This be the Verse....

I remember being about 8 months pregnant with Xanthe , Theo had just turned two, I was wracked with guilt about bringing another child into the mix and turning his world upside down.   How could I share my love for him with another? Would things ever be the same

...these feelings of guilt are what many mothers feel when they think about or go on to have a sibling for their first child, it's that fear that we are not doing the right thing by our child, that they only get one shot at a childhood and our actions or inactions would ruin it for them...

It was a similar feeling in 2004 when we were told at our 10 week scan that we had a 1 in 4 chance of having a  child with Downs.  My first reaction was that we had ruined the children's lives, that things would never be the same, that the dreams and hopes and plans I had for my family were all shattered...



I have been thinking about this post for a long time, reflecting on the years since our family dynamic was changed so dramatically by the premature arrival of Daisy in December 2004, had we done the right thing?  Have they been scarred for life?  Would things have been better for them if they had not been the siblings of a disabled child?

I was very fortunate to be able to spend some time thinking about the needs of the siblings at a day run by our Children's Hospice recently.  It's given me some time to pause and reflect on how we are doing with the children, what would we have done differently...the thing I have learned more than anything though is that parenting per se does not come with an instruction manual.  We can have plans, intentions for the sort of parents we think we will be then along comes a curve ball to test our philosophy and approach and I guess it's how we deal with those curve balls and changes that shapes our parenting style and our children's experience as they grow up.

I can't change the external factors that have shaped and continue to shape our family  but I can change how I feel about them.  Today, as I look at my children I am going to give myself a pat on the back and say, actually, I'm not doing too badly;

So for what it's worth here's our muddling through, parenting approach to supporting our other children, the siblings.

We have never glossed over the facts, we have always been open and honest with our children when they ask about Daisy.  For example when Jules asked me if Daisy would get cancer I told him that I did not know that but the benefit of knowing that she is at risk of cancer is that we are probably more vigilant than other people and any cancer would be spotted early.  We have answered "is she going to die?" with, we are all going to die and none of us know when, the benefit of knowing that Daisy's life is shorter is that we are not going to waste a minute of it.  "Will she get better" - no, she will not, and that makes us sad just like it makes you sad.

There have been times when the children have complained that its not fair, that plans have had to be changed, that once again they have spent another monotonous weekend in a dire hospital playroom while their friends are all at Chessington World of Adventures.  Everyone's world always looks better than ours until you start to go below the surface.  When the children have complained , we have said "that is the way it is, no-one's life is perfect" and we try to focus on the positive things they have in their lives;  their parents are together, they don't have to share a bedroom, they have good friends, they have a house full of consoles and toys and nice things, having Daisy can also mean we can have treats to.  I remember Theo's cub leader telling me after they had come back from a day out at a theme park that Theo had said, "it's a shame we don't have Daisy with us today, then we could have jumped the queue!"

We are always going to feel guilty that we have somehow not got this parenting thing right, that the children have been exposed to a world we didn't want for them, that they seem to know more about TPN and mitrofanoffs than their times tables, that they have had to put up with people's stares or horrible comments.  However what I now know is that siblings have tougher shells than other children, unfortunately because they are learning life's lessons earlier on, but at least they will have a headstart on their peers, because as we all know, life is not a bed of roses.

Even without a child with additional needs we are going to have those feelings of guilt that we can't protect them from the outside world and all the bad things in it, that we have not done the right thing for them, but at least we are giving them the armour and ammunition to deal with whatever life throws at them.

I had a conversation with Andy's cousin a few weeks ago at a family reunion where we commented on how our oldest children had just grown up so quickly and she said she hoped she had given her children a childhood they enjoyed, that they would look back on with happiness.  It is this fear in this pressurised society that we live in today, we have to get it right, but parenting, of any form, does not come with a manual, there is no magic formula, we have to make it up and hope that at the end of the day the happy memories and good times outweigh the bad ones.

As a family are trying now to live in the moment - Yesterday is history, tomorrow is a mystery, today is a gift, that's why it's call the present. Enjoying this time of reasonable stability when we are not calling an ambulance every week or spending month after month in hospital.   When Daisy was born I worried about the future, what would happen, how would our lives be.  Then for a long time when she was constantly in hospital  I lived my life like this situation was temporary, that at some point it would change and get better and I found myself waiting for that time.  Over the past few months I have made that transition to just living for today, we are now making plans, enjoying life now, being practical but not worrying about the future.

 We did not know our life would be like this, so we have to go with the flow and not fight it.  No-one knows how their life will pan out, if you try and plan it out you are just going to set yourself up for disappointment as it will never match your expectations.  Now I'm just grateful for little things, and this is the philosophy for living we are trying to give the children.  Would we have been like that without our experiences to inform us, I doubt it.  We are such different people to the ones we were when we first became parents and then became parents of a child with special needs.  Our experience has changed us, helped us put things into perspective, and while there is sadness, regret and probably more grey hairs and lines than I should have, I truly believe I am a better person for this.

I also believe that our children are better people for having a sister with a disability.  I hate that phrase but it is true.  They have been exposed to a world that we did not want for them, a world that most other people have no experience of.  They have witnessed their sister at her sickest, they have seen deformity and disability of an extreme kind, they have helped when Daisy has had to undergo a painful procedure, they have made friends with children at the hospice then later attended their funerals.  I wanted none of this for my precious little bundles when they took their first breaths.  But the only way to grow as an individual is to have experiences, they have learned resilience, self reliance, empathy, skills that they will take into adult life.  They WILL be better people for having grown up with a disabled sibling, they have seen a world beyond their peers, they have had to grow up a lot quicker, but the skills this has given them will stand them in good stead in adulthood.

 I am proud of the fact that all of my children were able to make a cup of tea and a simple meal from an early age, even Jules at the age of 9 has been making me a cup of tea as I do Daisy's nightly IVs for at least the past year.  He was dressing himself for school from day one and the older two have London Transport off to a fine art.  They have skills for life far in advance of many of their contemporaries.  They also have an empathy with others, the little girl with Downs in Jules' class who the other children no longer play with, he chats and signs to her, he patiently explains things to her - he may not be the top of the class for academic work but he certainly is top of the class in emotional intelligence.  Sometimes their practical skills and pragmatic approach to life can come back to bite me.  This year on Mother's Day the only child I had a card from was Daisy.  I was upset about this but as they responded, "It's only a day Mummy, we don't need one day in the year to tell you we love you!", this is what we have told them when we have been stuck on countless special days in hospital, missing celebrations and time at home together, it's only a day....so it came back full circle!

The one thing Andy and I  really try and do is make time for each child as an individual, people who know me well know that I have always maintained that I have four children with special needs, and they each have their own needs but one of them (or maybe two) takes up a bit more of my time.  So the limited time Andy and I do have we try and share out to have some individual time with the children.  This has meant that sometimes we have left Daisy in hospital on her own for a a couple of hours, or with a carer, it's important for the other children to have the message that they matter as individuals and for Daisy to know that it's not all about her.

Yes sometimes we overcompensate, I buy that outfit that Xanthe was desparate for that I really would not have bought, the boys get yet another expensive playstation game.  We fit in fun times, we take the children to concerts or on treats but sometimes it's just the simplest things, like going for an evening walk with Theo after Daisy is in bed and the house is reasonably quiet.  The chances Andy and I have to spend time together are even more limited, but we know that for the sake of the children we must also spend time away from them and remember that we are people too.  That's where our hospice has been such a lifesaver, Daisy can stay overnight and Andy and I can get a "normal" babysitter and grab some much needed time together, even if it is practially falling asleep over a curry!

Of course it's one thing being an older sibling of a child with obvious disabilities, who all your friends thinks is cute and lovely, but what about when you are the younger sibling of a child who doesn't look like they have any additional need? One who can sometimes act inappropriately in public or in front of your friends? Can melt down and swear and throw things and break your stuff and call you the most vile things under the sun and take up all your parents patience and attention?   This is what it is like for Xanthe and Jules as younger siblings to their older brother with Aspergers.  Often they are on the receiving end of his verbal abuse or they are neglected when Andy and I have to divide our time up between managing Daisy's medical care and dealing with Theo's manic state.

I warn them now when I sense he is not in a good place so that they know to stay out of his way and we always try and separate the behaviour from the individual.  "It's not him, it's the autism", those tough skins are coming in handy as they try and ignore the insults and remind themselves that Theo is not being horrible to them, it is the anxieties, sensory overload, low mood that is making him kick out when he cannot find the words to express how he feels.

Theo, out of all Daisy's siblings, probably has had it the hardest.  He was 7 when she was born, he remembers life before Daisy whereas for Jules, who was 2, this has always been his life.  Theo worries desparately, he worries when she is in hospital, he worries when she is at home (how long will it last, when will she become ill again) and his worries and fears are exacerbated and magnified by his asperger traits, often causing him to lash out at his other siblings (but never at Daisy).  He wants to protect Daisy, make it alright, he is terrified of the day she might not be with us.  When Daisy got her new wheelchair at long last, we were so proud, at last she was out of a baby buggy, she was able to move herself around and have independence, she loved it, Theo hated it.  For him the wheelchair was a visible sign of Daisy's disability, he worried that people would stare at her and he couldn't protect her from it.

He has also fallen out of love with our hospice, from being the happy place he enjoyed going to, he now understands what the sunflowers on the front door mean when we go to visit.  A child is lying in the "special room", he fears that one day Daisy will go to the hospice to be in the special room, he knows that is where children go when they die.

On our journey with Daisy the children have had the opportunity to meet other siblings like them.  Our hospice has given them access to siblings days where they have been able to safely express their fears and know that they are not alone in feeling this way.  The children have all participated in local young carers programmes where they don't have to explain why their sister uses makaton or why their parents are often absent with her in hospital for long periods of time.  Sadly, our local Young Carers scheme has been the victim of budget cuts and now can only run a minimal service but this is where the internet has been invaluable as the older children have been able to access safe online forums for young carers and siblings like themselves.

Despite thinking that we have got some things right, I still can't help but feel guilty about the things I would like to change.  The stress of the last few years has taken it's toll, there has been shouting, there have been arguements, but maybe this is parenting anyway.  Who knows, without Daisy, would I still feel this guilt?

Some of our approaches to parenting come from chatting to other special needs parents and siblings over the years.  Getting to know my good friend Laura, parent to one of the oldest surviving young people with Costello Syndrome, made me determined to follow her example and ensure that we brought all the children up to be as independent as possible but the most independent had to be Daisy.  Laura's daughter, Linda was born in the seventies in Australia, long before the internet and gene testing and medical interventions.  She and her husband did the best they could and a few years later had a second daughter.

Both girls were brought up to be independent, not interdependent.  Their youngest daughter is married and has her own life and career and Linda lives in a group home with other young adults and a team of carers to support her and assist her in making decisions about her life and what she wants.  Laura is still very much involved but both daughters are living their own lives and see eachother as sisters, not carer/dependents.  I know Laura's intention in ensuring that Linda was able to live independently of her was to prepare her girls for when she was not around.

Conversely a very dear friend of mine continues to struggle with feelings of guilt that she doesn't want to be "burdened" with her adult sister's care when her mother is no longer around.  Being a sibling does not automatically mean that you take over the role of primary carer when parents are no longer around.  It's a difficult one as medical science means that people with disabilities are living longer than their parents.

 I remember when we moved to this house our neighbour Mary lived with her adult daughter, Jessie.  Jessie, the youngest of 7 was in her thirties and had a learning disability, severe epilepsy and diabetes.  Mary managed all of Jessie's care herself,  refusing to involve the siblings or any other support service. Her hope was that she would outlive Jessie.  When Daisy was born she confided in me, "don't do what I did, don't think you can do it all yourself, it's no good for you and it's no good for them".  Sadly Mary did not outlive Jessie, and suddenly her older brothers and sisters found themselves having to manage the care of their disabled sibling.  One of the sisters had to move back into the family home and a team of carers was recruited.  Jessie could not cope with all this change and a year after her mother she too passed away in her sleep.

There is no rule book, there is no best way, there is just the right way for your family.  We have tried (sometimes not as successfully as we would like) to be consistent in two things; Time & Talking.  Even when we have ended up having screaming matches with the children, talking about it afterwards is so important, and allowing the children to find ways to talk about their feelings, even if it isn't with us, is vital to help them make sense of things.  Similarly, giving them some of our time is essential.  Yes our live are busy but I learned very early on that if you want something enough you will make it happen, if you don't you will make an excuse.  We make use of the internet, texting, messaging, any way to ensure that wherever we are, however busy we are we can try and be there for the children.

The bottom line is we are still parents, these challenges are parenting challenges, with the added element of having a child  with additional needs - so factor in, increased stress, sleep deprivation, isolation and all the million and one other things that go with the job, but they all still see us as Mum and Dad, whatever the additional challenges thrown in, and I guess it's up to us to be the best Mum and Dad we can be given the circumstances.

Oh yes, the title of this post?  Well if you don't know your Larkin, have a quick look at this YouTube clip...

This be the Verse.

Some more useful links 

Sibshops - A US sibling support initiative which is available internationally, the site includes links to forums for child siblings, adult siblings and parents plus information on how to setup a sibshop programme in your area

Sibs - UK based charity representing the needs of siblings of disabled people.  There are separate Adult and Child Siblings areas

Young Carers - Online discussion groups & information for Young Carers, including sibling carers

Winstons Wish - UK childhood bereavement charity

(Please feel free to add your own links in the comments section)