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ORly Radio Show 59 for Friday May 22nd, 2015 - Atheist Analysis!
Welcome to ORly Radio where we dismantle the current events for your edutainment through mostly rational conversations that make you go 'Oh Really'! I'm your host Andy Cowen joined by my Usual Suspects: David, Michael, and our special guests, Christopher Tanner and Jonny Brotherton from Atheist Analysis and Secular Syndicate.
Errata From Last Week: We make mistakes. Please, if you find one, pause the podcast, and send us a note. email@example.com or phone it in 470-222-6759
Doctor Patrick, a new listener and subject matter expert in "safety-critical applications", had a few words about Driverless cars and our rampant optimism. And he linked to source material.
RANT Segments
The I Just Don't Know
LG proves that Total Recall and Back to the Future 2 were a big prophetic after all. http://www.nbcnews.com/tech/gadgets/lg-shows-wallpaper-tv-no-thicker-sticker-n361571
The Weird
Scotland Yard was worried The X-Files and Star Trek could inspire anarchy in the UK https://nakedsecurity.sophos.com/2015/05/22/scotland-yard-worried-the-x-files-and-star-trek-could-inspire-millennial-anarchy-in-the-uk/
The Good:
Woo Pedlar Adam Miller decides that picking on vlogger activist Stephanie Gutormson was a bad idea, and runs away like Dr. Claw in an I'll get you next time Gadget! manner. http://www.patheos.com/blogs/friendlyatheist/2015/05/21/faith-healer-adam-miller-drops-lawsuit-against-youtuber-calling-him-out-on-his-claims/ SLAPP Lawsuit http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation
The Bad:
After the Duggar baby factory announced they were trying for number 20, one of their sons made them rethink the whole thing as their media empire collapsed under backlash to Josh Duggar's admitted molestation of 5 girls including a couple of his own sisters. WTF?
The Ugly:
Circumcision battle leads to legal battle in a throw your hands up in the air and scream OH REALLY moment.
Andy's: PAC SNI-1/3.5 3.5-mm Ground Loop Noise Isolator http://amzn.to/1HnJSel
Christopher Tanner: Help out Samantha http://www.gofundme.com/pjhjo4 and http://www.takethemameal.com/meals.php?t=UZDV6663&v=93b461f269&show_previous=1
Music: "Rocket and Pamgaea" by Kevin MacLeod (www.incompetech.com)
PSA: Guerrilla Skepticism on Wikipedia - GSoW https://www.facebook.com/GSoWproject


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Pandit Gk.Sharma ji is a great well known specialist in this field of astrology.Vashikaran is a complete process of astrology.Vashikaran Specialist Astrologer is now becoming the most important of every problem solution. All our services are provided by popular Vashikaran Specialist Astrologer.People are feeling very comfortable taking advantage of our services. Panditji will define all the special aspects of astrology world.To provide this purpose, a famous Hindu astrologer is working in this direction. They are conscious of the future and are conscious of the future of good and bad events.
Vashikaran Specialist completes all the tasks with integrity, for this reason they have got a reputation in the whole world. Because of the benefits of their services, countless people are joining them and taking advantage.
He offers his vashikaran services in Hyderabad, Jaipur, Kolkata, Chandigarh, Himachal, Madhyapradesh, Goa, Bangalore, Delhi, Mumbai, Pune and all major cities of India. He is the master of vashikaran and offers vashikaran solutions online as well to needed person.
I had to travel abroad for my further studies but was facing visa issues i consult G.K.Sharma ji he changed the whole situation and helped me to get visa.
We were in a live- in relationship but from past few days she started ignoring me i consult G.K.Sharma ji he sorted out every problem and made my life happy.
After getting married i was facing issues of my husband then i consult G.K.Sharma ji he changed their behavior and bring a miraculous change in my life.
While being in a relationship one day my love suddenly broke up with me then i consult G.K.Sharma ji he helped me to get my love back once again.
Despite doing a job i was facing money issues then i consult G.K.Sharma ji he gave me a tantra after using it i started noticing changes in my life.
I was facing several love issues it was making me frustrating day by day then i consult G.K.Sharma ji his remedies bring miraculous changes in my life.

subset: commoncrawl


text:
Brass framed sextant.
- Made:
- 1835-1845
Brass sextant with black-lacquered brass frame, polished limb, wooden handle and fitted keystone mahogany case, by Johann August Daniel Oertling, Berlin, Germany, 1835-1845. Consists of inlaid polished silver 125° scale (-10° to 150°) with 10' divisions and silver vernier (10"), three index-filter shades (red & green), three horizon filters (red & green), scale magnifier on 80mm swivelling arm. Fitted with threaded telescope bracket for sighting telescopes (missing) and sighting tube (83mm – tube).
- Category:
- Navigation
- Object Number:
- 1990-291
- type:
- sextant
- taxonomy:
- furnishing and equipment
- measuring device - instrument
- credit:
- Tesseract
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tag:blogger.com,1999:blog-46622831543945123522019-07-23T11:38:07.561+01:00abstract Lucas ... for all the unique and beautiful square pegs in life that stubbornly refuse to fit into those boring ordinary round holes. firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-5279251233250109442018-10-10T23:35:00.000+01:002018-10-10T23:35:08.491+01:00Flu vaccinations {for carers}

Yes, already. I know. Sunshine outside - well, there has been today anyway, and yet I'm talking flu vaccinations (but I have tried to brighten it up a bit with some flower pics I took in the summer).

Speaking with a group of carers today I was reminded how rubbish a lot of us are when it comes to looking after ourselves, so here's your helpful annual reminder* that this is something you are entitled to (every year) as a carer, regardless of whether you're in a recognised vulnerable group or not - it's free (yay!), reasonably quick and easy, and might stop you from getting sick this winter which, as well as potentially having an impact on the person you care for, is not great fun for you.
[ *nag]

read on...email@example.com:blogger.com,1999:blog-4662283154394512352.post-79965934808869769352018-08-12T17:16:00.002+01:002018-08-12T17:16:44.772+01:00{12.8.18}

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firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-11830650164966086882018-08-03T19:01:00.000+01:002018-08-03T19:01:10.817+01:00Leavers
I had a sudden realisation a few weeks ago that Smiler was in year 11 and not doing his GCSEs, even though pretty much every other year 11 in the country was enjoying an extra long summer holiday after finishing their exams. It's obvious about Smiler, I know, but sometimes things like that can spring to mind, often triggered by an offhand comment on the radio, or a conversation with a parent who has a 'normal' year 11 child. I do, clearly, know how old he is and what he does and doesn't do, and how different he is to most others of his age, but even with his brother and sister right behind him in school (just finished years 9 and 10), I kind of keep him in a protective bubble in my head, separate from the rest of my 'mainstream' parenting expectations and aspirations, grumbles and worries.

Then earlier this week, when we were picking him up from his last day of secondary school, he came through the double doors pushing his chair wearing a different t-shirt than the one he wore in to school that morning. His teachers had made leavers t-shirts for the young people moving on to post 16 (which is what his school calls their equivalent to 6th form). With his name on the front and messages from teachers about how lovely it's been teaching him, how special he is and how kind, and how much he's going to enjoy what's coming next, I was smiling until he turned around and I saw the back, at which point I felt my eyes prickling and my throat closing up.

Not because he's (technically) leaving school, not because 'he's not my little boy anymore', but because I was hit all over again with the realisation of how different he is. I've seen so many leavers hoodies the last month or two around and about - in school colours with huge number 18s on the back, sometimes made up of all the names of the leavers written in tiny font. So many slightly greyed white shirts with multicoloured insults scribbled on by friends, a few dodgy looking doodles and the occasional rather creative swear word.

But there are five young people leaving his school. That's it. Five. This is his equivalent of that leavers hoody, or shirt covered with reminders of friends and in jokes and teenage secrets. He doesn't understand how different he is, but I do, and every so often when I get reminded it feels like I've been punched in the stomach and I'm incapable of breathing any air back in.

Reminded that that gap between the milestones he reaches and what others were doing is still growing exponentially. He won't 'catch up' - that's not a real thing for these kids. The gap just grows and grows and grows.

The selfish thing about it is that Smiler doesn't realise how different he is. He doesn't sit in his wheelchair and watch other teenagers riding bikes and chatting with friends on their phones and wish that he could do that too. I see it as a positive thing (although I've had other parents of special needs kids tell me it's an awful thing to say), but Smiler is so far from the normal range that it doesn't even occur to him, and I'm glad that he doesn't realise how different he is. I know other young disabled people whose lives are filled with anger and frustration because they know what they want their body to do, and it just won't, or they are the odd one out at school because of their hearing aids, or they struggle to keep up with their friends in maths, but it's different with learning disabilities this severe.

In case you're reading this but don't know what Smiler is like, here goes: he'll be seventeen in September, has diagnoses of epilepsy, haemophillia, scoliosis, multiple joint and skeletal abnormalities, a heart condition, absent puberty, and severe learning disabilities (SLD). SLD doesn't mean he's a bit slow, or that he takes longer to understand things - by way of illustration, Smiler can't read or write, though (sometimes) he recognises his name written down; he will correctly name red / green / blue / yellow about half the time; he can count (unreliably) up to four, but if you ask him how old he is he'll tell you he's eight. Or maybe eleven. He doesn't dress himself, brush his own teeth, cut up his food or do up his seatbelt in the car. His favourite tv programmes are the Lion Guard and All Hail King Julian, his favourite radio station is Heart because they play a narrow enough range of music that it's fairly familiar to him.

I love him, I do, but sometimes it can be hugely frustrating when he asks the same question over and over, or spills his tea because the dog barked and made him jump, or it's rolls for tea and one of us has to make his while everyone else sorts their own. And I know it isn't on purpose, and I know it isn't his fault, but knowing that doesn't help. Having a 5'8 toddler is hugely stressful, and that stress is magnified when you know he'll get taller but not 'grow up' in the way that others do.

A lot of the thing he won't do don't even register with him which, as I said, I look at as a positive thing for him, but I still see them, all these things that won't be a part of his life - driving a car, enjoying an adult relationship, getting a job, starting a family. And I selfishly mourn them for him. And it's flashes like this, like his leavers top, that bring them to mind the infinite list of experiences he'll never have and, even though he doesn't know, I do.

So, I'm grieving. Again. For him, or for me, or maybe for us both? For all the things he hasn't done, and all the things he'll never do, and all the things I'll never get to see him do. And in a few days it will fade, this hurt, and then I'll be surprised by it all over again when some other silly thing makes my throat close up again, and my eyes prickle. But right now, that leavers t-shirt makes me want to cry.

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email@example.com:blogger.com,1999:blog-4662283154394512352.post-83085005379582701232018-07-29T17:14:00.001+01:002018-07-29T17:14:40.504+01:00{29.7.18}

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firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-87333039482612959542018-07-14T20:10:00.000+01:002018-07-14T20:10:30.818+01:00PIP tips! {Personal Independence Payment}

This post kinda slots into a short run about when Smiler switched from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) when he turned 16 - you can find the other posts here (part one) and here (part two) I thought it might be useful to share these tips and pointers for others who are filling in PIP forms for their child (or even themselves, so please excuse my references to 'your child'). It seems the Department for Work and Pensions (DWP) are retaining DLA for under 16's (for the time being at least), so this switch from one to the other at age 16 is here to stay. There's a few photos of Tilly the kitten thrown in too, just to relieve the tension!

Making a start:

Working out where to start when you're filling in any of these forms is a bit of a nightmare, but often the first page or two are basic info about the person the form is about - date of birth, address, GP contact info - this seems to depend on whether the PIP claim is brand new, or if there was already a DLA award - if there is a current DLA award this info might be printed on there already, in which case you need to move on to listing health professionals, so skip down the page until you see the ◇. Double check on the front page of the form whether you must use black ink or all capital letters or mirror writing - I think they've relaxed a bit in the last 15 years or so but it's best to double check! Take a pen (not a pencil, even if it doesn't specify what colour ink you need to use, they still want pen I'm afraid) and a deep breath and make a start. Fill in the things that you absolutely know to be accurate - middle names and dates of birth and postcodes are important here. If you aren't sure, leave it blank for now, and try and find out in a minute - especially things like contact phone numbers - you really don't want to guess!

◇ So, question 1 asks you to list health professionals that your child sees. As you're asked for addresses, write out the whole address, including the postcode. If you don't know the whole address, for example of the GP surgery, Google is your friend here - type in the name of the practice and the town, and you should be able to find their website, and if you go to it there will be the full address (and phone number, you'll need that too) either on the main home page or a contact page. Might also be handy if you're not completely certain how to spell the name of the GP, as there's probably a list of them on the site. Go back through your calendar or any letters you have to see when they last saw your child, and if you really can't work it out you could ring the surgery / hospital / office where they are based and ask if they could look it up for you - always be friendly and polite though, as you are asking for their help, and the people that answer those phones have a million and one other things to do!

read on...email@example.com:blogger.com,1999:blog-4662283154394512352.post-61427214028265369962018-07-11T10:01:00.000+01:002018-07-14T18:30:36.517+01:00Meet Tilly

After we lost our beautiful cat Meg last year we knew we would want to get a kitten at some point - Mr and I had cats before we had the kids, and my lap was just too empty with none in the house! Once kitten season was in full swing we sent the message out that we were looking for a kitten, hoping that someone we knew would hear of a litter somewhere. We were lucky in that we heard back very quickly that someone who runs a youth club that Smiler goes to had a pregnant cat, and offered us first pick of the litter. After much anticipation, on Saturday we headed over and picked out a little ball of fluff to take home. Though initially called Jinx, by Sunday she had become Tilly - and here she is.

So far we know that she likes snoozing, tuna and chasing her tail. She has a wonderfully rumbly purr when she is being snuggled, and likes to sit in the crook of my neck when I'm sat on the sofa. She and the dogs are still sizing one another up, but she has hissed and spat at them when they try to steal her food, which I look at as a great sign - personally I'd rather that than she be timid and run from them, but we'll have to wait and see how it goes I guess!

read on...firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-90093617952948302072018-06-30T21:09:00.000+01:002018-06-30T21:11:51.300+01:00Moving from DLA to PIP when you're 16 : part two

After getting the appointee sorted, everything went quiet for a couple of months - we celebrated Smiler's sixteenth birthday, and forgot about the whole PIP thing - until the next brown envelope landed in the postbox (about a month after his birthday).

This was addressed to Mr, and asked him to decide whether he wanted to make a claim for PIP on Smiler's behalf. If so, he needed to ring the phone number on the letter to begin the claim, but should have plenty of info to hand when he made the call as they would be taking down the details. Remembering the DLA form (all 42 pages of it) we made sure we had everything we could thing of, and I was there, tablet at the ready, to look up anything we ought to have to hand but didn't - you know, the GPs postcode; the neuro consultants secretary's extension number; the maiden name of the physio's next door neighbour.

read on...email@example.com:blogger.com,1999:blog-4662283154394512352.post-31079065396702151112018-04-21T13:17:00.000+01:002018-04-21T13:17:03.793+01:00Moving from DLA to PIP when you're 16

Long time no see, I know, but now I'm back with what I hope might shed some light on a tricky time for others. Towards the end of last year I struggled to find what I was looking for, which is odd given the dearth of info on this internet of ours! We had the dreaded switch from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) coming up for Smiler, and I honestly didn't know what to expect. While I could find several really informative guides to filling in the main PIP form itself (which I will share when I get to that bit) I was after more of an overview, a shared experience or two of what actually happened and when. Because of that, I'm going to share our experience here in the hope that it might provide a bit of clarity for other parent carers going through the same thing. I have gone back and forth a bit about sharing the details as they're specific to Smiler, and there's the whole "how dare you share that info about your child without their permission" thing. In response to that, my reasoning is that I'm not sharing anything that is embarrassing or distressing to him, and I'm confident that since he gets a lot out of being helpful to others he wouldn't have an issue with my trying to make this process a little less worrying for someone else going through it.

So, lets start at the beginning. Smiler has been on DLA since just before he turned one (reviewed when he was three, eight, and thirteen) and his sixteenth birthday was in September 17. He's always been on high rate care and high rate mobility, and we've never had to appeal or ask for a Mandatory Reconsideration (MR) or anything - it's always gone very smoothly. Partly, I think, because he had a definitive medical diagnosis very early (at ten days old), and we've always been able to send several clinic letters from different consultants referring to his myriad medical conditions, and school paperwork referencing his level of development and understanding. His most recent DLA award expired on 24th March 18, exactly six months after his birthday.

read on...firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-17339199093299423332017-12-31T19:45:00.002+00:002017-12-31T19:45:42.910+00:00Looking back at 2017
Sensible to look back and take stock before looking forward I guess, so here goes.

We lost Meg in November, and I still keep expecting her to jump up on to my lap and yowl for me to scratch her chin. It was the first time we had been faced with making the decision about having a pet put to sleep, but as much as it hurts to think of her, I'm comfortable that we made the best choice at the right time.

Smiler has had a good year - no protracted hospital stays; and as the orthopaedic surgeon who operated on his hips back in 2009 retired this year, he's switching back to Bristol so that means two fewer day trips to Southampton each year from now on. We know now that he won't be needing the daily growth hormone injections that were a real possibility this time last year, and he's so much more stable due to some medication changes and a great deal of hard work on his part. School is going well, and while the EHCP process is a complete joke and Smiler has unfortunately been caught up in Bristol's poorly organised implementation, I'm assured things are changing.

The house is continuing to evolve - while the adaptations were completed last year, anyone who has made the kind of changes we did knows that it takes longer than that for everything to be finished off completely! My glass house has progressed - it now has a window and door, as well as a floor! The porch, hallways and stairs are the outliers - mainly because we've been trying to work out how to deal with the textured wallpaper!

Noah and Petal are growing up - I don't tend to mention them much on here now as they've reached an age where I don't feel it's appropriate for me to share things on their behalf. They're incredible and (at times) frustrating young people, and I'm very very proud of them both. Teenage years are not easy - for teens or their parents - and I believe they are handling them with grace.

Mr and I are still going strong - it was our sixteenth wedding anniversary this summer, and I'm more in love with him now than I've ever been. We've shared plenty of laughter this year, and I trust him more than I could have believed I would trust anyone. Twenty years ago I would have literally laughed in your face if you told me I was going to have this, and I would simply not have been able to comprehend what you meant if you told me I'd believe I deserved it, but I know that I do.

So that's it - 2017 is almost over, and 2018 is just around the corner. Happy new year to you all, and I hope looking back over your own year gives you a sense of satisfaction, and a tingle of excitement for the twelve months to come.

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email@example.com:blogger.com,1999:blog-4662283154394512352.post-62690248059137592582017-12-01T16:34:00.003+00:002018-07-14T18:33:26.686+01:00Festival of Lights at Longleat

Some years we go to Clearwell Caves, some years Westonbirt, but this year our family christmassy lights trip was to Longleat. It might be best known for the safari, but every year Longleat build a lantern trail around a specific theme, and create huge illuminated sculptures to surround the paths.

This year the theme was Hans Christian Andersen's fairy tales, with each scene linking on to the next by using woodland creatures and vast trees. Each scene had a panel which told you the name of the fairy tale and shared a quote from the text which was brought to life by the sculptures - handy, as my fairy tale knowledge is rusty and probably more Disney and Once Upon A Time based than I'd technically like it to be...

read on...email@example.com:blogger.com,1999:blog-4662283154394512352.post-22460248061360898802017-11-20T19:49:00.000+00:002017-11-20T19:49:09.872+00:00Goodbye Meg

Even though I can see you right now, laying in your basket, I miss you already. You've been laid there for over a week now, showing no interest in what the dogs (or kids) are up to, which is such a change from your usual getting-in-the-middle-of-everything behaviour. You won't even get out of that basket for food, and you are usually louder and more persistent than the dogs (or kids!) are when you believe it to be a mealtime. I miss our chats, where you yowl at me and I answer back, only to be met with some more talking from you demanding answers - but I don't think you've spoken to me since you took to your basket. We were hoping you were just a bit under the weather, and would perk up once you'd had a few days to rest and some highly prized tinned food. But you aren't interested in the food. Even when we bring it to you in your basket, you won't eat. So earlier today we took you to the vet, who stroked you so gently as she examined you, murmuring to you how beautiful you are, then told us your heart has had enough, and that the kindest thing would be to put you to sleep. It feels like a betrayal, looking at your sweet face, knowing that in a few hours you'll be gone. I'm sorry, for every time I grumbled at you desperately crying to go outside, and every time you were outside desperately crying to come back in (usually 90 seconds after I'd let you out). I'm sorry for every time I pushed you off of the book I was reading when clearly you were being completely reasonable, and just wanted a chin scratch (that is my job after all). I'm sorry for every time I laughed, watching you and the dogs chasing one another in circles around the house like a cartoon (even though you definitely did your fair share of the chasing). I'm sorry that I can't make this better, that I can't fix you and make everything okay. All I can promise is that we won't forget you, and that you won't be alone. Look at me, and I'll look at you, and tell you how brave you are, and how much we'll miss you. Look at me, and I'll tell you how much you are loved.

Goodbye Meg

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firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-6830657179282044502017-11-16T09:30:00.000+00:002017-11-16T09:30:32.816+00:00An Ordinary Journey

For the past twelve months or so, Mr and I have been struggling with Smiler. Not with his behaviour exactly, but with the level of support that he needs pretty much around the clock, and the never being able to switch off. It's difficult to explain to anyone who hasn't been there, it's hard for them to understand just how draining the constant watchfulness, the always-on-edge-ness really is, combined with the physical demands of caring for him; the never-ending paperwork and appointments and admin involved; and the other world that you mentally move into when something actually does happen that means you need to be able to list the names, strengths and dosages of all the meds, as well as consultants, and details of every relevant aspect of his condition. Knowing that at any moment he might have a fall or a fit or a bleed or a dislocation - even when he's at school we know that we might have to drop everything to meet his ambulance as it pulls into the Children's Hospital. And when he is with us, we have to keep an ear out for him every second that he's not in sight, because this young man can go from completely fine to really, really not fine in seconds. But as well as the psychological strain of this, it's the sheer physicality of being his parent - of dressing him, and feeding him, and doing up his seatbelt. Brushing his teeth, and putting on his splints and shoes, and walking alongside him so he can hold on to your arm. So many of the things that we do for him are tiny tasks in and of themselves - getting him a drink, putting on his deodorant, reading him a story, but when you add them all up it's exhausting, and there's no let up. I believe that there's an ordinary route that you follow as a parent with your child, and though every child and every parent is different, and of course this influences their journey to a certain extent, they still walk the same general path.

As a parent, you start off with a baby that you do everything for. You dress them, you feed them, you burp them - you spend every minute picking them up and putting them down, singing silly songs, reading about how to encourage language development and worrying about every temperature and rash and cough.

After a year or so, your baby is becoming a toddler, and now you reach out your arms as they stumble towards you, clapping as they use those chubby fingers to put the wooden square into the space on the board where it belongs, smiling as they babble at you, giggling when you realise they're trying their hardest to make the animal noises as you sing Old MacDonald at play group one day.

A year later they have all the lyrics of Old MacDonald down pat, as well as those of Row Row Row Your Boat, Incy Wincy Spider, and probably some completely inappropriate song like Blurred Lines or Uptown Funk that is played on the radio a hundred times a day. And that other sound you hear a hundred times every day? That is that little child of yours asking you why.

read on...firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-23251012065435115462017-10-05T18:06:00.001+01:002017-10-05T18:07:29.643+01:00In which I grumble, and I don't.
Sometimes, it is all just too much. But rather than try and explain the absence, I'm going to just get on with it. Unlike me, I know, but I'm trying to turn over a new leaf. You know, more of the live and let live, less of the grumbling. Except I'm going to start by grumbling. Well, kind of. Bear with me.

We're lucky to be able to run two vehicles, but a couple of people have commented that they don't match. Not match as in complementary colours, but match as in they don't seem like two vehicles that would be owned by the same family.

The usual transportation is TheCar. Electric car, boot big enough for the wheelchair, and great for sneaking up on people in when you're in a supermarket car park (seriously - people pushing trolleys laden with groceries rarely look over their shoulders before they veer gently off the pavement > over the road > towards their car - after all, they'd HEAR if there was anything coming, wouldn't they? No. Not necessarily). So, electric car combined with the solar panels on the roof mean we get to feel righteous about the lack of fumes while keeping track of all the free-to-use 3 pin chargers in the city (which are disappearing every month, so we need to buy a lead - can you imagine? Having to buy a new charger wire for your car 😯?)

There's TheVan, a pretty old, diesel powered thing, which fits all of us in (including the dogs, the wheelchair and shopping when necessary). But it's a bugger to park, noisy to ride in, and hard work to lift Smiler in to. He's 16 now, same height as me, and weighs about 65kg (10 stone plus a bit in old money), and lifting him in to TheVan is ... well, it isn't as easy as it was a few years ago, put it that way.

Nothing to do with TheCar or TheVan - this is Meg, our aging kitty cat

The theory behind needing the van isn't, as some may assume, to do with going on holiday (because we haven't done that in ...erm... roughly nine years. It isn't even mainly about the distance that TheCar limits us to (though that could be interesting when it came to Smiler's six monthly hip checks at Southampton). It's about it being a van. A van which, if/as/when it becomes necessary, we could adapt to being able to push Smiler into via ramp or lift, if/as/when he is no longer able to walk. You can see I'm covering all the bases there - that's because every couple of years there's a new health crisis that makes it appear that that is where we're heading. In the very early days we were told he wouldn't walk, he wouldn't be capable of learning how. Then came the seizures that lasted for hours, and meant he was constantly exhausted. Then the almost organ failure. Then he started taking steps - with the support of a walking frame and people moving his feet. Then, by chance, we found out neither of his hips had any socket, and we were faced with him needing a stretcher bed as he wouldn't be able to sit, unless he had major surgery and it all went far better than everyone dared hope that it would. After the surgery, rehab was a nightmare, and recovery took a long long time. Then seizures again. Then Smiler's physical skills began to decline, and no one knew why. He could hardly walk, then couldn't walk, then couldn't stand. Then more meds. Which is why it still feels like tempting fate to believe he won't be a full time wheelchair user in years to come. I need to be really clear here - I don't consider him being a full time wheelchair user to be the end of the world - I've known to many other young people and their families facing far worse to ever think that. But it would be a change. Right now, *whispers* we don't even have a hoist in the house. Because he's on his feet, and so much more stable than two years ago, when he started to decline. But we never know what is around the corner. Which is why we still own our horribly polluting diesel TheVan. Because getting rid of it would feel like tempting fate, like we were proclaiming "hey, look, we don't need a van, he can transfer, he can weightbear, he can walk. No van here, just a car, like an ordinary family".

But back to TheVan and TheCar.

read on...firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-5544740791024226262017-02-20T20:15:00.000+00:002017-02-20T20:15:41.276+00:00Smiler and the Very Specific Spectacles {part 2}

Smiler needed new glasses, but there's this. Technically he needed new glasses five months ago, after an eye test showed his vision had changed a bit, but ... well, just but. Or maybe because.

Partly because there's been a lot going on, but mainly because it's always such an ordeal for Smiler, being fiddled with and people having their hands around his head (which he hates with a passion) and puts him in a horrible mood for the rest of the day. We are reminded all over again how difficult his are, how non-standard, how awkward it is to get frames which work for him. And I'm in a horrible mood for the rest of the day too, because it's hard work maneuvering his wheelchair around an added-on bit of supermarket, and he's stressed and therefore distressed, and I feel massively guilty because I haven't challenged every assumption that was made about his understanding and his needs.

Complete aside to getting glasses:

You have to pick your battles when you're parenting a young person like Smiler, and you have to accept that you can't make everyone see the incredible smile and the great sense of humour and the twinkle of mostly harmless mischief in those eyes - some people will only ever notice the wheelchair and the jerky movements and the noises. But every time someone looks at him with pity, it hurts. Swift and silent and sharp, like a dagger through the ribs, it hurts as I see him dismissed and overlooked, but so often there's nothing I can do. I can't make people see what I see. But even recognising that hurts too - a duller pain, a tired ache that clouds my joy in him. An endless source of parental guilt, feeling I should do more, why didn't I say this or that, why didn't I grab them and force them to acknowledge all the good stuff - all the marvelous jokes he's made, the hugs he's given, the awfulness he's had to deal with and has overcome, and with such grace...but they don't see that - they can't. And I can't make them.

Back to the glasses.

So we - I - had put it off. But when his glasses were sat on (actually properly sat on. By Smiler. Don't ask me how - I have no clue) we had no choice. It was time - it couldn't be put off any longer. But really, how bad could it possibly be?

We visited Turners Opticians in Fishponds, and it turned out not to be bad at all - not at all! A lovely lady directed us to her more experienced colleague, but sorted out some admin for us and chatted while we waited for a couple of minutes. Lovely gentleman listened to the things we needed him to know about this, showed us a couple of pairs that might work -ish, then found some that ticked all the boxes - This has never happened I wanted to shout at him, but I thought that might make me look a bit peculiar. We've never found a pair that weren't some sort of compromise before, in over ten years of glasses wearing. He casually chatted to Smiler as he took the measurements he needed (involving nifty little rulers and things), and commented that he would switch out the stiff plastic nose pad bits with softer squishier plastic nose pad bits (there's a chance that might not be the technical term) so they would be more comfortable for Smiler to wear for long periods. I should point out that by this time I was a tiny bit in love with the man, A moment later I was certain I'd misheard when he said they should be ready to collect on Tuesday - we're used to that car mechanic type slow inhale and exhale followed by "well, it'll be three weeks I expect, since they're bifocals" - three days (two if you don't count Sunday) seemed ludicrous. Lovely Man offered Smiler a high five, and we were done.

I did think afterwards that it all seemed a bit too good to be true - maybe my love had deafened me instead of blinding me, and he had meant three Tuesdays time? Or that they would cost a mere one hundred of your finest English pounds? Or that they would for Smiler perfectly if only he had that teeny bit of plastic surgery and moved his face two inches further around on his head?

read on...email@example.com:blogger.com,1999:blog-4662283154394512352.post-32486349137845275632017-02-11T19:23:00.000+00:002017-02-21T08:21:20.634+00:00Smiler and the Very Specific Spectacles

Smiler has worn glasses for many years, and it's always a struggle. Not in him keeping them on - when he first got them he didn't have the coordination to use his hands to take them off, and once he did I think he was used to them. Or maybe the various strapping-the-glasses-to-his-head methods that we used actually did work. But to be fair, those tactics weren't about trying to persuade Smiler that he wanted them on, but more about convincing this miracle of engineering that it actually belonged on his face.

As with pretty much everything when your child has the kind of needs Smiler has, it's all much more complicated than you'd think. First, there's the eye test itself - Smiler can't tell you the letters on the line one up from the bottom, or if the circle looks darker on the red or the green, or if those letters are clearer with number one, or number two. We're very lucky in that Smiler qualifies for the specialist team, who either see him (no pun intended) at school or else give us an appointment for the eye hospital. Of course, once he's 18 he'll no longer be eligible for them, and will have to see an 'ordinary' optician - a prospect that made me feel like my stomach had been replaced by a swirling hole of nothingness when I first found out. His vision isn't terrible, but his weirdly shaped eyeballs combined with weak eye muscles, epicanthal folds, sensitivity to people's hands being anywhere near his head, and intellectual challenges mean that getting an accurate assessment of his vision is never going to be straightforward.

Then the next step is getting new glasses.

Glasses - it's all about the eyes, right?

Unfortunately not. A pair of glasses also needs to take into account your ears, nose and the shape of your head. How bad can it possibly be? I rather optimistically thought to myself when Smiler first needed glasses. Of course the answer was that it could be very very bad.

Now, I love this boy, really I do, but he has a weird head. His neurologist once commented that Smiler has "a head that is not, by and large, head shaped; with a face that is not in the place you'd expect his face to be, by looking at his head". Thinking back, the list of dysmorphic features that clinical staff wrote out when he was born included reference to the size and shape of his head; lack of symmetry of size, shape, location and orientation of his ears; size, shape and positioning of his eyes; and his lack of nasal bridge structure, so maybe I was more naive in those early days than I realise, if I didn't realise immediately just how tricky finding glasses was going to be!

Say you start off with a hundred pairs of frames...

The frames need to be made of metal in order to be able to make all the necessary unique adjustments to try and fit them to Smiler's head, so when you take off those not made of metal, you're left with 65.

Smiler needs bifocals, and so that there is a reasonable amount of glass of each prescription, the lens needs to be pretty large. Not ridiculously massive, but on the big side. That takes the 65 pairs down to 18.

As Smiler is under 16, he gets free glasses, to the value of the NHS voucher. As his glasses need to be regularly fixed and replaced, we don't have the money to pay extra every time, so if we're only looking at NHS voucher priced ones. That knocks off three quarters, leaving four.

The arms of the glasses need to curve far enough round his ears to have at least a bit of a chance of staying on, which takes the four down to two.

These glasses will be on and off of Smiler's face regularly through the day, so are going to have to cope with being squished by his safety helmet, licked by the dogs while they're licking his face, pulled off not-especially-gently, put back on not-especially-gently, and cleaned fairly regularly (how he gets bogies and gravy and glitter and finger paint on both sides of both lenses on a daily basis is completely beyond me). They need to be strong enough the handle the handling - which rules out another one of the two.

This means we have a winner, ladies and gentlemen - one pair of frames to rule them all, and if they're luminous yellow or decorated with peacock feathers and look like a pair that Dame Edna discarded for being a bit much, they will still have to be Smiler's glasses. What they look like is irrelevant, if they will keep the little bits of glass approximately in front of his eyes without driving him (or us) up the wall.

Course, once the frames have been picked out it takes another week or two for them to be made up, then we have to take him in to have them fitted. Since having a difficult experience at a nearby independent opticians we had always chosen to go to a supermarket, knowing that parking and access are straightforward, even though it seemed sometimes that the people qualified to sign off on glasses for a person under 16 worked only within school hours, or only on Wednesdays during the first half of the year, or only between 10:17 and 11:41 on odd numbered days in months with the letter A in the name. Anyway, although Smiler had a sight test at the eye hospital in August, I had (oh, the parental guilt) put off getting new glasses as his prescription hadn't changed much and there were always too many other things to do that were more important. Up until his glasses came home last week twisted out of all recognition - they were kind of folded in half and then wrapped around on themselves, and I'm really still not sure quite how he managed it. So there was no choice - it was time to go glasses hunting again. Oh joy. Rather than go to the supermarket (which is a different one now that we've moved) which were a nightmare with Noah's last month, we opted for a local independent opticians which had been mentioned way way back in August. How bad could it possibly be, right?

This bad, is the answer, using the 1990's definition of bad, which meant good.

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email@example.com:blogger.com,1999:blog-4662283154394512352.post-3450309769428535322017-02-06T19:04:00.000+00:002017-02-06T19:04:19.662+00:00Short breaks - an update
So, I explained here all about how we reached the point of deciding to go to an agency to find 'short breaks' for Smiler, but things have changed.

After chatting to the manager at the agency and the support worker, we decided to put the initial misunderstandings down to teething trouble, and hope things improved as Smiler got used to her and she became more tuned in to him and his communication. And so it carried on ... for about a month.

Then one bright Tuesday morning I got a phone call from the care manager, to 'have a chat'. You know when you can hear in someone's voice that they aren't actually saying what they're trying to say, and they aren't sure how to broach what it is they're actually trying to say? That. Anyway, it turned out that the support worker felt she wasn't "clicking" with Smiler, and they didn't have anyone else on their books that had the same sort of skills, so they were very sorry but.

Such a tiny word for all that it encompasses.

I have a bit of distance on this now, but at the time I was wrecked. I felt that Smiler - and therefore all of us - had been rejected. That I'd put him in a situation where he was spending time with someone that didn't see the lovely, funny, kind, cool dude that he is. Who didn't understand him, and couldn't be bothered to try. Who felt that he was too much work. Who felt that being with him wasn't worth the £16ish an hour that she was getting.

Mr and I thought that going to an agency was a safe bet, a guarantee that we'd find someone - after all, he's not *that* tricky - is he? Instead it has massively increased our worries that are usually meandering along underneath those ordinary life worries - you know, like the car is due an MOT next month and I need to buy toilet roll and she's twelve, what do you mean she needs to pick her GCSE's - I mean the fears about the future of this young man and will he have friends after he leaves school and will he enjoy his life.

But, distance. Playing Pollyanna's glad game, I'm glad that the support worker was honest about it. Smiler is pretty good at picking up on non verbal cues and if she was uncomfortable, he was most likely aware of it. I think she was expecting a teenager who had some behavioural quirks rather than an overgrown toddler with a list of significant health issues.

It's just disheartening to go to a business which finds carers and support workers to work with older people and those with disabilities only to end up being told basically that we don't have anyone for *your* disabled person. And it doesn't exactly bode well for finding people to work with him when he's bigger, and potentially more unsteady on his feet and - who knows - with possibly even more health issues.

So we're back to using Smiler's Personal Budget for bridging the gap between his life and the fabled 'Ordinary Life' of an ordinary young person, working to increase his independence (tricky when there's no one other than his parents who can/will be the responsible adult around), and providing him with a short break, as well as us.

Books is an option - although he can't read, Smiler loves to turn the pages and look at picture books, so he sits up at the dining table in his supportive wombat chair and reads, which means he is safe and secure and doesn't need our intervention or help for maybe as long as ten minutes. Assuming he doesn't need the toilet or have a seizure or nosebleed or get distracted by the cat or decide he doesn't like this book after all or accidentally rip a page out after getting the shakes or need his shoes taken off because his feet hurt or wants his jumper on because he's cold or he just does.

Personal Budgets. Choice and control. What a lovely idea.

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email@example.com:blogger.com,1999:blog-4662283154394512352.post-25554515630032822122017-01-18T09:46:00.001+00:002017-01-18T09:46:12.022+00:00Short History of our Short Breaks
And I'm back. I will explain properly at some point, but the short story is that Smiler was unwell, and losing skills at an alarming rate. Now he's levelled off and starting to pick things back up, and we have a preliminary explanation which is much less scary that some of those we've been given over the last few months.

So on with the show. The sock photos have nothing to do with the content by the way, they're just socks that I knitted and I like them and I think they're pretty. But absolutely not relevant.

Stripy and spotty and rainbow-y socks. Oh yes.

We've been pondering what to do with Smiler's 'short breaks' personal budget - basically instead of getting a council provided respite service, we have the money (amount based on an assessment of his needs) and purchase a service ourselves. The theory is that the parents (and young person, as appropriate) can get something that is more suitable for them. We wanted to get a PA (personal assistant) or support worker for Smiler, so he could go out and about after school one day a week and do something he wanted - go to Ikea for a free cuppa and try out all the sofas, go bowling, check out all the local Christmas lights - you know, ordinary things. Okay, not what other 15 year olds do, but things that give him an opportunity to spend time with someone else, away from us to help develop his independence.

Anyway, back at the beginning (six years ago maybe?) we had someone who had just stopped working at his school to go to uni. She was lovely. They got on really well, she genuinely enjoyed being with him, and when she brought him back home he'd be buzzing with excitement, telling us what they'd been up to. Three years later after she'd finished her degree she had the cheek to get a job as a full time OT, and had to stop taking him out. Despite trying everywhere we could think of, we weren't able to replace her. Although the theory was that there would be plenty of willing applicants complete with relevant training and experience to fill the demand created by these personal budgets, it proved very difficult for many parents to find someone reliable who was prepared to work for the money we get from the council, and new legislation meant that as well as paying their wages and NI from the personal budget, we also had to provide them with pension contributions. Although this was off putting we persevered, but Smiler's medical needs seemed too much for many. The idea that at any moment he could have a seizure, or dislocate his jaw, or have a massive nosebleed - well, to be honest most of the applicants were looking for a young person with a relatively low level autistic spectrum disorder that they could take paces and do things with, not a wheelchair user with severe learning disabilities, never mind the personal care aspects or health conditions!

After about a year of trying unsuccessfully trying to recruit a PA we decided to change tactics a bit, and instead arranged for a local respite provider, running out of a centre nearby with sensory rooms, craft opportunities and outside space, to collect him from school once a week instead. We paid for him to have a 1:1 worker, which to our mind meant that even though he wasn't out and about in the community doing things, he had a person who was focused solely on him who could encourage him to make a choice about what he wanted to do and support him to do it, to read books with him, to have a chat about what was going on in school or what he'd watched on TV yesterday. Unfortunately this turned out not to be the case - they only usually used 1:1's for safety reasons, for young people who had tendencies to run away, or who might be aggressive to others. This meant Smiler was seen as an easy option, and as they rotated 1:1's over time there was little consistency and no opportunity for Smiler to build up a rapport. Over time we discovered that although we were paying for Smiler to be collected from school at 3:30 they were often late - regularly by about half an hour, and that as Smiler was so easy going everyone would have a 'turn' being his 1:1 while he was there, so each Friday he would have had maybe four different people with him for less than half hour at a time. Fast forward two years and we now found out he often spent the time watching TV there, and they were dropping him home earlier and earlier - often just after 6 o'clock when we were paying £15 an hour (plus extras) until 6:30.

Meg, clearly impressed with my socks

It's very difficult to do anything once you're in this kind of situation though, as you - or at least I - worry about the fall out. I wonder if I complain, will the workers treat Smiler differently because they're annoyed at his moany mum. Will they be less accommodating when we cancel with only a days notice because Smiler is unwell? Because Smiler's understanding of a situation is often superficial although he reads body language well, would he think he had done something wrong if people were short with him?

So we took the path of least resistance, and did nothing. We smiled as they brought him to the door half an hour early; we nodded as school grumbled to us that they'd been very late collecting him again. I felt trapped - we had tried so hard to recruit a PA and I really didn't want to start from scratch again - it had become very disheartening to find that the 'easier', more able kids could find someone to work with them fairly easily, but it seemed no one was prepared to take on my son. So while we were dealing with getting the house sorted, Mr and I reasoned out loud to one another that at least it was better than nothing, and even if he was only watching TV, as far as he was concerned he was having a good time, and Noah and Petal were still getting a bit of time with us when we would not have to drop everything if he needed something.

But a couple of weeks ago, things came to a head. They had been behind in invoicing us, so we chased it up, only to get three months of invoices in one go, each of which had an error. Two had the milage of bringing him home to us as nine miles, instead of less than two - they were still calculating using the old address, where they have not taken Smiler in over a year. Of course, this means we've probably been paying this incorrect amount since then, but I don't really want to dwelling on it! The bigger issue was the invoice for the school holiday period, where we had been charged more per hour than usual, for no apparent reason, which lead to the bill being £150 more than we had anticipated (turns out they charge more per hour in the school holidays, but hadn't told us). It was time to make a change.

So I rang an agency. We'd pondered this option before, but had shied away because of concern about how ridiculously expensive it might be and also, I think, because it felt different. Paying an organisation to arrange care felt very formal, and it felt like a bit of a slippery slope - a step towards Smiler being an adult that we have to arrange these things for. Daft, of course, because he is now 15 and it's not all that long until he is an adult we have to do this for.

Anyway, I digress. We contact a small local agency who I'd heard somewhere were meant to be good - it was originally set up by a couple whose children had severe disabilities and for whom they couldn't find appropriate, reliable care. Met with the care manager, did the paperwork, talked things through, and on Friday Smiler was picked up from school by ... let's call her Jane.

And here is why we are now worried.
 ● Jane went to the wrong school (well, right school, but wrong site).

 ● Having gone to the wrong school, she was then late to the right school.

 ● When asked who she was collecting, it transpired she only knew Smiler's first name - she clarified by saying "His mum is Lucas"

 ● When asked to show her ID, she said she didn't have anything like that (school said you can't take him without it, and after a rummage in her bag she produced an agency ID)

 ● Jane took Smiler to Ikea and got him hot chocolate and a cake (we had suggested Ikea's free cup of tea and some time sitting on all the sofas and looking at the Christmas decorations, and said No Cake because Smiler is getting a bit chunky - not said in front of him obv)
 ● Jane brought Smiler back home at five o'clock, but wrote 5:30 on her time sheet.

I wrote this shortly before Christmas, and the situation has moved on again, but I figured I'd better post this so the next one will make sense!

Do you get a Personal Budget for your child or young person? How do you manage it? Have you had any difficulties recruiting?

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firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-18455371803640908752016-09-25T10:48:00.004+01:002016-09-25T10:48:45.415+01:00These days...I know, it's not like me to keep my mouth shut for this long.

Unfortunately there is Stuff Going On with Smiler, and to be honest I don't have the brain space for writing - not about the Stuff, not even about not the Stuff.

A very quick catch up - Petal turned 12, Noah's new school shoes are a size ten and a half (going into year 9), the extension is finished (in that it has lights in the ceiling, paint on the walls etc, though no proper flooring yet, just concrete), the new puppy - my puppy - is perfect.

But the Stuff - well, it's big. So send me your happy thoughts, people, your positive vibes, or clap if you believe in fairies - you know the drill.

And here's a photo of Riley, in case you haven't spotted her yet on my Twitter or Instagram.

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email@example.com:blogger.com,1999:blog-4662283154394512352.post-13551322141016995922016-06-18T11:50:00.001+01:002016-06-18T11:50:22.447+01:00A fall and the aftermath"Hi Lucas, it's David from school"

I didn't respond yet, waiting to hear the usual 'Smiler's fine" first, but it didn't come.

There was a certain tightness to David's voice, and although of course the head teacher of a special school is always under pressure, juggling budgets and staffing and LA and paperwork and building issues, he is usually able to keep a lid on it, and generally sounds pretty calm and laid back - but not today. The distinct lack of immediate reassurance made me stiffen in my seat as all thone dreaded possibilities flashed through my mind - a seizure? A bleed? Something else altogether?

"Smiler's had a fall in the playground. He has two first aiders with him, but it was eight minutes ago and we haven't been able to get him up yet..."

What do you mean, haven't been able to get him up? Did he hit his head?

"No, no, not exactly. He fell forwards - well, actually he was pushed by another student, which doesn't really help - but he'said very upset, and he doesn't seem to be able to use his arm... Everything might all be fine, but I just wanted to let you know what was happening. I'm going straight back out to him now, and I'll ring back on this number in five minutes."

Twenty five minutes later we met staff and Smiler at the local A+E. They'd had to hoist him from the ground into his wheelchair as even his favourite adults had been unable to convince him to let them help him up, and he'd been crying in pain the whole time. It wasn't difficult to see why.

(Excuse the dodgy mobile photos)

Smiler's left elbow has been dislocated and fused in place since birth, and so we've always been used to it not looking like an ordinary elbow, but his right - well, it's hypermobile, but generally elbow shaped.

But not today.

An hour later an x-ray had confirmed his elbow was not only dislocated, but also fractured. Unfortunately the A+E we were in couldn't sedate him to relocate it, so ordered a patient transport ambulance to take Smiler and I to the Children's Hospital which would pick us up within an hour. By the time it actually arrived to collect us, three hours later, Smiler was exhausted by the pain. Because of his haemophilia he can't have ibuprofen which would work on both the pain and the swelling, so he was only on paracetamol as he'd sneezed out the dose of dia-morph instantly it had been sprayed up his nose.

At the Children's Smiler was dosed up again but struggling still with the pain while the consultants debated whether to sedate him to relocate the joint or put him under a general anaesthetic instead. By 11pm he had a slot in theater, and as per the usual protocols, an arrow was drawn on the arm that needed attention...

...but Smiler was not a fan.

First a failed attempt to site a canula, followed by a successful attempt to put him under with gas. Anyone who has had to hold their panicking child - teenager - down, while they're screaming 'No! No mummy! No!' as loud as they can while an anesthesiologist does their bit will know how much that hurts. Three of us holding him down against the gurney, another steadying his arm while yet another tries to get the canula in - it was horrendous.

An hour or so later I was called to recovery, to find Smiler dozy but calm with his arm in a cast. Lots of obs through the night as there was mention of 'limb endangerment' and 'potential nerve damage', partly because the joint had been out for so long before it was relocated.

Next morning the orthopedic surgeon who'd got it back in checked in with us, letting us know that although the joint was technically back in place it was very unstable, and most likely has always had similar construction to his left elbow. So, although it wasn't quite dislocated like his left, it was very much on the verge of it all these years, probably partially dislocating every time he straightened it out but clicking itself straight back in again. Turns out that the most surprising part of all this is that it took so long for it to happen.

So now we're home. He has a follow up next week which will include more xrays, the cast will be on for three weeks followed by a splint which will restrict his movement so that hopefully it won't pop straight back out. By then we'll have more of an idea what comes next, which the consultant has warned may well be more surgery to position pins and plates to keep everything where it's meant to be. Anyone familiar with conversations with consultants will know how vague and non-committal they tend to be, which I find hugely frustrating - I'd rather know the possibilities so that I can do some research, get my head around it. By my reasoning the fact the Big Bone Cheese said he thinks it's highly likely that this will not be the end of it means it's pretty much a certainty, but exactly how big a deal this is going to be, I don't know.

Keep your fingers crossed for us on Tuesday - instead of going out to lunch to celebrate our 14th wedding anniversary, Mr and I will be at an outpatients fracture clinic with Smiler hoping everything is still ... well, not where it's meant to be, as it's never been there, but where it's accustomed to being!

And in the meantime, if you have any ideas on how to entertain a tired, grumpy and hurting fourteen year old who can't use his dominant hand or arm, let me know!

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firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-20838901194570923712016-06-17T23:43:00.001+01:002016-06-17T23:43:23.940+01:00The day for Dad
Around about this time of year the shops are filled with cards and signs and gifts in anticipation of Father's Day - (Sunday 19th June this year btw in case you haven't been paying attention), and it got me wondering how this works in other families.

Since the kids were teeny they've proudly presented Mr with cards covered in painty handprints and lopsided glittery clay tealight holders (or versions of) each year - made at toddler group, or nursery, or brownies, or Mencap junior club, or school. As the years went by the cards evolved from messy glittery lead by a grown up ones into construct (independantly) by numbers affairs, with pre cut shapes and 'here's one I made earlier' examples. After that they became a little more personal, with carefully thought out messages inside and instead of being wobbly addressed Dear Daddy it became a more solemn To Dad, and now they're all in secondary school it's only Smiler who brings one home at all - Petal and Noah tend to hole up in the kitchen for an hour or so together, sat up to the table surrounded with different colour pens, them emerge grinning while trying desperately to look cool and casual with a card behind each of their backs. Because of the different personality types Mr seems to get the same constellation each year - a painty handprint one from Smiler, an ernest message inside an 'I had a good idea but lost interest halfway through so only coloured in half the letters' type card from Noah, and a detailed desperately trying to please I love you so so so much one from Petal.

The accompanying gifts - well, the tangible teabag stapled inside a teapot shape card type naturally dropped off several years ago, and as a family we then gravitated towards 'I'll make you a cup of tea' or 'we'll do the washing up' or 'we'll make dinner' type rather than 'here's a huge teddy bear with a t-shirt that says I love my dad on'.

It's the same for Mother's Day to be fair, so I don't think it's just me being stingy and not wanting the kids to spend money on crap (although that definitely is a part of it), as Mr has led them to do similar - last year (back when we had an oven) Petal baked a batch of cupcakes completely by herself, and helped Smiler to help her ice them. Those cupcakes, for all the messy icing and sticky cases and dry insides were absolutely perfect, and what felt like the best bit for me was the pride beaming from her face as she told me she'd looked up the recipe herself, and that the only thing Mr had done was get the mixer down from the shelf. I know he felt the same when she made him biscuits last year, and when Smiler presented him with the bean he'd grown in a pot.

I get that others show their love by spending at the shops, but I'm glad that we have evolved our family traditions differently. I'd rather all three of my kids use their own words to tell their dad how much he means to them, rather than relying on a printed rhyming message in a card picked up in a supermarket. I'm glad that they want to fuss over him and sit with him and walk the dog with him instead of giving him a 'best dad' mug and then going off to do their own thing. Of course it needn't be all or nothing, but I know too many mums and dads who get precious little meaningful interaction from their offspring to be blasé about mine still (usually!) wanting a kiss goodnight.

So, for Father's Day this year Mr will be getting a lie in - which I imagine will be greatly appreciated as he is at a friend's stag do all day on Saturday; breakfast made for him by the kids - most likely coffee and cereal or toast as we're still without an oven; and then his choice of activities for the day, which will probably consist of trying to find a film that everyone will watch and taking Eli for a nice long walk. So long as there's plenty of hugs to go around, he'll be happy.

How about you? Any plans for the day or memories of days long gone?
firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-34012233200398965322016-06-09T19:58:00.002+01:002016-06-09T19:58:42.666+01:00A day in the life of a carer
It's Carers Week and when I spoke to John Darvall on BBC radio Bristol yesterday he asked what I actually do, in real practical terms. I realised that so much of what I - and other carers - do is so automatic that you don't even realise you're doing it. It needs to be done, so you do it. To focus myself on what I actually do do, I'm noting down everything I do over the course of today. Plan is simple - only thing going on is a hospital appointment for Smiler at 12:20 - endocrinology.

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6:20 Smiler awake, so I go in and help him untangle himself from his bed covers, get on his feet and put on his dressing gown.

6:30 Boiling the kettle for a cuppa for each of us. Smiler wants to sit up to the table in the kitchen, so I help him sit in his chair, adjust the footplate and push him in.

6:45 Warming up Smiler's weetabix and help him eat breakfast, singing along to the radio to make him smile.

7:00 Draw up Smiler's two oral meds into syringes, wipe the spilt weetabix off the table, hand him the syringes one at a time to take the meds. Mix another medication into his drink, remind him he has to drink it before he gets down.

7:15 Back into Smiler's bedroom, wash his face and brush his teeth in his bathroom, help him use the toilet.

7:25 Help Smiler get out of his pyjamas and into his school uniform, put on his splints and shoes so he can walk around the house more independently, and show Smiler again how to open his blinds.

8:15 Wash and cut up a pepper for Smiler to have as a snack in school, check he has a spare change of clothes in his school bag.

8:25 Get the wheelchair from the back of the van, put it up and help Smiler sit in comfortably.

8:30 Time to walk to school, waving at a lollipop lady on the way, making a mental note to check Smiler's room for his library books as we pass the library.

9:00 Handover Smiler to the class team, reminding them that he has a hospital appointment and we'll pick him up at about 11:45. Explain that he will probably have bloods done but he hasn't asked me yet, so if he asks them they should tell him that they aren't sure, and he'll have to ask me when I get there.

9:35 Back at the house, strip Smiler's bed and put the washing machine on, then sit down for a cuppa and to check emails.

9:45 Ring GP to make an appointment for Smiler - as we're new to the surgery he has to be seen before they issue any of his repeats for his regular meds. No appointments available (for the next two weeks), advised to ring back tomorrow at 8AM. I explain it's routine, not urgent, but there are no appointments available to book for two weeks, which is as far ahead as they tell me they can book.

9:50 Spend 15 minutes on the phone to the council, going around in circles in their phone system. Need the email address of someone in local taxation department to give to Smiler's (council employed) OT so she can email them explaining that we/the house meets the criteria for a band reduction for council tax. Get nowhere. Tweet @BristolCouncil to ask them for an email address.

10:10 Paint Smiler's bathroom ceiling.

10:35 Ceiling finished - woo hoo! Time for another cup of tea and a bit of sock knitting.

11:20 Hang up the washing and put another load on.

11:20 Make a packed lunch for Smiler and gather some toys to use as distractions while we're waiting.

11:30 Into the van to collect Smiler from school.

11:40 Into school to pick up Smiler complete with wheelchair, drive into town.

12:05 Mr drops Smiler and I outside the children's hospital while he goes to find a parking space.

12:15 Smiler called to be weighed, so shoes off, splints off, out of the chair, then splints and shoes back on. Squeeze down a hospital corridor with rows of chairs on both sides trying not to run over anyone's toes.

12:20 Smiler called to have his height measured, so shoes off, splints off, out of the chair, then splints and shoes back on again.

12:25 Set Smiler up with headphones on to watch Aladdin dvd while we wait to be called to see the consultant. Mr arrives, having finally managed to park the car.

12:50 Get called for appointment - detangle Smiler from the headphones and dvd player, maneuver into the room and on with the appointment!

13:15 Appointment over (no bloods! Yay!) and I take Smiler to the BRI to get his newly prescribed meds from the pharmacy while Mr goes to get the car.

13:25 Trying to occupy a very stressed Smiler while waiting for meds to be dispensed - time for packed lunch! Help Smiler eat his lunch, then decide he needs to switch off so headphones back on and Aladdin plays.

13:45 Pharmacist comes out, explains she can't dispense meds as Smiler is under 18 and she needs to talk to Smiler's consultant first. Can't get hold of him, so will have to come back for meds tomorrow, or else pick them up from another Boots. Arrange to collect tomorrow from a Boots out of town.

13:55 No point taking Smiler back to school so Mr drives us home instead.

14:20 Take Smiler to the bathroom, wash his face and hands and then settle him on the sofa to watch the end of his film.

14:30 Make Smiler's bed now his sheets are dry, and put another load of washing in the machine.

14:40 Smiler's film is finished so we go into his room to find his library books. Having only just moved house they could be anywhere, but Smiler finds one in a box of books as we unpack them and line them up on his shelf and I find the other.

14:55 Leave Smiler to chill out in his room looking at books while I try to get through to local taxation on the phone again - waste of time.

15:25 Herd Smiler into the kitchen for a quiet cuppa before his brother and sister get home from school. He asks for his shoes off so I undo his shoes, unstrap his splints, and rub his feet for a minute - they need to stretch out after being held stiffly for so long.

15:50 Hang up washing and talk doors with the builder - need to fit a door to his bathroom with a handle he can use independently.

16:25 House is invaded by Smiler's sister and her friends - Smiler potters about while they sort out drinks and apples for a snack.

16:30 Smiler trips over in the hallway - takes both me and Mr to get him up and to the sofa. Read to him to help him relax before we check him over to make sure he hasn't broken anything.

16:45 All seems fine, so Smiler listens to his radio in his room while I sort tea out for everyone.

17:05 Smiler brother returns from school and it's time for tea. I sit and chat with everyone while Mr helps Smiler with his food.

17:40 With tea finished I take Smiler with me to walk the dog - get the wheelchair out of the van and push him over to the field where he walks a little then asks to get back in his chair.

18:15 Mr already find the washing up so we have a cup of tea and a chat while Smiler spends some time in his room.

18:55 Read Smiler one of his long term favourite books (Giraffes can't dance) then help him tidy his room.

19:15 Help Smiler draw his blinds before taking his clothes off to get in the shower.

19:35 Get Smiler's pyjamas on and his dressing gown, and into the kitchen for meds.

19:45 Draw up Smiler's epilepsy meds into a syringe, hand it to him to take. Mix another medication into a drink, replace two slow release patches behind his ears, and check he can still use both arms/hands normally after falling earlier.

19:55 Smiler uses the bathroom, laughing as the wash/dry toilet does its thing - much preferable to me having to wipe and wash him!

20:00 I tag Mr in to do Smiler's teeth while I hand Petal's friend back to her mum.

20:05 Chatting interrupted by Mr calling me into Smiler's bathroom. His jaw has dislocated and I'm the only one trained to manually put it back in. First attempt fails, second succeeds.

20:10 Smiler comes into the living room so we can keep an eye on his jaw - he wants to go to bed but we persuade him by offering an episode of the Lion Guard (kind of a sequel series to Lion King).

20:20 After his jaw has fallen out twice while he was laughing Mr and I realise this will be a long evening with Smiler. I make some sandwiches as there's no point trying to have a 'proper' dinner in case we end up in A+E. Smiler's sister goes to bed, his brother stays downstairs watching the programme!

20:55 Another dislocation which I have to put back in - the amount of pressure you have to use is scary. Smiler vomits so Mr takes him to change his clothes and brush his teeth while I clean up in the living room. Noah decides to go to bed - I remind him we might have to take Smiler in to the hodpital and not to worry if he hears us bustling about.

21:10 Smiler is back in the living room in fresh pyjamas, I put on another episode of Lion Guard and cross my fingers.

21:35 No further dislocations, so I take Smiler to the toilet and we tuck him into bed.

21:40 Cup of tea! Fold the washing, and load the machine with Smiler's pyjamas and rinse.

22:00 Sneak a peek into Smiler's room - he's in bed snoozing with his mouth closed.

22:05 Put a load of washing on including the pyjamas and set the timer so it'll be finishing when I get up.

22:15 Watch TV for a bit with Mr - there are emails I should be writing but I'm knackered.

22:40 Smiler's still sleeping - mark the time on our white Smiler board, set my alarm for in an hour and Mr's for an hour after that, and go to bed.

23:40 Up and check the board - he was sleeping when Mr checked him an hour ago. I peek in, and Smiler's mouth still closed - I set the alarm for in two hours, Mark it on the board and go back to bed.

1:40 Up and check the board (fine), check Smiler (fine), write on the board that I'm done, and back to sleep.

😴 😴 😴

Carried over for tomorrow:

● check Smiler can use both arms after falling today

● ring GP surgery at 8AM to get a routine appointment for Smiler so they can issue his scripts

● tell school about the fall, the jaw dislocations and the late night

● chase up the medication that the pharmacist couldn't give us with the local Boots, if no joy then the BRI pharmacy and the consultant

● keep trying to put the council OT and the council local taxation in touch with each other

● check out door handles in B&Q to see what would work for Smiler

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email@example.com:blogger.com,1999:blog-4662283154394512352.post-83962969241754962792016-06-01T10:38:00.001+01:002016-06-01T10:44:01.289+01:00Next week is Carers Week
Being a carer isn't always straightforward - even if you're clear about the extra things you do that constitute caring, sometimes people around you don't get it. The first time I approached the reception desk at the gp surgery for example, and asked to be added to their Carers Register.

'So, who do you care for then?'

My son, Smiler.

'Oh they don't mean that kind of carer, it's just for people who care for someone with a disability'

Smiler has a disability.

'But you're his mum, not his carer'

I'm a parent carer.

'What's wrong with him then?'

He has a unique chromosome disorder

'I'm not sure that counts...I'll just check with someone.'

...

'No, I'm sorry, it just means people who are proper carers, for adults.'

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And a week later, having checked with the Carers Support Centre that the gp Carers Register is intended to include ALL carers, I gave it another go.

'But children need so much looking after anyway, I don't think it matters if he's disabled'

Well, he's entitled to DLA, which means he needs "substantially more care than another child of the same age without a disability"

'What was it you said was wrong with him?'

Severe learning difficulties, epilepsy, haemophilia, microcephely, specific language impairment, sensory integration disorder, scoliosis. He's non verbal and doubly incontinent. He has nine consultants that's he sees at least twice a year (each), four different regular medications twice a day and another three that are PRN. He can't weight bear so is hoisted in and out of his wheelchair from bed or a beanbag.

'Oh. Okay. I'll tick the "carer" box on your records then.

But why does it have to be do hard? I don't want to have to list Smiler's health issues to a receptionist, and I don't see why I should have to. If I was caring for my elderly dad, or my partner, would I be expected to explain 'what's wrong with him'? I should point out that this conversation was years ago, but I regularly talk to other parent carers who face similar challenges. While (and I quote the surgery receptionist here) "proper carers", as in carers of visibly disabled adults, seem to be acknowledged, there's still a long way to go for the rest of us.

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This is the first post in a short series that I'm writing for Carers Week, which begins on 6th June. For more info see the Carers Week website, and for events and general goings on next week in Bristol and South Glos check out the Carers Support Centre news page.

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firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-1902918646112814802016-05-21T15:43:00.000+01:002016-05-21T15:43:37.252+01:00Stage One {adaptations}
We've split the adaptations up into stages, the first of which is creating Smiler's bedroom and bathroom out of what was the living room. I'm counting days as working days though, so these 20 days were over the course of a month, if that makes sense (not helped by the builder going on holiday for week!).

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Ta da - a bathroom! Watch this space to see what it looks like inside...

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firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-81931868530851781932016-05-02T12:39:00.001+01:002017-03-23T13:13:57.212+00:00Smiler and the lack of hormones

I grumble about my kids and their hormone invasions, as I guess most parents do. Noah has needed a new pair of school shoes every term this school year, and I don't mean old terms, when there were three in a year - I mean new terms, six week terms, and he's now - having just turned thirteen - in a size ten. Petal is almost twelve, and some days she cries if you look at her wrong - sensitive is an understatement! Smiler, although he's the oldest of the bunch, is still a hormone free zone, which brings with it its own challenges, and we're getting towards decision time.

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Mr and I have weighed up the pros and cons for Smiler, and the pros list is pretty strong. Timing is another issue that we're dancing with - Smiler's birthday is September, which means he's now 14 years 7 months old. The average age for the very beginning of puberty - the start of the internal changes that aren't outwardly noticeable - is 9 years 6 months, which puts Smiler a little over five years behind. It's difficult to try and put that to one side and concentrate on whether or not we should be treating when you feel like there's a clock in the back of your brain, ticking louder and louder.

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During adolescence the bones become much denser, packing on strength so that the gradual decline that begins in adulthood doesn't develop into osteoporosis for many many years. Of course, if that early increase in density doesn't occur, the slide into osteoporosis is hugely accelerated. Smiler has issues with his skeletal system anyway - a permenantly dislocated and fused elbow joint, (surgically corrected) bilateral dislocated hips, relatively mild scoliosis, and his jaw regularly dislocates on both sides at once, locking open when he yawns. With all this going on already, we know that the weakening of his bones combined with his atrocious balance is likely to result in many many broken bones in the years to come, each bringing with them pain and confusion, probable general anaesthetics for them to be assessed and plastered, and then the impact on his life while he's in cast, time off of his feet if it's a leg or ankle, physio for however long it takes for him to build his strength back and return to normal. It's a lot - and by dosing him now we can minimise his risk.

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It might sound harsh to someone who isn't experienced with people with intellectual disabilities the level of Smiler's, but his future fertility and sexual function are not factors that we're taking into consideration. Statistically he's very unlikely to be fertile anyway - individuals with genetic conditions like his usually aren't. The issue of his function - well, on a purely physical level, his coordination is so poor he can't get his foot into his shoe without help, but it's the capacity to consent side that rules it out as far as we're concerned. While his exact level of understanding is difficult to ascertain, his official diagnosis is of a severe learning disability - that puts his IQ between 20 and 35. If he can't understand, he can't consent, so any such relationship would by definition be abusive.

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As well as physical changes, during adolescence hormones trigger psychological and emotional changes. Some of these are obvious - the stroppiness for example - but there are other things going on too, such as greater development of impulse control. Right now, with no hormone surges, Smiler isn't experiencing these effects, so intellectual disability aside, his understanding and behaviour are still immature. He gets very excited very easily, and finds it difficult to calm down. In a lot of ways, he's like a ridiculously overgrown toddler - he falls over (often), laughs hysterically for ages when something tickles his funny bone, needs lots of reassurance when he's anxious. Without providing the hormones artifically that his pituitary gland would ideally be producing itself, these changes just won't happen, which means that he'll remain - emotionally - a child.

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Having gone through the process of wondering if there's a problem, starting investigations, having the suspicions confirmed (isolated gonadotrophin deficiency to be exact), deciding whether to treat or not, we're now at the point of wanting to know more about the treatment options. The front runners seem to be daily applications of testosterone gel or (painful) intramuscular injections every three to four weeks - neither of which is exactly appealing. Not as bad as daily growth hormone injections though, which was a real possibility at one point, so I suppose we need to look on the bright side. As to which route we end up going down - watch this space!

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firstname.lastname@example.com:blogger.com,1999:blog-4662283154394512352.post-79167810994209648202016-04-14T19:42:00.000+01:002016-04-15T10:39:02.820+01:00Things I Did Not Know

I wanted to share a few handy nuggets of information that I have found useful while I've been sourcing the (mostly) specialist equipment for Smiler's bathroom. They come under that category of Things I Did Not know (But Wish Someone Had Told Me) - you know how you often find things out just that little bit too late to take advantage of?

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The most obvious of these is to do with VAT exemptions. Rather than trying to explain the rules myself, I just want to point you in the direction of a couple of links that I found really helpful in getting my head around it. I'd recommend the Independent Living website as a good place to start to do some research about equipment and to have a browse around anyway (and sign up to their weekly newsletter while you're there), but especially the VAT exemptions page for an explanation of what conditions need to be met in order for a purchase to be exempt from VAT, and the helpful advice it gives about how you actually benefit from that exemption! They have a blank exemption form that you can download and fill in, which is handy if a business you're using isn't familiar (or even aware) of the system and does the equivalent of getting scared and going silent and looking at you like a rabbit in your headlights when you mention it. There's also the official government page on VAT relief for disabled people which gives the legal basis for the exemption, but to be honest I found the Independent Living explanation more useful and applicable to real life.

Have you read the Independent Living info yet? If not, go and read it quickly so the next bit makes sense - it won't take you long, and it opens in a new window so you can close it when you've finished reading and come right back here.

Okay. You'll now know that as well as the end user being eligible for the exemption, the equipment itself has to be eligible. You'd think this would be easy to find out, but I struggled. I was emailing manufacturers who'd designed the blasted stuff and couldn't tell me if it would be eligible, because they 'don't get involved in that side of things'. A shortcut I found was to see if the item was stocked here, because at the very beginning of their product description it's made very clear whether an item is exemptible (is that a real word?) or not. I'm not actually buying anything from here however - long story and I think I'll take the high road and simply say that the prices they offer are not the most competitive, and nor is their customer service.

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Researching the equipment that you're looking to buy is essential - some of it can be bloody expensive and although it may not be possible to be certain that it will meet your needs, there are some simple checks you can use to get a fairly good idea.

● I would highly recommend talking to an OT if you have access to one, and if you're looking at major home adaptations you should be able to get an assessment. If they mention a piece of equipment and you have no idea what that is, tell them! Some can assume that you'll know about things that you don't, or use a specific brand name when actually they mean any one that is like that might work for you. If they're talking about a specific item, ask if they can write down the name of it for you, or email you a link to somewhere you can buy it from. Even if you don't get it from there, at least you'll know what they were going on about!

● Try gathering other users/carers opinions on equipment - use social media or any forums or groups that you're part of to say "Hey, I've been thinking of getting grab rails / specialist cutlery / a wash&dry toilet - does anyone have any recommendations or horror stories to share?" If it's a piece of kit for someone other than yourself, have a think about whether there is anyone else whose brains you can pick about what works - does your child attend school for example, could you ask their teacher what cutlery/crockery they use to eat lunch when they're at school, or what kind of grab rails they have in the bathrooms there and how your child gets on with them. If your dad regularly goes to a specialist setting overnight, can someone there who is familiar with him spare ten minutes to show you the type of bed he uses, and whether it has any particular functions or elements that suit him, such as adjustable positioning or a guard rail.

● Use websites of organisations such as the DLF (Disabled Living Foundation) who have loads (and loads) of general information factsheets about features to think about when looking at equipment (all of which are free to download), as well as Living Made Easy, who have gathered together info on specific types of equipment to help you work out what you need, and what is actually available out there.

● See if there's any way you can actually try out the equipment (or at least see it and touch it) before you part with your cash - maybe through the DLF's short term equipment loan library, or at a local equipment demonstration centre. It might be worth asking your OT if their department has any of what you're pondering that you could borrow for a week or two, or at least for you to take a look at. For bigger purchases I'd recommend getting in touch with a company rep and see if they can come to you - we had visits from reps from two different companies when we were choosing a wash and dry toilet - but obviously keep in mind they have a vested interest in wanting you to choose their product!

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When you've decided exactly what you want, run through your usual buying things routine - mine is to google the item (including a model number as well as manufacturer if possible) and see where I can get it from. Keep in mind possible VAT exemptions and delivery charges, and I always try and check out a website's reputation if I haven't heard of it before - look for independent reviews, read a forum thread or two - if there are pages of comments about items either not turning up, or else turning up but being generic copies instead of the 'real' branded version that was paid for - well, I personally wouldn't risk it.

Do check out ordinary mainstream shops as well as specialist suppliers, as sometimes they can surprise you - places like Argos and Boots for example are worth a look.

I've found that prices can sometimes be negotiated a little - if you're spending a lot with one company and they also sell the tap / plate / other relatively smell item that you want, but are charging more than you've seen it for elsewhere, it might be worth asking if they could possibly match that lower price - it's more business for them, as well as less hassle for you, and you might save yourself a separate delivery charge - obviously be polite and be prepared for them to say 'sorry but no'. In my experience as long as you're being reasonable then you're in with a chance, and hey, if they say no - it's not like you've lost anything!

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Okay, that's it - hopefully some of that will be helpful to someone at some point - maybe I'll be the someone that clues someone else into something that they didn't already know. It's also made me realise how much I've achieved by actually doing the research and sourcing all the equipment for Smiler's adaptations - no wonder I'm shattered!

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firstname.lastname@example.com


text:
Castillo Butterfly Guardian Angel ClipCastillo
Emilia Castillo signed Butterfly Guardian Angel Clip was commissioned by Neiman Marcus in the late 80's - early 90's as part of their Christmas Clip and Everyday-wear Collection. Pin is rare and hard to find. Measures about 2 1/4 inches tall.
Pin will come in a black velvet bag. Shipping is fast and is $4.95 flat insured rate for as many pieces as you purchase in the United States. International will be based on destination. No Italy.


text:
This is only for those that have signed up for and paid for participation in the Golf Tournament on July 12, 2019.
* Hors d'oeuvres and soft drinks provided by thr Museum. * No Host Bar available *Putting Contest
*Door Prizes and the Grand Prize ….. Two Tickets to the Homesteader Days Concert - featuring Ned LeDoux - Terry Clark - Bucky Beaver and the Ground Grippers.


text:
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We are a small company of developers working as partners for a number of companies from various industries all over the world. And we love games, mobile apps as well as enterprise solutions.View Profile
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Who are we, you ask? We are video game fanatics from way back, but we love the new generation of phones and other devices! We're combining the simple gameplay and fun of the golden age of video games with the portability and unique control options of today.View Profile
Indie Games DesignView Profile
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Hello my dear friends! Welcome to my Profil of Popular Appsl! I am Emma, I am a little princess. I live in my beautiful Dreamland. I am very glad to see you also in my YouTube channel. I am very glad my dear little friends to see you I am very happy ! Hello!!! *** All Content created by EMMAGAMES and JUICYDESIGN Berlin Irina & Ronald Maier developed awesome and fabulous education and entertainment games for kids especially for little girls. We create super cute characters, illustrations, colors and animations! The main character of our games is the cutest girl SWEET LITTLE EMMA. She lives in her Dreamland ;-) Only recently Emma has little Friend. His name is Jacob. We can't wait to see what will have happened. All our game apps are familiy friendly and always includes beautiful music and cool soundeffects with adorable HD graphics and sounds.View Profile
AKUMEN is the address where your IDEA becomes your PRODUCT…View Profile