If you are a positive parent of child with a severe disability

[ChilliMochaCoco]

How do you manage to enjoy life and keep positive ? I find life so full on, from being woken up several times in the night (DH does his lion share of parenting btw), to the getting ready for school, then going to work part time.
Then getting home in time for drop off. Having to always be with ds and then clear up and also having to parent a NT teen.
It feels relentless and a drudgery. My sister occasionally helps out - once a month. We applied for extra help but we're rejected.
There has to be a way to enjoy life so if you manage to enjoy a similar life and are positive, please share your nuggets of wisdom.
If you are in the doldrums, keep quiet, you might learn something here too.

I'm a parent in the doldrums sadly. Any positive parents about?

My partner is severely disabled so I can relate in some sense.

@ChilliMochaCoco When you say you applied for extra help but were rejected, what do you mean?

@ChilliMochaCoco was it DLA/PIP you applied for? If so I would recommend getting help to complete the form from an organisation such as Citizens Advice x

I left my job to become her carer and it has helped a lot. That probably sounds strange but removing some of the weight of expectations off my shoulders has made life easier. We get by on benefits and my husbands wage (high rate DLA + mobility, carers allowance, child benefit and universal credit comes to around £1.8k). My other half works full time and we own our home so I was surprised to get so much but when you have a disabled child there are certain things added on. I’ve reached out to charities etc for help buying things we need, last year we had a make a wish holiday etc. I think not being afraid to ask for help is a big thing. I’m currently training for a marathon so that gives me some time. I spend a lot of time researching my daughter’s condition and exploring ways to help her. One thing I don’t buy into is toxic positivity - you don’t have to find joy in a crap situation. I just try my best to live a full life in the other moments. Lots of my friends with similar children take antidepressants which helps them too. My faith helps me and gives me strength too. I would have a good look at what you could be entitled to as it might be more than you think. A local charity helped me do the forms etc. You have to stop waiting for things to improve and try and carve yourself a life that you can enjoy. Xx

We aren't entitled to many benefits - just DLA. We are in the middle squeezed category of life.
It was the extra support at home we applied for - people get a carer to help at home for a few hours but the social worker came to our house and did an assessment. It went to panel and it was rejected. I did say how I was struggling but I know we probably come across in the midst of it all, as still having a nice house etc.
DH is at work or at the moment helping his elderly parents.
I know we have food on the table, we are in safe place but it feels tough.
@Iamasentientoctopus I love the name. How do you stay positive throughout the day?
I should be getting ready to go to work 😊

Hi I'm going to be honest and I'm not a happy positive parent all the time. I do find that I can have moments of happiness by finding time to prioritise myself, even if it's just half an hour. I go for a walk in the mornings with music, Spotify has become a must have. I also prioritise my carers allowance to stuff that makes me happy (once again spotify). Life is hard with a disabled child and I think acknowledging that to yourself and allowing yourself to put yourself first for a little is incredibly important. I'm not completely selfish and I do also try to find moments where I can have fun with my kids. I think reducing your expectations helps. If the kids have fun with something but it only lasts 5 minutes then that's a win. I hope this helps you. Sending you hugs x

I'm a mum to a disabled child. In my experience, local authorities turn people down for support all the time. They turn people down, even when they know full well their decision is unlawful.

My daughter was turned down for an EHCP, despite the LA acknowledging in writing that she has SEND. I spoke to a solicitor who confirmed the LA's decision was unlawful.

I appealed, went through mediation and the LA then agreed my child was eligible. So don't accept 'panel says no'. I'm sorry to say you will need to fight for what you and your child needs. Whether that's with education, health, social care...

The charity Contact is very helpful. https://contact.org.uk/

Social services can sometimes let you down, they are very focused on cutting costs. They will try everything to fob you off.

I think it is worthwhile trying again. If your child has needs and you are struggling to balance everything else, they are legally required to help.

Maybe start by asking for a Carers Assessment for yourself and your partner.

It's a real fight to get the right care in place but it's worth it in the end.

I’m positive most of the time, but I think it’s important to decompress and say out loud how difficult things are sometimes - luckily I have a good friend who doesn’t seem to mind listening. I also find meeting other people in the same position and getting involved in SEND groups beneficial as you don’t feel so alone and you pick up bits of advice that can be very useful. I also set some life goals that aren’t focused on my DC - eg doing a course, achieving something at work, learning a new skill. There have been periods of time that have been rough, but overall I enjoy parenting DC, but he is an only so I don’t have the added pressure of parenting another child and it is just me and him so I don’t have to consider anyone else’s needs/opinions. I agree though that the support is very much lacking and anything to do with education/childcare is an absolute nightmare.

Did you challenge the LA’s decision not to provide social care support?

Depending on DD’s needs, have you looked at continuing care funding? Although this is often a fight to get.

It is relentless and never-ending. For us, ensuring all the possible support is in place helps. Pursuing that support is exhausting, but the support itself helps.

No I didn't challenge it. It took so long to get there even. Who would I need to contact to best challenge the issue or could support me?

What is carers assessment? I know we won't get Carers Allowance as that's means tested.

Support hours are very much dependent on level of need eg my dsd had them but she couldn’t be left unaccompanied for even 5 minutes awake and had a monitor when asleep, she got 10 hours. She now (adult) lives in a house with other severely disabled young people as her parents were burnt out. If you have a child who can be left in a different room with an iPad for instance you are unlikely to get extra support until they hit the age where typically you can leave dc alone

Carers allowance, you can’t earn over a certain amount or work over a certain amount of hours, but it’s not means tested as such. Your partner’s income, savings etc are not tested just your earnings.

Depending on how long ago you requested social care assessments, you might want to make new requests. On their website, Contact has model letters you can use. They also have lots of other information about social care assessments on their website.

If you formally requested social care assessments (a carer’s assessment for you, which is an assessment by social care to look at your needs as a parent carer, you don’t need to be in receipt of carer’s allowance, and an assessment of DD’s needs by the Children with Disabilities team) and the LA either refused to undertake assessments or assessed by refused support, you can complain. Then an independent review. If that doesn’t work, you can complain to the LGO if necessary.

Depending on specifics, JR may be possible.

Presumably DD has an EHCP? If you have to appeal the education side of things related to an EHCP, you can ask SENDIST to also look at social care provision. The recommendations aren't made in quite the same way as provision Ordered in F, but you don't need to worry about that now. You can get an independent social worker assessment if necessary. If you can’t afford independent assessments and they aren’t eligible for legal aid, Parents in Need can sometimes help fund them. And some social care provision is actually special educational provision so should be in F of an EHCP.

Being able to leave a child in a room with an iPad does not mean the legal threshold for support isn't met. Despite what LAs might want parents to believe. Sadly DC whose parents know the system, can advocate for their DC and enforce their rights get better support. It shouldn't be that way, but it isn't going to change anytime soon.

A Carers Assessment is carried out by Social Services to document how your caring role impacts on you.

It's your chance to put across where you think you could do with additional support.

Thanks I will look into these- when I come up for air!