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I don’t know where to start. After a very traumatic birth my son (18) was born with cerebral palsy

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glh2913
glh2913 Community member Posts: 9 Listener
Apologies in advance if this is in the wrong category I wasn’t sure where to put it and  this is probably going to be quite long.
Back story, after a very traumatic birth my son (18) was born with cerebral palsy, (mild athetoid quadriplegia) I was adviced to claim Dla for him at about the age of five but they denied it and said he didn’t need anymore looking after than any other 5yr old so I left it at that. He eventually hit his milestones and went to school, in primary school they already knew of his conditions and struggles as his older siblings attended the same school and he was well known by the teachers. In secondary school they were a bit more on the ball and he was diagnosed with Dyslexia and also assessed for adhd and ocd. He definitely  has dyslexia and adhd but I can’t find any actual reports not even in his ehcp. He also struggles with his speech and has significant expressive and moderate receptive language difficulties due to low muscle tones and can become quite upset and anxious if approached or confronted. Even now at 18 I have to break down verbal information into more manageable chunks or explain things to him in a way he would understand. He hated being pulled from class for assessments, extra help etc and looking back now I think he was really depressed especially when talking about himself which was always negatively. It makes me so sad I have overwhelming guilt wishing I had helped him more than I did and pushed for more help from everyone that could have. He suffers with hypermobility and low muscle tone, local a&e knew him by name for the amount of times he cut his head open or broke bones from falling over. He Struggles with fine motor skills like buttons and zips and would often came home from school with his pe kit under his uniform. He absolutely hated everything about school from the moment he stepped foot in nursery aged 3 and his whole school life was just horrendous for him and he couldn’t wait to leave. Which he finally did two yrs ago at 16 and no GCSE’s (partly because of covid and no exams). They were the longest 13yrs of his life.
Most of his peers went to sixth form in the same school they attended and I’m so thankful that he has a really good peer group ready to support each other whenever needed. Now, at 18 I think it has finally dawned on him the difference between school and real life and it’s been quite overwhelming for him. 
My son received Dla as a child for about 3yrs but when it changed over to pip he was awarded nothing. they basically said he can walk and talk so wasn’t entitled to anything. Again I wish I did more and appealed the decision but being naive with regards to it all I didn’t. After watching him struggle over the last few years I’ve decided to stand up for him and fight his corner and currently awaiting a pip claim form for him in the post. I’m going to get him a gp appointment for his adhd, depression and anxiety and see what other help they suggest he might benefit from. really sorry for the long post. If anyone can suggest anything else I can do I would greatly appreciate it.
thanks in advance x

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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,650 Disability Gamechanger
    edited May 2022
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    Hello @glh2913

    I wanted to wish you a warm welcome to the community, it's lovely to see you join us and thank you for speaking so honestly about what you have been through with your son. I hope that it has helped to write things down, it can often help us reflect on our experiences and can be quite theraputic.

    How is your son at the moment? It's really good to hear that he has a supportive peer group, that must have been a huge help for him throughout his schooling and comforting for you to know there were people looking out for him. I think as a parent of a disabled child, one thing you cherish dearly is knowing that you can trust those your child is hanging around with.

    Getting an appointment with his GP to discuss his mental health and other things sounds like a great idea, hopefully the doctor can provide some advice and support to help you both. Of course you are more than welcome to continue accessing the community too, as is your son if you think it would be beneficial for him to sign up.

    I hope the above comment about PIP has been helpful for you, and we do also have a PIP category that you are more than welcome to have a browse through

     

    I hope to see you getting involved more around the community. This is a very supportive and welcoming site to be a part of so I’m hopeful that you’ll find it to be a positive outlet. Feel free to have a look around and get involved wherever you’d like 😊 A few notable pages I’d recommend visiting would be:

    • The virtual coffee lounge which is one of our categories, in which we play games and talk about general subjects such as hobbies and interests
    • The recent discussions page, which shows an overview of everything happening across the community
    • The categories page, which shows a full list of discussion groups on the community

    If you have any questions at all then don’t hesitate to ask.

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  • glh2913
    glh2913 Community member Posts: 9 Listener
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    Thank you,
    It must have been around 2019 when he last applied. They never asked him to do anything or show them how he would do a task we just sat at the table and answered a few questions. I think this is where it may have gone wrong because actually going through the questions again properly it has highlighted just how much I do for him and I’ve done it for so long that to us it’s just a normal part of daily life.
    As a rule of thumb the top two buttons won’t be fastened on anything and he just pulls them over his head like a T-shirt. That’s how they go through the wash, ironing etc. if he needed a suit and tie for say a wedding then he would ask me to help. I also encourage him to try and do it or do as much as he can but just gets frustrated and says “can you just do it” he often skips meals, even if they have already been cooked for him or I’ll say don’t forget you dinner is in the microwave or fridge. He can’t peel potato’s and veg, his tremors spasms and muscle tone just won’t allow it and he definitely can’t chop them. More often than not I would have to cut meat up for him at dinner times, obviously depending what we have. He can use a cooker and hob but not a pan of boiling water again because of his tremors. What do they class as a simple meal? Id class it as a meat and two veg or do they class it as A sandwich? A microwave meal? He often tells me his joints hurt if muscles ache and I’ll have to ask him if he’s taken and pain killers. I don’t even know why I ask because I know he hasn’t because he wouldn’t be 100% sure what to take or how many or how often so will always check with someone first or ask for my help as more often than not it’s not same brand of meds. Washing and bathing I sometimes have to tell him he needs a shower because he pongs a bit. I think because if his depression he won’t wash for days on end. I cut his hair as he won’t go to barbers unless someone goes with him. Toilet needs, doesn’t really have any as such, except I now just buy him black pants. Verbal communication, with his family and peers he’s usually ok. They’re all aware of his struggles. 
    With a combination of his speech and anxiety strangers often find it difficult to understand him and his anxiety makes it much worse. He has very little attention span and often just looks off into the distance or at his phone during a conversation. Sometimes he won’t understand basic information being relayed to him and asks for my help. He has been on a familia bus journey the bus broke down and he called me in a blind panic so I had to get him to put phone on loud speaker so I could ask someone what the problem was so I could explain to him what to do. His anxiety just went through the roof. Reading is a problem due to his dyslexia and at a guess has the ready age between 8&10yrs. It was 8.5 when he left school. Following a journey he can get from a-b, to school and friends houses. Sometimes his anxiety is so bad he just won’t go out. Can’t do unfamiliar journey unles he’s with someone like girlfriend, friends or family. He doesn’t understand budgeting money. He claimed job seekers (uc) and took an advance. They refused his claim as he had done 2 days work with his uncle in the previous 2wks so closed his claim. Then he couldn’t log into his journal so didn’t understand why it was refused. I helped him fill that form out. So now he doesn’t bother to claim it as the stress is too much but I’m now having to pay the advance back. There is also a dispute ongoing with his bank and they’ve frozen his acc at the moment. So that’s stressing him out. Again I apologise for the long post was trying to answer the questions they ask.
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,650 Disability Gamechanger
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    Hello @glh2913

    Thanks for providing further detail :) 

    Has your son ever had any kind of involvement with your local authority's children's / young adult services team to see if he can have a needs assessment and potentially get some support in place?
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  • glh2913
    glh2913 Community member Posts: 9 Listener
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    @Ross_Scope

    I’m not entirely sure but I don’t think so. Most of the help was done through school, he did have speech and language therapy, physio therapy and occupational therapy. 
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,650 Disability Gamechanger
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    I see @glh2913, thanks for getting back to me.

    If you aren't sure, it might be worth giving this page about needs assessments a read to see if it seems familiar at all, and if you believe that a needs assessment may benefit him it could be something you consider referring him for :) 
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  • mj01
    mj01 Community member Posts: 3 Listener
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    I know this is a while after you initially posted but i have just joined. Your son sounds almost identical to my 17 yr old daughter. We get turned down for PIP every time, challenge it and then it's accepted. The advice I got was 'fill the form out based on her absolute worst day'. This was difficult as you spend your life looking at the successes and the positives. However, i am sure by the sound of it he would be entitled to similar to my daughter, which is the enhanced rate of daily living and the standard of mobility. 
    She too tremors due to her hand muscles going into spasm - she is lethal with a chopping knife! Even a sandwich is hard for her to make as she struggles to cut it in half. Buttons, shoe laces etc also extremely difficult/impossible. 
    I hope you have managed to get some help with this and that you are finally sorted out.
    MJ




  • glh2913
    glh2913 Community member Posts: 9 Listener
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    @mj01,
    hi and welcome. 
    Yes they do sound very alike.
    I’ve not been in here for a while but we’ve filled out the forms and just waiting. They’ve said he will need an assessment but they’re taking forever at the moment.
    will update when we get a date.
    thanks.
  • Sue_Alumni
    Sue_Alumni Scope alumni Posts: 485 Pioneering
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    Good morning @mjo1 and welcome to the online community. Thank you for sharing your experiences and joining in on this discussion thread and I hope you can see that we are an open and supportive forum.

    With regards to completing the PIP form I am slightly wary about the advice you received to concentrate on your child’s worst days.  Someone’s entitlement to PIP is assessed on the extent to which they struggle to carry out the various activities for the majority of time so you can show you have more bad days than good days.  If you concentrate on your “worst” days, you may be ignoring some days when you are still struggling, and can cannot carry out the activity without help and support. The DWP decision maker may conclude that you can then carry out that activity for the majority of the time. In addition to showing that you can carry out an activity for the majority of the time the PIP regulations also state that you should only be treated as being able to carry out an activity if you can do so "reliably". In order to be treated as being able to carry out an activity reliably you must be able to carry it out safely and to an acceptable standard repeatedly and in a reasonable time period.

    It is important to bear these rules in mind when completing your claim form so that you have the best chance of being awarded PIP. 


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