Cerebral palsy

poppy12345

Staceyjean wrote: »

From what I am reading it may be that I am able to claim disability living allowance. It seems that it is not means tested? Most of my income comes from maintenance payments from the children's father who has no contact with them. I don't claim tax credits as my income is too high.

I am hoping for some support at school and help with stimulating him at home. As their father has no contact with them and I have no family I struggle with logistics. E.g. hospital visits, I don't think I give my other child enough attention.
I have no qualifications and am not really good at anything so I would like someone with a more educational background to give him and his brother a better life than I had.
I love to read, especially history and world politics so am reading to them as much as possible, and we visit museums which they love, and we go out as much as we are Abe. But I have little to offer them.
In terms of finance I am relying on support from someone who I would rather not rely upon. I suppose he would give me extra money but it is not just about money and I am trying to break free of the financial dependence. But the way things stand I have more chance of enrolling in Hogwarts than getting any sort of qualification.

To claim DLA for your child you will need to prove he/she needs more care/attention or supervision than a child of the same age who doesn’t have a disability or health conditio. You'll need evidence to support a claim too. It is not means tested.
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/disability-living-allowance/

pmlindyloo

Staceyjean wrote: »

From what I am reading it may be that I am able to claim disability living allowance. It seems that it is not means tested? Most of my income comes from maintenance payments from the children's father who has no contact with them. I don't claim tax credits as my income is too high.

I am hoping for some support at school and help with stimulating him at home. As their father has no contact with them and I have no family I struggle with logistics. E.g. hospital visits, I don't think I give my other child enough attention.
I have no qualifications and am not really good at anything so I would like someone with a more educational background to give him and his brother a better life than I had.
I love to read, especially history and world politics so am reading to them as much as possible, and we visit museums which they love, and we go out as much as we are Abe. But I have little to offer them.
In terms of finance I am relying on support from someone who I would rather not rely upon. I suppose he would give me extra money but it is not just about money and I am trying to break free of the financial dependence. But the way things stand I have more chance of enrolling in Hogwarts than getting any sort of qualification.

First of all stop putting yourself down and secondly remember that your children's father has an obligation to support them financially so take the money and use it for the benefits of your children.

You have taught your son to read and be interested in Maths. You read to them and take them out to museums etc. Doesn't sound as if you are a bad mother at all. Quite the reverse.

I can fully understand how difficult it is to work and fit in hospital appointments. You seem to be on a good salary and with good financial support from the children's father. So, any possibility of your cutting down hours at work - going part time for example?

Do get in contact with SCOPE and see if they can help with local support.

And please stop worrying about your children's education. You are doing fine. Keep in regular contact with the school and 'nag' them and your doctor with getting speech therapy for your son. Communication is important so concentrate on this aspect.

I am a great believer that children do not need knowledge as such but rather a thirst to find things out and explore. You seem to be doing all the right things to ensure this.

Alice_Holt

"I have no qualifications and am not really good at anything"

Please don't be so hard on yourself.
A lot of depends on confidence - once you regain this, you may surprise yourself.
Having done a few Open University courses - I've meet some very impressive "late developers" , who have overcome a disadvantaged background. It's more down to determination, self belief, perseverance, and getting a different perspective on your situation.

There is some good stuff available on the internet:
http://www.open.edu/openlearn/free-courses
http://www.open.ac.uk/courses/modules/y032

https://www.ted.com/talks

https://www.futurelearn.com/
https://www.futurelearn.com/courses/play

Edit: Cross posted with pmlindyloo's excellent post.
Other useful organisations may include -
Carersuk - https://www.carersuk.org/
Contact - https://contact.org.uk/
Your local college.
Gingerbread - https://www.gingerbread.org.uk/

Good luck.

Staceyjean

What lovely posts, both alice and lindy. Thank you.
The boys father is incredibly intelligent and articulate. The boys seem to be taking after him. He is very well situated financially and would give me what I wanted. But he wants no part in their lives but he does want them to have private education which I am unsure about. I am not sure whether the other parents at a posh school would look down at both my son's and I because I didn't have a husband or high flying career. You cannot force someone to parent a child.
I am most concerned about the communication as it a fundamental skill. Handwriting could be overcome with computers etc and he is able to type and is fairly articulate with his stories. Maybe it is early days as he was premature and is still the youngest in his class so is not 5 until August.
What does seem to be helping his speech is singing. We make up songs or all sing together. They love walking down the street singing to the extent the other mums call them the von trapps.
I want to know what help to expect from the school and what I could ask for. I am worried about asking for too much in case we get a social worker. My own life revolved around social workers and the care system and would hate this for my own children
I am not employed so most of our income is from their father, so no chance of reducing hours. I would be unable to work because of childcare and I am pretty thick. Hence no qualifications!
I am trying to get away from the financial dependence that I have on their father as it is degrading. But I cannot find a way out of it without the children suffering financially. So it is not so much finances that are a problem, it is surrounding them with cleverer people than I who are able to give them opportunities. Sometimes my love does not seem enough.
I realise that this is all my own fault but am trying to make things better.

Mojisola

Staceyjean wrote: »

The boys father is incredibly intelligent and articulate.

The boys seem to be taking after him.

I would be unable to work because of childcare and I am pretty thick.

Is this what your ex has told you?

You don't sound thick in your posts!

If the boys are also intelligent and articulate, it's down to environment as much as genes - and you're the one providing the stimulating environment.

Once you've got in contact with Scope and the school and talked through your son's progress, why not look at putting some of that spare money into getting yourself some training or qualifications?

xylophone

Had you thought of study through the Open University?

https://www.treloar.org.uk/school/ may be worth a look.

Alice_Holt

Mojisola wrote: »

You don't sound thick in your posts!

If the boys are also intelligent and articulate, it's down to environment as much as genes - and you're the one providing the stimulating environment.

Totally agree with your comments, Mojisola.
It's often down to determination, self belief, perseverance, and getting a different perspective on your situation.

It can be difficult to not to internalise repeated negative opinions / comments / and people trying to put you down. But, with emotional resilience it can be done.
The OP must have emotional resilience in order to have the determination to make the best life for her children. I hope she can also find a path that brings a fulfilling life for herself.

sulkisu

You don't sound thick at all, on the contrary you come across as very articulate.

As for the financial situation, I am not surprised that you don't want to have to rely on their father. Yes, he has an obligation to provide, and he is, but a parent who makes it clear that they want nothing to do with their children cannot genuinely be relied upon. For private school - if it works for you (and you can get the money for fees up front) then do it. But to be honest, if it doesn't sit well with you, for whatever reason, then it should be your decision not their fathers.
With your income and savings, you can afford to spend time developing yourself - either studying, volunteering or working part-time to enhance your skills and employ-ability. Their father has a responsibility to support his children but he has no obligation to support you and if things change (loses his job, decides to pay you less or the bare minimum, meets a new partner who doesn't like the current arrangement, your children reach 18 etc) you don't want to be left high and dry.

LocoLoco

Staceyjean wrote: »

What lovely posts, both alice and lindy. Thank you.
The boys father is incredibly intelligent and articulate. The boys seem to be taking after him. He is very well situated financially and would give me what I wanted. But he wants no part in their lives but he does want them to have private education which I am unsure about. I am not sure whether the other parents at a posh school would look down at both my son's and I because I didn't have a husband or high flying career. You cannot force someone to parent a child.
I am most concerned about the communication as it a fundamental skill. Handwriting could be overcome with computers etc and he is able to type and is fairly articulate with his stories. Maybe it is early days as he was premature and is still the youngest in his class so is not 5 until August.
What does seem to be helping his speech is singing. We make up songs or all sing together. They love walking down the street singing to the extent the other mums call them the von trapps.
I want to know what help to expect from the school and what I could ask for. I am worried about asking for too much in case we get a social worker. My own life revolved around social workers and the care system and would hate this for my own children
I am not employed so most of our income is from their father, so no chance of reducing hours. I would be unable to work because of childcare and I am pretty thick. Hence no qualifications!
I am trying to get away from the financial dependence that I have on their father as it is degrading. But I cannot find a way out of it without the children suffering financially. So it is not so much finances that are a problem, it is surrounding them with cleverer people than I who are able to give them opportunities. Sometimes my love does not seem enough.
I realise that this is all my own fault but am trying to make things better.

Stacy, I'd suggest getting in touch with an organisation such as Contact A Family. They can give you all sorts of advice on educational matters, healthcare, benefits, childcare, groups in your area and so on, as well as specific groups relating to Cerebral Palsy. They're a good starting point in this sort of situation as it can be very complicated and overwhelming in the early days.

My son is 16 and has complex needs. When he was younger I felt very much like you - that he wouldn't thrive with me because I wasn't a good enough parent, that I couldn't give him everything he needed, I thought I was stupid and that he'd be better off with someone else (to the point that I thought about putting him in foster care). All of that was really my lack of self esteem talking - none of it was true. As the years have gone on I've proved to myself time and time again that none of that is true; I'm a good mum and I've done a good job by him. He will always have difficulties; what's important is that you learn how to live a life that's as full and enjoyable as possible, regardless of any problems that come up along the way.
I'd suggest you get yourself a big notebook and divide it into sections. Head up each section with something you're worried about - education, communication, social skills - whatever it might be. And then set about becoming your own expert. There are literally thousands of sources of information. It can be very overwhelming but focus on what you want to learn more about. The more you understand your son's condition and how best to help him the more confident you'll become. I'm a totally different woman to the one I was ten years ago and I've got my son to thank for that.
Try and link up with other parents in your area, if you can. There are usually groups or get togethers for parents of disabled children, or play/sports clubs for disabled kids (although if you're in a rural area you might need to go quite a distance to get to them). I've found other parents by far the best source of advice and support over the years, and meeting parents with older kids who have your son's difficulties can be reassuring: when you see a fifteen year old with CP sitting exams, swimming and going horse riding with their friends it helps you to see that the future can be really rosy
But anyway, as a first port of call I'd suggest Contact A Family, they can give you a lot of advice and support and then you can take it from there

https://contact.org.uk/

GlasweJen

I think it can be hard when you're not sure if it's his disability or his age that's holding him back at the moment.

Handwriting is a tricky one, I work with a doctor who's handwriting is appalling and he's a top surgeon who reconstructs eye sockets and faces beautifully. The man is a genius in the operating theatre but god help anyone trying to read his prescriptions! I think as long as it's legible and he's able to write without pain then don't stress too much as that will just stress him out too and he is only little.

Speech is obviously important but input from speech and language can be invaluable and you will be able to help at home.

You sound like a great mum who is doing everything she can. With cerebral palsy there are a lot of unknowns and things can do undiagnosed until school age when problems crop up so make sure the GP is aware he is struggling. I have a friend with CP who was 16 before anyone realised that she was missing half of her visual field- she thought it was normal and everyone else was so focused on her mobility that they didn't think to check!