Is packing. Packing the clothes, packing the food, packing the medicines, then unpacking to double check, then repacking again in case something got left out in the first repacking. Packing the tent, and realising the bag was strangely light. Searching the house, and the parents' house, and finally finding the poles lurking in a corner of a bedroom. Packing the bedding, and losing the chairs. Packing the purse, and realising you've spent the money you were planning to hand to the carer. Packing the sponge bags, then needing the toothbrushes.
The bus is now packed to shoulder height, and that's without children, C's belongings and tent, and limiting ourselves to one wheelchair per child. Countless electrical equipment will need to be sorted into it in the morning, and our Bond villain camp chair needs tracking down. There's a freezer full of frozen tummies to squeeze in somewhere; a small child who might want some kind of toys at some point, and the tins of food piled high on the passenger seat need shuffling into cubby holes at the back so C can sit down.
How can a Mercedes Sprinter not be big enough to take four of us camping? How have I three times now completely cleared the laundry pile only to turn around and find more things to wash? What will I forget this year? Where is LF's iPod? Do the girls need to take bibles when they can't read? Why is MetCheck predicting six days of rain and the BBC only one? And can I be loyal to the BBC please?
We're off first thing in the morning - or as close to first thing as we can manage. We may have bloggability; if not, then have a good week and please think of Joshua training busily, and various friends whose children are very sick right now.
See you when we get back
Tia
Saturday, 31 July 2010
Friday, 30 July 2010
Listen.
Today, we got to meet a fairly cool group of medical students. A group who had raised £22,000 for charities over the past year, and who had decided to give 1/3rd of that to ROSY.
As Little Fish and lots of friends played croquet, the rest of us less energetic ones chatted to these student doctors. And we talked about their recent placements, and our experience of hospitals and doctors.
And here's the advice I'd like to give - boiled down from what most of us were saying to them at the time.
First of all, listen.
When you're faced with a medically complex, profoundly disabled child, listen to the parents. Don't panic about the various chronic conditions the child has, see past them to the present acute need. Listen to the parents.
Think about whether you actually need a full medical history. When you have a teenager in front of you, do you really need to ask questions about pregnancy and gestation? Think about the impact some of your questions may have on the parents; remember that some of the information you might want to gather could be fairly sensitive. And remember that we love our children, that we think their lives have value, and we believe their quality of life is generally pretty good.
So, listen. If the parents tell you not to worry about the fact that the child is having a seizure, don't call the crash team. It might just be that seizures are a normal part of life for that child. If the parents tell you you'll never get blood out of that particular vein, consider the fact they may well have met many other medical people who might have tried before you got here. If we suggest that a certain proposed treatment will have negative consequences, accept that we might just be speaking with the voice of experience.
Forgive us when our timelines are muddled. If we've been up all night several nights in a row, we might be having difficulty remembering what day it is today, let alone when this present set of worrying symptoms appeared. We might need to give you more information, in a fairly rambling monologue, than you think you need. Sit down, if you need to - we need to give you this information.
Please, treat our children as human beings. When I tell you my child can indicate yes and no, wait for me to let you know how she does. You might well think I'm delusional, but if you could swallow that superior look and let my child show you what she can do, it would be much appreciated. And if you won't address her directly yourself, please be patient whilst I do so on your behalf. Do NOT stick my child with a needle when I'm only halfway through telling her that's what you need to do.
Don't be afraid to say you don't know. We don't know either, that's why we've come to you. It is OK for you not to know either; if the answer were something simple and straightforwards we would probably not have needed to come to you in the first place.
You are undoubtedly the medical experts. But we are the experts in our children. Listen to our suggestions. Wait until we get through the whole explanation of what we think might work. Even if you think it's ludicrous, please wait until we've finished explaining our reasoning before you shoot us down. And, ideally, please don't shoot us down!
We're not expecting you to fix our children. We're not expecting miracles. Please remember that when we come through A&E, we're looking for a short term solution to a short term problem. We know that our children aren't going to start walking and talking as a result of your treatment - but we also know that they are still children worthy of receiving treatment for their current emergency. There are all sorts of multilayered DNR forms our children may have; please take the time to read them if they are in place before you make assumptions.
Thank you. Thank you for wanting to work with our children. Thank you for coming to see our children, even if they scare you. And thank you for listening.
Tia
As Little Fish and lots of friends played croquet, the rest of us less energetic ones chatted to these student doctors. And we talked about their recent placements, and our experience of hospitals and doctors.
And here's the advice I'd like to give - boiled down from what most of us were saying to them at the time.
First of all, listen.
When you're faced with a medically complex, profoundly disabled child, listen to the parents. Don't panic about the various chronic conditions the child has, see past them to the present acute need. Listen to the parents.
Think about whether you actually need a full medical history. When you have a teenager in front of you, do you really need to ask questions about pregnancy and gestation? Think about the impact some of your questions may have on the parents; remember that some of the information you might want to gather could be fairly sensitive. And remember that we love our children, that we think their lives have value, and we believe their quality of life is generally pretty good.
So, listen. If the parents tell you not to worry about the fact that the child is having a seizure, don't call the crash team. It might just be that seizures are a normal part of life for that child. If the parents tell you you'll never get blood out of that particular vein, consider the fact they may well have met many other medical people who might have tried before you got here. If we suggest that a certain proposed treatment will have negative consequences, accept that we might just be speaking with the voice of experience.
Forgive us when our timelines are muddled. If we've been up all night several nights in a row, we might be having difficulty remembering what day it is today, let alone when this present set of worrying symptoms appeared. We might need to give you more information, in a fairly rambling monologue, than you think you need. Sit down, if you need to - we need to give you this information.
Please, treat our children as human beings. When I tell you my child can indicate yes and no, wait for me to let you know how she does. You might well think I'm delusional, but if you could swallow that superior look and let my child show you what she can do, it would be much appreciated. And if you won't address her directly yourself, please be patient whilst I do so on your behalf. Do NOT stick my child with a needle when I'm only halfway through telling her that's what you need to do.
Don't be afraid to say you don't know. We don't know either, that's why we've come to you. It is OK for you not to know either; if the answer were something simple and straightforwards we would probably not have needed to come to you in the first place.
You are undoubtedly the medical experts. But we are the experts in our children. Listen to our suggestions. Wait until we get through the whole explanation of what we think might work. Even if you think it's ludicrous, please wait until we've finished explaining our reasoning before you shoot us down. And, ideally, please don't shoot us down!
We're not expecting you to fix our children. We're not expecting miracles. Please remember that when we come through A&E, we're looking for a short term solution to a short term problem. We know that our children aren't going to start walking and talking as a result of your treatment - but we also know that they are still children worthy of receiving treatment for their current emergency. There are all sorts of multilayered DNR forms our children may have; please take the time to read them if they are in place before you make assumptions.
Thank you. Thank you for wanting to work with our children. Thank you for coming to see our children, even if they scare you. And thank you for listening.
Tia
Wednesday, 28 July 2010
Here's to one amazing boy
The first time I met Joshua, he was a small boy playing with his sisters. His older brother, who happens to have Down's Syndrome, was helping his older sister, who happens to have Cornelia de Lange Syndrome to eat her lunch. His father was rebuilding the family kitchen in an attempt to create more useable living space to accommodate the needs of their growing family, his mother was hanging out endless acres of snowy white terry towelling nappies, and he and his middle sister were playing with his newest little sister.
Over the past few years I have seen that little boy grow into a superbly caring young man. A boy who quietly gets on with things, who doesn't complain (or at least not in public). A boy who has watched his mother struggle with her own medical conditions, whilst his siblings have become increasingly and worryingly unwell too. A boy who has watched his little sister deteriorate as she progresses through the various stages of Leigh's Disease. And who has seen his grandfather approaching the end of his life through cancer.
Except, of course, that isn't really true. I haven't seen Joshua watch that. Because, as that was all going on, Joshua was quietly going blind. His vision, never great, grew dramatically worse, and Joshua felt that this was minor compared to what his siblings were going through. He decided that his parents had enough worries, and he didn't make an issue of it.
It's an issue now. Joshua's school have been helpful, despite not having had much experience of a child with serious visual impairments. But now Joshua cannot see the white board. He can't read the work he is supposed to be doing. And the educational system, which has been so supportive towards his siblings' special needs, is not able to provide the equipment he needs in order to be able to access the curriculum and take his exams.
I think at this point, most of us would simply sit down and give up. But Joshua's not like that. Far from giving up, Joshua has decided to do his best to raise the money himself. The equipment Joshua needs is a Low Vision Aid, the ReadIT Scholar, ZoomText and a Rugged Laptop to use it all on. The estimated cost of all this is approximately £6,500. And Joshua is hoping to raise this by having his own sponsored bike ride. Clearly, for his own safety (and for the safety of people around him!) Joshua cannot cycle on public roads. So, during the family's two week summer holiday, he is hoping to cycle one hundred miles on dirt tracks and open countryside. Not only that, but he wants to do so whilst towing his oldest sister in a bike trailer. Not only will she really enjoy the experience herself, it will give the rest of the family a break from having to watch her every move.
Joshua really is an amazing young man. If you would like to help Joshua raise the funds he needs, you can make a donation through his mother's blog. Here you can also find sponsorship forms, if you would like them. If you are unable to help financially, then Joshua and his family would value prayers as they try to find the funds to get this equipment for Joshua.
Thanks for reading,
Tia
Over the past few years I have seen that little boy grow into a superbly caring young man. A boy who quietly gets on with things, who doesn't complain (or at least not in public). A boy who has watched his mother struggle with her own medical conditions, whilst his siblings have become increasingly and worryingly unwell too. A boy who has watched his little sister deteriorate as she progresses through the various stages of Leigh's Disease. And who has seen his grandfather approaching the end of his life through cancer.
Except, of course, that isn't really true. I haven't seen Joshua watch that. Because, as that was all going on, Joshua was quietly going blind. His vision, never great, grew dramatically worse, and Joshua felt that this was minor compared to what his siblings were going through. He decided that his parents had enough worries, and he didn't make an issue of it.
It's an issue now. Joshua's school have been helpful, despite not having had much experience of a child with serious visual impairments. But now Joshua cannot see the white board. He can't read the work he is supposed to be doing. And the educational system, which has been so supportive towards his siblings' special needs, is not able to provide the equipment he needs in order to be able to access the curriculum and take his exams.
I think at this point, most of us would simply sit down and give up. But Joshua's not like that. Far from giving up, Joshua has decided to do his best to raise the money himself. The equipment Joshua needs is a Low Vision Aid, the ReadIT Scholar, ZoomText and a Rugged Laptop to use it all on. The estimated cost of all this is approximately £6,500. And Joshua is hoping to raise this by having his own sponsored bike ride. Clearly, for his own safety (and for the safety of people around him!) Joshua cannot cycle on public roads. So, during the family's two week summer holiday, he is hoping to cycle one hundred miles on dirt tracks and open countryside. Not only that, but he wants to do so whilst towing his oldest sister in a bike trailer. Not only will she really enjoy the experience herself, it will give the rest of the family a break from having to watch her every move.
Joshua really is an amazing young man. If you would like to help Joshua raise the funds he needs, you can make a donation through his mother's blog. Here you can also find sponsorship forms, if you would like them. If you are unable to help financially, then Joshua and his family would value prayers as they try to find the funds to get this equipment for Joshua.Thanks for reading,
Tia
Tuesday, 27 July 2010
better and worse
So, today started badly with the realisation that I had run out of one of Mog's meds; one which the chemist doesn't keep in stock as it is too expensive.
But then it got better, because Mog managed to be hoisted into the new chair, and managed to contain her unhappiness until it subsided and she was comfortable.
We went off to the local orthopaedic hospital, where things got worse when the receptionist in one part of the building wouldn't accept the return of a wheelchair and wanted me to wait and track down the person who had loaned it and asked us to return it there today. It would have been a long wait as she was not in today.
Then they got better - only a ten minute wait in X-ray. And worse, because yet again the children's play area had been made inaccessible to anyone in wheelchairs due to extra chairs being placed there. And then better again, because the radiographer promised to bring it up at a staff meeting tomorrow.
And then things got better yet, with only another ten minute wait to see Mog's surgeon. Who is now happy that Mog's hips are in exactly the right place and reasonably confident that the metalwork is not causing her pain. And who then threw us for a loop by suggesting intrathecal baclofen for her spasm, reassuring us that it was a very minor op. All experiences welcome.
Then things got somewhat worse, as I realised I did not have my purse. And that it had not been handed in at any of the receptions. But better again, when I scraped up enough change in the bus to find some lunch for Little Fish as we went off to get her wheelchair repaired. And better yet when her chair was kitted out with four new outdoor wheels. Apparently she's had indoor wheels for the past two years and no one has noticed. Grass and mud might just be a little friendlier now. And much better when we got home and found my purse on the settee.
Betterer and betterer; Nanny McPhee & the Big Bang proved to be a hit with everyone, although I do hope Little Fish gets over her desire to tell everyone she is all covered in poo before we go to New Wine (Church camp).
And then hurrah for inclusive siblings; Little Fish singing songs and, unprompted, finding verses for Mog to join in with. There's something pretty special about listening to her sing "If you're happy and you know it, sit in your buggy."
More minor niggles; the realisation that Mog's Blue Badge runs out next week and I still haven't found anywhere to get her passport photos done. I haven't had the van's air conditioning fixed yet, there's Queen Anne's Lace growing instead of grass in the back garden, I don't think I have enough semi-respectable clothing left to last a week under canvas, we keep eating the food I keep buying for camp, and I still haven't checked whether the cat vomit has eaten through the tent canvas. Ought to get onto that really.
Still, on balance, not a bad day I think.
Tia
But then it got better, because Mog managed to be hoisted into the new chair, and managed to contain her unhappiness until it subsided and she was comfortable.
We went off to the local orthopaedic hospital, where things got worse when the receptionist in one part of the building wouldn't accept the return of a wheelchair and wanted me to wait and track down the person who had loaned it and asked us to return it there today. It would have been a long wait as she was not in today.
Then they got better - only a ten minute wait in X-ray. And worse, because yet again the children's play area had been made inaccessible to anyone in wheelchairs due to extra chairs being placed there. And then better again, because the radiographer promised to bring it up at a staff meeting tomorrow.
And then things got better yet, with only another ten minute wait to see Mog's surgeon. Who is now happy that Mog's hips are in exactly the right place and reasonably confident that the metalwork is not causing her pain. And who then threw us for a loop by suggesting intrathecal baclofen for her spasm, reassuring us that it was a very minor op. All experiences welcome.
Then things got somewhat worse, as I realised I did not have my purse. And that it had not been handed in at any of the receptions. But better again, when I scraped up enough change in the bus to find some lunch for Little Fish as we went off to get her wheelchair repaired. And better yet when her chair was kitted out with four new outdoor wheels. Apparently she's had indoor wheels for the past two years and no one has noticed. Grass and mud might just be a little friendlier now. And much better when we got home and found my purse on the settee.
Betterer and betterer; Nanny McPhee & the Big Bang proved to be a hit with everyone, although I do hope Little Fish gets over her desire to tell everyone she is all covered in poo before we go to New Wine (Church camp).
And then hurrah for inclusive siblings; Little Fish singing songs and, unprompted, finding verses for Mog to join in with. There's something pretty special about listening to her sing "If you're happy and you know it, sit in your buggy."
More minor niggles; the realisation that Mog's Blue Badge runs out next week and I still haven't found anywhere to get her passport photos done. I haven't had the van's air conditioning fixed yet, there's Queen Anne's Lace growing instead of grass in the back garden, I don't think I have enough semi-respectable clothing left to last a week under canvas, we keep eating the food I keep buying for camp, and I still haven't checked whether the cat vomit has eaten through the tent canvas. Ought to get onto that really.
Still, on balance, not a bad day I think.
Tia
Monday, 26 July 2010
Chariot of fluff
It's not totally tweaked yet. 
But I think I'm starting to see how it might just work for her.
Meanwhile, noises off "Mummeeee, Mummeeeeeeeeeeee!!!!!!!! Now I am asleep, you need to come into my room and sort me out."
Nice try...
Tia
(ps. Hi A - she is telling the truth, I really have!)
But I think I'm starting to see how it might just work for her.Meanwhile, noises off "Mummeeee, Mummeeeeeeeeeeee!!!!!!!! Now I am asleep, you need to come into my room and sort me out."
Nice try...
Tia
(ps. Hi A - she is telling the truth, I really have!)
Sunday, 25 July 2010
Tell me a story
Most evenings, I read Little Fish and Mog a story together before I shovel them into bed for the night. And how it generally works is that I read the story to them both, then Little Fish takes the book and "reads" the story back to Mog again; lots of audio description about the pages of the book and a little bit of narration too, especially if there is a shouty dialogue about a naughty child or pet.
Last night, the tables were turned. I dug out an old story cassette. Popped it into a tape recorder (ancient technology now!), plugged the recorder into a special latch box, plugged Mog's switch into the other end of that same box, and Mog read Little Fish a story instead.
Tia
Last night, the tables were turned. I dug out an old story cassette. Popped it into a tape recorder (ancient technology now!), plugged the recorder into a special latch box, plugged Mog's switch into the other end of that same box, and Mog read Little Fish a story instead.
Tia
Friday, 23 July 2010
Day One
Today the first official day of our school holidays. Little Fish finished on Tuesday, Mog came home unwell on Monday and didn't manage the rest of the week, so I've had both girls at home for a few days anyway, but today was when the holidays were supposed to begin.
Not a bad first day in some respects; nice weather, lunch out, civilised children, an afternoon in town and phone calls confirming delivery of new buggy on Monday and new supportive insert ready for collection. Of course I missed the cut off for collection by ten minutes, so will either have to scramble to collect it before our 9.15 appointment (at home) on Monday or else leave it until after the buggy has been delivered. Which would be a pain, since ideally I'd like the buggy to be set up to fit it.
Oh, and the reason why we missed it and why we were in town? We were seeing the GP - Mog has decided to celebrate the start of the summer holidays with a chest infection.
Chicken Pox last year; we are not missing New Wine again so she's got 8 days to get over it.
Tia
Not a bad first day in some respects; nice weather, lunch out, civilised children, an afternoon in town and phone calls confirming delivery of new buggy on Monday and new supportive insert ready for collection. Of course I missed the cut off for collection by ten minutes, so will either have to scramble to collect it before our 9.15 appointment (at home) on Monday or else leave it until after the buggy has been delivered. Which would be a pain, since ideally I'd like the buggy to be set up to fit it.
Oh, and the reason why we missed it and why we were in town? We were seeing the GP - Mog has decided to celebrate the start of the summer holidays with a chest infection.
Chicken Pox last year; we are not missing New Wine again so she's got 8 days to get over it.
Tia
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