Saturday, March 31, 2018

March 18 Round Up

Oh goodness, I honestly thought March would make up for January and February, but nope! So, deep breath ......

We had our annual foster review. Three years we have been carers! The last year has been the hardest of the 3, but not enough to make us close the doors and say enoughs enough. Mind, we nearly did!

Snow - lots of it, which included a couple of working-from-home snow days, so that's always a plus :)
Scrapping weekend
Rome
Fosterling off on a school trip
Fishing
Michaelangelo exhibition at the Ashmolean Museum in Oxford
Girls evening out
Martha's Quiz
Jeff and I volunteered to run the bar for the Quince Players - feel like I've stepped back 35 years!
Saw Dad and Sandra
First panto prep meeting - have agreed to be the Production Assistant. I know, mad!
Spot of day care for fostering, first time, takes me back to when the 3 boys were little!
Car show Wheels Day
Ideal Home Exhibition

But, I have looked at my diary for April and it's looking good - as in quiet :)
Friday, March 30, 2018

Weekend break to Italy March 18 - Part 4

Last post on Rome as it was a short break:
Saturday:
Another yummy breakfast
Basilica Santa Maria del Popolo (strange emotional experience in there)
Fontani di Trevi - again! So Jeff could buy a pair of shoes
Campo de Fiori
The Pantheon
The Termini Bus Station - so I could buy a bag (which sounds exciting, except I bought one for work!)
Bus tour
Pizza at Caccagna again - this time without handsy drunk Englishmen :)
Pot of tea back at the hotel
Only 14000 steps
santa maria del popolo
1. Piazza del Popolo
2. Piazza Navone
3. Awesome ornament on outside of house
4. Campo de Fiori
5. Jeff just loved this weird little car :)
6. Poor Jeff, he's still recovering from paying 5 euros for a 4" high coffee!
7. Every time you turned a corner there would be something old/different/unusual - but this elephant was one of the more unusual!

Thursday, March 29, 2018

Weekend break to Italy March 18 - Part 3

Thursday morning after landing at Fumicino Airport. I think the relief of getting off of the plane can be seen on my face LOL!
Thursday:
Check in at Damaso Hotel
Collect Omni/Roma Pass
Tour on the Hop On Hop Off bus
Colosseum
Palatine Hill
Roman Forum
Fontana di Trevi by night
Drinks in the hotel bar
14000 steps!
Friday:
Amazing breakfast at the hotel
Sistine Chapel
St Peter's Square
Basilica di San Pietro (and a strange encounter)
Bus tour again
Spanish Steps
Fontana di Trevi by day
Pizza at Cuccagna Restaurant (and a 'handy' drunk Englishman)
19298 steps!!! (and yes, I have the blisters to prove it!)
Tuesday, March 27, 2018

Weekend break to Italy March 18 - Part 2

We stayed at the Hotel Damaso, a small (40 rooms I believe) boutique hotel, on the Piazza Della Cancelleria. Despite Google stating it is a one-star, it is most definitely a three-star hotel. 


We arrived at midday, although check-in isn't until 2pm. We were able to do all the paperwork needed quickly and painlessly, and then leave our luggage with them while we went out for the day. When we returned our baggage had already been left in our room.

A complimentary drink each was included for their bar, which I made full use of on the Thursday night, having a rare dark rum and coke. Now that was interesting, trying to convince the barman that I really did want coke in the alcohol :) We also had a bite to eat at their bar on the first night, but after walking 17,000+ steps (I kid you not!) they really were just mouthfuls. I mean, very elegant dining. Just not Jeff and me. I guess I'm saying then that we're not elegant LOL!

Our room was lovely, they had kindly given us an upgrade. I thought this was because it was off season and therefore not busy, and the hotel was very quiet. But at breakfast there was a steady stream of people so I'm guessing there was more people there than we knew - so good sound-proofing! Speaking of breakfast, it was amazing. We ate so well both mornings we didn't bother with lunch. It's very much a continental breakfast but with scrambled eggs, bacon, sausages and toast as well, you could almost have a traditional English. We went down early both mornings, cos you know we don't sleep. But it meant an hour to enjoy breakfast, sitting by the window, people watching.
There are no extras like a pool or hot tub, but to be honest, we wouldn't have used it if there had been one. I mean it's a short break in the most amazing capital in the world (okay, yes I'm biased!) so are we going to spend it sitting in a tub, or walking along cobble stoned streets, finding something new around every corner? Um, that's a rhetorical question! 

A couple of points worth highlighting, certainly nothing to stop us recommending the hotel, but worth being made aware of. There are no irons, which, when you're traveling is a bit of a nuisance. They were more than happy to lend us a steamer, but think about what needs pressing as soon as you arrive, rather than waiting till you're about to get dressed! The windows open wide, unlike in the UK where there are window restrictors. This was fine for us, but if we'd had children with us I would have been asking for a lower floor. And finally, no milk - powered or in those very environmentally unfriendly pots - which, for an Englishman is sacrilege! How was I going to enjoy my morning cuppa? I did mention this to the receptionist when we were leaving. He said if I'd asked they would have brought me some up, but when I wake up I like to put the kettle on and have that first cup straight away, without having to wait for room service. Like I say, nothing that would stop me from going, but worth being aware of. 

The position of the hotel was perfect, nearly all the major sites were within a half hour walk and there were bus stops all over for when our legs decided they didn't want to play the walking game any more. Again, when we checked out we were able to leave our luggage so we could fully enjoy our last day. When we returned to wait for our transfer the concierge made me a pot of tea to make up for my disappointment at no milk in the room. 

Overall we felt completely spoiled at our stay and for the room, the staff, the location, and the breakfast, we wouldn't hesitate in recommending it for anyone visiting Roma :)
Sunday, March 25, 2018

Weekend break to Italy March 18 - Part 1

Jeff and I have just got back from a weekend break to Rome. So here's a quick first post. The photograph says it all really, the boy had a great time, and apart from the obvious embarrassment when  he was messing about, so did I:) Which was just what we both needed.

Tuesday, March 20, 2018

Ella - March '18

Where are we with our beautiful Ella? We shared in June '17 how Ella had deteriorated to the point that for our safety she needed moving into a residential home. We always knew that it would happen at some point, but in our mind it was always when we retired, not when she was only 18. And then I wrote a post on her 12 week review, things seemed to be improving slightly .......

Until October where she slowly started the behaviours again culminating in Christmas. And the complete and utter meltdown and nightmare that left Ella and everyone in her path emotionally and physically in a place I cannot begin to explain. Re-read the posts and you still wouldn't get a real feel of the impact this had on everyone.

And where we were at Christmas is pretty much where we still are. It's not as extreme, she hasn't had to have any hospital admissions. But her behaviour continues to be erratic for us, for the home and at school. I have only seen her once since the new year. She happily spoke to me on the telephone, but as I walked through the door all I could see was anger on her face and she flew at me. I worry whether our little girl will ever be in a good place again, and my heart hurts a little more every time she wants to harm me. Jeff managed to hold her while she was saying that she wanted to hurt me. I was concerned about the staff, much as they are all, without exception, lovely and friendly, I definitely got the impression they were scared of her. Jeff has visited a couple of times since, and although she is antsy, he has been able to have a short conversation with her.

I am waiting for a response from both hospitals. Sadly I had to put in official complaints. I didn't want to, I know how tight time and resources are in the NHS, but apparently you cannot just ask someone to look at what went wrong and how it can be prevented from happening again. Either shut up or complain. Well you know me, shutting up is never an option so complain it is.

I informed her SW and the school what had happened over the shutdown and school stepped up and organised some meetings. However, by the third one I was honestly beginning to feel we were at the point of having meetings for meetings sake but not actually achieving anything.

Her SW has been solid in his interest for Ella and trying to get the best outcome for her. The psychiatrist has also seen a lot of Ella and seems to genuinely care. The school as always have been strong supporters of Ella, well she's been there since she was 6, and with her current HLTA and teacher for 5 years. But despite all this, we didn't seem to be making progress. Jeff and I agreed we needed support so we have now employed an SEN Advocate for Ella, Jenny Hooper from SEN Consulting I'm not going to pretend it's not expensive, it is. But Ella is in the middle of a crisis and decisions made now could affect the rest of her life.

Early March we attended something called a Planning Live Meeting. We had no real idea of what it was but went along to the school where it was being held. The lady in charge had A3 paper on the wall and coloured pens. I must admit my mind went to 'Seriously?' Two hours later I was a convert to the process :) There was 19 people there from about 10 different areas of Ella's life. That alone made us realise that a lot of people are trying to help our lost Ella find her way back.

After introductions we discussed what was great about Ella. This was both heart-warming and heart-wrenching, remembering the little girl that is somewhere inside the outside shell. And the fear that if all this intervention doesn't work that we will have to permanently mourn the loss of our colourful girl.

There seemed to be a lot of health gaps around Ella that could make huge differences as the team cannot begin to look at possible causes for her behaviour until all medical reasons are excluded. We have been waiting for an MRI since September as there is still a feeling that the epilepsy could be the cause. Then other common issues include Vit D, Vit B12 (I think, could have been B6), and urine infections.

We found out that Ella has a low iron count and last November a second blood test was requested with a view to Ella needing iron supplements. But it hadn't been actioned! We've been saying how pale she is. She also has a high ALP reading, which may be to do with the Floating Harbor Syndrome and bones, but could also be to do with her liver, and we're still waiting for those result to be repeated - bearing in mind the first elevated result was last June! I try to remain calm and level-headed but it makes me beyond frustrated.

These are just some health avenues, others are also being investigated. I will be ecstatic and angry in equal measures if, after all this time, it turns out to be something easily treatable.

Once this has been done then they can look at her mental health. She is now only attending school 3 days a week due to her behaviour, and on those days she spends a lot of time on her own, anxious, unhappy and angry. This last week we had a report from the school that she had actually joined in her class assembly and had been laughing. And isn't it sad that this is such a rare occurrence that it needs acknowledging. But we'll take it, every time we get a glimpse of her former self we have hope she is still in there somewhere.

One area that I wanted addressing was the current residential home. The staff are great, we have no issues with them, and where we were last year SS had to find something quickly, with a vacancy and within the catchment of MG as nobody wanted Ella to have to move home and school. However, the other residents are all middle age and virtually non-verbal. Once Ella leaves school this will be her life 24/7. Yes, they take the residents out. Only Ella hates transitions so very rarely goes out with them. Thankfully the majority of the people attending the meeting agreed. I was at pains to explain it isn't the home, but it isn't the right home for Ella. She needs somewhere where they are more her age, that can talk and hold conversations. And, as Jenny suggested, have all sorts of facilities on site, enabling Ella to get a more varied timetable without the stress of a transition.

As I said earlier, the meeting took 2 hours, but seemed proactive. There were a lot of actions that I feel would be done rather than delayed. And then we will meet up again after Easter with an update.

We have created a timetable to let Ella know when we will phone and when we will visit, trying to calm the autistic reactions to unplanned events. So far so good, she'll chat to us both on the phone and Jeff's visits have been short but successful. However, the real teller will be when I go see her next week.



Sunday, March 11, 2018
Wednesday, March 07, 2018

South Lake Tahoe

Over here in England we've recently had a bad winter storm, named 'Beast from the East'. Some parts of the UK got it quite bad. In Dublin Joe said he had never seen so much snow. And this is the person who years ago walked through the snow to his girlfriends and it was that bad he was passing cars as he walked!

But in our little part of the UK we were quite lucky, just a couple of inches. It still caused chaos as it always does. Our roads are not designed to handle snowfalls. I did get a couple of work-from-home snow days so that was a bonus :) But not having any little children living with us at the moment meant no playing in the snow. I mean, we could have, but I think we would have had a lot of funny stares and would probably have been removed by the police LOL!

Anyhow, I digress (as I often do). The point of the post was to show the difference between how we cannot cope with the little snow we get ........ and what Joshua sees in South Lake Tahoe. Now that is a snowfall! And yet college only closed for one day. We really need to get better at coping with snow :)

Sunday, March 04, 2018

Oahu, Hawaii

Just a quick photo to cause a sharp intake of breath.

All the boys are so independent, 3 living in other countries, and I love that about them. But then sometimes I think they like to remind me just how strong and capable they are. And this photograph is Exhibit A. I suppose I should be pleased because Plan A was to walk up the Stairway to Heaven on Oahu!! But the morning they decided to go for it police were at the entrance preventing anyone from going up - cos, well, it is not supposed to be walked, but who's going to stop a group of keen young hikers. Oh yeah, that would be the police LOL! So they decided to go somewhere else and ended up here..........I think that it was the lesser of 2 evils. But have you seen the sea below, and just how high up they are. He loved it. I am glad he loved it, but I am also glad he didn't tell me till after he had climbed it though :)