Monday, 9 January 2017

The School Residential Trip

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.


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.


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



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.


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!)

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.


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!