the assessment now. And see what i can find. Then hopefully can send to gp and say look this is what I've found... now how are you going to help.
As thats all I want for him someone to say yes I'll help you. Rather than send us in a totally different direction.
He’s the most important person obviously but you need to think of yourself too as burning yourself out isn’t gonna help either of you. You seem very nice and an obviously caring parent trying to do her best by her boy. From what you have said you have grounds for an assessment and if u can find the assessment online that you can do on his behalf it would strengthen your position. Sometimes you have to be blunt and you need ur gp to pursue a diagnosis. Could be adhd or something but you will know and be able to help him accordingly.
Yes I've found that out.
If i want my boy back into a school which would help him, I need the diagnosis.
Everything seems to revolve around it. Not the fact you still struggle until you get to that stage.
I must admit talking to you seems to put a few things into prospective. And I will be saying more to the gp Tomorrow. I need the help with him. I get no time to even relax as he's on the go from early dawn until like midnight sometimes later.
Sounds like you have had a rough run of it. And I think that support is lacking for autistic people. I got told it’s up to me if I feel like I need help. No offers of support in my local area just finding my way as I have always done. Chats like these can make a difference and sometimes it is all that is needed to calm me down. When I lash out it’s either at myself or whatever I’m stood by. And maybe a diagnosis might be the way forward as these days it seems to be you are normal until that official diagnosis is offered And the help isn’t offered until you get diagnosed.
Oh rite, will have to look into that. That be nice just having someone to talk to who relates to what im saying.
He is going to private lessons once a week 1 to 1 and seems to be getting on well. But everything isn't cheap these days.
Trying to find groups where there are children like him,so he can socialise and be himself without me having to tell him to stop biting, kicking etc. Just so the parents know he has conditions to. Would make it a little easier for him to have a friend who can relate.
I’ll support you Too even if only in spirit. Maybe tell gp the home schooling is not going so well and you are worried about his education to give them a prod in the right direction. Or get a second opinion? I did the 50 questions assessment I found online and took it into my gp which seemed to help. I know they do ones that adults can do for their kids as well .
Hes 7 and in my area the age limit for diagnosis has just gone up to 8. Been fighting since he was 5. Just dont feel like im getting anywhere for him. Im not after a Diagnosis... just the help would be nice.
I'm a single parent with only my mum for support
I have suspicions about my daughter as she shows a lot of signs too and we clash big time sometimes. It’s so difficult as u know u r doing the right thing but people judge. One thing I will say is I’ve always been true to myself and who I am however much I was bullied. And feel proud I’ve achieved that. Sounds like you are doing your best for your son and that’s all that matters. I know some areas don’t like assessing kids under a certain age and will monitor them but sounds like there’s no communication from them To you on that front.
Its nice to see someone else's prospective of it. As for my son he can't tell me whats going on inside his head. Which must be hard.
I want to protect him but all I get from others is dirty looks coz im shouting at him. He has no danger level.
I’ve only been diagnosed recently and get told I seem normal.. my assessment score was over double the threshold and met every criteria.. some days I act and feel like a kid as my mind can’t grasp I’m a grown up and it’s a constant battle in my head which unfortunately bubbles over into angry meltdowns and all people can do is laugh at my “overreaction “ which fuels my meltdown. So I can’t win and feel cut off from society. Sounds silly but This conversation is meaning a lot. Someone is listening...
To be fair its just nice to speak to someone who can kinda relate.
My boy is under 11 so dosent have to wear a mask. But my mum doesn't also as she has lung disease and some oap was banging on bus window yesterday saying she had to wear it. So frustrating.
Why can't people just keep their opinions to their self. They don't know whats going on behind the scene's.
No they shouldn’t. I can’t wear a mask so I use a loop scarf and the comments I get are incredible. It’s wrong they are not prioritising ur son. Wish I could help you
Thank you. Likewise
I've enjoyed talking with you
Here if u need a chat.
That’s quite alright.
Yeah you've helped me put a few things into perspective and listened, so I thank you for that.
On a good day. And got used to masking... Hope I have helped you. Really enjoying chatting
You seem very with it to be fair. Been a help to me for sure
I know what it’s like to be pushed aside and ignored so it’s ok. I constantly feel like I’m failing.
I'd do anything for them. They are my world. Just wish I wasn't being sent from pilar to post and not getting anywhere. Cheers for listening
Never. You are doing your best. Life isn’t easy and yeah I’ve struggled a lot and often but I’m doing ok in what you would call life These days. I am sure u are a lovely woman and do ur upmost for ur kids.
Same here. Only out to help their self and not others in need. Ive tried my best so far but feel like I've failed him
Starting to think the worlds definitely full of self obsessed selfish ........ only out to further their own selfish needs.
Same feel stressed that I still can't get anywhere for my boy