Supporting Parents and Carers of children with a Visual Impairment
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“I just want the best for my daughter” Sue Costen

Meet Sue Costen, mum of 14-year-old Alice. Sue talks about Alice being diagnosed with Usher Syndrome and how getting in touch with LOOK provided Sue with vital emotional support.

When was Alice diagnosed with Usher syndrome?

‘Alice was born profoundly deaf. Just over a year ago, during a routine eye test at Specsavers, the ophthalmologist detected problems with her vision. Suspecting she had retinitis pigmentosa (RP), Alice was referred to great Ormond Street hospital. After doing some eye tests and about 4 months after going to Specsavers, the consultants told us that they suspect Alice has type one Usher syndrome, which affects both hearing loss and sight loss. The doctors are waiting for genetic confirmation, but they are pretty sure it is. At first, I thought Alice was afraid of the dark because of her hearing impairment. In the last three years it got really bad at night time. She would grab hold of me and shake and say, ‘I need the light, I can’t see anything’ I now feel really bad, because I was like ‘There’s nothing wrong with you, stop it, you’re just trying my patience and of course then the problems with her vision made sense when we got the diagnosis.

What has it been like for Alice and you since the diagnosis?

It’s been an uphill battle. It took me a long time to stop blaming myself for Alice’s hearing impairment. I was convinced it was my fault and we’d just got through that, and then, bang this happened.
After her diagnosis, the eye condition progressed rapidly. Within months she had gone from sight impaired to severely sight impaired. It took me over a year to accept that I could apply for more Disability Allowance money, due to her visual impairment, even though the social workers were telling me she was entitled to it. Once I made the decision, I completed the form and I attached 47 additional pages and to the front I attached a cover note in the size 18 font that Alice reads. I asked them, prior to reading the application, to put on glasses I’d attached that simulate RP and go about their daily tasks. 6 weeks later, I got a response saying Alice had got the additional funding. I truly do believe that the covering note and the glasses made that difference.

School has been a challenge as well. It’s only recently that her school have acknowledged that Alice has a severe visual impairment. Up till then, because she’s in a mainstream school with a visual impairment unit, she only had the support of one TA who has to work with three students. As it transpired, when she returned for the new year last September, she was with a different group of students so now works with a TA one-to-one the majority of the time. I’ve also had to argue to get Alice’s work adapted into an accessible format. We’ve had an excellent visual impairment team working with us and they’ve been really good at fighting her corner.

Did you receive any further support after Alice’s diagnosis?

At Great Ormond Street I spoke to a lady called Paula Thomas, who gave me some information about RP and told me about LOOK. I got in touch, and they’ve been fantastic. In the early stages, I was in email contact and on the phone with Charlotte the director of LOOK and Megan LOOK’s mentor coordinator almost daily. I even spoke to Charlotte’s mum to get a parent’s perspective. It was very helpful to talk to people who could understand what I was going through. Whilst this is about Alice, this does also affect me mentally and emotionally, because as a parent I just want the best for my daughter. It’s been a tough road and I wouldn’t wish it on anyone. Alice’s visual impairment has also affected all of the family. Alice’s little sister is 8 and she knew about Alice’s ears being broken, but she can’t get her head around the fact that her eyes are broken too. But She’s little and in time she’ll learn.

When you got in touch with LOOK, Alice joined the mentoring scheme. How did she find taking part?

When Alice was a mentee, we went for a weekend visit to the Royal National College for the blind (RNC) where LOOK have their offices. We got to meet Charlotte and Megan and Alice met her mentor Kirsty. Listening to Charlotte talking to Alice about her own experiences of losing her vision and them agreeing with each other, I was actually feeling, ‘someone understands.’

On the Saturday we went to the college itself and she clicked with a young lad straight away. They were attached to the hip for the whole of the weekend. On the Sunday she then told me ‘Mum I want to come here. I don’t feel different, I feel normal.”

What does Alice want to study at college?

Alice is an amazing artist. She wants to study art at RNC and she also wants to do IT and audio media. The next hurdle will be securing funding for RNC, but I will get whatever reports are needed and do what ever has to be done so she can go.

What would you say to other parents who are in a similar position to you?

There is support out there and charities like LOOK can offer help. Also, I’m more than happy to talk to other parents, because I don’t want others to go through what I’ve been through.

I’ve also learned to pick my battles to make sure that Alice has as stress free a time as possible while she prepares to take her GCSES. I now take a step back because I’ve realised organisations are there to support and I don’t have to always do everything.

If you would like to find out more about the support we offer parents and families email us at info@look-uk.org, or call 01432376314.

You can also visit our mentoring page, to find out more about our free scheme for visually impaired young people.

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