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I am a disabled parent with 6 disabled children and I really need some help

mummytosixmummytosix Member Posts: 2 Listener
edited April 2018 in Parents and carers
Hi

I live in South West London in the LB Wandsworth.

I am married.  I have an adult diagnosis of ADHD, Agoraphobia and I have funding agreed for an ASD diagnosis with SLAM.  I have formal EP tested IQ in the 'gifted' bracket.  I believe I have what was previously called Aspergers or HFA.  I also have sensory processing difficulties over every area which is likely the 'true cause' of my agoraphobia.

I have six children who were all born prematurely because when I was in local authority care I have a gynae procedure which means that I am at high risk of having prem babies.

I have 17 year old son with ASD, Learning Disability and Sensory Processing.  He is in an Autistic Special School and has an EHCP.

I have a 16 year old son with ADHD, he has an EHCP but is in private tutoring.

I have 14 year old daughter in a blind school.  Registered severe sight impaired with Hydrocephalus and and EHCP.

I have a 11 year old daughter with an EHCP in a mainstream school with ADHD, Dyslexia and Dyscalculia.

I have an 8 year old son with Diplegic Cerebral Palsy, Non Verbal Autism with high support needs who is severe sight impaired.  He is in a blind school.

I have a four year old with Oral Motor Dyspraxia and also ADHD with an ASD diagnosis pending.

I have 5 cases under legal aid with a SEN lawyer.  I have 7 cases of clinical negligence, 1 case which relates to my time in local authority care (same Borough) and also 2 disability discrimination cases pending.

I have a care package with both children's services and adult services.  It doesn't fully meet the needs but it's an awful lot better than nothing which I had for years.

I am a very capable woman.  I am 'clever enough' to understand what I need to do and how I need to do it.  However my social skills suck due to ADHD and ASD.  In every other area of my life these do not cause me massive problem however when dealing with the council i find it soooo difficult and they make life very very difficult for me (not particularly me) because i know it's the same for everyone pretty much.

In 2016 I really did reach breaking point.  I had to break down and for there to be 'risk' before they would help me.  I had begged for help for months/years before.

Now I'm going through all this SEN stuff and at the moment I feel like I can't engage with them because they upset me so much and I am not dealing with it very well, I recognise that.  The constant delays, errors, chasing, chaos, problems take up so much of my time and really break me down because I must also 'care for these children'.

I really need some sort of advocacy and I wondered if anyone could suggest anything.

I suspect the council would probably pay for it as well.

Thanks.




Replies

  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @mummytosix and welcome to the community! Great to have you here.

    Thank you for sharing this with us- it certainly sounds like you have your hands full, and I'm really sorry to hear that things are difficult at the moment. I'm sure our community members will be in touch to say hello, but in the meantime, have you tried your local Citizens Advice for advocacy? It may be wise to seek a face to face appointment at your local CAB: you can find your local service by searching on their website.
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Blimey @Mumofsix you have a lot of your plate!! You might want to speak to the CAB or the Scope helpline to chat with someone who can get a good overview of your life and what sort of help and support you could get.

    Do jump in and chat here on the community too, sometimes speaking to other people in a similar situation to you can really help.

    You can call the Scope helpline on 0808 800 3333
    Scope
    Senior online community officer
  • endo64endo64 Member Posts: 20 Courageous
    Hi thanks for sharing. i found that emailing the education minister and the council manager and the equalities minister via the gov web site gave me the tools that i lacked and received help via their chain of command quite quickly.
    All of the sectors that u have mentioned have a duty of care policy that can be viewed online on ur local government or local authorities site. You might find some useful info there.

    As im not sure what type of advocacy u are looking for i don't know exactly how i can provide a specific direction for u but hope the info helps you 
  • DenzDenz Member Posts: 4 Listener
    I think YOU are a very brave, intelligent & smart lady.
    I am a disabled adult struggling to find help.
    I wish you lots of luck & send you love & best wishes.
    Sorry I cannot offer any help, just wanted to say "hello".
    Keep in touch & the best of luck to you & your family who are lucky to have a lovely mum like ou xx
  • kassie25kassie25 Member Posts: 1 Listener
    Hi mumofsix
    You have alot to cope with there and little or no help. I take it you wish for someone to take over your battle for help with the council's, social services and lawyers etc. Scope should help you and maybe able to provide an advocate for you. I do not live in London so I cannot help you I wish I could as I have dealt with services like the ones your dealing with now and I know they are not the easiest of services they don't listen. Get InTouch with Scope I wish you all the best don't give up.
  • mummytosixmummytosix Member Posts: 2 Listener
    Awww I'm so sorry I didn't know that anyone had replied.  Thank you so much for your kind words.  Since I posted I'm a bit less stressed out.  It's still not easy.  I just found out another of my two children have probably got Cerebral Palsy as well.  Mind you they are 15 and 17 so it doesn't really change anything but adds a label I guess.  Maybe might make eligibility criterias a bit easier.  My 17 year old is just diagnosed with ASD, ADHD but I've known he's got a learning disability, just no one ever called it that.  My 15 year old daughter has Cerebral Severe Sight Impairment following a grade III IVH when she was born and Hydrocephalus.  I've known for years that surely the brain hemorrhage didn't just damage her vision!  She's got low IQ, fine and gross motor problems.  Maths ability of a six year old.  I've been told for years it's "just visual" turns out it isn't.  It's all so hard isn't it.  I'm not one for moaning if I can help it, but no one tells you anything, you just kind of have to work it out for yourself.  I am getting there !!

    One thing about me is that I NEVER give up - I'm very awkward like that lol

    Thank you all once again x
  • ryerye Member Posts: 7 Courageous
    Hi lady
    I do hope you get the help you need
    Tony

  • DebsHarr65DebsHarr65 Member Posts: 3 Listener
    Wow what a wonder woman you are is there anything at the moment you are not taking on.Stop for 1 minute and breathe. List everything that need doing,then put in order on how much of an emergency situation each one is then do them in order. Please try and make time for yourself you sound like you could do with something going your way or a holiday away from it all. Good luck darling I'm to far away to actually come and help or I would xx
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