"It's a lonely journey": Parents caring for a child with disabilities share hidden pressures
As mental health awareness week continues, we're sharing experiences and advice - as charities in Sussex tell us it can be "isolating".
As mental health awareness week continues, parents and charities have been telling us about the hidden challenges of supporting a child with disabilities.
We've been telling their stories to highlight shared experiences as local charities warn it can be an "isolating" time for parents.
"It's a lonely journey"
Charlotte Hawkins, who lives in West Chiltington has four children - including triplets, two of which were left disabled after being born with bleeds on the brain.
She's described it as a "lonely journey":
"I have to pay £500 on a weekend for a carer to look after to look after my children for me to come for a night, to a party.
"You do become a bit isolated.
"You lose a lot of friends that you thought were really close friends of yours.
"Your circle tends to be other parents with children with disabilities, which I'm okay with, but my husband finds slightly more challenging."
"Things can be amazing, and they can be harder."
Vicky Baynton-Williams, is from charity Amaze, who support families across Sussex with children with disabilities and special educational needs.
They provide support and advice, from parent to youth groups, as well as coffee mornings and workshops.
With one daughter with Downs Syndrome, and a neurotypical son, she says certain things can be more difficult "as time progresses"
"It's realising that things are going to be different and you're on a different path.
"Things can be amazing, and they can be harder.
"For example, my daughter's going to start secondary school in September and that's just a huge change and a really big deal having to navigate what school she might go to, and negotiate and all the paperwork that surrounds it, and all the thoughts and feelings of her having to take that next big step.
"As life goes on and there are different changes, it becomes more pronounced that you have a disabled child and you have additional struggles."
She adds her son also feels the pressure:
"I think he's as a younger brother, he's always had to sort of step up and play the role of an older brother, because he needs to know that he can keep his sister safe.
"So for example, if we were out in the park he can navigate all of the play equipment really easily, whereas she has physical challenges that may make it hard.
"He might help her get up some steps or a ladder and he also keeps an eye on her because she's a bit of a wanderer and could just walk off.
"He kind of knows to keep an eye on her so he does definitely carry a bit of extra responsibility that a child wouldn't if they didn't have a disabled sibling."
A lot of children "will feel guilt"
Abi Tappenden is from the Children's Respite Trust, who help parents meet others in the same situation, as well as helping them access support and providing regular activity for children so they are able to have a break.
She tells us it can have a big impact on siblings:
"Being a child nowadays is quite is quite hard anyway, and then you add the pressure of having a sibling that's got additional needs.
"They might have additional care needs and through no fault of the parents, they're often left to their own devices and or they'll become a carer themselves because, if you see that your parents need help, you offer to help too.
She continued: "Having a disabled child in your family often has higher costs, so parents can be struggling and siblings of disabled children are often very aware.
"Siblings that I support are really just looking for a space to be themselves and have that personality outside of their sibling, and there's also people concerned about bullying at school and what people think of you."
"A lot of them will feel guilt.
"They understand that their sibling needs care, so then they feel like they don't want to be a burden.
"So making sure that they've got that space to talk about themselves and be the centre of attention, celebrate their own achievements, is really important for them."
Both charities are encouraging parents to reach out for support.
You can contact Amaze here.
You can contact the Children's Respite Trust here.