Hugo de Savary's – living with learning disabilities.

Archive for the ‘My Life’ Category

Laura came home last week for her first Christmas of the year with my parents, it was great especially as she was on good form and Poppy absolutely loved seeing her. Although it would be nice for all of us to spend the Christmas break together as a family, like in the ‘good old days’, its testament to the support and care that she receives, that she wants to spend it at the Old Vicarage. I know across all our homes that those who choose to stay, have a very special and unique Christmas, although this is not always easy to accept, especially if you’re my mother!

The learning disability sector is going through massive changes due to the cuts and I’m aware that it has been several months since my last post. My lame excuse is 2 very young children, sleep deprivation and it’s being very much more about surviving rather than living.

As possibly mentioned in an earlier post, my good friend Thom a veteran father with 2 children told me that the second baby is at least ten times as hard on the parents as the first. I can confirm that in our little experience this certainly has been the case.

Read the rest of this entry »

We have a new addition to the family. Zara was born only 3 weeks ago (5lb) yet it already feels like months have gone by. We’re all absolutely delighted, especially Poppy.

Fortunately Zara’s putting on good weight and the general sleep deprivation has yet to hit the massive lows, all the same exhausting –  less for me and more so for Kirsten!

We’ll be planning to go up to Lincolnshire soon to see Laura and introduce her to her new niece.

Following my 2 previous posts on Southerncross and the Panorama expose, I did a  follow up piece that appeared in this weekend’s Sunday Times main section, describing the lengths to which HFHC is approaching care. Massive thanks go out to everyone who had their input on this. This was the full version before the final edit:

Thirty-two years ago, my sister Laura was born; soon afterwards, she was diagnosed with a complex learning disability. My parents were told: “She might live, she might not, but by the way, good luck.” At each stage of her life we have tried to get the best for Laura, but when it came to caring for her in adult life, the options available didn’t measure up to what we believed she deserved. So we created Home from Home Care, now a small group of residential care homes providing care for some 40 people from over 21 local authorities with epilepsy, autism, cerebral palsy and a range of other special needs. Read the rest of this entry »

Now 21 months into fatherhood and just under a year since my last post on this subject. Poppy is growing up fast and is no longer a baby, blossoming into a child that walks confidently and talks to the point where at any moment it could develop into proper verbal diarrhoea. She has turned into a little person showering us at different times with her love, anger, frustration and laughter. As we are settling into this routine, our new found relative peace is about to be shaken to bits with the news that Kirsten is pregnant for a second time. We are completely stoked with the news and very excited that we are going to be a family of 4 and that Poppy is going to have a sister – so we have been told, although nothing is being taken at face value, as Poppy was meant to be a boy. Fortunately this time round, I didn’t have to go through any genetic tests as I did last time (See Genetic Denial May 30th 2009)  which has made the pregnancy more relaxed and Kirsten hasn’t suffered from too much discomfort to date.

Read the rest of this entry »

For Lincolnshire the start of Dec 2010 will be remembered for a long time due to the inhospitable weather conditions, the worse since 1965. With over a foot of snow and freezing temperatures, hundreds of villages became cut off due to the impassable roads.

Home From Home Care has several specialist care homes in the villages cut off, which are supporting 24/7 some of the most vulnerable individuals in our society. Many have autism, high levels of epilepsy and other complex health needs, and the thought that our staff teams who are trained to support these people not being able to get into work didn’t bare thinking about.

What happened in the face of this potential crisis is one that my family is incredibly proud of and as the saying goes man never made any material as resilient as the human spirit and that is precisely what was witnessed over the proceeding days.

Read the rest of this entry »

It’s the time of the year when we start doing our tour of special schools and colleges around the country, aimed at parents who face the prospect of transition into adulthood for their children and for the first time in ages, my sister Laura joined the team. This was great as my mother, Laura and I hooked up in Derbyshire and covered an event together which is quite rare. Laura was well versed in her delivery as she had done a couple of other events with my mother over the previous 2 days. After Derbyshire, Laura came back with me to Bristol where she stayed a couple of nights.

We had an amazingly fun time together, the highlight was Bath Thermae Spa where we soaked up the atmosphere and relaxed for a couple of well deserved hours.  Although there has been much controversy regarding the Spa’s build, delivery and cost, that aside it makes the perfect afternoon treat. The piece de resistance is the outside naturally heated pool located on the roof overlooking the beautiful Bath landscape. The other attraction are the 4 steam rooms which kick out different aromas that can make even the most stressed person melt into a slumber. They also have foot spas which are essentially sinks sunk into the floor with hot water running water into them – being brutally honest, I have to say that I can’t quite see their purpose, as having a bath at home is probably a better experience, but this was Laura’s favourite– as they say, it’s the simple things in life!

As you may have noticed my blog has been relatively quiet this summer – in fact life’s been anything but. Although we didn’t go away, this slack was taken up by the silly season of weddings and  parties. We also got to see quite a bit of Laura as she came down and stayed with my parents for a break, which was good fun.   

Moving house, always a stressful time was compounded by an incompetent removal firm announcing 2 days before the big one that they had double booked… Just when the fatigue was fully setting in, Poppy caught Chickenpox, a virus that both Kirsten and I had caught when we were younger, but had since then conveniently blocked out the nastiness of it – an eye opener!

Now that it’s the Autumn Term, I look forward to blogging about the different issues of LD, as well as on the more banal bits of life.

My sister Laura and mother were in Bristol for the day, what better place than to try the Bristol Lido. It was originally created in the 1850s, but by 1990, due to being in  a sorry state it closed down. With the resurgence of Lidos flourishing right across the country, it reopened 18 months ago and it hasn’t been spared the surgeon’s knife,  with a full facelift to show off, what better place to have lunch with my sister.

The eating area is set over 2 floors overlooking the external pool, which has enough swimmers to make good people watching. The modern décor is interesting, with a contemporary Mediterranean feel to it and the menu reflects this.  On the ground floor the bar serves tea, coffee and cake as well as incredibly good value tasty Tapas which we all tucked into (£10 for 3 dishes). The first floor houses the restaurant which again incorporates the pool thanks to the glazed areas, the food served here is more expensive and I would recommend staying downstairs.

The Lido also offers spa treatments and makes a great treat for those in need of some relaxation. www.lidobristol.com.

A month ago when at a wedding, I met a medic who asked me what line of work I was in. In response I gave a very brief background of HFHC, that it catered for people with LD without mentioning my link to it. What happened next took me completely by surprise; the medic in trying to be humorous used what I can only describe as the crassest language imaginable to describe the people supported within the sector, and then proceeded to asked me how I found myself involved in it. Shocked, but not one to preach, I calmly answered his question whilst ignoring his inappropriate language. After a couple of seconds that felt more like minutes, the medic’s face went bright red and an apology was spluttered.

In response I’d like to say that I told him where to go, instead I told him not to worry as he wasn’t to know. Should I have made an excuse? In most circumstances I’d still respond in the same way, especially as I’m not always the most PC amongst friends and believe that you don’t dish it out if you can’t take it – but to strangers I’m on best behaviour. Naturally you would expect most people to take this approach, especially a doctor who should have known better when talking about such a sensitive subject.

Anyway, it is not my aim to tarnish the whole medical profession with the same brush as the majority are decent individuals. However, there are still cases of people with LD being diagnosed and  treated without sensitivity or dignity, which is problematic right across the country. So when the Royal College of Nursing creates some new guidance in this area, it’s refreshing – hopefully leading to a greater awareness.