Spreading Wings by Annie Dewhurst

SPREADING

WINGS Our respite journey by Annie Dewhurst

Illustration for Rarity Life by Annie Dewhurst

There’s lots I’ve learned along this rare journey of ours. There’s lots I couldn’t be taught, or have imagined would happen. Now I know what really matters in life.

And now I know, really know, what tiredness is; the tiredness that comes with being a parent to a child with a rare disease and all the accompanying challenges that can bring. So a couple of years ago I decided it was time to let go a little more. Hannah, my daughter, needed to spread her wings in a safe environment, and I really needed a break. Hannah was 11 years old then. I was/am her constant in life; her main carer. Whilst I value the time I have with her, I really needed a proper break - one that didn’t entail clock watching. That once I’d dropped her off I wasn’t going to be rushing around, counting the hours down whilst trying to cram everything in that needed to be done before she returned.

Because that’s not a break.

I had a fleeting dalliance with ‘mum guilt' and then pulled myself together. After all, if she didn’t have her challenges, she’d probably be having sleepovers, venturing out with friends (as long as it wasn’t getting up to the things that I got up to in my youth!) having trips out with family or whatever. She’s been afforded none of that. So with no other support network to fall back on, it was time to request some regular ‘short break care’ from our local authority. Naturally, I pondered on the stuff like whether or not she’d like it, or would the staff communicate with me, or with Hannah being non-speaking would they still be able to understand her like I can. The list goes on… but, small steps first.

The process was surprisingly easy. An assessment was undertaken, a recommendation made, then it went off to a panel to be agreed upon. The options for short breaks were discussed with us beforehand and we (her dad and I) decided upon a group setting, rather than staying with a family or individual. We were then invited on a tour of a small respite centre than can accommodate children or young people with profound additional needs and got to meet the staff. It was lovely. There was even a sensory room! I felt she would feel ‘at home’ there, and that Hannah would be respected as an individual in her own right. Staff were interested in learning about her strengths and needs and were keen to know her likes and dislikes. I’d also scrutinised their OFSTED reports and had a list of questions. I felt reassured, like they just got “it”. By that, I mean the staff were experienced in meeting the individual needs of our often complex poppets, and that her glorious idiosyncrasies wouldn’t come as a surprise and of course they would ensure that stays were fun filled! Hannah was allocated a couple of nights per month. She’d have her own bedroom and a keyworker would complete all the necessary paperwork and co-ordinate everything.

Photographed by Ceridwen Hughes

First stop, some introductory tea visits. Hannah loves her food and this was a great way of her spending a couple of hours there, prior to any overnight stays. She and the staff could meet and she could familiarise herself with her new environment. It’s tricky going to new places or doing new things as, given Hannah’s profound disabilities, I can’t explain things to her. I can’t tell her that after school she’ll go for tea there and then I’ll pick her up later. However, her keyworker devised a social story with photographs. She then knew the drill.

The tea visits were successful. And then it was time for her first overnight stay. I met with the night staff who’d read my rather *coughs* lengthy “How-To-Look-After-HannahManual” and answered any questions they had. I wasn’t anxious when the time came; despite this being a first. I’d done all I could in preparation and felt comfortable with the decision. Worst case scenario, I was on the end of a phone if needed. And on her first night away I too had a treat and did something I hadn’t done for four years – I had a very nice meal out, which also included alcohol. Huzzah! And Hannah had a ball (without alcohol!).

At the time of writing this, Hannah’s had 2 overnight stays; so it’s early days. However, she sashays in there like she owns the place and seems decidedly uninterested in bidding me adieu. So, that’s a good sign. Maybe I dragged my heels a little; some people seek respite when their child is much younger. For me however, the time wasn’t right any sooner. Now my girl is being given the opportunity to spread her wings a little more and, come to think of it, so am I.

Photographed by John Bentley, Bentley Studios

Short breaks

The following link contains the guidance issued by the Department of Health & Social Care and is a great starting point to find out more about what should be on offer to you/ your family.

Short-breaks-for-carers-of-disabled-children

The charity Contact for families with disabled children also have some great information you can access online, link below:

Contact

Annie

Annie writes a brilliant blog on Facebook, which is full of her candid and often humorous insights to their world. You can find her by searching for ‘My kid loves broccoli.’ She has also written, and co-written, books, we’ve included the details below:

Cornelia de Lange Syndrome – A Shared Journey:

Shared-Journey

The (little) Book of Broccoli

Little-Book-Broccoli-Doodles-Journey-ebook

Hannah

Hannah was diagnosed with Cornelia de Lange Syndrome whilst still a baby. Around 85% of people affected by CdLS have a change on their NiPBL gene, but Hannah is affected by a change on the SMC1A gene which lies on her X Chromosome so she’s rarer than rare.

CdLS affects between 1 in 10,000 to 30,000 live births and is present at birth. There is no ‘cure’ and it can affect many parts of the body. Individuals may display physical, intellectual and behavioural characteristics. However, it can be widely variable and not all people with the condition will show all of the aspects. Hannah also has a formal diagnosis of autism. You can find out more about CdLS at www.cdls.org.uk.