Sunday, 26 July 2015

Remember me?!

Some of you may (or may not) have noticed that it's been a fairly epic break since I last wrote a post on here... I decided to take a little break to spend more quality (less distracted) time with my family. To be honest I had also lost my drive and enthusiasm for it a little, becoming exhausted trying to juggle a full-time job, family and a blog (and all that comes along with that). I figured a break from the blog was the best option – there was also the small matter of my beautiful wife turning 40 so lots of time has been spent preparing and celebrating that big occasion!

It's not to say I've been neglecting everything altogether as I've been involved in a couple of public talks and have also proudly accepted an invitation from the UK's leading Learning Disability Charity, 'Mencap' to become a 'Family Ambassador' for their incredible charity. This also came with the huge honour of being invited back to address a further 200 odd new high achieving Mencap staff at their annual 'Top Talent' day in Birmingham. I had the some-what nerve wracking task of taking to the stage after the London 2012 Paralympic Gold Medalist swimmer and fellow Mencap Ambassador, Jessica-Jane Applegate MBE. It's not everyday that happens and it's a moment I'll forever cherish.

The trouble with a pro-longed break from the blog is that I've found it affecting my confidence to write and be so open again, which is why the break has lasted longer than anticipated. Karen and the kids were away this week and I'd thought what a perfect time to try and write a post...instead I found myself channel hopping through mind-numbing TV and doing anything and everything but writing.

I've finally plucked up the courage so you'll just have to bear with me whilst I find my stride again!

Rosie has come on so much I don't even know where to begin. We've seen her walk unaided more and more, she's already on her third pair of glasses, not to mention the hundreds of little 'Rosie moments', ranging from the adorable to the hilarious! Perhaps I'll just pick up from the now rather than trying to cover everything missed in between.

**Tenuous link to blog title alert** Part of the many celebrations for Bud's Mummy's 40th involved a BBQ party at our house with close family and friends. We don't see our Southern relatives for weeks, sometimes months at a time and on this particular occasion it had been over two months since Rosie had seen her Uncles, Aunts and Cousins. I was so thrilled and a little surprised to hear her name them all when asking if she knew who they were. This shows a real improvement in her memory and confidence and its brilliant to see her progressing so positively in these areas.

Last week whilst Karen was out with friends I took the kids to my favourite local National Trust property 'Lyme Park' where they currently have a 'hunt the Gruffalo' theme in the vast gardens to the house. We had loads of fun on the way round and especially enjoyed the bare foot sensory trail. It was great to see Rosie approach the different surfaces below her feet with caution and then to see how she dealt with each surface – some she loved and some she flat refused to walk on! Rosie especially enjoyed the Rose garden and the video below shows her happily chatting away to the flowers and I'm convinced she introduces them to 'Daddy' at the end when she realises I'm stood there!

Finally, Rosie has now finished her first year at Nursery and continues to thrive in the environment. After a lot of thought and deliberation, as well as meeting with teachers and other professionals involved in Rosie's education, we have decided to defer her school entry in order to give her one more year in the Nursery. We all feel this will be the best solution to help give Rosie the best possible start at School in 2016.

Rosie-Rose-Garden from The Future's Rosie on Vimeo.

Thursday, 18 June 2015

Informed Choice

It has been kindly brought to my attention this morning that an image of myself and Rosie is being used in the USA for a 'pro-life' article fiercely campaigning against abortion.

I'd like to state that if you see any articles or images of myself and Rosie being used to back up an argument either for or against abortion then it is without my consent.

I strive to give people informed choice and nothing else.

I am in no position (or even wish to be) to judge people of their choices – all I hope is that when a diagnosis of Down's syndrome is confirmed pre-natally that parents can make an informed decision. The fact my wife and I chose to continue with the pregnancy in no way means we judge anyone on choices they make. If you come across such articles I'd appreciate a nudge.

The journalist in question has even gone to the trouble of cropping off the watermarks I have in place to let people know they aren't for random use!

Anyway....It's been a while since I posted on here – I will be writing an update on Rosie very soon I promise! In the meantime I'll leave you with a picture of our little Bud in her posh new glasses!

Thank you so much (as always) for all of your support.

Tom x

Wednesday, 11 February 2015

One small step for Rosie...

Wow what a few weeks we've been having with little Budlington! Those that follow on Facebook will be aware that her recent jaunts with her walking aid have reached a whole new level after we walked all the way to the local pub for a Sunday meal!

Rosie and I set off 20 or so minutes earlier to do the five minute walk and she managed the whole way without having to be carried once. Stopping every now and then to take in the sights and the excitement of the main road. I had worried it may have been a bit overwhelming for her especially with the traffic noise but she took to the challenge with erm.... both feet! 

We were a few minutes late for our table time but nothing could stop the feeling of pride I felt in seeing her laughing and smiling and being able to walk herself into the restaurant without having to hold our hands or be pushed in her pushchair – okay so she still had the walker to give her the support and stability but make no mistake, Rosie was doing this with her own efforts and enjoying every moment including the attention and encouragement of passing strangers along the way.

This was a couple of weeks ago now and since then we've been determined to keep her at it with encouragement not expectation. One thing we have learned about Rosie is Rosie does things her way and in her own time so any encouragement that appears too pushy and expectant has the complete adverse effect. 

Her speech and understanding have been coming along wonders again thanks to the efforts of Mummy and the time she is spending at mainstream Nursery amongst her peers, but ultimately with her one-to-one Lorraine. I hear so often people say how blessed we are with Rosie and yes I do feel that but I think our true blessing has come with Lorraine who is just the most perfect one-to-one for Rosie and who Rosie seems to bounce off perfectly – learning through fun and their wonderful connection. The progress Rosie has made since attending Nursery has been nothing short of amazing. I refer back to the walking frame and how we struggled for months to get her anywhere near it let alone using it, when suddenly seemingly from nowhere she's up using it and racing around the playground.

Today we had the news we've been awaiting for since, well, forever!

There I am sat in a meeting at work when I glance at my phone to see a missed call and a text message from Karen, saying: 

"Apparently Rosie has walked a few steps on her own at nursery with the Physio. I'm crying."

Well I tried, honestly I did...but I couldn't get a grip and the tears went and I had to just blurt out what I had just read! I was so overwhelmed by the news as it's another of my 'What if's' that is coming ever closer to being struck off! Needless to say by the time I got home to witness the few steps first-hand she'd had enough and just wanted a cuddle. I hope to be able to post a video soon of this but I'll wait until I witness it for myself!

Sunday, 11 January 2015

Strolling into a new year...

This is a very quick post to share the amazing achievement of Rosie over the festive holidays. It's been a wonderful break for Rosie and family – so much has happened and I have no idea where to begin. The time we had together was great including a week away in Brecon, Wales where we spent Christmas with Karen's family – 17 adults and kids in one great big house! I've chosen to take the easy option and keep the goings on over the holidays to ourselves. However one bit of news I HAD to share is that Rosie is now up on her feet and walking about with the aid of 'C3PO' her awful looking but brilliant walking frame.

We've really struggled to get Rosie to use this and eventually we decided she just wasn't going to go for that option. The physio suggested taking 'C3PO' to the nursery where there is more space and seeing if the encouragement of her one-to-one Lorraine and staff might make her think again about using it. Well sure enough a couple of days before she finished for the holidays Rosie used the frame and managed to walk about in the outside play area! I had seen a short video and couldn't believe my eyes but the moment didn't really hit home with me until I saw her use it in front of me.

We decided to take 'C3PO' with us to Brecon as the house had big corridors with wooden floors allowing plenty of space to explore. I've included a short video below where you can see Rosie walking with the frame. I was seriously beginning to doubt whether she would get to her feet and co-ordinate the feet and hands to balance, then suddenly out of nowhere she's up and off!

It's a fantastic start to the New Year and who knows we could have her walking by next Christmas! I certainly won't have so many doubts about her achieving that goal now.

Strolling from The Future's Rosie on Vimeo.

Thursday, 18 December 2014

I'm (kind of) standing – yeah! yeah! yeah!

This is likely to be the last post of this year before it's tools down and chilling out for Christmas. Two fairly major events have happened since I last wrote and seeing as they are both really positive it seems like a fitting way to end what has been a fantastic year for Rosie.

The first event has been touched on before by other parents of children with Down's syndrome who are further on in their journey but I guess you don't really know how it feels until it happens to your own child...

Rosie started mainstream nursery in September and as I've expressed in previous posts one of my biggest concerns has always been whether she will be included and accepted. One of the most amazing things I find when I see Rosie amongst her peers at nursery is just how accepting all the kids are. I dare say they may even be beginning to realise she is a little different as she has a one-to-one for starters and is unable to run off and play with them on her own. Any physical differences in Rosie's appearance don't seem to have any impact on the other children where they may be unsure or even frightened. There seems to be a natural instinct amongst a few in the class to gravitate towards her, perhaps even mother her slightly. It just goes to show that prejudice really is something taught to children through society and we could learn a lot by watching the unpolluted innocence of children interacting.

I seem to have gone off on a tangent somehow trying to paint a background picture – although it does tie in! 

In May last year I wrote a post called 'What if?' which touched on a long list of worries I had for Rosie. At the time of writing that post I was in a bit of an anxious and 'wobbly' place. One of the things on that list was, 'What if Rosie attends School and is the only person in her class not to get a party invite?'... 

Well I'm so proud to say that thanks to her lovely friend Demi at nursery, I can firmly cross that off my list! I was outside the school gate when I heard this little voice, I looked down and was handed this:

Now it may not seem like a big deal but to me it meant the absolute world. I couldn't stop smiling – this was my daughter, who I feared may be excluded in the early days of diagnosis, being well and truly INCLUDED.

It's difficult to explain the elation upon receiving it on Rosie's behalf and I dare say it was a fairly insignificant moment to Demi herself as she was merely asking her friend to a party – standard stuff for a three year old, however to me it was a very significant moment indeed, one of immense pride and also relief that Rosie is being embraced by her classroom peers. In fact since receiving this invite Rosie has had another one too which falls on the day after so she has a weekend of partying to look forward to!

The second event happened last week when we were at a friends house and all the kids were having a bit of a boogie (okay maybe the adults too). Rosie was busy bum shuffling about waving her hands and arms in perfect time to the beat which only magnified my own lack of rhythm! A short while later one of the kids noticed Rosie sneaking off into a larger space and shouted, "Look at Rosie!" We all glanced over and there she was, stood up on her own two feet. She must have been there for a good 10–15 seconds and she'd got to her feet unaided too. We all cheered and clapped which of course she loved! It was a lovely moment to witness and one which we can now build on.

As people often remind me when I get anxious about her lack of walking – Rosie will get there it will just be in her own time and on her terms!

I'd like to take this opportunity to thank you all for your support, words of wisdom and for helping spread the word that Down's syndrome really is nothing to fear.

It's been a fantastic year with so much achieved, from facing my own fears of public speaking by delivering a talk to over 200 of Mencap's top staff, a double award at this years MADS and the honour of being invited to join Mencap in the Lord Mayors Parade which even included a live interview on BBC One! These have all been amazing opportunities to get a positive message across about the reality of raising a child with Down's syndrome.

Rosie is exhausted from such a great year and is looking forward to a long rest! Wishing you all a very merry Christmas and a wonderful New Year!

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: