Thursday, 14 August 2014

Glastonbuddy 2014

Well we're now back from our Summer holidays and I thought it was about time I wrote a post, so here goes...

A week and half ago we packed up our car filling every single available space with camping equipment and headed off to Glastonbury – sadly a month or so too late for the festival!

We broke the long journey and stopped over at our dear friends, Ric and Claire's near Bromsgrove. Ever the perfect hosts and it was great to see their lovely son Ruben and Rosie playing so well together. Rosie certainly isn't shy when it comes to meeting children she doesn't see a lot of or indeed children she's never seen before, this will be a valuable tool for her to take through life and I hope she continues with this confidence.

So onto camping... remembering that Rosie is only three and we are still relatively new to having a child with DS I guess it's normal (or at least I hope it's normal) to wonder and perhaps worry a little about how you will be greeted to places. Greenacres Campsite near Glastonbury was our destination and we couldn't have been made to feel more welcome, we were treated with complete normality which is so important given that this was to be our home for the next week.

Duncan & Mary who run the fabulous family friendly campsite had a genuine interest in our whole family and that normality is totally priceless to us. Alice (9) their daughter (shown in the picture below) expressed a huge interest in Rosie and over the the week became our Bud's new best Buddy. Alice asked so many intelligent questions – so keen she was to educate herself and find out as much as possible about Rosie and what it's like having a child with Down's syndrome. She regularly took Rosie off to the play area encouraging her to get up on her feet. Alice is such a delightful young girl and we can't thank her enough for the moments of respite she gave Karen and I as she looked after our Bud. We will most certainly be back to camp at Greenacres in the near future and wouldn't hesitate in recommending it to any family.

Rosie was no trouble going to bed and took to camping really well, we had done a few short trips first so knew she'd be okay but it still surprises me just how adaptable she is to environment changes.

Breaking up the journey again on the way back home we treated the kids (and ourselves) to a two night stay at a luxury spa hotel in the Cotswolds. Rosie is being extra clingy and super demanding for Karen's attention at the moment and I was a little apprehensive as to how it would work in the environment of a hotel. Not always the most family friendly of places!

Rosie's constant need for attention coupled with shouting and sometimes screeching in public is becoming increasingly harder for me to deal with. As usual Karen just takes it all in her stride but myself well, I've been having a few wobbles again. I've been battling with that mistake parents of children with DS often make – 'Looking to the future'. I know it's counter-productive but I can't help it sometimes, rather annoyingly it's in my nature to be a little anxious. I keep thinking to myself is this Rosie from now on? Will this be our life, constantly worrying everyone's tutting or feeling sorry for us? I'm sure its just a phase but it consumes me at the moment.

Whilst getting ready for dinner I took the kids to the bar area giving Karen time to get ready without Rosie's constant need for her. For the first time in a long time I felt that wobble come over me as I struggled to contain her neediness, screaming and crying for Mummy. I took her outside held her and cried. I know all of this is contrary to the blog title but I've always promised to be honest and yes for a moment there I stood and wondered if I can cope. Life isn't always full of the Friday smiles, to be fair it mostly is, but equally there are moments that I struggle with.

That said when we sat down for dinner she behaved impeccably and enjoyed dipping her vegetables in a sauce for her starters, showing signs of OCD with the dinner plate! (see video) – swings and roundabouts as they say.

Tomorrow Rosie has her most important role so far where she is to be a flower girl at the wedding of our friends, Nicola and Brian. I can't wait to share some photo's of Rosie from the day.

Table manners from The Future's Rosie on Vimeo.

Wednesday, 16 July 2014

Mencap Top Talent

Well I promised in my last post that I'd let you know how the talk went... It's been three weeks and I've just not managed to find the time for one reason or another. So I apologise for taking so long! Anyway I've just referred back to my notebook that I carry with me everywhere and here is what I wrote as soon as I got settled on the train:

"What a tremendous experience for me today. I have, for the first time in my life, addressed over 200 people in a public talk for the Mencap 'Top Talent' day in Birmingham. It really was a huge honour for me to be asked to talk from a Dad's perspective about life with Rosie and also a little about 'The Future's Rosie' blog. I also touched on my concerns of the negative way in which we were told the news that our baby has Down's syndrome and how steering conversations and cornering parents to terminate a pregnancy at the point of diagnosis can also have a lifelong mental effect on someone –one of torment and regret.

I was made to feel extremely welcome from the moment I arrived at the venue. Anyone who knows me well and has had to put up with me the past couple of months will know just how nervous I was about delivering this talk so a warm reception was just what I needed to calm my pre-talk nerves.

I have been truly overwhelmed by the positive messages and feedback from people in attendance and would like to thank Mencap for giving me this opportunity and helping me tackle a personal fear of mine. As I sat down afterwards I looked across the vast room then back at the stage and thought to myself, here is yet another moment in my life where I've been encouraged by Rosie to challenge myself. I would never have done this without her inspiration."

I had the pleasure of meeting and chatting with so many inspirational people from Mencap including their Chief Executive Jan Tregelles who I must thank for the picture below which was pinched from her twitter feed!

Tuesday, 24 June 2014

Little Miss Swiss

I think I've just broken my own record for the longest time between posts! During this time Rosie has been unwell with a chest and ear infection (for over two weeks). It's been a long time since she's been under the weather so she deserved to have a good run at it! I'm pleased to say she's much better now and as a result is moving on leaps and bounds – making up for that time lost nose blowing.  I've also been busy preparing and practicing for something I never thought I'd see myself doing in a million years... a public talk to 200 odd people for Mencap which takes place this Friday in Birmingham. I'm so far out of my comfort zone my legs are going to jelly just typing about it! I'll let you know how it goes (if it goes well of course!).

For those of you that have ever wondered where Rosie's surname comes from; it's of Swiss origin. I myself am dual national (well treble if you count England and Scotland as two!) and therefore Rosie is one quarter Swiss. The reason I mention this is that I wanted to share a video with you (below) of my Dad and Rosie enjoying a Swiss nursery rhyme together. Rosie seems to be embracing her Swiss roots well as I haven't a clue what they're singing about but she appears to have full understanding of what's going on!

What I love about this video is how Grandad just 'gets' Rosie, they always interact so well together regardless of which language they converse in! When she swipes for him (it's affection) near the end he doesn't even flinch.

Rosie has an amazing and unique bond with all of her grandparents and we feel very privileged that we have all of their support. It seems a bit silly saying that now – of course they all love Rosie to pieces but I have read a lot of bits and bobs around social media recently that have really made me appreciate just how lucky we are to have such genuine support from our parents.

Rosie also had her (now annual) Cardio check up last week which provided myself with a full on work-out trying to restrain her! It really isn't a traumatic experience in terms of pain, its exactly the same as having a scan when pregnant, same procedure, same machines just over the heart area. However Rosie has been through so much in her early days that she tends to get very distressed when any medical professional comes near her. Even a simple visit to the Doctor will end in a minor hysterical meltdown. As soon as the consultant had finished and we sat her upright she smiled and laughed, chatting away to him as if the previous five minutes of seeming torture hadn't even occurred!

I'm delighted to say that everything appears in order. After the last scan she appeared to have residual leakage from the valve but even that has cleared up so we came out feeling extremely happy and, as always, eternally grateful to the wonderful medical team that made all this possible.

Grandad Future's Rosie from The Future's Rosie on Vimeo.

Monday, 19 May 2014

What a team!

Well what can I say about yesterday?

I've tried thinking of suitable words; Proud, emotional, humbled, grateful, tearful... but nothing comes close to explaining how I really felt seeing everyone, runners of all abilities, in their green Running for Rosie & Friends 2014 T-Shirts, pushing themselves around the 10km Great Manchester course in blistering heat – all for South Manchester DS Support Group. Okay some may say "it wasn't THAT hot" or, "I've ran in hotter weather" however the problem lay with the fact the temperature had increased by at least 10 degrees to those everyone had been used to training in, so it was a big deal for the vast majority of people out on the course. The ambulances and constant flow of paramedics on bikes was all the evidence needed to prove that. It really was a titanic effort from 'Team Running for Rosie & Friends 2014' and the post run meet up and drinks in the sunshine were a very welcome reward!

The main achievement came when I realised we had smashed our initial fundraising target of £2500. At the time of writing this we are at a staggering £3180 and counting...! The donation page for this event is open for another 4 weeks so if you'd like to donate you can still do so by clicking this link:

Thank you so much to everyone who not only ran but to each and everyone of you who so generously donated to a cause so close to us, especially in these difficult financial times. Also a special thank you to Anytime After 9 Ltd for so kindly financing our brilliant T-Shirts!

In this instance I think photo's speak louder than words so I leave you with a selection of our images from the day which should hopefully illustrate the effort we went to as well as the fun we had!

Monday, 12 May 2014

Taking a stroll

In true Rosie fashion any worries and anxieties raised in last weeks post were swiftly put to one side (for a short while at least) when she walked across the room for the very first time with the aid of a baby stroller in front of 'Mummy' and her physiotherapist.

Karen quickly caught the moment on video and sent it through to me at work with the message "Look at our girl!”. I assumed it would be a clip of her standing up holding onto the stroller before dropping to her bum, but when I played the video (edited version below) and saw her walk across the room I'm a little red faced to admit that my jaw dropped and the tears came on, full flow whilst sat at my desk! I had to run out of the studio to compose myself and then proceeded to watch it over and over for the next five minutes! 

I really didn't anticipate seeing her do this anytime soon due to her legs and arms still appearing so weak because of her hyper-mobile joints. She has obviously moved on much quicker than I had thought as this huge step shows in itself the improvement of strength to both her legs and arms.

I'd like to end this post by sharing one of the simplest and most precious moments I've known yet as a parent...

Yesterday morning (as is often the case of a weekend), the kids all piled into our bed and we were chatting, having fun, giggling along with Rosie when Joe just suddenly turned to Karen and said:

"Thank you Mummy".

"What for?" replied Karen.

"Rosie" he said.

Rosie-Strolling from The Future's Rosie on Vimeo.

Wednesday, 7 May 2014

Ever felt like pulling your hair out?

..."Might be a bit of a struggle in your case Tom!" I hear you say. However for Rosie things are a bit different. To be honest with you this post doubles up as a cry for help/advice/reassurance as much as anything else.

We have started to notice recently that Rosie's hair has started to thin at the front and a few scabs have appeared in the same area. It hasn't been until the last couple of days we've really noticed she has definitely lost hair and is developing a bald patch.

It was difficult to tell for sure how this was occurring until yesterday when our suspicions became evident – Rosie is pulling her own hair out. Karen came into the room and saw Rosie pulling at her hair and noticed a big clump of hair lay out in front of her.

As you do (not always the best advice) but instinct often takes you to Google to see what the cause may be. I'd love to say she's trying to look like me but joking aside it's clearly more concerning.

We had two thoughts initially, one that she may have an irritation on her scalp (hence the little scabs) and she's trying to attack it, itch it but grabbing at her hair too OR she has some deeper underlying issue. Google took me to something called 'Trichotillomania'.

From "Trichotillomania (also referred to as TTM or "trich") is currently defined as an impulse control disorder but there are still questions about how it should be classified. It may seem to resemble a habit, an addiction, a tic disorder or obsessive-compulsive disorder. Most recently, it is being conceptualized as part of a family of "body-focused repetitive behaviors" (BFRBs) along with skin picking and nail biting."

This morning Karen took Rosie to the doctors and both our suspicions were discussed as a possibility. Obviously our hope is that she has nothing more than a rash and the antifungal shampoo she has been prescribed will clear it up, relieving any irritation, however we have to think of the possibility of it being a behavioural disorder of sorts and how we might help distract her, prevent, or teach her to stop before it has a permanent lasting effect on her hair. Obviously the fact Rosie is very young and has Down's syndrome makes reasoning with her almost impossible at this stage.

If you have any experiences of something similar, any advice or better still reassurance it would be very much appreciated!

Tuesday, 29 April 2014

Spring into action!

It's been a busy but brilliant couple of weeks since I last posted an update on here. The long Easter weekend was spent with Uncle's, Aunts, Cousins and grandparents as we descended on the London branch of the family. On Good Friday us men were left to fend for ourselves (and the kids) whilst the ladies took a well earned break and treated themselves to afternoon tea at the Savoy!

In typical male fashion, weeks of meticulous planning for the 'men and kids' day took place... okay so we spent 10 minutes deciding we can't decide what to do, jumped in the cars and 'winged it' ending up at a farm in Lee Valley which proved to be a great success.

Needless to say there were lots of animals which gave me the chance to do some much needed practice with Makaton signing – something I do struggle to use (and remember). I keep persevering but it really doesn't come that naturally to me if I'm honest. Bud knows far more than I do which is great testament to the time and effort Karen puts in with her.

She wasn't keen on any of the animals at first as she would point to them and shout, "No!" before turning her head in the opposite direction in a rather stroppy manner. It was funny to witness but I was mindful that I didn't want her to be in fear of them so kept her at distance until she felt more comfortable with the environment. It took a Grandad and an Uncle to convince her it was okay and before long she was feeding a pony some grass and stroking it's nose!

In less positive news Rosie has recently re-introduced her vicious face grabbing, hair pulling and general attacking of the face. Whilst it seems nobody is exempt from the wrath of the Bud, the majority of it is felt by Karen and Rosie's friends of similar age – especially 'Layna' who spends a lot of time with Rosie. They'll be playing together nicely then suddenly Rosie will grab her hair. Thankfully, 'Layna' doesn't make a fuss and will just wait for adult intervention then carry on playing. Karen received a swipe the other day which scratched the surface of her eye causing a lot of discomfort so we are having to be extra vigilant at the moment. I'd like to say it's a show of affection as we previously thought but it's obvious now by her face that she knows it is wrong, it's clearly a form of attention seeking but how to resolve it is giving us a few headaches (and Karen sore eyes!).

Jumping back to better news again...  For the past few weeks Rosie has been getting herself into a crawling position, holding it for a while then falling back to her bum. A couple of days ago she was in this position again and suddenly attempted to crawl which ended up being a kind of half crawl half bum shuffle – I really can't explain it very well so I've included a video below!

Then only yesterday to our amazement she crawled properly for the first time, again there is a video of her doing this below. She was very pleased with herself and rightly so – it's a wonderful achievement and one which we're all very proud of especially as we thought she would bypass this stage altogether.

New Crawl from The Future's Rosie on Vimeo.

Rosie's first crawl from The Future's Rosie on Vimeo.