Last year we had a letter from the school about a residential trip that is taking place in February. I threw the letter away, my first instincts were that this was not going to work for Lucy.
Then last week we had a call from the school and he spent over half hour talking about the trip and what it would involve, how it would benefit Lucy and that she had said at school that she wanted to go. I said we would think about it.
First I spoke to Lucy. I asked her if she wanted to go and she told me excitedly that there was going to be a disco on the last night. I asked her again, 'do you want to go then?' She said 'can I go to the party but not stay overnight?' I told her no, that's not possible. She cried. 'I don't want to go, I don't want to stay away from home.'
She has stayed away from home before, a few times actually. But she really doesn't want to stay away with the school.
I decided to take a close look at the place where they are going. I was told in the phone call about all the fantastic activities available. It sounds wonderful, but Lucy has a joint problem which means she is prone to dislocations. We have a medical letter outlining the types of activities she is able to do. Abseiling is out, so is the zipwire, she can't do the ropes and caving could be a problem as she may slip. She wouldn't be able to do orienteering as walking too far causes pain in her knees and ankles. We let her go on day trips which involve walking but at night we have to spend time massages her, medicating her and using wheat bags to help relieve her pain. I'd hate to think she was hurting like that and not having our treatment, and I know she wouldn't accept it off anyone else. Her stress would be unimaginable.
There are some activities she'd be able to do, archery, problem solving, the buggies and of course the last night disco. She probably would join in if the others were doing it. I'm sure she'd get something out of it.
We have been offered the chance to discuss exactly what she could do and what she couldn't. We have been told that she would have all the help she required and she wouldn't be forced to do anything she didn't really want to do or felt uncomfortable about.
We have been told that a lot of the children have trouble sleeping and that there will be staff available throughout the night for anyone who needs them.
We have been told that we could pick her up at any time if it wasn't working out, and that the place they are going is only an hour away on the motorway.
It's been a difficult decision to make and we have all been going around in circles.
If she went it would be an amazing opportunity for her, she would experience being away from home and not with any relative, she would hopefully forge new and closer friendships with her peers.
If she went she would experience a lot of anxiety, not be able to sleep, possible suffer from pain, and is at risk of getting seriously hurt. (she once dislocated her ankle and we have no idea how, and of course she dislocated her cervical spine which needed lots of major surgery to put right.)
We know we wrap her in cotton wool but it's still really raw for us the things she has been through and we know it could happen again, so yes, we are ultra careful with her.
Even if the school were really good and did exactly as they promised we are not sure that her anxiety would not spoil the experience anyway.
But, and there is one big but. What about her incontinence? She has always been fecal incontinent. We are still under the hospital, investigating possible reasons for this. (her next appointment is the day they go away on the school residential trip.) When she has an 'accident' she gets upset, angry, distressed and refuses help in getting cleaned up. She is also refusing to clean herself so we have to force her to come and get cleaned up. The whole situation is really awful and we have to deal with it on a daily basis. It's getting worse as she gets older, when she was younger she was ok with us cleaning her up. She is embarrassed about the whole thing and that's what causes her refusal for help.
She has had 'accidents' at school and they have called us to pick her up and we have taken her home and cleaned her. She has managed to seek help before the other kids have found out what has happened (apart from one time in her last school.) She gets help because she knows that we will pick her up and help her. If she is away with the school she will not seek help because she knows we won't be able to do it. She will not clean herself, she will not let anyone else clean her, the other kids will find out what has happened.
I suppose we could let her go and if she does soil herself go and collect her. But, this is generally a daily occurrence and the trip is for 3 days.
So, our conclusion is to not allow her to go, it feels like the best option at this point.
She is only 11 so she will have many more opportunities like this I'm sure. We are trying so hard to get the incontinence under control and I have every hope that we will get there in the end. We can work on her anxiety too and hopefully an experience like a residential trip would be more workable.
As for her joint condition, maybe if she doesn't have any more serious problems for a while we will become more confident and allow her to do more stuff. We can't keep her wrapped in cotton wool forever.
So now I feel like a bad mum, I feel like I'm letting my daughter miss out.
Lucy, however, is happier knowing that she doesn't have to go, she is just anxious about what will happen to her while the other kids are away.
It's been a tough decision.
Showing posts with label school. Show all posts
Showing posts with label school. Show all posts
Monday, 9 January 2017
Friday, 16 December 2016
Christmas 2016
Today I have been thinking about Christmas 2013 when Lucy was fitted with her first halo. We had a real Christmas Angel that year.
This year it's amazing to see how far she has come. Her neck is strong and she rarely gets any pain now.
Lucy has had some trouble settling at school but she's trying real hard. She loves some lessons, especially music and drama, and others she hates. That's quite normal though isn't it. She particularly loves Band Musicianship which is something her school does, in fact it's the only school in the UK that does it. The kids are allowed access to all sorts of instruments, guitars, drums, pianos and so on, and they form bands and practice together in sound proof rooms. The teachers give very little input and leave the kids to be creative. We went to see all of the year 7 bands perform last week and they were great. Not perfect, but still great because you could see how much they all loved what they were doing. Lucy's band did Adele's 'Hello' and Lucy was one of the two singers. I've heard her sing this song at home and she does it beautifully, however, on the stage she was nervous and shy and didn't belt it out like she used to.
We have decided not to give Lucy the Melatonin, it doesn't stop her from waking up early which is the main problem. We don't really want her relying on drugs to get her to go to sleep as it could become permanent. Also, after the first dose she was feeling sick the next day so we decided not to continue.
The psychologist also suggested giving her Movicol every day, but we already have enough problems and I don't believe that Movicol is the answer to any of them, but more of an added worry.
I'm picking her up from school at lunch time today, she's had difficulty keeping up with all the changes at school in the last week. I know most of the kids are hyper and excited and the school has taken this into consideration and they've had a week where the normal hard work has been put to one side and they've been learning through fun instead. Lucy has had fun but she's been left feeling confused and stressed because of all the changes.
After today she will not have to worry about school until next year, so we will be getting into the Christmas spirit.
This year it's amazing to see how far she has come. Her neck is strong and she rarely gets any pain now.
Lucy has had some trouble settling at school but she's trying real hard. She loves some lessons, especially music and drama, and others she hates. That's quite normal though isn't it. She particularly loves Band Musicianship which is something her school does, in fact it's the only school in the UK that does it. The kids are allowed access to all sorts of instruments, guitars, drums, pianos and so on, and they form bands and practice together in sound proof rooms. The teachers give very little input and leave the kids to be creative. We went to see all of the year 7 bands perform last week and they were great. Not perfect, but still great because you could see how much they all loved what they were doing. Lucy's band did Adele's 'Hello' and Lucy was one of the two singers. I've heard her sing this song at home and she does it beautifully, however, on the stage she was nervous and shy and didn't belt it out like she used to.
We have decided not to give Lucy the Melatonin, it doesn't stop her from waking up early which is the main problem. We don't really want her relying on drugs to get her to go to sleep as it could become permanent. Also, after the first dose she was feeling sick the next day so we decided not to continue.
The psychologist also suggested giving her Movicol every day, but we already have enough problems and I don't believe that Movicol is the answer to any of them, but more of an added worry.
I'm picking her up from school at lunch time today, she's had difficulty keeping up with all the changes at school in the last week. I know most of the kids are hyper and excited and the school has taken this into consideration and they've had a week where the normal hard work has been put to one side and they've been learning through fun instead. Lucy has had fun but she's been left feeling confused and stressed because of all the changes.
After today she will not have to worry about school until next year, so we will be getting into the Christmas spirit.
Thursday, 17 November 2016
A visit with the Psychologist
We had an appointment with the psychologist today, we've not had one for over a year. We've been going to the same place for over five years now and Lucy walked into the office in a real chirpy mood.
"I've not been to see you for ages!"
"Everything looks smaller in here, have I grown so much!"
"I'm at a new school now."
This was before the Doctor had had a chance to speak more than an hello to her.
She was asked about her school and told her which one she was going to, and about the bullying and how it had all been sorted out now. She really was chatty and cheerful, like she was happy to be there. Then she went off to play with some of the (babyish) toys while I was left to speak to the Doctor.
We talked about school, her incontinence problems and her sleep patterns.
Lucy was weighed and measured (yes, she's grown again!) and then examined on the bed where she complained of a sore tummy.
Then she went back to playing while we discussed what our next steps were.
She is going to be referred to the incontinence nurses (I never knew they existed) for help in that area. In the meantime I have to give her Movicol more regularly.
She has been prescribed Melatonin as a trial to aid her sleep problems. We don't think this will help though because Melatonin is used to help someone to go to sleep, Lucy's problem lies in waking up way too early and not going back to sleep. Even if we keep her up later she doesn't sleep longer in the morning. She does have trouble going to sleep some nights and will come downstairs two or three times until I go to bed. Then she comes into our room and sleeps in the spare bed we have. If she does sleep in her own bed she will be awake by 4am and then come into the spare bed in our room. Sometimes she will go back to sleep, but mostly she will play on my mobile until it's time to get up. I used to get up early with her, around 6ish but since I got sick myself I find I can't wake so early anymore due to the drugs I have to take.
We really want to get rid of the spare bed from our room but that would mean even less sleep for me and Lucy's Dad as she would keep getting us up to re-settle her all night long.
We also noted her increased number of meltdowns, and also her lack of maturity compared to her peers. When in meltdown mode she has started to say she wishes she was dead which is very upsetting. I think she's way to young to have thoughts like that. The psychologist assured me that it was her autism, because she see things in black and white and when she feels like nothing is right in her life then the only thing that would take everything away is to end life. It's her answer to ending the bad stuff going on. She doesn't think past the consequences or that things might get better. I'm not sure that this makes me feel any better, but I suppose it's kind of reassuring to think that she's not thinking of dying, or the consequences of dying, she's just thinking of a way of ending her distress with something final. I'll still be keeping an eye on her!
Lucy has always been split in personality, so kind and lovely one minute and a complete monster the next, but as she gets older it seems she has less control over her emotions and the fight inside her is real.
We try our best to avoid meltdowns but sometimes we get it wrong. Yesterday, for instance, we realised too late that her siblings had and Inset day and didn't have to go to school. Not too late for them, but too late to let Lucy know and process the information. Her finding out on the morning that she had school and the other two didn't was just too much for her and she went into a soul destroying meltdown. I felt so awful for her, she lashed out at everyone and everything, and, of course, wanted to die. We did manage to calm her down, and there was even a smile by the time we dropped her off at school. She came home in a great mood after a good day. Of course I'd spent the day worrying about her.
She goes from loving being at school to hating it with a passion. I guess that's quite normal for an eleven year old though. I can even remember feeling like that myself at times. Although I will admit that it's hard to remember so long ago. We are persevering with mainstream school for now though. If they can sort out her bullying problem and she can go into school without any trouble then it can't be bad. She is refusing to do any homework though. It's a strange system they have. They get booklets for all their lessons and have to complete sections of the booklets which they are tested on their knowledge every two weeks. However, the booklets are not checked or marked (except for her English one) so it's only the tests that show that they have done any work at home. Lucy has managed to wing it so far and passed all the tests. I am now trying to get her to do at least a little work at home even though she claims there is no need because she's passing the tests.
We know the worst is yet to come as she hurtles towards puberty, but sometimes we feel positive that we can do this the best we can and all come through unscathed. Fingers tightly crossed X
"I've not been to see you for ages!"
"Everything looks smaller in here, have I grown so much!"
"I'm at a new school now."
This was before the Doctor had had a chance to speak more than an hello to her.
She was asked about her school and told her which one she was going to, and about the bullying and how it had all been sorted out now. She really was chatty and cheerful, like she was happy to be there. Then she went off to play with some of the (babyish) toys while I was left to speak to the Doctor.
We talked about school, her incontinence problems and her sleep patterns.
Lucy was weighed and measured (yes, she's grown again!) and then examined on the bed where she complained of a sore tummy.
Then she went back to playing while we discussed what our next steps were.
She is going to be referred to the incontinence nurses (I never knew they existed) for help in that area. In the meantime I have to give her Movicol more regularly.
She has been prescribed Melatonin as a trial to aid her sleep problems. We don't think this will help though because Melatonin is used to help someone to go to sleep, Lucy's problem lies in waking up way too early and not going back to sleep. Even if we keep her up later she doesn't sleep longer in the morning. She does have trouble going to sleep some nights and will come downstairs two or three times until I go to bed. Then she comes into our room and sleeps in the spare bed we have. If she does sleep in her own bed she will be awake by 4am and then come into the spare bed in our room. Sometimes she will go back to sleep, but mostly she will play on my mobile until it's time to get up. I used to get up early with her, around 6ish but since I got sick myself I find I can't wake so early anymore due to the drugs I have to take.
We really want to get rid of the spare bed from our room but that would mean even less sleep for me and Lucy's Dad as she would keep getting us up to re-settle her all night long.
We also noted her increased number of meltdowns, and also her lack of maturity compared to her peers. When in meltdown mode she has started to say she wishes she was dead which is very upsetting. I think she's way to young to have thoughts like that. The psychologist assured me that it was her autism, because she see things in black and white and when she feels like nothing is right in her life then the only thing that would take everything away is to end life. It's her answer to ending the bad stuff going on. She doesn't think past the consequences or that things might get better. I'm not sure that this makes me feel any better, but I suppose it's kind of reassuring to think that she's not thinking of dying, or the consequences of dying, she's just thinking of a way of ending her distress with something final. I'll still be keeping an eye on her!
Lucy has always been split in personality, so kind and lovely one minute and a complete monster the next, but as she gets older it seems she has less control over her emotions and the fight inside her is real.
We try our best to avoid meltdowns but sometimes we get it wrong. Yesterday, for instance, we realised too late that her siblings had and Inset day and didn't have to go to school. Not too late for them, but too late to let Lucy know and process the information. Her finding out on the morning that she had school and the other two didn't was just too much for her and she went into a soul destroying meltdown. I felt so awful for her, she lashed out at everyone and everything, and, of course, wanted to die. We did manage to calm her down, and there was even a smile by the time we dropped her off at school. She came home in a great mood after a good day. Of course I'd spent the day worrying about her.
She goes from loving being at school to hating it with a passion. I guess that's quite normal for an eleven year old though. I can even remember feeling like that myself at times. Although I will admit that it's hard to remember so long ago. We are persevering with mainstream school for now though. If they can sort out her bullying problem and she can go into school without any trouble then it can't be bad. She is refusing to do any homework though. It's a strange system they have. They get booklets for all their lessons and have to complete sections of the booklets which they are tested on their knowledge every two weeks. However, the booklets are not checked or marked (except for her English one) so it's only the tests that show that they have done any work at home. Lucy has managed to wing it so far and passed all the tests. I am now trying to get her to do at least a little work at home even though she claims there is no need because she's passing the tests.
We know the worst is yet to come as she hurtles towards puberty, but sometimes we feel positive that we can do this the best we can and all come through unscathed. Fingers tightly crossed X
Wednesday, 9 November 2016
Being Bullied
My former joy with Lucy's school has now turned to dismay. Last week Lucy told us she was being bullied by four boys in her year. She did what was right and told on them straight away. The teacher said they would speak to them but the bullying continued. She told on them again, the school is always telling the kids that if they tell they can deal with the problem and no-one should have to suffer. This time the teacher did nothing and she was bullied again and this time threatened with physical abuse not just verbal.
Lucy had not mentioned any of this to us but thankfully she did after she realised that telling the teacher wasn't working. We went straight to the school and spoke with the head of lower school. He assured us that he would talk to the boys and contact their parents and that the bullying would stop. He also put in place a lady that Lucy could go to and talk about her concerns every morning and again just before the end of the day. We felt quite satisfied that our concerns were being heard.
When Lucy got home she said they had threatened her again.
We decided that things like this take time and that the next day would be better.
Things were not better and the lady that Lucy was supposed to be seeing for help twice a day was off sick so she only ever saw her once.
On Monday this week the boys got really threatening towards Lucy and told her that she was going to get a beating the next day. This upset her so much she was inconsolable and refused to go to school the next day. Her Dad went into the school in the morning and explained why she was refusing to attend and expressed his anger at this problem not being solved yet. They said they would get someone to call us during the day. That call never came.
Lucy was happy to go into school the next day. We had managed to find a friend for her a couple of years older who was happy to look out for her. Also, the way Lucy's mind works is that the boys had threatened to hurt her on Tuesday and now it was Wednesday so the threat was over, she'd missed it by not going to school. Bless her, if only the other's had the same mindset.
So now I'm hoping and praying that she's been ok today and the boys have left her alone. I hope that the teacher's have done as promised and solved the problem. I hope that if anything does happen that her older friend will be there to protect her. It's all hope. I'm just so glad that she doesn't have to come home alone. There is little chance these boys will strike on the school premises and little chance they will get to her out of school.
There is nothing more depressing than knowing your child is suffering when you can't be there.
Lucy had not mentioned any of this to us but thankfully she did after she realised that telling the teacher wasn't working. We went straight to the school and spoke with the head of lower school. He assured us that he would talk to the boys and contact their parents and that the bullying would stop. He also put in place a lady that Lucy could go to and talk about her concerns every morning and again just before the end of the day. We felt quite satisfied that our concerns were being heard.
When Lucy got home she said they had threatened her again.
We decided that things like this take time and that the next day would be better.
Things were not better and the lady that Lucy was supposed to be seeing for help twice a day was off sick so she only ever saw her once.
On Monday this week the boys got really threatening towards Lucy and told her that she was going to get a beating the next day. This upset her so much she was inconsolable and refused to go to school the next day. Her Dad went into the school in the morning and explained why she was refusing to attend and expressed his anger at this problem not being solved yet. They said they would get someone to call us during the day. That call never came.
Lucy was happy to go into school the next day. We had managed to find a friend for her a couple of years older who was happy to look out for her. Also, the way Lucy's mind works is that the boys had threatened to hurt her on Tuesday and now it was Wednesday so the threat was over, she'd missed it by not going to school. Bless her, if only the other's had the same mindset.
So now I'm hoping and praying that she's been ok today and the boys have left her alone. I hope that the teacher's have done as promised and solved the problem. I hope that if anything does happen that her older friend will be there to protect her. It's all hope. I'm just so glad that she doesn't have to come home alone. There is little chance these boys will strike on the school premises and little chance they will get to her out of school.
There is nothing more depressing than knowing your child is suffering when you can't be there.
Tuesday, 18 October 2016
The Zebra at School
Lucy seems to be doing well at school. We have a little resistance to going some days, but she almost always comes out smiling which I think is a much better indication of how she's getting on.
A couple of weeks ago I had a call from the school saying could she be picked up from reception. It was almost the end of the day and Dad had already gone to collect her, he waits on the hill outside of the school. I couldn't get him on his mobile so I went out to the car (all by myself...wow!) and drove to the school where I found Dad and told him to go to reception. It was a bit of a risk as I knew I wouldn't be able to get out of the car to search for him, but he was easily visible.
So we picked her up and she was in agony with her stomach. The teacher thought she may be starting her 'monthlies' so had given her a pad.
We took her home and found that she had wet herself. She said it had happened shortly after the pain had started but she had not told the teacher.
We had an awful night with her, even after her Calpol Plus she didn't feel any better. We gave her a hot water bottle to cuddle which decreased her moaning a little for a while.
During the night she woke me and I had to go to the toilet with her. Her urine was dark and very smelly and she had a lot of pain on passing water. It was then I realised she was not about to start her monthly but had a water infection.
The next day we took her to an out of hours surgery where it was confirmed that she had a water infection and given anti-biotics to take. She still suffered all weekend, she didn't move from the settee where she cuddled her hot water bottle. It took days for the infection to clear and for Lucy to feel any better. She didn't go back to school until the following Thursday. She'd been better on the Wednesday but was incredibly stressed about going to school so we let her have the day off. On Thursday she was happy to go back. Sometimes you have to listen to your child, she may have been feeling better from her illness on Wednesday but she wasn't feeling well enough for school and would probably had an awful day. Plus she was still having problems with going to the toilet and point blank refuses to use the school toilets.
What is it with school toilets, no-one likes to use them? I used to hate it because the girls at my school always smoked in there and it stank. I don't think they'd get away with smoking in the loos these days!
Lucy has been ok since she's been back at school.
I am dreading the day she does start her 'monthlies.' I can't imagine it at the moment. She does wear pads already but they are incontinence pads. It's going to get very messy if she's still incontinent when she starts her period too. Sorry TMI.
I always found that my joints became more lax during my period. My knees and ankles would sublux all the time, so I really hope that Lucy doesn't have the same problem.
In other news... Lucy has an appointment with her psychologist next month. She's looking forward to it because her dr is a really nice lady (with an incredibly difficult name to pronounce but I've got it now, well, we've been seeing her for five years!)
A couple of weeks ago I had a call from the school saying could she be picked up from reception. It was almost the end of the day and Dad had already gone to collect her, he waits on the hill outside of the school. I couldn't get him on his mobile so I went out to the car (all by myself...wow!) and drove to the school where I found Dad and told him to go to reception. It was a bit of a risk as I knew I wouldn't be able to get out of the car to search for him, but he was easily visible.
So we picked her up and she was in agony with her stomach. The teacher thought she may be starting her 'monthlies' so had given her a pad.
We took her home and found that she had wet herself. She said it had happened shortly after the pain had started but she had not told the teacher.
We had an awful night with her, even after her Calpol Plus she didn't feel any better. We gave her a hot water bottle to cuddle which decreased her moaning a little for a while.
During the night she woke me and I had to go to the toilet with her. Her urine was dark and very smelly and she had a lot of pain on passing water. It was then I realised she was not about to start her monthly but had a water infection.
The next day we took her to an out of hours surgery where it was confirmed that she had a water infection and given anti-biotics to take. She still suffered all weekend, she didn't move from the settee where she cuddled her hot water bottle. It took days for the infection to clear and for Lucy to feel any better. She didn't go back to school until the following Thursday. She'd been better on the Wednesday but was incredibly stressed about going to school so we let her have the day off. On Thursday she was happy to go back. Sometimes you have to listen to your child, she may have been feeling better from her illness on Wednesday but she wasn't feeling well enough for school and would probably had an awful day. Plus she was still having problems with going to the toilet and point blank refuses to use the school toilets.
What is it with school toilets, no-one likes to use them? I used to hate it because the girls at my school always smoked in there and it stank. I don't think they'd get away with smoking in the loos these days!
Lucy has been ok since she's been back at school.
I am dreading the day she does start her 'monthlies.' I can't imagine it at the moment. She does wear pads already but they are incontinence pads. It's going to get very messy if she's still incontinent when she starts her period too. Sorry TMI.
I always found that my joints became more lax during my period. My knees and ankles would sublux all the time, so I really hope that Lucy doesn't have the same problem.
In other news... Lucy has an appointment with her psychologist next month. She's looking forward to it because her dr is a really nice lady (with an incredibly difficult name to pronounce but I've got it now, well, we've been seeing her for five years!)
Thursday, 22 September 2016
New School and Neurosurgery Appointment.
I am so far impressed with Lucy's new Secondary School. She was upset the first day attending but soon settled in and seems happy to go. Of course I have concerns about how she will get on but the school have been very proactive in putting things into place for her.
Today I have two calls from the school. The Inclusion Lead teacher wanted my permission for restricted P.E. I did tell them she had problems and may not be able to do P.E. lessons but I wanted to wait to see her Neuro Surgeon before telling them what she can and can't do. The school have already assessed her abilities and made special arrangements for her. I'm very impressed, and happy that my girl will be included in some P.E. lessons but not pushed to the point that she could be hurt.
The second call was from a lady from Place 2 Be which is a type of school counselling service. Lucy told me she had been attending. She has to request to an appointment by letter and has been doing this herself. Now the lady wants to speak to me to let me know of the things Lucy has been talking about and for my permission to refer her to counselling. It's nice to know that Lucy has somewhere to go and someone to talk to. she does get really anxious about a lot of things.
Today I also received a letter about her appointment with her neuro consultant that she saw last month. I didn't go to the appointment, I asked her Dad to take her because on previous visits I knew that you have to wait in a fairly small corridor and my wheelchair would be an obstruction.
The appointment went well and the letter outlines everything discussed. Lucy does have a spinal prominance at C6 C7. This means the back of her neck has a lump. The consultant explained this was due to the bone graft. Any pain she has should subside eventually and she can take pain relief if it gets too painful. Her scar has healed nicely and there are no problems there or with her CT Scan. So
good news really.
The letter also outlines everything she can and cannot do sport wise which is great for the school. I will make a copy and take it in to them, but they are already doing all they can so it will be just a case of medical evidence.
Everything seems to be falling into place. I just hope the counsellor doesn't have too many worries for me to deal with. Lucy seems quite happy anyway.
Today I have two calls from the school. The Inclusion Lead teacher wanted my permission for restricted P.E. I did tell them she had problems and may not be able to do P.E. lessons but I wanted to wait to see her Neuro Surgeon before telling them what she can and can't do. The school have already assessed her abilities and made special arrangements for her. I'm very impressed, and happy that my girl will be included in some P.E. lessons but not pushed to the point that she could be hurt.
The second call was from a lady from Place 2 Be which is a type of school counselling service. Lucy told me she had been attending. She has to request to an appointment by letter and has been doing this herself. Now the lady wants to speak to me to let me know of the things Lucy has been talking about and for my permission to refer her to counselling. It's nice to know that Lucy has somewhere to go and someone to talk to. she does get really anxious about a lot of things.
Today I also received a letter about her appointment with her neuro consultant that she saw last month. I didn't go to the appointment, I asked her Dad to take her because on previous visits I knew that you have to wait in a fairly small corridor and my wheelchair would be an obstruction.
The appointment went well and the letter outlines everything discussed. Lucy does have a spinal prominance at C6 C7. This means the back of her neck has a lump. The consultant explained this was due to the bone graft. Any pain she has should subside eventually and she can take pain relief if it gets too painful. Her scar has healed nicely and there are no problems there or with her CT Scan. So
good news really.
The letter also outlines everything she can and cannot do sport wise which is great for the school. I will make a copy and take it in to them, but they are already doing all they can so it will be just a case of medical evidence.
Everything seems to be falling into place. I just hope the counsellor doesn't have too many worries for me to deal with. Lucy seems quite happy anyway.
Thursday, 25 August 2016
Happy Birthday Little Zebra
It was Lucy's 11th birthday yesterday. This week her secondary school have been having the new starters in for a summer school. She went in Monday and Tuesday and really loved it. She was looking forward to going in yesterday as it would be the first time she'd ever been to school on her birthday. It was not to be, however, as she decided she didn't want to go to school after all. It wasn't compulsory so to avoid upsetting her we let her have her way.
We didn't plan anything special for her birthday as we thought she wouldn't be here and we are all going out for a big family meal on Saturday. So she had to make do with a birthday shopping trip for school shoes...at least that's one more thing ticked off the back to school list.
Her main present was a drawing tablet for her PC. It's a flat device with a pen, which when connected to the PC it allows you to draw as if you were drawing on paper. It really makes a different if you want to draw on the PC and she's really pleased with it. She really does love her art work and already has her unique style. I'll share something with you when I get the chance.
Today she didn't go into school again as it was her appointment with her Neuro Surgeon at the hospital. She had her scan about six weeks ago to see how things were going. She has had some pain and soreness in her neck so, although we didn't think there was anything wrong, we were anxious for this appointment. The Neuro Surgeon, Mr S. was very pleased with her scan. Everything was fusing nicely. He said the discomfort she had been feeling was probably due to the bone graft fusing and growing along with her other bones, so it's a good thing not bad. He's promised to send us before and after scans of her neck, but we will have to wait and see if they ever appear.
In other news we took Lucy for her cardio appointment last month. They were incredibly thorough in their investigations including an ECG and an ultrasound scan. The results were all good, she does not have any heart problems. Again, we didn't really think she had but all these tests are to help the geneticist in her study to find out which type of Elhers Danlos Syndrome that she has.
The tests are all done now so we will wait for the geneticist to call us back. I'm not sure what she is going to say. She was considering a diagnosis of Marfan Syndrome but that would mean she would have heart and eye problems and she doesn't. It can't be ruled out for a future diagnosis though as these problems can develop later in life.
We still have to contend with her stomach problems on a daily basis too. Maybe one day everything will just suddenly get better, I'm forever hopeful.
The next big step in Lucy's life is starting secondary school just two weeks from now!
We didn't plan anything special for her birthday as we thought she wouldn't be here and we are all going out for a big family meal on Saturday. So she had to make do with a birthday shopping trip for school shoes...at least that's one more thing ticked off the back to school list.
Her main present was a drawing tablet for her PC. It's a flat device with a pen, which when connected to the PC it allows you to draw as if you were drawing on paper. It really makes a different if you want to draw on the PC and she's really pleased with it. She really does love her art work and already has her unique style. I'll share something with you when I get the chance.
Today she didn't go into school again as it was her appointment with her Neuro Surgeon at the hospital. She had her scan about six weeks ago to see how things were going. She has had some pain and soreness in her neck so, although we didn't think there was anything wrong, we were anxious for this appointment. The Neuro Surgeon, Mr S. was very pleased with her scan. Everything was fusing nicely. He said the discomfort she had been feeling was probably due to the bone graft fusing and growing along with her other bones, so it's a good thing not bad. He's promised to send us before and after scans of her neck, but we will have to wait and see if they ever appear.
In other news we took Lucy for her cardio appointment last month. They were incredibly thorough in their investigations including an ECG and an ultrasound scan. The results were all good, she does not have any heart problems. Again, we didn't really think she had but all these tests are to help the geneticist in her study to find out which type of Elhers Danlos Syndrome that she has.
The tests are all done now so we will wait for the geneticist to call us back. I'm not sure what she is going to say. She was considering a diagnosis of Marfan Syndrome but that would mean she would have heart and eye problems and she doesn't. It can't be ruled out for a future diagnosis though as these problems can develop later in life.
We still have to contend with her stomach problems on a daily basis too. Maybe one day everything will just suddenly get better, I'm forever hopeful.
The next big step in Lucy's life is starting secondary school just two weeks from now!
Wednesday, 13 April 2016
Talking about Autism
I've realised that I've focused a lot on Lucy's problems in this blog and I have kind of neglected talking about her autism. This week has had me thinking a lot about it.
I normally love the Easter Holidays but I have to admit that the past fortnight have been the worst holiday yet. It doesn't help that I have poor mobility and we no longer have a car so going out anywhere is more difficult. It's hard to get Lucy out, but when we had the car we could just bundle her in and she'd soon calm down. We have to get her to agree to go out on public transport, and she has to be feeling fit enough to cope with the walking.
So, we've spent a lot of time indoors and cabin fever has arisen. Lucy would be happy to stay indoors if she was allowed to spend the whole time on her PC, but we do have to limit screen time for all the kids. The girls have picked up a new hobby of customising Littlest pet Shop figures. This involves using clay to make extra parts and painting the figures. I've spent a small fortune on paint, clay and the figures but it's helped to keep them occupied.
The problem is, Lucy gets frustrated really quickly if things don't quite go right. Then she takes her frustrations out on her sister. Her sister has taken to screaming a lot as her defense and to be honest it feels like hell has been let loose.
The girls also had a lot of homework to do over the holiday. Her sister managed to complete hers, but Lucy has barely touched hers despite several attempts and with me helping her all the way. She is worked up about the SATS that she has to sit in May and the way the school is putting pressure on them to do well. She is having to stay behind to school for two hours three times a week to prepare, along with the rest of the class. Well, I should say, the rest of the class are staying behind and Lucy SHOULD be staying with them. She is refusing most days.
The school have made arrangements for her and a few other 'problematic' students to sit the tests in a separate room to ease the pressure on them. We have also had to take a set of spare clothes in, secretly, so that she can change at school if she has an 'accident.' She normally comes home, so she won't be happy if it does happen. It just makes me feel sad that this has to be done.
I'm thinking now whether hoping to keep her in mainstream as she moves on up to secondary school is just a pipe dream. In reality I have no choice as there is nowhere else for her to go. She's not autistic enough to go to a special school, and if she did, would she ever achieve her full potential. One difference I have noticed between Lucy and her Aspie older brother is that he was much brighter at school. He didn't find the work difficult, just coping with the school day. Lucy doesn't cope with either. I know she's not dumb, but she refuses to learn sometimes. I was trying to do her maths homework with her and she was just not taking any of it in. I know maths was never my best subject, but if you don't listen then you don't learn, and Lucy just doesn't listen. She is much better at English, she reads perfectly and understand everything she reads. But she doesn't like writing, and English involves a lot of writing.
One of the advantages of being at a 'not very good' school is that there are a lot of children just like Lucy there, but is that a good thing. It means she doesn't stick out like a sore thumb, like her brother did. But it also means that she has not learnt anything about controlling her behaviour to even begin to try and fit in. She complains about being bullied, but when we question her we can see that it's not bullying. She says the other girls don't like her and make fun of her, but her teacher says otherwise, and we've asked her to keep an eye on them. Ok, maybe the teacher doesn't see everything but Lucy does seem fairly happy at school. She just likes to keep us on our toes with her complaints.
The sleeping problem continues. Even her little brother goes to bed on his own and to sleep without any bother. Lucy, however, has us taking her back to bed for at least three hours after initially taking her up. Even then she always ends up in the spare bed in our room. We are going to remove that bed soon. We only had it for her little brother while we were sorting his room out (Which was the last room to be done after we moved in.) However, since she's been coming in our room we've been reluctant to get rid of it because it has saved us from getting up time and time again throughout the night. Not only that but I can't actually keep getting up as it's far too much effort for me to get in and out of bed now that I am disabled, so it's all down to her Dad. We do need to remove it though, she has to learn to stay in her own bed.
So, that's where we are right now. She's struggling with school, with sleep and with maintaining a relationship with her sister. Her meltdowns are becoming more frequent and she thinks everything revolves around her. She never understands how her behaviour hurts or upsets others.
We should be seeing the psychologist again soon, although we don't have an appointment yet, then maybe we can talk about how things are going and work out a plan to help her. I may even give the clinic a call and see if she can be fitted in sooner. We definitely need to talk to someone before she goes to secondary school.
I normally love the Easter Holidays but I have to admit that the past fortnight have been the worst holiday yet. It doesn't help that I have poor mobility and we no longer have a car so going out anywhere is more difficult. It's hard to get Lucy out, but when we had the car we could just bundle her in and she'd soon calm down. We have to get her to agree to go out on public transport, and she has to be feeling fit enough to cope with the walking.
So, we've spent a lot of time indoors and cabin fever has arisen. Lucy would be happy to stay indoors if she was allowed to spend the whole time on her PC, but we do have to limit screen time for all the kids. The girls have picked up a new hobby of customising Littlest pet Shop figures. This involves using clay to make extra parts and painting the figures. I've spent a small fortune on paint, clay and the figures but it's helped to keep them occupied.
The problem is, Lucy gets frustrated really quickly if things don't quite go right. Then she takes her frustrations out on her sister. Her sister has taken to screaming a lot as her defense and to be honest it feels like hell has been let loose.
The girls also had a lot of homework to do over the holiday. Her sister managed to complete hers, but Lucy has barely touched hers despite several attempts and with me helping her all the way. She is worked up about the SATS that she has to sit in May and the way the school is putting pressure on them to do well. She is having to stay behind to school for two hours three times a week to prepare, along with the rest of the class. Well, I should say, the rest of the class are staying behind and Lucy SHOULD be staying with them. She is refusing most days.
The school have made arrangements for her and a few other 'problematic' students to sit the tests in a separate room to ease the pressure on them. We have also had to take a set of spare clothes in, secretly, so that she can change at school if she has an 'accident.' She normally comes home, so she won't be happy if it does happen. It just makes me feel sad that this has to be done.
I'm thinking now whether hoping to keep her in mainstream as she moves on up to secondary school is just a pipe dream. In reality I have no choice as there is nowhere else for her to go. She's not autistic enough to go to a special school, and if she did, would she ever achieve her full potential. One difference I have noticed between Lucy and her Aspie older brother is that he was much brighter at school. He didn't find the work difficult, just coping with the school day. Lucy doesn't cope with either. I know she's not dumb, but she refuses to learn sometimes. I was trying to do her maths homework with her and she was just not taking any of it in. I know maths was never my best subject, but if you don't listen then you don't learn, and Lucy just doesn't listen. She is much better at English, she reads perfectly and understand everything she reads. But she doesn't like writing, and English involves a lot of writing.
One of the advantages of being at a 'not very good' school is that there are a lot of children just like Lucy there, but is that a good thing. It means she doesn't stick out like a sore thumb, like her brother did. But it also means that she has not learnt anything about controlling her behaviour to even begin to try and fit in. She complains about being bullied, but when we question her we can see that it's not bullying. She says the other girls don't like her and make fun of her, but her teacher says otherwise, and we've asked her to keep an eye on them. Ok, maybe the teacher doesn't see everything but Lucy does seem fairly happy at school. She just likes to keep us on our toes with her complaints.
The sleeping problem continues. Even her little brother goes to bed on his own and to sleep without any bother. Lucy, however, has us taking her back to bed for at least three hours after initially taking her up. Even then she always ends up in the spare bed in our room. We are going to remove that bed soon. We only had it for her little brother while we were sorting his room out (Which was the last room to be done after we moved in.) However, since she's been coming in our room we've been reluctant to get rid of it because it has saved us from getting up time and time again throughout the night. Not only that but I can't actually keep getting up as it's far too much effort for me to get in and out of bed now that I am disabled, so it's all down to her Dad. We do need to remove it though, she has to learn to stay in her own bed.
So, that's where we are right now. She's struggling with school, with sleep and with maintaining a relationship with her sister. Her meltdowns are becoming more frequent and she thinks everything revolves around her. She never understands how her behaviour hurts or upsets others.
We should be seeing the psychologist again soon, although we don't have an appointment yet, then maybe we can talk about how things are going and work out a plan to help her. I may even give the clinic a call and see if she can be fitted in sooner. We definitely need to talk to someone before she goes to secondary school.
Wednesday, 23 December 2015
Another Appointment with the Poo doctor!
I never feel really comfortable talking about poo, and yet it seems to dominate my life!
This week we had another visit with the gastro doctor at the Children's hospital. It was a 6pm appointment just 3 days before Christmas, so we went into town early to have a browse and look at the decorations. The kids were not really all that interested though, but it could have been because of the rain. We did go into the church and light some candles for lost family members, including the two cats this year. The kids loved the nativity scene, despite the characters not having faces.
Anyway, onto the appointment. Back in October, Lucy was put on a high dose of Movical to clear her out. We didn't manage to get it to work. It took five days before there was any sort of result at all and then the school break was over and I didn't want to risk her getting loose while at school so I stopped giving it to her. So, now it's the Christmas holiday and she has two weeks before she goes back to school so we are going to try again, but with an even higher dosage. It's going to be a smelly Christmas. She also has to go back to the hospital for blood tests next week. The Dr wants to rule things out to find what her problem really is. Lucy isn't happy as she has developed a real fear of needles, but I'm sure we'll get through it somehow, perhaps with some bribery.
In other news, Lucy's class is going on a residential trip in the summer. It's not the first time she's had the chance to go, but it's been four years since the last one. I've had to turn this trip down for exactly the same reasons as the last one which makes me feel sad as it shows there has been no improvement in that time. In fact things are much worse now. We not only have the incontinence and sleep problems to worry about, but also the fact that we would be worried sick about her getting hurt. She fractured her ankle stepping off a very small stage during a school concert, the school didn't even know she was hurt.how could we be sure she'd be ok away from home. Lucy is fine with not going, part of her would like to join in, but she knows she wouldn't be able to cope away from home.
Which brings me to my worries about secondary school. I know we have chosen the right school for now, but I'm really not sure how she is going to cope. All along I've said we will have to give her the chance of a normal school life, but if it goes wrong we'll take her out and find another option. Now, I'm concerned so much about the if it goes wrong part. If it did, would it be something she'd ever get over even if we did intervene?
This week we had another visit with the gastro doctor at the Children's hospital. It was a 6pm appointment just 3 days before Christmas, so we went into town early to have a browse and look at the decorations. The kids were not really all that interested though, but it could have been because of the rain. We did go into the church and light some candles for lost family members, including the two cats this year. The kids loved the nativity scene, despite the characters not having faces.
Anyway, onto the appointment. Back in October, Lucy was put on a high dose of Movical to clear her out. We didn't manage to get it to work. It took five days before there was any sort of result at all and then the school break was over and I didn't want to risk her getting loose while at school so I stopped giving it to her. So, now it's the Christmas holiday and she has two weeks before she goes back to school so we are going to try again, but with an even higher dosage. It's going to be a smelly Christmas. She also has to go back to the hospital for blood tests next week. The Dr wants to rule things out to find what her problem really is. Lucy isn't happy as she has developed a real fear of needles, but I'm sure we'll get through it somehow, perhaps with some bribery.
In other news, Lucy's class is going on a residential trip in the summer. It's not the first time she's had the chance to go, but it's been four years since the last one. I've had to turn this trip down for exactly the same reasons as the last one which makes me feel sad as it shows there has been no improvement in that time. In fact things are much worse now. We not only have the incontinence and sleep problems to worry about, but also the fact that we would be worried sick about her getting hurt. She fractured her ankle stepping off a very small stage during a school concert, the school didn't even know she was hurt.how could we be sure she'd be ok away from home. Lucy is fine with not going, part of her would like to join in, but she knows she wouldn't be able to cope away from home.
Which brings me to my worries about secondary school. I know we have chosen the right school for now, but I'm really not sure how she is going to cope. All along I've said we will have to give her the chance of a normal school life, but if it goes wrong we'll take her out and find another option. Now, I'm concerned so much about the if it goes wrong part. If it did, would it be something she'd ever get over even if we did intervene?
Wednesday, 26 August 2015
A Visit with The Psychologist
Lucy was first referred to her psychologist at four years old. Two years ago she was told that there was no need for her to be seen regularly any more but she was left as a patient in case she needed further help in the future. I was grateful for this because I remember with my eldest that the most difficult years with his autism came when he hit puberty and I really needed the extra support then.
Yesterday we went back for a visit, just a check to see how she was getting on and because her GP was concerned about her sleeping patterns.
We gave her the past history of the last two years and she was shocked that she'd not been kept in the loop. I know that when Lucy was first admitted to hospital I gave the name of her psychologist as they had asked where she had her diagnosis of autism and hypermobility from. However, they had not contacted her.
She was in a agreement with Lucy's diagnosis of Elhers Danlos Syndrome and asked if we'd been offered genetic testing. When I said no she said she'd arrange it for the rest of the family.
I will admit that I am a little confused with genetic part of EDS. I know that there are ten different types of EDS and some are due to faulty genes, however the hypermobility type does not have a faulty gene identifier and this is the type that Lucy has. So I'm not sure that genetic testing will show up anything. There are other symptoms present in Lucy though, and it's obvious that other family members have hypermobility, so maybe with us all having some testing it will be confirmed if there is anything else going on. Or anything to look out for in the future.
Lucy's psychologist was the person who managed to get Lucy all the help she needed in her previous school where she was doing really well. In her current school she has no help at all and I do worry about her. It's not the best school for her but she doesn't want to go anywhere else and doesn't want to be split from her siblings. I've tried all the other schools in the area and there is not one that can take all three, so a school move would mean splitting them. So I have been resigned to leaving them where they are for at least one more year, seeing as it will be Lucy's last year anyway. Now, she has been promised all the extra help she had before, externally. So the school will not have to help her, they'll just have to accommodate her helpers. This will be a lot more comforting. Hopefully this help will continue into her next school as well now. It's a huge weight off my mind. Of course I have to wait for this help to materialise but past experience has shown me that this pyschologist gets things done.
Sunday, 18 January 2015
Autism in the Family
I'd like to take you on a little journey back in time, twenty seven years to be precise because that's when my first born son arrived in this world. There is nothing so precious as your first born child, even if they do cry all the time and have no clue that night time is for sleeping.
I took him into a local shop when he was around six months old and the shopkeeper started asking me lots of questions about him. It was then I realised that he was not like other babies. She actually said that six month old babies were cute and smiled a lot, that they liked to play with you and started to sleep better. Nope, not my son, he still liked to cry all day and all night, unless I was walking him around in his pram.
When he was seventeen months old his sister was born and boy was I in for a surprise. This baby slept, I didn't have to hold her all the time I could lie her down in her moses basket and leave her to gurgle. When she was full from her feed she'd drift off to sleep with no problem and not wake up for hours. Perhaps something was wrong with her?
As they grew it became obvious that they had two very different personalities. It was because one was a boy and one a girl, wasn't it? My son was so naughty, all the time, and he never listened.
We had problems at school. he would sit under the table, refuse to go back into school after break time, not listen to the teacher or parrot what she was saying, refuse to write, refuse to read, refuse to eat his lunch, refuse to use the toilet. He was a very naughty boy!
His teacher gave me the number of a child psychologist. How dare she assume something was wrong with my son just because he was naughty. I just had to try harder, make sure he was disciplined more, I know I was soft on him, but his dad was really tough. I hated it when he played up and his dad was around.
His dad left us when he was nine. It was ok, we could manage.
The school asked me to take him to the GP as they thought he might have ADHD. Pah, they thought every kid had ADHD. My son could sit in front of his N64 for hours on end, he had perfect attention when it was needed.
I took him to the GP who asked lots of questions while my son climbed on the back of my chair like he was climbing Everest and pulled my hair like it was a rope. The GP decided that I wasn't coping very well with my husband leaving and prescribed for me anti-depressants. All the way home my son chanted "you are the crazy one, not me!"
He started secondary school, it didn't go well. His best friend no longer wanted to be his best friend and he didn't want to speak to anyone else, even the teachers. They put him in the Special Needs class which made him worse.
When he was twelve we went to see the psychologist. She asked a millions questions while my son sat eating his trainer.
He was diagnosed with Aspergers Syndrome.
Things got worse at school, not better. Inclusion was heard of then, but their ideas where ridiculous. My son was clever, but because he now had a diagnosis he was put in a class where he was learning the same stuff that six year olds would learn. He objected. I objected. I took him out of school.
He went to a school for kids that didn't fit into any other school. He was supposed to have been there for six months while they integrated him into a regular school. He was there for three and a half years. Then he went to a fantastic special collage which really didn't stretch him academically but gave him the opportunity to try so many new things like glass blowing, basket weaving, engraving and astronomy. It was somewhere for him to be while I tried to figure out what we were going to do next.
He decided himself and went and did an accountancy degree. I'm not sure that he will ever work in accountancy but at least he proved something to himself if no-one else.
And that is the story of my first born son.
I could go into more detail, but as he is an adult now I will respect his privacy. The main reason I wanted to share his story is because of where I am now with Lucy. She is about to go back to school full time. Next year she will going to secondary school. I have the difficult decision to make of what school she will go to. I know that things have probably changed since my son started secondary school fifteen years ago, but have they changed enough? It's something on my mind a lot at the moment and I'm sure I'll be writing a lot more about it while I figure it all out.
I took him into a local shop when he was around six months old and the shopkeeper started asking me lots of questions about him. It was then I realised that he was not like other babies. She actually said that six month old babies were cute and smiled a lot, that they liked to play with you and started to sleep better. Nope, not my son, he still liked to cry all day and all night, unless I was walking him around in his pram.
When he was seventeen months old his sister was born and boy was I in for a surprise. This baby slept, I didn't have to hold her all the time I could lie her down in her moses basket and leave her to gurgle. When she was full from her feed she'd drift off to sleep with no problem and not wake up for hours. Perhaps something was wrong with her?
As they grew it became obvious that they had two very different personalities. It was because one was a boy and one a girl, wasn't it? My son was so naughty, all the time, and he never listened.
We had problems at school. he would sit under the table, refuse to go back into school after break time, not listen to the teacher or parrot what she was saying, refuse to write, refuse to read, refuse to eat his lunch, refuse to use the toilet. He was a very naughty boy!
His teacher gave me the number of a child psychologist. How dare she assume something was wrong with my son just because he was naughty. I just had to try harder, make sure he was disciplined more, I know I was soft on him, but his dad was really tough. I hated it when he played up and his dad was around.
His dad left us when he was nine. It was ok, we could manage.
The school asked me to take him to the GP as they thought he might have ADHD. Pah, they thought every kid had ADHD. My son could sit in front of his N64 for hours on end, he had perfect attention when it was needed.
I took him to the GP who asked lots of questions while my son climbed on the back of my chair like he was climbing Everest and pulled my hair like it was a rope. The GP decided that I wasn't coping very well with my husband leaving and prescribed for me anti-depressants. All the way home my son chanted "you are the crazy one, not me!"
He started secondary school, it didn't go well. His best friend no longer wanted to be his best friend and he didn't want to speak to anyone else, even the teachers. They put him in the Special Needs class which made him worse.
When he was twelve we went to see the psychologist. She asked a millions questions while my son sat eating his trainer.
He was diagnosed with Aspergers Syndrome.
Things got worse at school, not better. Inclusion was heard of then, but their ideas where ridiculous. My son was clever, but because he now had a diagnosis he was put in a class where he was learning the same stuff that six year olds would learn. He objected. I objected. I took him out of school.
He went to a school for kids that didn't fit into any other school. He was supposed to have been there for six months while they integrated him into a regular school. He was there for three and a half years. Then he went to a fantastic special collage which really didn't stretch him academically but gave him the opportunity to try so many new things like glass blowing, basket weaving, engraving and astronomy. It was somewhere for him to be while I tried to figure out what we were going to do next.
He decided himself and went and did an accountancy degree. I'm not sure that he will ever work in accountancy but at least he proved something to himself if no-one else.
And that is the story of my first born son.
I could go into more detail, but as he is an adult now I will respect his privacy. The main reason I wanted to share his story is because of where I am now with Lucy. She is about to go back to school full time. Next year she will going to secondary school. I have the difficult decision to make of what school she will go to. I know that things have probably changed since my son started secondary school fifteen years ago, but have they changed enough? It's something on my mind a lot at the moment and I'm sure I'll be writing a lot more about it while I figure it all out.
Wednesday, 7 January 2015
Happy New Year!
Lucy went back to school today.
The morning started like any other morning, then when it was time to get dressed I think she thought about feigning some kind of illness, but changed her mind and just confessed that she felt really nervous. I gave her an encouraging chat and she was ok again. No problems going into school, and one very happy little girl when I picked her up at lunch time. I think she's going to be just fine.
We seem to be having an issue with her feet though. She keeps getting blisters, which don't get any better. She had one just before Christmas and I had to take her to the Doctor for some anti-biotics because it became really infected. Then she had one on her toe that bled so much it turned the entire foot of her white sock red, within minutes. They take forever to heal, and often once healed just break up again. I've brought her some expensive shoes which have been properly fitted, so hopefully that will help. Although today, after just one day in her new shoes, she has another new blister.
The morning started like any other morning, then when it was time to get dressed I think she thought about feigning some kind of illness, but changed her mind and just confessed that she felt really nervous. I gave her an encouraging chat and she was ok again. No problems going into school, and one very happy little girl when I picked her up at lunch time. I think she's going to be just fine.
We seem to be having an issue with her feet though. She keeps getting blisters, which don't get any better. She had one just before Christmas and I had to take her to the Doctor for some anti-biotics because it became really infected. Then she had one on her toe that bled so much it turned the entire foot of her white sock red, within minutes. They take forever to heal, and often once healed just break up again. I've brought her some expensive shoes which have been properly fitted, so hopefully that will help. Although today, after just one day in her new shoes, she has another new blister.
Another problem is one we don't really talk about much but I think it's time to try and get it sorted again.
When Lucy was a baby she suffered terribly with constipation. This was an ongoing problem throughout her early years and we tried medicating her on the GPs advice. Nothing really worked though so I decided to make sure her diet was healthy and keep giving her plenty of fluids and hope for the best.
When she was four we were having trouble toilet training her. She had already started nursery and been suspended until she could use the toilet on her own. We finally managed it with her wee, but the poops were another deal altogether.
At six she was assessed for autism and this involved lots of tests and analysing. The psychologist thought that it was probably our parenting skills which were lacking and gave us potty training tips to try with her. The GP gave her more medication for constipation.
At nine we are convinced that this is not a normal problem. She is still incontinent. In fact, she has never actually made it to the toilet.
It's not just constipation, although she does still get constipated at times.
It's not our parenting skills. I have five children, two younger than Lucy, and I've not had a problem like this with any other child.
It could be psychological, it could be physiological.
We don't know, but we do need to know. Lucy is getting older and we cannot risk her soiling herself at school, they would never let her live it down.
We have managed at school so far because when she was much younger it was understandable that a child might have the occasional accident. When she was seven, she managed a whole year of full time school with only one accident. The teacher sent her home believing she was poorly.
When she was eight, she was only at school for a short time, and was attending hospital twice a week, so she managed without an accident.
She is nine now and due to go back to full time school. I cannot see her getting by without soiling herself.
When she does soil herself she doesn't seem to have any idea how it has happened. She swears that she did not feel it. She gets very upset. We get very upset. I get very fed up of cleaning her up, it's much worse than changing a baby's nappy.
So on Friday I am going to speak to the GP again. I want to know if there is something physically wrong with her and if so, if it can be fixed. If it is psychological then I will ask for help. I'm so hoping that something can be done for her.
Sunday, 26 October 2014
Back To School
At the moment it is half term, but after the holiday Lucy will be going back to school!
This is big, she's not been to school now for eleven months. Even then she'd only been at her new school for eight weeks. She has been home tutored by a qualified teacher (who is absolutely lovely) since February of this year.
We deliberated for a long while about sending her back to school. We considered changing schools, I even tried a couple of special needs schools to see if they would take her, but she was turned down. Academically she's not too bad. She can keep up with her peers in most subjects. It's her behavioral and physical difficulties which are a problem.
I had even considered moving her to a different school. Her current one is not the best, they have a lot of troublesome pupils, and the school is a fair distance to walk. However, they are trying to improve the school and I have already seen it change for the better in the last year while Lucy's siblings have been attending. Also, we now have a car, and although I prefer to walk to school at least it means we can use the car on difficult days, which probably means every day where Lucy is concerned.
The school are being really good. She only has three days to attend in the first week and I will be picking her up at lunchtime. She will then continue to attend every morning until she feels able to stay for school dinner. Then, only when she is ready, she will go back full time. They are arranging all the extra support she will need while in school, so fingers crossed that will all be in place quickly after her return.
Lucy hasn't shown much concern over returning although that may change nearer the time. Her sister is really excited that they will be at school together again. Now that her sister has moved up into Key Stage 2 they will be sharing the same playground at playtime and lunchtime too. They are really close so hopefully this will help. I can't believe I even considered splitting them up into different schools.
I still have lots of concerns but I believe that school is the best place for her. She currently has no friends and all and only ever plays with her sister. Maybe that will change when she goes back to school. I live in hope.
Now, I have the task of finding school uniform for her.
This is big, she's not been to school now for eleven months. Even then she'd only been at her new school for eight weeks. She has been home tutored by a qualified teacher (who is absolutely lovely) since February of this year.
We deliberated for a long while about sending her back to school. We considered changing schools, I even tried a couple of special needs schools to see if they would take her, but she was turned down. Academically she's not too bad. She can keep up with her peers in most subjects. It's her behavioral and physical difficulties which are a problem.
I had even considered moving her to a different school. Her current one is not the best, they have a lot of troublesome pupils, and the school is a fair distance to walk. However, they are trying to improve the school and I have already seen it change for the better in the last year while Lucy's siblings have been attending. Also, we now have a car, and although I prefer to walk to school at least it means we can use the car on difficult days, which probably means every day where Lucy is concerned.
The school are being really good. She only has three days to attend in the first week and I will be picking her up at lunchtime. She will then continue to attend every morning until she feels able to stay for school dinner. Then, only when she is ready, she will go back full time. They are arranging all the extra support she will need while in school, so fingers crossed that will all be in place quickly after her return.
Lucy hasn't shown much concern over returning although that may change nearer the time. Her sister is really excited that they will be at school together again. Now that her sister has moved up into Key Stage 2 they will be sharing the same playground at playtime and lunchtime too. They are really close so hopefully this will help. I can't believe I even considered splitting them up into different schools.
I still have lots of concerns but I believe that school is the best place for her. She currently has no friends and all and only ever plays with her sister. Maybe that will change when she goes back to school. I live in hope.
Now, I have the task of finding school uniform for her.
Wednesday, 26 February 2014
12 weeks, but still one more to go!
Well Lucy reached the 12 week mark of halo wearing but she's not having it taken off until next Monday. The good news is, this is definite, she had the first theatre spot booked for Monday morning.
Apparently, taking off the halo is not as bad as putting it on, phew. However, it is a long and uncomfortable process and in the case of children they prefer to do under a general anaesthetic. Lucy is fine with this, she doesn't like having a general anaesthetic, but who does? She is happy, however, that she will wake up without the halo. We are all really looking forward to it coming off. I'm looking forward to a cuddle with my girl.
We've just finished a week of half term here. This means Lucy has had her brother and sister around to keep her company. We tried to get out of the house and do some fun stuff, but we were limited. First up was a tript to the cinema on Saturday morning. We were there for the first showing at 10am and there were only three other families in the theatre. We watched Monsters University and all really enjoyed it. I wanted to go home for lunch, I do feel uncomfortable eating out with Lucy. Her dad says I'm being stupid, but in reality it can't be nice if you have to sit and eat your food opposite a child with a halo screwed into her skull, can it? I just remember my feelings when I first saw her in it, I felt sick. We can't forget that we are used to seeing it and it doesn't bother us anymore, for others it's more distressing.
I didn't win my argument and we went to Mc Donalds. We did, however, manage to find a quiet table right at the back of the restaurant. Yesterday we all had lunch in the hospital restaurant, I felt much more comfortable there!
Then on Tuesday we went to Toys R Us. This is a trip I've been promising the kids for a long time. They have been missing out on sweets and treats and saving up the money for a special treat. They managed to save £25 so I made it up to £45 so they could have £15 each. I was a little worried because there is so much in Toys R Us, and such a lot of expensive stuff. I really thought I'd have trouble on my hands as they rushed around the shop wanting everything in sight. It wasn't like that though, they were really good. The girls both wanted My Little Pony toys and Lucy really wanted the wedding castle. It came with two ponies, so I suggested that I bought it between them as it was £30. They agreed and were really happy with the idea.
We had to get to the shops by bus and again we had lots of stares, but also plenty of questions. I really prefer it when people ask what's wrong with her instead of just staring. Of course, after three months it's getting a little tiring explaining it over and over, but I'm still glad that we've been asked.
We didn't get to go out again. Lucy does find it really tiring, and we end up having very disturbed nights as her body catches up with the exercise she has taken. Thank heavens for Junior Ibuprofen and wheat bags, it's the best way to stop her pain.
She's had a lot of pain in her neck too which has been very worrying. We even had an impromptu visit to the hospital at one point when her screw came loose and I found blood in her hair. It was ok though, soon sorted. The pain seems to have eased in the last week though, so fingers crossed everything will be ok when the halo is taken off.
Just one more week to go...YAY!!
Apparently, taking off the halo is not as bad as putting it on, phew. However, it is a long and uncomfortable process and in the case of children they prefer to do under a general anaesthetic. Lucy is fine with this, she doesn't like having a general anaesthetic, but who does? She is happy, however, that she will wake up without the halo. We are all really looking forward to it coming off. I'm looking forward to a cuddle with my girl.
We've just finished a week of half term here. This means Lucy has had her brother and sister around to keep her company. We tried to get out of the house and do some fun stuff, but we were limited. First up was a tript to the cinema on Saturday morning. We were there for the first showing at 10am and there were only three other families in the theatre. We watched Monsters University and all really enjoyed it. I wanted to go home for lunch, I do feel uncomfortable eating out with Lucy. Her dad says I'm being stupid, but in reality it can't be nice if you have to sit and eat your food opposite a child with a halo screwed into her skull, can it? I just remember my feelings when I first saw her in it, I felt sick. We can't forget that we are used to seeing it and it doesn't bother us anymore, for others it's more distressing.
I didn't win my argument and we went to Mc Donalds. We did, however, manage to find a quiet table right at the back of the restaurant. Yesterday we all had lunch in the hospital restaurant, I felt much more comfortable there!
Then on Tuesday we went to Toys R Us. This is a trip I've been promising the kids for a long time. They have been missing out on sweets and treats and saving up the money for a special treat. They managed to save £25 so I made it up to £45 so they could have £15 each. I was a little worried because there is so much in Toys R Us, and such a lot of expensive stuff. I really thought I'd have trouble on my hands as they rushed around the shop wanting everything in sight. It wasn't like that though, they were really good. The girls both wanted My Little Pony toys and Lucy really wanted the wedding castle. It came with two ponies, so I suggested that I bought it between them as it was £30. They agreed and were really happy with the idea.
We had to get to the shops by bus and again we had lots of stares, but also plenty of questions. I really prefer it when people ask what's wrong with her instead of just staring. Of course, after three months it's getting a little tiring explaining it over and over, but I'm still glad that we've been asked.
We didn't get to go out again. Lucy does find it really tiring, and we end up having very disturbed nights as her body catches up with the exercise she has taken. Thank heavens for Junior Ibuprofen and wheat bags, it's the best way to stop her pain.
She's had a lot of pain in her neck too which has been very worrying. We even had an impromptu visit to the hospital at one point when her screw came loose and I found blood in her hair. It was ok though, soon sorted. The pain seems to have eased in the last week though, so fingers crossed everything will be ok when the halo is taken off.
Just one more week to go...YAY!!
Thursday, 2 January 2014
Lucy's History
I'd waited an awful long time for my little girl, it felt like a miracle when I finally fell pregnant and stayed pregnant. She then came early, but only a couple of weeks so was classed as full term. I had her at 8pm but wasn't taken to the ward until around midnight. I didn't sleep that night, I just kept looking at my little girl, not quite believing she was here.
She cried a lot as a baby. We believed she had colic, each evening she would scream relentlessly for at least two hours solid. Then at three months old she calmed down. She didn't sleep through the night though. She still doesn't at eight years old.
We had trouble toilet training her. She just didn't get it, despite all our efforts, and we tried everything. She would simply scream the second we put her on the potty or the toilet. She started nursery at 3 years and 3 weeks old and I thought I could get away with putting her in pull-ups, but they said no. We had to keep her home until she was trained. Eventually, we managed to get her to sit on the toilet. She screamed, but then she pee'd, and that was it. After the first 'hit' she wanted to do it again and again. The number two's were a different story though. At eight years old she still doesn't go on the toilet. I've mentioned it to several doctors but they have not believed it to be a medical problem. I've tried everything, believe me, I could write a book on all the methods we've tried, but I am more and more sure that she's just not feeling it. She does not feel the need to go, and does not feel it come out, I'm sure of it. She gets so upset when she's messed herself. We've stopped being angry, but we'll never be resigned. We will keep on going, and I will keep on asking doctors. Maybe one day she will feel it differently, or maybe the right doctor will tell us why.
For as long as I can remember, and as long as Lucy has been able to tell me, she has been getting pain in her knees. Mostly at night, but sometimes during the day too. The pain is bad and requires me to massage her knees as well as a dose of pain relief. We also use wheat bags warmed up on her knees, but these are not always practical as they fall off while she's asleep. I've told the doctors and she did have x-rays. They found nothing but did point out that her joints were hypermobile and this could be a cause of the pain. She sometimes has trouble walkings, even the walk to school is too much for her some days and we either have to walk very slow, or she has to stop and rest. Some days she is fine and can walk and run just like any other child.
Lucy has also suffered from really bad headaches, at one time they were getting quite regular so the GP gave us beta blockers to take on a daily basis for a few months to break the cycle. They did seem to work for a while, but she still gets headaches.
When she was at nursery her teacher said she had problems playing and working with the other children. She thought that maybe she showed signs of autism. At three years old I thought that maybe she was just immature but I'd been here before with her older brother. I'd buried my head in the sand and convinced that he would grow out of it. He never did, and I knew Lucy wouldn't either. I did leave it for a couple of years though. I wanted to be sure that there was something wrong before I sought a diagnosis.
At six years old Lucy was diagnosed with high functioning autism. Her teacher at the time was brilliant, she researched everything she could to make Lucy's life easier at school. Lucy had extra help at school from the autism team. She had occupational therapy, speech therapy and physio therapy. She was coming along brilliantly.
Then this summer things went pear shaped. She hurt her neck, we moved house and school and now all the help she was getting has to be set up all over again. Of course with her neck it means she has lost a lot of time at school. I hope that this year we can remedy that and get her back on track. We only have a couple a years before she has to start secondary school and the real trouble begins. I can't afford to let her slip now.
My plans for this year are:
She cried a lot as a baby. We believed she had colic, each evening she would scream relentlessly for at least two hours solid. Then at three months old she calmed down. She didn't sleep through the night though. She still doesn't at eight years old.
We had trouble toilet training her. She just didn't get it, despite all our efforts, and we tried everything. She would simply scream the second we put her on the potty or the toilet. She started nursery at 3 years and 3 weeks old and I thought I could get away with putting her in pull-ups, but they said no. We had to keep her home until she was trained. Eventually, we managed to get her to sit on the toilet. She screamed, but then she pee'd, and that was it. After the first 'hit' she wanted to do it again and again. The number two's were a different story though. At eight years old she still doesn't go on the toilet. I've mentioned it to several doctors but they have not believed it to be a medical problem. I've tried everything, believe me, I could write a book on all the methods we've tried, but I am more and more sure that she's just not feeling it. She does not feel the need to go, and does not feel it come out, I'm sure of it. She gets so upset when she's messed herself. We've stopped being angry, but we'll never be resigned. We will keep on going, and I will keep on asking doctors. Maybe one day she will feel it differently, or maybe the right doctor will tell us why.
For as long as I can remember, and as long as Lucy has been able to tell me, she has been getting pain in her knees. Mostly at night, but sometimes during the day too. The pain is bad and requires me to massage her knees as well as a dose of pain relief. We also use wheat bags warmed up on her knees, but these are not always practical as they fall off while she's asleep. I've told the doctors and she did have x-rays. They found nothing but did point out that her joints were hypermobile and this could be a cause of the pain. She sometimes has trouble walkings, even the walk to school is too much for her some days and we either have to walk very slow, or she has to stop and rest. Some days she is fine and can walk and run just like any other child.
Lucy has also suffered from really bad headaches, at one time they were getting quite regular so the GP gave us beta blockers to take on a daily basis for a few months to break the cycle. They did seem to work for a while, but she still gets headaches.
When she was at nursery her teacher said she had problems playing and working with the other children. She thought that maybe she showed signs of autism. At three years old I thought that maybe she was just immature but I'd been here before with her older brother. I'd buried my head in the sand and convinced that he would grow out of it. He never did, and I knew Lucy wouldn't either. I did leave it for a couple of years though. I wanted to be sure that there was something wrong before I sought a diagnosis.
At six years old Lucy was diagnosed with high functioning autism. Her teacher at the time was brilliant, she researched everything she could to make Lucy's life easier at school. Lucy had extra help at school from the autism team. She had occupational therapy, speech therapy and physio therapy. She was coming along brilliantly.
Then this summer things went pear shaped. She hurt her neck, we moved house and school and now all the help she was getting has to be set up all over again. Of course with her neck it means she has lost a lot of time at school. I hope that this year we can remedy that and get her back on track. We only have a couple a years before she has to start secondary school and the real trouble begins. I can't afford to let her slip now.
My plans for this year are:
- get her a proper diagnosis for her condition so that if anything like this happens again the doctors will know what they are dealing with.
- liaise with her new school so she can have her support system in place again.
- work with her to catch up with the other children on her actual school work
Subscribe to:
Posts (Atom)
-
Last year we had a letter from the school about a residential trip that is taking place in February. I threw the letter away, my first inst...
-
I've realised that I've focused a lot on Lucy's problems in this blog and I have kind of neglected talking about her autism. Thi... -
We had Lucy's hospital appointment on Monday. She was a bit disorientated going to different part of the hospital, when we got there she...