Guest Post from a Sibling - Charly Harris

This month, a number of quite fabulous and very powerful posts featured in the Britmums SEN round-up. The topic was siblings. I've received several heartfelt comments about that round-up including this one, from Charly a woman who has grown up with a brother who has a disability. Charly's account is wonderful in its honesty. It exudes love, but she also isn't afraid to outline her frustrations too.

Charly doesn't have a blog of her own, so I am featuring her words here on Downs Side Up.

David and Charly take a ride in an American cop car for his birthday

I read Hayley Goleniowska’s Special Needs round-up, “what about the siblings?” with interest. As a sister to a younger disabled brother, I have spent the last 22 years thinking, what about me?

Hayley’s post grabbed my attention for two reasons. Firstly, to hear of a parent’s perspective on how they think their disabled child’s siblings are affected by the situation and secondly, to read other siblings’ perspectives and find that they mostly align with my own. Reading Hayley’s and others posts started me thinking about the journey I have taken as David’s sister, the emotions, the experiences and how it has shaped me as a person and I decided to put pen to paper.

I’m going to start with my current position. David is 22 and in residential care at a college in Exeter, and my parents live in Solihull. I live in Nottingham with my husband. We are currently in the process of finding a residential care package for David near Solihull, as his college placement finishes in July 2013 and we can no longer support his needs at home.

What I found hardest as a sibling was finding that nobody else understood my position. My parents were exactly that, parents to a disabled child, which is a very different relationship to that of a sibling, regardless of any disability. Although my parents were constantly supportive, loving and devoted to both David and I, they couldn’t understand how it affected me, nor I them. Being a sibling is a unique position – you grow up with the realisation that your disabled sibling needs more care than most, and ultimately, you will be in a position of being their guardian, once your parents have passed on. Your childhood and your adulthood is affected from day 1 of their birth, and in my case, I would say for the better. Your parents’ life is affected from day 1 of their birth, but they have had their childhood.

There was no sign that David was disabled when he was born, it was only after 6 months that his development was noticeably slower and investigations were made. The day my parents found out, I was sat in the back of the car with David and (so I’m told) suggested that they sang “If you’re happy and you know it” with me. Perhaps I sensed that they were upset! David has never received a true diagnosis, and instead has an amalgamation of problems, including characteristics of cerebral palsy, epilepsy, severe learning difficulties, partially sighted and unable to walk. Despite this, he has the biggest personality of anyone I know and always makes those with him smile. From then on, David and I have maintained a bond that is probably closer than if he hadn’t been disabled. I have waited at the front door for the paramedics to arrive whilst my parents sat with him through his convulsions. I have waited for the outcome of each hospital appointment to see what new diagnosis he has been given, what treatment they will try. I have read his school reports, watched him in his school plays, dressed up with him for World Book Day (Where’s Wally was one of my favourites!) and tried to make his physiotherapy fun.

Although David doesn’t have a cognitive understanding equivalent to his age, his empathy has always been far beyond his years. If I’m upset, he’s upset. If I’m quiet during a phone call, he asks “what’s wrong, sister?” If I’m excited, he’s bouncing out of his wheelchair with happiness. It’s for this reason that I would do anything for David. Despite all his difficulties, and the affect it has had on my life, and our family, he is so loving. We often say that he is completely unaware of the stresses and struggles of life but that is a blessed relief, because when we are tired of the stresses and the worries, we can enter his world for 5 minutes to forget.

Having said all this, it’s not always a rosy picture of perfection – far from it! There have been times where I have wanted to (and have done) stamp my feet, scream and feel so angry that “it’s just not fair”. Why should I not be able to go on a “normal holiday?” Why does David always have to be the centre of attention? Why do I get stared at when I’m in a public place with him? Why can’t he feed himself? Why does he not understand what’s appropriate behaviour and what’s not? Most of all, my main feeling was not of jealousy or anger, but of upset and worry for my parents who are working so hard to look after him.

Other times, I have felt tied to David. I chose a university that was only an hour’s drive from home, so that I could be with them as soon as possible in an emergency. My future career choices, where I choose to live and establish my family are all, to some degree, decided by where David is living. My parents have always encouraged me to live my own life, and I have done, but my perspective is that I’d rather be involved at all times, to a lesser or greater extent, than to leave him entirely in their care and then uproot my life and my husband and children’s lives in 10 years, or whenever my parents can no longer take care of him.

Ultimately, being a sibling to a disabled brother does change your life, and the worse thing you can do is to try and pretend otherwise. Allow this opportunity to shape your life, and you. Don’t fight it. Enjoy the journey and know that these experiences have opened your eyes to a world you may never have known otherwise.

Big Brother Talks of his Love for his Little Sis with Down's Syndrome

Natty says she thinks everyone should have
a really big brother to pick them up
when they fall in the mud. 

Natty – ‘just’ one of my 4 wonderful sisters.

In some ways it is hard to put into words how I feel about Natty as I don’t think of her any differently to how I think of Mia or my other sisters – they are all ‘just’ my sisters, each one an individual.  I don’t mean ‘just’ like I’m taking them for granted, but rightly or wrongly I don’t think of, or indeed treat Natty any differently because she has Down’s Syndrome.

My wife, Leah and I had visited Dad, Hayley and Mia only a few days before Natty was due and all appeared as expected. We had a lovely day out, visiting Father Christmas and had left Cornwall for home, unsuspecting about what was about to happen. Dad and I talk frequently but not every day, so when we had not heard from them for a few days we were not too concerned, but as it dragged on a little we made more calls and eventually got hold of Dad to be told the news that Natty had been born with health complications and that she had Down’s.

It’s fair to say that I am my father’s son, and the characteristics extend beyond a fondness for red wine and chocolate éclairs, so I also have the same ‘digest and deal with it’ attitude that he possesses. As a result I don’t recall being upset for Natty, but instead tried to offer help and support, but I don’t think you can ever really say the right thing at a time when people are trying to comprehend an unexpected situation... We offered to make the journey to Cornwall to be with our family, but as we were travelling down a couple of weeks later for Christmas it was decided that there was not much we could do to help. This meant that we did not know all the things that went on in those 1^st few days of Natty’s life and Leah and I are reading these blogs with as much interest as you, so we can try to understand all that happened. Reading Hayley’s blog has made us understand why we felt a little in the dark about some of the events that took place around the time Natty was born.  We now understand the shock and worry that took over.

So when we got to meet Natty for the 1^st time, 3 weeks after she was born, I guess I had already come to terms with the news.  When I saw and held her she seemed just like any other baby – albeit one that needed a little extra help feeding (which would certainly change!). This mindset has stayed and I still don’t think of Natty any differently to Mia. Leah and I do all the things that Big Bro & Sis should do, like chase her and Mia round the park (and get them muddy!), introduce her to good rock and roll music along with a nifty few dance moves, sneak her a few extra crisps as a snack before teatime and give a leg-and-a-wing until we can lift no more. 

Natty has highlighted my awareness of disability and changed my perspective on some things – I find myself getting angry at even the thought of someone making fun of her, and many times I have played over in my head what I would say if I were to hear anyone with a derogatory comment. But I think it takes the situation to happen to you before you know how you will react, and I would like to think I would try to gently re-educated people with prejudices in a way they understand. But I guess it comes back to where I started with the opinion that Down’s does not make Natty different to you or I. Yes she needs to learn in a different way and yes it may take her a little longer than others to pick up some skills, but she can, does and will continue to do nearly all of the things that you and I do – often without the fear which holds us back - and I’m truely grateful that she has people around her who work very hard to enable her to be ‘just another’ sister.