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!

 

Friday, 1 July 2016

Lucy's Neck and Other Problems

I'm feeling a little concerned about Lucy's neck. While brushing her hair last night she said her neck was sore. On observation I noticed that there was a lump at the base of her scar. It has always been raised there but now it seems more so and she said it was painful when I touched it.


It's hard to see in this photo, but I took it so that I could keep an eye on it and compare it. If it gets any worse I will push to see her consultant sooner. If the soreness doesn't stop I will take her to the GP and see where we go from there.

She had a CT scan on her neck just a few weeks ago, so if there was something wrong surely they would have noticed and contacted me. Sadly, I know this is not always the case, she's had scans before and the consultant has not even looked at them until her appointment. She is seeing the consultant in August so we will know for definite then.

In other news she is being seen in the cardiology apartment this month for a check on her heart. This was requested by the genetics dr we saw in February as she thinks Lucy might have Marfans Syndrome or another form of Elhers Danlos Syndrome rather than hypermobility. Lucy has already had her eyes checked and they came up clear, so maybe her heart will too. Fingers crossed. 

She is also having trouble with her mobility again. We noticed when we were on holiday that she wasn't getting very far without hurting and it seems to be getting worse. She's complaining whenever they have to walk anywhere at school, for example they walk to the local public library which is about half a mile away. Even if we are doing something fun she will complain, it's becoming more regular.

Her gastric problems are not getting any better and she has had several accidents in school over the past few weeks. I was so hoping we could have had this sorted before September, but it doesn't seem so far away now. 

Finally, her sleeping pattern is really bad again and I reckon she's currently getting about five hours a night :( 

That girl is nothing but trouble  sometimes x

Tuesday, 7 June 2016

We've Been on Holiday!

Last week we took a break to Blackpool. I'm lucky that Lucy is a good traveller as we had to go by train, with a changeover on the way. I was in my wheelchair which added extra difficulty but we managed fairly well.

A few years ago while on a long train trip, Lucy managed to do her thing and soiled herself. I had to open her suitcase on the train and throw her soiled clothes away. I was concerned she was going to do this again so we had a little chat beforehand and she promised she would do her best. Which is all I can hope for really. As an extra precaution I provided her with a pad.

She did it! In fact she stayed clean all holiday which sounds incredibly exciting (well it does for me) but in actual fact she was really constipated. So we had a week of tummy aches and bloatedness but no movement. I'm sure you'll be pleased to know that she got it all moving over the weekend when we were home! *sigh*

Apart from the poo issues, and the not feeling well, and the very snotty nose that got through two boxes of tissues, we had a good time away.

There was the incident where we were going out for the day and she didn't want to go. But the problem was that I'd explained how we were getting there, but not how we were getting back. As soon as she knew how we were getting back she was fine.

And there was the incident where she wanted to play in a pool on the beach and was asking to remove her socks and shoes. She kept asking and I kept replying 'don't take them off yet'. Her Dad was busy getting me out of the wheelchair and I wanted him to be with the kids when they went into the water. However, being Lucy she took me literally. I didn't want her to take her shoes and socks off, so she went into the pool with them on.

She did totally astound me in the swimming pool when she had the opportunity to go into a huge bubble on the water, it's called Water Walking. She loved it and got very competitive when it came to racing, I was really surprised, but also very happy. It was £4 well spent.

She also enjoyed the pottery painting that we did. She chose a dragon and painted it as a character from a game she plays, Undertales. She gave the dragon a lab coat and lab glasses.



She did not like the club, it was too noisy, too smelly, too loud, too dark, too much sensory input which drove her crazy. We only went once for a very short time and decided not to go again.

She loved the circus and the Sea Life Centre, she absolutely adores clowns and informed me " a lot of people are scared of clowns but I'm not." In the Sea Life Centre she looked at everything, read every notice and poster and made sure she completed the tasks required to get her passport stamped.

I think she really enjoyed the break, it's a shame she wasn't feeling so good, but on the whole it didn't stop her from having fun. She really is a little Star sometimes.