Sunday 30 November 2014

Daddy's Girl

I'm not sure why or for what reason but at this particular moment in Rosie's life she is very much all about 'Daddy'. This is not to say no-one else gets a look in but we just seem to be bonding more than ever at the moment.

As soon as she wakes in the morning I hear shouts of, "Daddy!" Also whenever she hears my voice if she's not seen me for a while it's excited cries of, "Daddy, Daddy, Daddy" – She then comes shuffling over sticks her arms up, gives me her best doe eyed look and demands to be picked up for a cuddle.

A few days back I called home in my lunch break to speak to Rosie and we had the closest I've come to an actual conversation with her. Okay so I asked all the questions and the majority of responses were, "Yes" and "Daddy" but I really felt like we were communicating better than ever before. As our in-depth conversation was coming to an end I heard Karen in the background shouting out, "Rosie's kissing the phone!" My heart almost melted on the spot. I'm going to have my work cut out if I'm to remain firm and fair as a Dad because right now she has me completely under her spell!

As is plainly obvious little Budlington is already a Daddy's girl and I know my relationship with her is not unique to other Dads and their daughters, but there is something really quite amazing when you know the already strong bond is getting stronger right in front of you.

This is likely reading as a poor post as I have no idea how (or the words) to describe the bond and that feeling of the connection getting stronger. I had to try however as right now I want to shout it from the rooftops. I'm so very proud to call Rosie my daughter.

Thursday 20 November 2014

Power to the Parents!

Last month I was kindly invited by Viv Bennett, Director of Nursing at DoH to partake in their current ‘Week of Action’ by writing this post outlining the power and importance of parent blogging and what motivated me to start ‘The Future’s Rosie’. Today’s (Thursday) theme is based around supporting families and children, encouraging them to have a voice. I guess this is where myself as a parent blogger fits in.

When I first started blogging I really had no idea of the size of audience it may reach. I was nervous about spilling my heart out at first but I always set out with the intention that if it can help just one person feel more positive and/or less alone then it will be worthwhile. The motivation for me was born out of our early experiences at diagnosis and also my anxieties and ignorance about Down's syndrome. I didn't want parents facing the same fears and thinking it was going to be doom and gloom ahead – and so 'The Future's Rosie' was born.

After our BARTS blood test came back with a one in 12 'high risk' of Trisomy 21 we received very little in the way of support from our original consultant and midwife team. They assumed we would terminate the pregnancy if the amniothentesis we decided to have came back confirming Down’s syndrome (DS). Something that really gets my goat is how results are often referred to as high or low ‘RISK’. By using the word ‘risk’ it automatically brings in an element of fear with it’s negativity. A simple change of wording to high or low ‘CHANCE’ could have a profound effect on how someone hears and digests the initial news.

The biggest and hardest decision my wife and I faced wasn't whether we would terminate the pregnancy if the amnio confirmed DS but whether we should have the amnio at all. We had been informed that it carries a 'risk' (correct use here) of miscarriage. Many people may think "well if you were so sure you wanted to carry on regardless then why would you potentially risk the pregnancy?" I can understand that viewpoint but we are all individuals and it was important to us at the time (especially in light of our ignorance about DS) that we knew for sure in order to allow ourselves time to prepare. 

Once the amnio confirmed Down's syndrome I remember sifting through the outdated and somewhat clinical information available online and craving to know what it was actually going to be like living the day to day raising a child with a learning disability. I desperately searched for an open and honest opinion from a parent’s perspective. I wanted to know whether my baby would have a decent quality of life and what they might achieve, rather than a list of things they won’t be able to do.

Shortly after the diagnosis my wife and I contacted our local support group where we were soon offered contact with parents willing to offer words of support. This is an invaluable thing for many but equally not something everyone is comfortable with. Personally I didn’t feel ready to meet complete strangers, yet I was desperate to know what they had to say and this is exactly where blogging comes into it’s own – it offers people the chance to read a parents perspective at anytime, whenever they are ready and in an environment they are comfortable with.

I think established and trusted parent blogs could be used by healthcare professionals (HCP’s) in conjunction with current information resources to show, not only the HCP’s themselves, but also new parents what it’s like living the day-to-day. This would help parents deal with the news of a diagnosis and help them see past the initial fear and look towards a brighter future. In the cases of a pre-natal diagnosis having this information from a parents perspective could also help couples make a more informed choice about whether or not they feel prepared to continue with the pregnancy. 

There are more parents speaking out now about how a diagnosis is delivered and as a result I’m hearing of increasing numbers of stories where maternity departments are welcoming the idea of discussing ways to improve on this.

After our fairly negative early experience it’s important to mention that since then our other encounters with HCPs have been extremely positive.

Having a child with DS and connected health issues has meant that more interventions from an early age were required than with our two sons. Rosie currently has home and nursery visits from a Physiotherapist, Speech & Language Therapist (SALT) and an Occupational Therapist. All of the aforementioned have helped Rosie immensely and this kind of service has been invaluable to her development – without which we would be feeling somewhat lost.

Here are a few UK based parent blogs connected to Down’s syndrome that I would strongly recommend:

Wednesday 5 November 2014

Sorry seems to be the hardest word...

So after a few days without my family I sit here babysitting my Godson Marley and his sister whilst his Mum and Dad go out for a well earned meal – it feels a bit like a busman’s holiday to be honest! They are nicely tucked up in bed and so I thought what better time to try and pen down this much overdue update on our little Budlington. Every now and then things get a bit ‘on top’ and recently has been no exception. Being in full-time employment with a family of three young kids at home and fitting all The Future’s Rosie stuff in to boot does take its toll sometimes so I decided to cut myself some slack and lay low for a little while.

Anyway enough about me!

Rosie has remained busy despite her Daddy being lazy! She’s really enjoying Nursery now and as the new term looms we’ll be upping her mornings from three to four a week. It hasn’t taken her long at all to get to the stage where Karen and I can drop her off and leave almost immediately. There are no tears and very little apprehension (if any at all) and she is quite happy to give us a kiss, wave and say “bye-bye!”

For all that positive however, something that is becoming more and more evident is Rosie seems to have a rather big stubborn streak – I’ll refrain from saying where I think she gets it from though or my life won’t be worth living!

The first signs came a couple of months back. We have been consistently trying to emphasise the word and sign for 'sorry' when she’s been naughty or hurt one of us with her hyper-speed face grabbing move (which is still yet to pass unfortunately). At first we thought she may not really understand but as time moves on and her speech is developing through Nursery etc we realise she is just plain refusing. Just last week Rosie had a swipe at Karen and scratched her neck. Karen instantly and assertively signed and said, “No!” then asked Rosie to say sorry again using Makaton and speech but Rosie just sat there all doe eyed and in silence. So, Karen decided to change tact and ask her to repeat some familiar words to see if she really does understand. Here is an outline of that conversation – I’m sure you’ll concur after reading, that our little sweet 'butter wouldn’t melt' Budlington is indeed just a stubborn wee thing!

Mummy: Rosie say Teddy
Rosie: Teddy!

Mummy: Rosie say Ball
Rosie: Ball!

Mummy: Rosie say Mummy
Rosie: Mummy!

Mummy: Rosie say eyes
Rosie: Eyes!

Mummy: Rosie say sorry
Rosie: Eyes!

As I'm sure you can appreciate, keeping a straight and stern face at times like these is extremely difficult!

Anyway.... In other more entertaining news our little Bud has been enjoying the latest series of 'Celebrity Come Strictly Ice Dancing' or whatever it’s called on BBC 1! Below is a video of her dancing the routines with her dolly. I was particularly taken with how she seems to observe the moves on the telly then re-create them with her doll, including a well earned round of applause at the end.

Celebrity Dolly Dancing from The Future's Rosie on Vimeo.