11.1.2010
It is so ood when a day goes to plan!! Tom and Kesia went back to school today, so I tackled the house. it's not all done, but we have a nice bedroom and living area, and I cleaned the kitchen thoroughly.
After school, Tom made some rocky road cakes with Liz while I took Kesia to Tesco with a recipe. We shopped (she loved "bleeping" the items at the till), and then came home to cook her dinner. She made - with very little help - a lovely chilli and rice, making enough for us too! I'm thrilled to say she then ate it very well and even had a little banana custard for pudding. The drinking is happening as I type!
So we have bathtime left, bed for Tom and reading and violin practice for Kesia.
After school, Tom made some rocky road cakes with Liz while I took Kesia to Tesco with a recipe. We shopped (she loved "bleeping" the items at the till), and then came home to cook her dinner. She made - with very little help - a lovely chilli and rice, making enough for us too! I'm thrilled to say she then ate it very well and even had a little banana custard for pudding. The drinking is happening as I type!
So we have bathtime left, bed for Tom and reading and violin practice for Kesia.
9.1.2010
Some of you may have noticed that I've added a new page to the site. Others of you may be confused and wondering what's changed when you get a notification that I've updated it. So... I will try and post a little note here each time I update to let you know where to look for the changes.
The biggest change is the new page. I thought about it a while before adding it, but decided that it was for the best. The aim of this site is primarily to inform those who care for us of the news in our lives. In the last year, we have had difficult events and emotions to contend with, and it can be a little too difficult to talk about it repeatedly to people who feel so strongly for us all. So here goes.
The page in question is called Homenotes. This is because these are the notes I hand over to school on Zack's return from times out of school. The information help school know him a little better, as his behaviour is quite different at home (quite common, apparently), and they are then able to address specific problems in therapy sessions.
A little word of warning. Zack has big big problems as a result of his Asperger's syndrome. Other life events have contrived to give him more to deal with than he can cope with. I'm very pleased to say that he is doing very well at school, and is referred to over and above all as a little boy with a lovely nature.
Home life is not like that.
The homenotes do not make happy reading, but as they are destined for school, they are candid. I have not made allowances for mums and dads' feelings.... So by all means read away, but don't feel obliged to!!
The biggest change is the new page. I thought about it a while before adding it, but decided that it was for the best. The aim of this site is primarily to inform those who care for us of the news in our lives. In the last year, we have had difficult events and emotions to contend with, and it can be a little too difficult to talk about it repeatedly to people who feel so strongly for us all. So here goes.
The page in question is called Homenotes. This is because these are the notes I hand over to school on Zack's return from times out of school. The information help school know him a little better, as his behaviour is quite different at home (quite common, apparently), and they are then able to address specific problems in therapy sessions.
A little word of warning. Zack has big big problems as a result of his Asperger's syndrome. Other life events have contrived to give him more to deal with than he can cope with. I'm very pleased to say that he is doing very well at school, and is referred to over and above all as a little boy with a lovely nature.
Home life is not like that.
The homenotes do not make happy reading, but as they are destined for school, they are candid. I have not made allowances for mums and dads' feelings.... So by all means read away, but don't feel obliged to!!
5.1.2010
Back to school. This will be a short, but wonderful entry. As we arrived at Southlands, Zack's whole demeanour changed. His face broadened, the constant tension in him seemed to melt away, and we happily strode into the Lodge - first ones there. He walked into his bedroom, and I noticed that staff had made his bed with his home duvet. Zack really seemed to have come home. Back in the sitting room, I had a cup of tea, and he came to sit on my lap. For about 30 minutes, he just held me and kissed me. It was amazing. Very and truly affectionate, with none of the clingyness or "manicness" that usually comes with any hug.
I left easily, with a much lightened heart!
I left easily, with a much lightened heart!
4.1.2010 Back to normal
Nick, earlier, cheered me on with a candid, "Life goes back to normal tomorrow".
He's right.
But oh my at what cost?
How can it be normal for life to be normal without our boy?
How can it feel such a relief to take him back...?
He's right.
But oh my at what cost?
How can it be normal for life to be normal without our boy?
How can it feel such a relief to take him back...?
21.12.2009
What a day!
Tom and I left home at 6:15 this morning for Great Ormond Street to have a Glucagon test. That's the test to see if he's producing the right amount of growth hormone. The trip went unbelievably well, and Tom was in good spirits throughout.
Little update: the weigh-in. Tom now weighs 14.7kg and measures 95cm.
Thanks to Buzzy, the canula went in with much less fight from Tom, although there were still many tears. it's a little sad that I didn't find Buzzy before he became so phobic about needles, but the phobia reaction happened very suddenly. I am so proud of him because despite being afraid, he is willing to talk about it and try to rationalise it as much as he can. Really impressive for a six year old.
And boy do we love canulas - he was over the moon at how easy it was to take bloods for the rest of the day. The injection in the thigh hurt, though, and made him feel really sick. From then on there was a great deal of waiting, with bloods tested every 30 minutes. The bonus of having a feeding difficulty - you don't care that you can't eat after fasting for 18 hours!
I was really expecting him to happily tuck in to chips at 1:30 when the test ended, but the last half hour was tough. He got really sick, and his blood sugar went down to 3.8. The nurses were brilliant, but it was difficult to keep him awake, so trying to persuade him to drink some orange squash was something of a struggle!
Anyway, after a few vomits he had had a little to drink, so we let him sleep a bit. Which was when the pain doctor and nurse arrived - wonderful timing, as we were able to have a proper chat.
Having dealt with pain for a good part of my life, and been aware of Tom's pain for the greatest part of his, I am used to doubting listeners, particularly in the medical profession. And yet, here were a doctor and nurse team who understood straight away!!! From my description of Tom's behaviours, they tell me it is typical of muscular-skeletal pain, which fits, and that he also shows signs of some neuropathic pain. It would seem that muscular skeletal pain can trigger neuropathic pain in the long term. She also explained that in the pain department, they do not do investigations. They merely deal with pain management. So it's important to keep looking for the cause, but in the meantime, we're actually going to do something about the symptoms.
Plan!!!
First and foremost, physiotherapy. We're talking highly specialised physio to strengthen core muscles in order to allow those muscles to support the ones that are in pain. So the physios at GOS will liaise with Epsom to put in place some physio sessions and importantly a programme of physio that he can incorporate into daily life - which he will have to do throughout his life. Hydrotherapy sounds like an excellent idea, if only it can be put in place in a reasonable way. they also think that riding for the disabled would be ideal as it would work on his core strength and thigh muscles - that's one for me to pursue.
Second, medication. Paracetamol is fine, for years and years apparently. It's also good as a placebo, which I've been doing anyway. As the doc said, simply taking something can help the mind cope with pain, so paracetamol is a good one to use for that. But, there are two other meds to use to treat the neuropathic elements of the pain. Her preferred one is amatriptaline (sp?), which is a type of anti depressant... that is to say, it talk to nerves. That would be good because it's once a day and acts as a sedative - win win. But potentially his heart wouldn't like it, so she's checking with Dr Derrick. otherwise, the other med is gabapentin. this one also talks to nerves, but is used in epilepsy. In both cases, the doses are tiny compared to their other purpose. We will also have to plan to give him more meds if he's due to do a big bit of physio...
The third element of pain management is psychological, but we all felt that Tom actually manages his pain remarkably well, and is probably too young for any work of that kind as yet.
Oh we also talked about TENS machines for pain relief, but when Tom tried one later on, he hated it...
So... after three teeny tiny miniature cookies, Tom's blood sugar went up to 9.3 - that astonished the nurses, and I have questions for another day... That was too high for them, so we had to wait for a while longer until it went down - to 8.2.
It had snowed during the day.. I'm making the trip back into a short story.. No buses, no free taxis, so took underground - oh my lord what a nightmare during rush hour with a wheelchair... chips bought from Burger King, train caught just in time, delayed due to lack of staff, finally off, finally at Ashtead, finally home!!!
I am incredibly proud of my little boy. He was really well behaved all day, really tolerant, and generally lovely..
Tom and I left home at 6:15 this morning for Great Ormond Street to have a Glucagon test. That's the test to see if he's producing the right amount of growth hormone. The trip went unbelievably well, and Tom was in good spirits throughout.
Little update: the weigh-in. Tom now weighs 14.7kg and measures 95cm.
Thanks to Buzzy, the canula went in with much less fight from Tom, although there were still many tears. it's a little sad that I didn't find Buzzy before he became so phobic about needles, but the phobia reaction happened very suddenly. I am so proud of him because despite being afraid, he is willing to talk about it and try to rationalise it as much as he can. Really impressive for a six year old.
And boy do we love canulas - he was over the moon at how easy it was to take bloods for the rest of the day. The injection in the thigh hurt, though, and made him feel really sick. From then on there was a great deal of waiting, with bloods tested every 30 minutes. The bonus of having a feeding difficulty - you don't care that you can't eat after fasting for 18 hours!
I was really expecting him to happily tuck in to chips at 1:30 when the test ended, but the last half hour was tough. He got really sick, and his blood sugar went down to 3.8. The nurses were brilliant, but it was difficult to keep him awake, so trying to persuade him to drink some orange squash was something of a struggle!
Anyway, after a few vomits he had had a little to drink, so we let him sleep a bit. Which was when the pain doctor and nurse arrived - wonderful timing, as we were able to have a proper chat.
Having dealt with pain for a good part of my life, and been aware of Tom's pain for the greatest part of his, I am used to doubting listeners, particularly in the medical profession. And yet, here were a doctor and nurse team who understood straight away!!! From my description of Tom's behaviours, they tell me it is typical of muscular-skeletal pain, which fits, and that he also shows signs of some neuropathic pain. It would seem that muscular skeletal pain can trigger neuropathic pain in the long term. She also explained that in the pain department, they do not do investigations. They merely deal with pain management. So it's important to keep looking for the cause, but in the meantime, we're actually going to do something about the symptoms.
Plan!!!
First and foremost, physiotherapy. We're talking highly specialised physio to strengthen core muscles in order to allow those muscles to support the ones that are in pain. So the physios at GOS will liaise with Epsom to put in place some physio sessions and importantly a programme of physio that he can incorporate into daily life - which he will have to do throughout his life. Hydrotherapy sounds like an excellent idea, if only it can be put in place in a reasonable way. they also think that riding for the disabled would be ideal as it would work on his core strength and thigh muscles - that's one for me to pursue.
Second, medication. Paracetamol is fine, for years and years apparently. It's also good as a placebo, which I've been doing anyway. As the doc said, simply taking something can help the mind cope with pain, so paracetamol is a good one to use for that. But, there are two other meds to use to treat the neuropathic elements of the pain. Her preferred one is amatriptaline (sp?), which is a type of anti depressant... that is to say, it talk to nerves. That would be good because it's once a day and acts as a sedative - win win. But potentially his heart wouldn't like it, so she's checking with Dr Derrick. otherwise, the other med is gabapentin. this one also talks to nerves, but is used in epilepsy. In both cases, the doses are tiny compared to their other purpose. We will also have to plan to give him more meds if he's due to do a big bit of physio...
The third element of pain management is psychological, but we all felt that Tom actually manages his pain remarkably well, and is probably too young for any work of that kind as yet.
Oh we also talked about TENS machines for pain relief, but when Tom tried one later on, he hated it...
So... after three teeny tiny miniature cookies, Tom's blood sugar went up to 9.3 - that astonished the nurses, and I have questions for another day... That was too high for them, so we had to wait for a while longer until it went down - to 8.2.
It had snowed during the day.. I'm making the trip back into a short story.. No buses, no free taxis, so took underground - oh my lord what a nightmare during rush hour with a wheelchair... chips bought from Burger King, train caught just in time, delayed due to lack of staff, finally off, finally at Ashtead, finally home!!!
I am incredibly proud of my little boy. He was really well behaved all day, really tolerant, and generally lovely..
15.12.2009
Kesia's birthday, and I feel fairly in control today! It's been a hectic week, with school shows, concerts, carol service, and Zack's concert to come on Thursday - lots of driving that day!
So this is a little update -check the calendar page for next term's important dates, and a new link to Cozi that I'm goign to try and start using again as a diary - if you need the password, let me know!
I'm also slowly writing again - there are lots of topics buzzing around my head that I would like to explore, but that need time and emotional energy. Frustratingly, that also requires physical energy, and my pain levels are seeping that away. I'll be seeing my fibro specialist again soon. Anyway, I am slowly adding to my musings, but will be publishing in bits I think as I don't always have time to complete a thought. Some might suggest doing the writing on "Word" first, but there is an immediacy to blogging that I seem to need.
I'm glad to report that although we're not out of the woods - and may never be - there is at least a glimmer of hope in ourlives once more. It's good to feel after months of sheer hopelessness.
I've not mentioned my beautiful little girl!! Eight years old today! And as beautiful on the inside as on the outside. She is such a caring and compassionate person. She's doing really well in school, making friends, and enjoying singing in the choir. She's also just started to learn the violin, and glows when she gets it out of its case! I love her independence of spirit and her ability to care for others. My princess: Kesia Hannah.
So this is a little update -check the calendar page for next term's important dates, and a new link to Cozi that I'm goign to try and start using again as a diary - if you need the password, let me know!
I'm also slowly writing again - there are lots of topics buzzing around my head that I would like to explore, but that need time and emotional energy. Frustratingly, that also requires physical energy, and my pain levels are seeping that away. I'll be seeing my fibro specialist again soon. Anyway, I am slowly adding to my musings, but will be publishing in bits I think as I don't always have time to complete a thought. Some might suggest doing the writing on "Word" first, but there is an immediacy to blogging that I seem to need.
I'm glad to report that although we're not out of the woods - and may never be - there is at least a glimmer of hope in ourlives once more. It's good to feel after months of sheer hopelessness.
I've not mentioned my beautiful little girl!! Eight years old today! And as beautiful on the inside as on the outside. She is such a caring and compassionate person. She's doing really well in school, making friends, and enjoying singing in the choir. She's also just started to learn the violin, and glows when she gets it out of its case! I love her independence of spirit and her ability to care for others. My princess: Kesia Hannah.
23.10.2009
20 days already!!! Zack's first two weeks at school went really well. By which I mean that he was himself, in the good and the bad (not quite the ugly yet!). He's back home for a two week half term which is full of ups and downs, but today was lovely. We went biking and skating with jo and zo, and it was a wonderful day. Zack learned to skateboard, so now has a board of his own. Tom and Kesi are plodding along more or less well, and I will hopefully have a little bit of time and energy to post more here. Look in the calendar pages for any important dates to come!
3.10.2009
I can't believe how much has happened in the last month. Zack started school yesterday! The trip there went really well, and I am unbelievable proud of what he has achieved in the last 24 hours. The staff are incredibly caring, and have called us about 5 times since yesterday. He showed a glimpse of his problems today, but seems to be ok. I haven't heard him talk like this evening in about two years! He sounds happy, if anxious. Mostly, he sounds like a little boy!
It's at once very hard and very easy at home.... Nick played on the Wii with Kesi, teaching her how to play different games. I tidied the sitting room, and made a fire - first time ever! it seems amazing that I had the head space to do that. it's been a quiet day, although Kes struggled at gym. We're fragile, but Zack being away makes it possible to have a good day despite that.
There's guilt thrown in there too. Well, not guilt exactly, just the feeling that family life shouldn't need the family to be split to be happy.
Anyway, things are going as well as they could possibly go - so far!
It's at once very hard and very easy at home.... Nick played on the Wii with Kesi, teaching her how to play different games. I tidied the sitting room, and made a fire - first time ever! it seems amazing that I had the head space to do that. it's been a quiet day, although Kes struggled at gym. We're fragile, but Zack being away makes it possible to have a good day despite that.
There's guilt thrown in there too. Well, not guilt exactly, just the feeling that family life shouldn't need the family to be split to be happy.
Anyway, things are going as well as they could possibly go - so far!
7.09.2009
My head is buzzing!! There is so much happening, and so much being thought of, that I don't have enough peace in my head to commit it all to my musings. Suffice it to say that in the world of practicalities, Zack will be visiting Southlands School on Tuesday, 15th September, accompanied by mum and dad. I have had a pivotal day - who knew that looking good could make such a difference! And Kesi and Tom have started school well, although Tom is already extremely tired. He has a doctor's appointment on the 29th of this month...
As for the rest!!!
I seem to have a need, and hopefully an ability to lobby for change. Unsuprisingly, my area of interest lies in the provision, or lack thereof services for disabled children and their families. Some of you will have read my letter to the authorities concerning Mark's disappearance. Since this has happened, the service seems to be falling apart. I am getting some responses, and I have the impression that there is a lot of buzzing going on as a result. In continuing my research and education, I have contacted the local authorities in a far broader manner, and will be meeting with a certain Paul Foster. He is the strategic lead for Special Needs in Surrey... I foresee a very interesting meeting! In the meantime I am doing my homework!
Day to day sees me trying to help families I know as best I can. There is little I can do at home now (the housework is largely under control and frankly very dull), and I am determined that the last few months shall reap some positive. I am hoping to help other home educating families gain statements for those children that need them. I am also determined that surrey live up to its motto,
Our vision is that:"Every child and young person will be safe, healthy, creative, and have the personal confidence, skills and opportunities to contribute and achieve more than they thought possible."
Right now, I'd settle for every child being safe.
As for the rest!!!
I seem to have a need, and hopefully an ability to lobby for change. Unsuprisingly, my area of interest lies in the provision, or lack thereof services for disabled children and their families. Some of you will have read my letter to the authorities concerning Mark's disappearance. Since this has happened, the service seems to be falling apart. I am getting some responses, and I have the impression that there is a lot of buzzing going on as a result. In continuing my research and education, I have contacted the local authorities in a far broader manner, and will be meeting with a certain Paul Foster. He is the strategic lead for Special Needs in Surrey... I foresee a very interesting meeting! In the meantime I am doing my homework!
Day to day sees me trying to help families I know as best I can. There is little I can do at home now (the housework is largely under control and frankly very dull), and I am determined that the last few months shall reap some positive. I am hoping to help other home educating families gain statements for those children that need them. I am also determined that surrey live up to its motto,
Our vision is that:"Every child and young person will be safe, healthy, creative, and have the personal confidence, skills and opportunities to contribute and achieve more than they thought possible."
Right now, I'd settle for every child being safe.
26.08.2009
Not too bad at all. My darling bro and his wife are here, and working SOOO hard for me. Big thanks. My little boy... not too good, not too bad - hanging in there. Tonight, his friend Maisie is sleeping here - very exciting!
I have spent a lot of time recently trying to help a friend in a similar situation to mine who is in the process of breaking. Unfortunately, she does not have a mark... I am not mark, but I learnt some lessons, and am determined to be a thorn in the side of Surrey children's services..... see my latest musing.
It feels good to help others, and there is an important and necessary message to get across.
I have spent a lot of time recently trying to help a friend in a similar situation to mine who is in the process of breaking. Unfortunately, she does not have a mark... I am not mark, but I learnt some lessons, and am determined to be a thorn in the side of Surrey children's services..... see my latest musing.
It feels good to help others, and there is an important and necessary message to get across.
13.08.2009
A musing will have to be upcoming, as soon as I have my new laptop with a full size keyboard. On the one hand, Zack's assessment went very well - no answers yet, but I'm happy. On the other hand, a good friend was dismissed - utterly unfairly, and I am shaking with rage...
12.08.2009
Southlands school are coming to assess Zack tomorrow morning!!!!!! And although I feel for my little Tom who had a really bad night last night, at long last, the doctors aren't saying I'm making it up!
1.08.2009
All good!! Sorry to have scared people! The warning's there honeys, and I'm still smiling! Nanny and Grampy are here this weekend, and we're off for lunch. Just Nick and me. Poor man is grieving - 2 laptops died last week, which is a bit much to bear. I have suggested burying them in the garden and having a ceremony.....
So we're going to look at computers, and have lunch together! My poor love also read my musings last night, and it would appear that I have left a few people... aghast? speechless?
Think of it as therapy!! I'm still home, upright, and capable of speech and smiles!! All kids are still at home (just!), and hubby and I still very much in love. All else, well!!
Take care all, and I'm going to enjoy a few hours alone with my man! xxx
So we're going to look at computers, and have lunch together! My poor love also read my musings last night, and it would appear that I have left a few people... aghast? speechless?
Think of it as therapy!! I'm still home, upright, and capable of speech and smiles!! All kids are still at home (just!), and hubby and I still very much in love. All else, well!!
Take care all, and I'm going to enjoy a few hours alone with my man! xxx
29.07.2009
In the spirit of honesty, some days are just not good...
Not so good. I have the same fight with Zack every day, and right now it's hard to breathe. I have managed. I got him washed and he's now calm. I managed to avoid falling down the stairs when pushed. But I can't make sense of this monster who takes over and threatens everything. I can't not wash him - he's dirty and smelly. And I don't know what upsets or scares him about washing. It's more than sheer stubborness, because he just changes as soon as he knows it's coming, and then when it's done, he's himself again. In the meantime it's awful. Pure aggression, poisonous words and I don't feel safe.
I can't explain how truly dreadful it is to feel threatened by my little boy.
Ok.. vented, let out some tears while they're eating. Now I just need to make it until bedtime.
I can't explain how truly dreadful it is to feel threatened by my little boy.
Ok.. vented, let out some tears while they're eating. Now I just need to make it until bedtime.
29.07.2009
Who sent a card???
So... I sent my card to Daisy. I managed to copy her photo into a lovely Disney card on Moonpig - I hope she likes it. After 10 months in hospital she's finallly home! Noone contacted me, so I don't know if anyone has read my site (boo hoo), or taken up my challenge. If you do, click on the contact me link up above, and send me a message!!!
Also, the photo up here. It is in Chevillard, France, taken from my lovely Mummy and Daddy's house. The best sunsets ever!
Also, the photo up here. It is in Chevillard, France, taken from my lovely Mummy and Daddy's house. The best sunsets ever!
28.07.2009
My Challenge to you today
OH... AND LET ME KNOW WHEN YOU DID IT!!
Click on the banner above, which will take you to PostPals. Once there, choose a child, any child (although those on the TLC list need more post right now than some of the others). Remember siblings, they need post too!! Make or buy a card, or go to www.moonpig.com and send that child some love. The message need not be long - simply say hello and where you're from that's often enough.
Then send it!!!
Click on the banner above, which will take you to PostPals. Once there, choose a child, any child (although those on the TLC list need more post right now than some of the others). Remember siblings, they need post too!! Make or buy a card, or go to www.moonpig.com and send that child some love. The message need not be long - simply say hello and where you're from that's often enough.
Then send it!!!
26.07.2009
News of the weekend
Well, I have no bad news, which is rather nice. Yesterday was tough, but made easier because Tom was at Funtastic. He had a great day making cakes and playing. Kesi did very well in gym, but didn't feel so good in the afternoon. Zack... was Zack. We managed to get out to Espom which is the first time in weeks and weeks that we have managed that, but it was quite difficult keeping him calm.
This morning was quite lovely. Although it took Zack a long time to get dressed, we were able to get into our new bus and drive to Chessington World of Adventures which is just 10 minutes down the road. Having bought an annual pass, we didn't feel obliged to stay all day, and in fact only planned on two or three hours. It went really well. Nick looked after Zack, Tom drove himself around very independently, and I watched Kesia like a hawk - she has absolutely no sense of direction!! We even managed lunch there.
This afternoon has been difficult. I have kept out of Zack's way because he has been very angry with me. Kesia had a temper tantrum to match her brother's, and we ended up making a manners book. The hope is that I will record good manners, and reward them if particularly brilliant. I will also record bad manners, with consequences, to help us learn to improve!
Anyway, we've made it to the end of the day. I have no energy for bathtime (yesterday was epic once more with Zack), so they're off to bed grubby! I'll hopefully get the sheets changed tomorrow. All three are off to Challengers tomorrow - yippee!!!
This morning was quite lovely. Although it took Zack a long time to get dressed, we were able to get into our new bus and drive to Chessington World of Adventures which is just 10 minutes down the road. Having bought an annual pass, we didn't feel obliged to stay all day, and in fact only planned on two or three hours. It went really well. Nick looked after Zack, Tom drove himself around very independently, and I watched Kesia like a hawk - she has absolutely no sense of direction!! We even managed lunch there.
This afternoon has been difficult. I have kept out of Zack's way because he has been very angry with me. Kesia had a temper tantrum to match her brother's, and we ended up making a manners book. The hope is that I will record good manners, and reward them if particularly brilliant. I will also record bad manners, with consequences, to help us learn to improve!
Anyway, we've made it to the end of the day. I have no energy for bathtime (yesterday was epic once more with Zack), so they're off to bed grubby! I'll hopefully get the sheets changed tomorrow. All three are off to Challengers tomorrow - yippee!!!
24.07.2009
Happiness...
A good day! Tom zoomed around Horton Park Farm in his power chair, chased by Kesi and her friend. Then Kesi stayed with said friend for the rest of the day, and Tom and I had a good rest before picking up Zack. Who himself had had a good day, and even helped care for a little girl in a wheelchair! We came home (no bath!!), and they're all nicely in bed. Oh my it feels good!!
23.07.2009
The mysteries of the autistic brain...
6pm arrive at Cherry Trees to find an enraged and hungry Zack. Why did I not warn him I would be late, he shouts. He refused to eat and is incensed that he was not forewarned...
6:02pm remind Zack of the van's arrival. Immediately, his face lights up with happiness and excitement - let's go, he calls merrily.
6:03pm more shouts and upsets as I try to explain that he cannot close the door from the inside of the van...
The drive home is reasonably uneventful...
6:30pm thank goodness, Nick is home. He takes Kesia and Tom up for their shower while I sit with Zack, keeping him company as he eats. A lovely time was had by all, and much appreciated as these rare moments always are.
6:40pm Zack chooses me to help him with his shower - miracle, he has not screamed yet!
6:42pm Nick is playing with the other two, so I allow Zack to join in - another lovely time!!!
7pm time for shower... Zack defiantly refuses. After three calm requests, I add a consequence (to lose his watch for 24 hours).
7:10pm Zack has now lost his watch for the week, a lego model and £1 from his money box.... we're obviously onto a loser tonight!
7:12pm with Nick behind me, I go to move him (he really smells!) I get kicked in the stomach, Nick intervenes rather angrily and Zack starts yelling blue murder because he got a little slap on the thigh...
7:13pm it takes two of us to move him into the bathroom. I get him undressed and maneuvre him into the tub, shower going
7:14pm Zack turns off the shower... severa times
7:15pm Nick holding his hands, I get in the tub fully dressed to get the boy washed...
7:18pm all clean, the boy now refuses to get out and has to be carried out (by Nick)
7:20pm Nick is seriously annoyed! I go into Zack's room to attempt pacification.
7:21pm I happen to mention that my great-grandfather is 107 years old and Zack smiles in disbelief.
7:30pm We have had a lovely few minutes, shower troubles totally forgotten, as if the incident never happened.....
How, oh how does he flick!!!???
Anyway, here's hoping for a peaceful evening!
6:02pm remind Zack of the van's arrival. Immediately, his face lights up with happiness and excitement - let's go, he calls merrily.
6:03pm more shouts and upsets as I try to explain that he cannot close the door from the inside of the van...
The drive home is reasonably uneventful...
6:30pm thank goodness, Nick is home. He takes Kesia and Tom up for their shower while I sit with Zack, keeping him company as he eats. A lovely time was had by all, and much appreciated as these rare moments always are.
6:40pm Zack chooses me to help him with his shower - miracle, he has not screamed yet!
6:42pm Nick is playing with the other two, so I allow Zack to join in - another lovely time!!!
7pm time for shower... Zack defiantly refuses. After three calm requests, I add a consequence (to lose his watch for 24 hours).
7:10pm Zack has now lost his watch for the week, a lego model and £1 from his money box.... we're obviously onto a loser tonight!
7:12pm with Nick behind me, I go to move him (he really smells!) I get kicked in the stomach, Nick intervenes rather angrily and Zack starts yelling blue murder because he got a little slap on the thigh...
7:13pm it takes two of us to move him into the bathroom. I get him undressed and maneuvre him into the tub, shower going
7:14pm Zack turns off the shower... severa times
7:15pm Nick holding his hands, I get in the tub fully dressed to get the boy washed...
7:18pm all clean, the boy now refuses to get out and has to be carried out (by Nick)
7:20pm Nick is seriously annoyed! I go into Zack's room to attempt pacification.
7:21pm I happen to mention that my great-grandfather is 107 years old and Zack smiles in disbelief.
7:30pm We have had a lovely few minutes, shower troubles totally forgotten, as if the incident never happened.....
How, oh how does he flick!!!???
Anyway, here's hoping for a peaceful evening!
23.07.2009
I have my van - big scary moment, but very exciting! My hall looks big without the wheelchairs!!! Happy!
22.07.2009
First momentous post - to let my dearest and nearest know what we will be up to this summer!
Wow! Having discovered Facebook, and by and large rather liking it, I came upon a flaw!!! I could not put in what I wanted!!
So, my own little corner of webspace seems inevitable, and maybe rather conducive to meanderings of the mind as well as practical communication such as this first event.
So below this, you will see a lovely spreadsheet detailing what my darling children will be doing this summer. First on the list of things to add is Tom's birthday party!! The first tentative date is the 4th of August...
So, my own little corner of webspace seems inevitable, and maybe rather conducive to meanderings of the mind as well as practical communication such as this first event.
So below this, you will see a lovely spreadsheet detailing what my darling children will be doing this summer. First on the list of things to add is Tom's birthday party!! The first tentative date is the 4th of August...