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

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 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.