Hugo de Savary's – living with learning disabilities.

Archive for the ‘Me and My Sister’ 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!

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 »

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!

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.

Meeting new people for the first time can be a harrowing experience, especially when the new person comes from the same family and can’t talk. Given the circumstances, Laura is a very proud and loving aunty, but I know at times she finds it difficult to accept the attention that I give our baby, possibly because she feels that our very close bond is in jeopardy due to these new circumstances – I have to say that this is certainly not the case.

Seeing all this from my sister’s perspective, she must be thinking:

“What the hell is he doing, giving that screaming baby attention – all it does is poo and cry, adding nothing to the conversation apart from interruptions – what’s happened to him? This isn’t the impatient brother I know!”

Now everything becomes clearer. The slight tinge of hurt that was felt when she asked to go home prematurely the night before, because she was finding it all too difficult to deal with her feelings, disappears. This is reinforced when I receive a very unexpected remorseful email the next day apologising for her actions – What’s happened here? This is not the sister I know either!

I can only conclude that my sister is a liberated genius – she’s not been hampered by social conditioning into suppressing emotions that she finds too difficult to deal with. Her open and honest approach to these feelings is refreshing and I can only admire her adult manner in dealing with this tricky situation.

Hopefully with time, things will become easier as Poppy rises to the challenge of rehabilitation by having her temporary ASBO lifted.

The baby’s arrival to this brave new world unfortunately clashed with my sister’s 30th Birthday party held in Lincolnshire – if only there had been a way of being teleported from hospital to the ‘event of the year’…For my 30th I’d had a Hawaiian Perma-tan fancy dress party and I think my folks thought it only fair that Laura had something equally wacky. Her chosen theme was ‘Pink with black tie’. She invited everyone from her home, The Old Vicarage, as well as all the other homes from Home From Home Care, with family and close friends of all residents also invited. Touchingly many people came from all over the country who had been important and played different roles in Laura’s life and I know it was very much appreciated.

It’s fair to say that my sister doesn’t like to be the centre of attention especially if there is a lead up over time, although secretly on a spontaneous out of the blue moment she craves it and rises to the occasion. From the accounts that I’ve heard, she performed to the latter, taking the microphone and doing an unprepared speech, firstly thanking everyone for coming and then telling them that she was now an aunty – I’d love to have seen it and am sorry I couldn’t be there. My thanks goes out to everyone who played a part in organising it.

To view the full HFHC! Winter 2009