Well January has almost gone already, and I'm getting used to being unemployed. Having said that it still feels like a holiday so far although I am missing my payday.
We all had a fantastic Christmas and my boy coped very well. He loved the snow but was unable to go out and enjoy it as he was full of cold. However, he had great fun watching the snow fall. I ended up being ill with a cold and then an upset tummy so I was out of action for the first 3 weeks of January, my boy hated it. He was very gentle and loving though and I had lots of kisses and cuddles and 'I love you' s. He did keep asking when I would be well again as he didn't like me ill. It did give me an enforced rest, no bad thing really, I rhink my body was trying to tell me I had been doing too much.
Luckily I was better in time to go away for the weekend, with my sister in law, to Cardiff. We were so lucky with the weather. As we crossed the Severn Bridge into Wales the sun came out and stayed with us for the whole weekend. We spent the first day shopping, had a very relaxed lunch in Prezzo and then went to see John Barrowman in Robin Hood in the evening. He was fantastic and it was so funny. I love a good pantomime. The next day after a cooked breakfast we headed off to the Cardiff Bay area. It was lovely with the sun shining over the sea. We had a wander around the sea front, had a look at the water fountain and Millenium Centre, then headed over to the Doctor Who exhibition. Fantastic fun!
Then it was time for a quick coffee in Starbucks before we headed home.
I was so pleased when I got home as my boy had coped with me being away really well. It was the first time I've managed to be away overnight for about 4 years. He hates it. Last time I was away my husband was exhausted as he wouldn't go to sleep and he had to wait until he dropped of mid sentence at about 3 in the morning. This time he went to sleep at 1am having turned off the light himself and just settled down. I was so proud. His meds are definately making a difference.
My boy no longer has to be on the laptop all day and shares it with the rest of us now. No more Disney Channel all day either, we can watch whatever we want. things are so much better. He goes out now as well. Not everyday, but a few times each week. It's such an improvement.
As for School, wel he managed to get into the classroom last week. It is the first time in 2yrs. Alright it was after school hours and the room was empty, but he did it! It's slow progress but for the moment it's going in the right direction.
Thursday, 28 January 2010
Sunday, 13 December 2009
Getting Back to Normal
Slowly but surely things are getting back to normal now. The meds are clearly working and he isn't so bothered by sensory input. I can now wash his bedding without fear of a bad night as the bedding 'doesn't feel right' or is 'too scratchy'. He is managing to visit the library every week as well. Sadly his teaching assistant is still poorly and unable to meet him so we have been seeing the head of the school's support dept. She has started to send him emails about what is happening in school and photos of the school itself to help with transition work. Hopefully at the next multi professional meeting we will know more about how his TA is and whether she will be able to return to work. If not how long til a replacement is found so that my boy can start building a proper relationship with them. All this is holding everything up at the moment but it is giving him chance to get used to going out again on a regular basis.
Christmas is nearly here and all preparations have been completed. My boy doesn't seem overly bothered this year although he is loving the chocolate advent calendar. There isn't very much on his wish list, but that's no bad thing as I have now given up work, due to my parents being unable to help out anymore. Money is tight, but I'm sure we'll manage. (Fingers crossed).
Have a good Christmas everyone. Love, happiness and peace to all. xxx
Christmas is nearly here and all preparations have been completed. My boy doesn't seem overly bothered this year although he is loving the chocolate advent calendar. There isn't very much on his wish list, but that's no bad thing as I have now given up work, due to my parents being unable to help out anymore. Money is tight, but I'm sure we'll manage. (Fingers crossed).
Have a good Christmas everyone. Love, happiness and peace to all. xxx
Wednesday, 11 November 2009
A Rollercoaster Ride
Well the last few weeks have been a bit of a rollercoaster ride since the passing of our beloved cat, Harley. It was such a devastating loss for our boy that he just fell apart under the weight of his grief.
He was staying awake for 24hrs, then sleeping for 12hrs. He wouldn't leave his room. Refused to get dressed, do his lessons, barely ate. He was so angry and just didn't know how to deal with it. Luckily he didn't become violent, just depressed, which wasn't good but better than hitting us or harming himself.
It has taken a good 6 weeks for him to get through this. We tried everything. Looking at old photos of the cat and talking about the daft things she used to do. These seemed to help. But by far and away the best thing was the sleeping cat memorial stone we ordered for her grave. It is beautiful. Black with gold flecks. My boy decided it was far to good for the garden so it is now on the hearth in front of the fireplace and I have to admit it looks just perfect there. As if it should always have been in that exact spot. We have now picked out another stone for the garden as we don't want her grave to be bare. Since the stone cat arrived he's been much calmer and started to get back to normal. The addition of medication has helped.
'Due to his behaviour' (the exact wording from head of home tuition dept) his home tutors have been withdrawn because he wasn't engaging in the lessons. She didn't seem to understand that he is a child trying to grieve that doesn't know how to interpret his emotions, or how great a loss this was for him. To her it was only a cat, to my boy our cat was his closest friend, who only ever gave comfort and never judged. She was there at the end of his bed waiting to greet him every morning when he awoke, sat with him being stroked and helping him to remain calm with her relaxing purr during lessons, and snuggled up to him as he drifted off to sleep every night. However this head of dept could only see a naughty child who refused lessons. The tutors were withdrawn just as he was beginning to make an effort to take part again. He'd even nearly managed the full hour of his lesson but that wasn't good enough. When I told him what had happened he was very upset and quite angry as he'd tried so hard to get back into his learning. It was totally demoralising. He just couldn't understand it. So yet again he is without an education.
There was a meeting at his new school this week and I am pleased to say that his new SENCo was fantastic, as was his Psychologist. They supported everything that I said concerning his grief and the need for him to work his way through it. His psychologist even added that due to his autism he is a child with severe problems relating to the processing of emotions along with his social communication difficulties that it is totally understandable that he struggled with how to cope with his grief. They also argued that to 'slap him in the face' by removing his tutor just as he was starting to recover was wrong in the extreme. However, even this hasn't led to his lessons resuming. They want him to start integrating back into the school environment first with his lessons taking place in the local public library which is located within the school premises once he has got used to going there and spending time with his TA. (Fortunately he used to visit the library quite often and has just started doing so again.) Considering the home tuition departments title is 'Integration Support' you would expect them to do this as it is within their remit, but sadly no, they have firmly off loaded my boy onto the school. Playing pass the buck and forgetting the child in the middle of all this.
All is not lost as the school SENCo is so helpful and accommodating. We have put a plan in place and we will action it ourselves, which will mean that the school will have control over this and we can go at my boys pace. I'm fully expecting the anxiety levels to escalate but we will have to see.
The medication he has recently started taking has certainly helped him as he is going out for a short while each day. He even managed a visit to my parents' house, something that hasn't happened in over a year. We are trying to keep up the momentum with his trips out and a having started off with things that he used to like doing we will start to add in new outings each week in an effort to build his confidence. However we will also make sure that he has quiet time to himself that will allow him to process everything and help him to adjust to the new routines within the week. Let's hope this is the start of a more confident child.
He was staying awake for 24hrs, then sleeping for 12hrs. He wouldn't leave his room. Refused to get dressed, do his lessons, barely ate. He was so angry and just didn't know how to deal with it. Luckily he didn't become violent, just depressed, which wasn't good but better than hitting us or harming himself.
It has taken a good 6 weeks for him to get through this. We tried everything. Looking at old photos of the cat and talking about the daft things she used to do. These seemed to help. But by far and away the best thing was the sleeping cat memorial stone we ordered for her grave. It is beautiful. Black with gold flecks. My boy decided it was far to good for the garden so it is now on the hearth in front of the fireplace and I have to admit it looks just perfect there. As if it should always have been in that exact spot. We have now picked out another stone for the garden as we don't want her grave to be bare. Since the stone cat arrived he's been much calmer and started to get back to normal. The addition of medication has helped.
'Due to his behaviour' (the exact wording from head of home tuition dept) his home tutors have been withdrawn because he wasn't engaging in the lessons. She didn't seem to understand that he is a child trying to grieve that doesn't know how to interpret his emotions, or how great a loss this was for him. To her it was only a cat, to my boy our cat was his closest friend, who only ever gave comfort and never judged. She was there at the end of his bed waiting to greet him every morning when he awoke, sat with him being stroked and helping him to remain calm with her relaxing purr during lessons, and snuggled up to him as he drifted off to sleep every night. However this head of dept could only see a naughty child who refused lessons. The tutors were withdrawn just as he was beginning to make an effort to take part again. He'd even nearly managed the full hour of his lesson but that wasn't good enough. When I told him what had happened he was very upset and quite angry as he'd tried so hard to get back into his learning. It was totally demoralising. He just couldn't understand it. So yet again he is without an education.
There was a meeting at his new school this week and I am pleased to say that his new SENCo was fantastic, as was his Psychologist. They supported everything that I said concerning his grief and the need for him to work his way through it. His psychologist even added that due to his autism he is a child with severe problems relating to the processing of emotions along with his social communication difficulties that it is totally understandable that he struggled with how to cope with his grief. They also argued that to 'slap him in the face' by removing his tutor just as he was starting to recover was wrong in the extreme. However, even this hasn't led to his lessons resuming. They want him to start integrating back into the school environment first with his lessons taking place in the local public library which is located within the school premises once he has got used to going there and spending time with his TA. (Fortunately he used to visit the library quite often and has just started doing so again.) Considering the home tuition departments title is 'Integration Support' you would expect them to do this as it is within their remit, but sadly no, they have firmly off loaded my boy onto the school. Playing pass the buck and forgetting the child in the middle of all this.
All is not lost as the school SENCo is so helpful and accommodating. We have put a plan in place and we will action it ourselves, which will mean that the school will have control over this and we can go at my boys pace. I'm fully expecting the anxiety levels to escalate but we will have to see.
The medication he has recently started taking has certainly helped him as he is going out for a short while each day. He even managed a visit to my parents' house, something that hasn't happened in over a year. We are trying to keep up the momentum with his trips out and a having started off with things that he used to like doing we will start to add in new outings each week in an effort to build his confidence. However we will also make sure that he has quiet time to himself that will allow him to process everything and help him to adjust to the new routines within the week. Let's hope this is the start of a more confident child.
Sunday, 20 September 2009
Goodbye Harley
A very sad week.
Our beautiful cat Harley passed away and we all miss her very much. She had lived until the grand old age of 17. Her kidneys gave out in the end and it was felt best that she was put too sleep. I was with her and held her paw as she slowly and gently passed away. The house is just not the same since she died.
It has affected my boy rather badly as he was so very attached to her. They adored each other. They had such a close bond. He has never known a time without her. I knew he wouldn't take it well and was not surprised when the sleep pattern went out the window and he refused his lessons. He is so full of anger at the moment. But as we all know, this is part of the grieving process and he has to be allowed to grieve in his own way. I think he will need a while to get over this.
The only good thing is that, as a set back in his education, at least it is at the beginning of his school year. If this had happened after he had made a really huge amount of progress I think it would have been harder to regain the lost ground. We can hopefully now put this behind us and start moving forward again.
Rest In Peace Harley 1992 - 2009
Our beautiful cat Harley passed away and we all miss her very much. She had lived until the grand old age of 17. Her kidneys gave out in the end and it was felt best that she was put too sleep. I was with her and held her paw as she slowly and gently passed away. The house is just not the same since she died.
It has affected my boy rather badly as he was so very attached to her. They adored each other. They had such a close bond. He has never known a time without her. I knew he wouldn't take it well and was not surprised when the sleep pattern went out the window and he refused his lessons. He is so full of anger at the moment. But as we all know, this is part of the grieving process and he has to be allowed to grieve in his own way. I think he will need a while to get over this.
The only good thing is that, as a set back in his education, at least it is at the beginning of his school year. If this had happened after he had made a really huge amount of progress I think it would have been harder to regain the lost ground. We can hopefully now put this behind us and start moving forward again.
Rest In Peace Harley 1992 - 2009
Monday, 7 September 2009
Sleep....... Please and a New Term
The sleep issue went from bad to worse until my boy was awake all night and not getting up til 3pm in the afternoon. I was feeling permanently exhausted. Desperate times called for desperate measures, especially as the new term was looming. I couldn't get him to sleep any earlier as that is one of his problems, his body doesn't make enough melatonin to get his ready for sleep. Trying to wake him up earlier was a no go as well, it just doesn't work. The only option was left was to keep him awake for longer and push his sleep round that way.
I kept him awake til 10 am the first day with sleep until 6pm.
The next day he was awake til 1.30pm with sleep until 8.30pm.
Then it was 4pm with sleep til 9.30pm.
Then for a finale he stayed awake til 7pm and slept right round til 7.30 am as he was so exhausted.
As for me, well I now know what jet lag feels like!
New term started today and I was a bit worried as to how it would go. I needn't have stressed over it as he settled into his lesson like a dream. I think he's missed the routine of it, although he wouldn't admit it if asked. I just hope that things stay this way. Also the new routine of getting up early and actually having three meals a day has cut down on his snacking on rubbish. He was a pleasure to be around today, he helped to make cakes and even carried my shopping in from the car. I am so proud of all he has achieved today and have told him so. He really enjoyed the praise and I hope this helps to raise his confidence.
Things seem to be on the up at last.
I kept him awake til 10 am the first day with sleep until 6pm.
The next day he was awake til 1.30pm with sleep until 8.30pm.
Then it was 4pm with sleep til 9.30pm.
Then for a finale he stayed awake til 7pm and slept right round til 7.30 am as he was so exhausted.
As for me, well I now know what jet lag feels like!
New term started today and I was a bit worried as to how it would go. I needn't have stressed over it as he settled into his lesson like a dream. I think he's missed the routine of it, although he wouldn't admit it if asked. I just hope that things stay this way. Also the new routine of getting up early and actually having three meals a day has cut down on his snacking on rubbish. He was a pleasure to be around today, he helped to make cakes and even carried my shopping in from the car. I am so proud of all he has achieved today and have told him so. He really enjoyed the praise and I hope this helps to raise his confidence.
Things seem to be on the up at last.
Sunday, 16 August 2009
Back to the Old Routine
Well it's all settling back into the old routine although my boy is still having trouble sleeping. I have seen the early hours every night this week. When I say early hours, I mean 4-5 am. We have even had a 6am. No wonder I feel tired. It's not helped when having been told not to ring early my mother in law thinks 9am is ok and seemed surprised when I wasn't wide awake! Oh well never mind. Mr Cobweb has been working away all week so peace and tranquility has reigned and so has a tidy house. It's much easier when he's away, because if my boy can't sleep I can just go to my room and doze until he's ready to sleep and then pop in and settle him down. But whem Mr C is home I have to stay in with my boy as otherwise it would wake him with me keep wandering in and out, especially as he's a light sleeper and has to be up for work by 5am. Yes, you did read that right, I go to bed as Mr C gets up for work!!
The cat decided to honour me with a present and looked rather pleased with herself a she deposited a bird in front of me. I thanked her profusely thinking it was dead and that I would be able to dispose of it when she wasn't looking, but the bloody thing moved. It was still very much alive! I grabbed it quick before it flew all over the house and then let it loose out the front door. Oh dear, my cat was not impressed and gave me a filthy look before slinking off out the way. You have to be impressed though, my dear cat is 17yrs old, not bad for a geriatric!
When Mr C decided to have a weekend off this week I made the most of it and went out for the day. It was lovely to be alone and out in the sunshine having been pretty much housebound all week. The boy not wanting to go out, apart from a trip to Pizza Hut. I had a really good wander round the town, bliss. It doesn't take much to please me. What did upset me was when I returned home to find that Mr C had done nothing, rubbish was still in the kitchen, washing up unwashed in the sink, the kitchen looking like a tip as he'd cooked himself lunch. Living room a tip with whatever had been used was just left there and worst of all the cat had pee'd on the rug and only a tiny peice of kitchen towel had been put on it to mop it up. Believe me that was piece would'nt be enough to mop up a gnat pee. I couldn't believe that in the space of just a few hours Mr C had pretty much wrecked the whole ground floor and then couldn't even see what he'd done!
Sunday I was given a long lie in and breakfast in bed. I think someone felt guilty. The weather was fantastic again so I decided to mow the lawn before we lost the cat in it. Yes, it was getting that long. Whilst getting that done Mr C cooked dinner! More guilt I think. Still I'm not complaining.
The cat decided to honour me with a present and looked rather pleased with herself a she deposited a bird in front of me. I thanked her profusely thinking it was dead and that I would be able to dispose of it when she wasn't looking, but the bloody thing moved. It was still very much alive! I grabbed it quick before it flew all over the house and then let it loose out the front door. Oh dear, my cat was not impressed and gave me a filthy look before slinking off out the way. You have to be impressed though, my dear cat is 17yrs old, not bad for a geriatric!
When Mr C decided to have a weekend off this week I made the most of it and went out for the day. It was lovely to be alone and out in the sunshine having been pretty much housebound all week. The boy not wanting to go out, apart from a trip to Pizza Hut. I had a really good wander round the town, bliss. It doesn't take much to please me. What did upset me was when I returned home to find that Mr C had done nothing, rubbish was still in the kitchen, washing up unwashed in the sink, the kitchen looking like a tip as he'd cooked himself lunch. Living room a tip with whatever had been used was just left there and worst of all the cat had pee'd on the rug and only a tiny peice of kitchen towel had been put on it to mop it up. Believe me that was piece would'nt be enough to mop up a gnat pee. I couldn't believe that in the space of just a few hours Mr C had pretty much wrecked the whole ground floor and then couldn't even see what he'd done!
Sunday I was given a long lie in and breakfast in bed. I think someone felt guilty. The weather was fantastic again so I decided to mow the lawn before we lost the cat in it. Yes, it was getting that long. Whilst getting that done Mr C cooked dinner! More guilt I think. Still I'm not complaining.
Sunday, 9 August 2009
A Glass of Wine and a Hot Tub Under the Stars
Bliss is a relaxing evening in the hot tub with a glass of wine looking up at the stars. As we were in the countryside the night sky was far more dramatic with a higher number of stars to be seen. A clear night with a bright moon and thousands of stars was a stunning sight to behold. However I have to admit that, most of the time the peace was disturbed by my beautiful boy who was in sensory heaven in the hot tub. The combination of the jets making the water bubble and the colour change lights that looked like they were dancing in the water made him so happy. He loves a colour change light sequence at the best of times but combine that with the water and he was in seventh heaven. I did manage a couple of trips to the hot tub alone but they didn't last long as he soon followed along.
Adjusting to new surroundings was hard for him. The first night was difficult and it took until nearly 4am for him to settle to sleep, along with saying he wanted to go home. We always try to make it easier by taking his own bedding and and colour change light and desk fan to help him but the mattress feels different and we can't avoid that. Once the first night is over he generally begins to settle.
We had a few trips out but due to his not really having left the house, or in fact done much exercise for the previous few months, it was hard work for him. He did his best and ended up walking quite a long way, but the heat of the day is what did the damage. He kept getting very hot, that coupled with tiring easily due to his hypermobility, and he couldn't stay out for long. I was still proud of him though as he tried so hard despite it being distressing for him.
It's lucky he is oblivious to the stares generated by his outbursts, when he gets distressed. I think if he was aware he would only become more upset. As it was his dad walked off because he just couldn't cope with either his outburst or the stares. Luckily I've got thicker skin. He's my boy and it's isn't his fault, he cannot help it and whatever he says to me when he is distressed isn't intended in the way he says it, it's not personal, it's just how he feels at the time and is entirely due to his distress. I was so proud that he had tried as hard as he did. We made sure he had a couple of quiet days in at the cottage. It was a necessity really after being isolated for so long, it meant he would be able to cope with the days out and maybe even enjoy them.
BeWilderwood in Norfolk is a fantastic, magical woodland treat. It has treehouses with rope bridges between them. A woodland adventure park. We love it. It was tough going for my boy but he clambered up to the treehouses along with the rest of us. In fact he lead the way! It was just a shame it was another hot day and he tired quickly. He really enjoyed what he managed to do though. Each day he recovered in the hot tub after our trips out.
He was however looking forward to coming home and decided that on the Thursday night as he couldn't sleep he would start packing his stuff at 4am! It didn't stop him from getting up at 10am the next day. Firday night he was asleep by 2am, hooray I thought, that thought didn't last long though as he was up at 5.45 am sat by the front door with his case ready to load into the car and go home.
Yes, we are now home and very pleased my boy is. He spent a lot of time cuddling the cat when we got back, fortunately she is very accommodating and has just let him. A bad night again though as he has to re adjust to being back in his own bed, although the lack of sleep has been on our side and he fell asleep quite quickly when he finally went up to bed.
Sadly now we are back home a mountain of washing is mine to sort out. Whilst we have been away the cobwebs have returned along with the tumbleweed that is the cats moulted fur. Still I have a week to deal with it and the memories of a good relaxing holiday.
Adjusting to new surroundings was hard for him. The first night was difficult and it took until nearly 4am for him to settle to sleep, along with saying he wanted to go home. We always try to make it easier by taking his own bedding and and colour change light and desk fan to help him but the mattress feels different and we can't avoid that. Once the first night is over he generally begins to settle.
We had a few trips out but due to his not really having left the house, or in fact done much exercise for the previous few months, it was hard work for him. He did his best and ended up walking quite a long way, but the heat of the day is what did the damage. He kept getting very hot, that coupled with tiring easily due to his hypermobility, and he couldn't stay out for long. I was still proud of him though as he tried so hard despite it being distressing for him.
It's lucky he is oblivious to the stares generated by his outbursts, when he gets distressed. I think if he was aware he would only become more upset. As it was his dad walked off because he just couldn't cope with either his outburst or the stares. Luckily I've got thicker skin. He's my boy and it's isn't his fault, he cannot help it and whatever he says to me when he is distressed isn't intended in the way he says it, it's not personal, it's just how he feels at the time and is entirely due to his distress. I was so proud that he had tried as hard as he did. We made sure he had a couple of quiet days in at the cottage. It was a necessity really after being isolated for so long, it meant he would be able to cope with the days out and maybe even enjoy them.
BeWilderwood in Norfolk is a fantastic, magical woodland treat. It has treehouses with rope bridges between them. A woodland adventure park. We love it. It was tough going for my boy but he clambered up to the treehouses along with the rest of us. In fact he lead the way! It was just a shame it was another hot day and he tired quickly. He really enjoyed what he managed to do though. Each day he recovered in the hot tub after our trips out.
He was however looking forward to coming home and decided that on the Thursday night as he couldn't sleep he would start packing his stuff at 4am! It didn't stop him from getting up at 10am the next day. Firday night he was asleep by 2am, hooray I thought, that thought didn't last long though as he was up at 5.45 am sat by the front door with his case ready to load into the car and go home.
Yes, we are now home and very pleased my boy is. He spent a lot of time cuddling the cat when we got back, fortunately she is very accommodating and has just let him. A bad night again though as he has to re adjust to being back in his own bed, although the lack of sleep has been on our side and he fell asleep quite quickly when he finally went up to bed.
Sadly now we are back home a mountain of washing is mine to sort out. Whilst we have been away the cobwebs have returned along with the tumbleweed that is the cats moulted fur. Still I have a week to deal with it and the memories of a good relaxing holiday.
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