PARENTS

Mums Speak Out About Parenting With A Disability And The Level Of Support Available

17/08/2015 10:26 BST | Updated 19/08/2015 08:59 BST

Amie Slavin was diagnosed with a rare eye cancer called bilateral retinoblastoma at the age of five, which meant she could only partially see.

However, in 1997 during treatment to regain her vision, the mother-of-two ended up losing her eyesight completely.

Discussing how her disability impacts her day-to-day life, Slavin said: "Everything takes a little longer, I have layers of things to think about that other people don't.

"The side effect of a disability is that often you find the default setting is that people assume you’re incapable."

Slavin, who is a single mum to Sophia, nine, and Gianna, seven, was talking to Rochelle Humes in an exclusive interview for AOL's original series, Being Mum.

bneing mum

When asked about the challenges she faces as a parent, Slavin said she faces the same issues as every other mum in the world.

"The challenges I face are mostly universal ones," she said. "It’s only that for me that they’re a little more so.

"I have to watch out for not being too overprotective, because I'm always thinking about the guilt I would feel if my disability led to [my children] coming to harm."

According to Best Beginnings, a charity set up to break down inequalities in child health, Slavin is one of 1.7 million disabled parents in the UK, mostly with physical and sensory impairments.

But although the number is high, mum Marie Andrews has found that the level of support available is scarce.

Andrews, who has a severe brittle bone disease, said since having her first child, she has struggled to find many emotional support services.

At three foot six, Andrews is wheelchair-bound with a severely twisted spine and her first child, Mark, was born 20 months ago by a surrogate.

She writes a regular blog for disability charity Scope about being a disabled mum.

She told HuffPost UK Parents: "Obviously I was worried about becoming a mum, but I've always been quite maternal and learned there's a way to do things.

"When I struggle to do anything, I look for support. But when I can't do something, it's heartbreaking.

"In terms of emotional support, it wasn't really there. There's the Disability Parents Network but that closed down."

Disabled Parents Network UK (DPN) was set up 15 years ago to support people with disabilities who aspire to be parents by helping them, their friends and their families.

The charity offered a support service to give information, advice and support; a forum for parents to access peer support; and an advocacy service to connect with local authorities to shed light on the issues parents faced.

DPN recently ceased all operational activity due to facing "extremely difficult financial circumstances" as stated on their website.

marie

Marie Andrews and her son, Mark.

To help with the physical difficulties Andrews faced, her friend told her about Remap, a charity that supported her to make adaptions to her home.

Remap is a national charity that designs and makes equipment to enable people with disabilities to live more independent lives, manage their own personal care and enjoy sport or hobbies.

The charity aims to enable people to move around more easily both in their homes and outside to look after their families.

Adam Rowe, CEO of Remap told HuffPost UK Parents: "Remap has a long history of helping parents with disabilities and is proud to be able make equipment for free that makes it easier for them to support their families.

"Parents can seek advice from Remap anytime, either before they have become parents or after. We often work with clients on more than one occasion as their needs evolve or the nature of their illness changes.

"Remap is unique because we help when there is nothing else available, quite often commercial products aren’t suitable and Remap can tailor something to the clients specific requirements."

To help Andrews with the day-to-day tasks of caring for her son, she also applied for Direct Payments through the government, which enables her to have a carer come to her home in the morning to help her while her husband is at work.

After being assessed by social services as needing support, parents with disabilities are able to receive Direct Payments to fund support services.

SEE ALSO:

To the Mother of the Baby With Special Needs - I Need You to Know These Things

Stacey Soloman Opens Up About Postnatal Depression: We Explore The Stigma And How To Cope

However, Andrews said the hardest thing about parenting with a disability comes down to the emotional strain she feels when people judge her and don't believe she can raise a child.

She explained: "People need to realise I have a disability but there's a way round things.

"People think you can't do things like drive a car but I can, and that's what I find difficult.

"I do have carers come in but they don't raise Mark. They go by what I say to do, they wait for me to say what he needs. The carer is guided by me because it's my problem.

"For the first few months I was able to hold Mark. Now I can't cuddle him and that's difficult for me but as he gets older he'll learn what I can and can't do. We're finding ways around it."

Although Andrews has received the physical support from Remap to help her practically in her home, she believes emotional and financial support is just as important, and it's lacking.

She added: "There's just too much judgement, there needs to be more support out there like a government scheme to visit someone who is actually becoming a parent to help them, and maybe even financial support.

"They're both really important."

Designer Mom Campaigns For Disability-friendly Clothing For Kids