A Catch Up

Sorry I've not updated for so long. I really must keep up with this as it has been a great help in the past for me to have every logged in one place that can easily be found.

I have a shoebox full of letter, hospital appointments, assessments, diagnosis' everything in one place. But sorting through it can be a pain, and it's not a very detailed review of everything.

There is so much that has happened since last summer when I made my last post.

I've recorded some things on my main blog www.raisiebay.com  so I can point to some posts I've made there.

Lucy is getting on well at school but the only thing holding her back is her attendance. It's not awful, but it's not good either. It can't be helped, she has a lot of health issues. Here is a post I wrote about her being in Mainstream School.

Here is a post about her Elhers Danlos Syndrome for Rare diseases Day. She had genetic testing done last year which showed that she didn't have any genetic disease that would affect her heart. We have yet to speak to anyone about the results but it does seem to rule out Loey Dietz Syndrome but she could still have Marfan Sydrome.

She had a visit to her neuro consultant about her neck and without even examining her he said she looked fine and would see her next year. I guess he's only there in case something does go wrong, and everything does seem to be going well.

She has developed a clicky jaw though, sometimes it locks in place. The Dr said he could feel some inflammation in the joint and she has been referred to a maxillo facial consultant as she may have Temporo mandibular joint issues. My eldest daughter had the same at the same age, isn't that weird? My eldest went to the hospital every month for a year but they never really did anything that helped her and she still has issues now!

We are still having bowel issues, I don't want to go into too much detail but at least we have a better understanding of what is going on, and there is help available, it's just taking a very long time to get it sorted.

This week she had a treat at school for best behaviour and won an afternoon of Harry Potter film and pizza, how lovely is that!

I'll be writing more frequently from now on, not only do I wish to record Lucy's progress with her TMJ, but The Little Man is now having issues and I'd like to record what is happening to see if we can get him some help. More about that later.

Thanks for reading x

Backtracking!

In my last post I talked about Lucy going on a residential trip with the school and how I'd given a lot of thought and consideration in saying no to her going.

Well, things didn't quite turn out that way.

The week of the trip we were told that she could go in the daytime only and come back each day at the end of school. Of course Lucy really wanted to go even though it still meant she couldn't do most of the activities on offer. We decided to give it a go.

She wasn't alone, the school mini bus took 7 children on the first morning and back again. Lucy loved it, she had a really great day. When I asked her what she'd been up to it was mostly watching the other kids climbing and on the zip wall. She'd also felt a bit sad at coming home which was a big surprise. 

She went again the next day and managed to join in with a go kart race so she was really excited.

The next day she had been told she could stay over for the last night and party and so wanted to. How could I not let her. I was still worried how she would cope but I let her stay and packed her an overnight bag. 

She came back the next day tired, miserable and in pain. It had all been a bit too much for her. They'd gone for  a long walk and her knees had been hurting all night. She had not enjoyed the party at all, it was too loud and everyone was too mad. And she'd not got much sleep because the boys had been too noisy and everyone had stayed up way too late. She was not a happy bunny at all. I just hope it hasn't put her off going away again if the opportunity arrives.

The good news is that she did it! and for that I'm really proud of her.

Today is the first Day of Autism Awareness Month so I will hopefully posting a little more this month.

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.

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

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.

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.

When Your Carer Gets Sick!

Both myself and my partner care for Lucy, she is definitely a two man job some days.
This year we have had to cope with more than our fare share of problems.
Lucy's Dad lost his Dad on December 30th. It was a huge shock and obviously the whole family is grieving.
Then on January 1st, I went into hospital with pins and needles which were so severe they made me feel numb. By teatime I was paralysed from the waist down and both my arms by a spinal inflammation and a rare condition known as Transverse Myelitis. I am recovering now, with most of my strength back but still no sensation, particularly in my legs which means I am not walking unaided.
So poor Dad has had to cope alone with all family issues, looking after Lucy and looking after me too! All this on top of his grief for his Dad and having to arrange the funeral.
But this is a blog about Lucy and I've observed how this has affected her.


She wouldn't visit me in hospital, having spent so much time in hospital herself she avoids it when she can. Dad did manage to bring her once (I was confined for twelve days in total) and she sat with her coat on backwards and the hood over her face. She cuddled me like this too, saying that she didn't like me smelling like hospital. Her main sensory disorder is smell, she is very sensitive to it and there are some smells she really can't stand. I think mint is the worst. She wouldn't stay very long so it was lucky that her uncle (And Godfather) was present and he took her out to the shop while Dad and her siblings stayed a little longer. This was her autism and how she deals with things.

The lady in the opposite bed to me on the ward had an autistic nephew who was higher on the spectrum than Lucy and non-verbal. He was happy to be on the ward though and played happily with the toy his mother had brought with her to occupy him. Then she took him to the toilet which was past my bed and he spotted some chocolate on my table. He made a grab for it and when his mum stopped him he went into complete meltdown. His mum had to take him off the ward until she could calm him down. I would have happily given him my chocolate but it wouldn't have taught him anything. Even non -verbal autistic children need to learn right from wrong. It was obvious his mother agreed.

Comparing the two children, Lucy and this little boy, you could see very different aspects of their autism. Lucy does have similar meltdowns, and has done over very simple things, but she couldn't cope with being in the hospital, Whereas the little boy was coping quite well until the chocolate incident.

I think Lucy coped at home very well without me being there. That comment both hurts me a little but also makes me feel confident that she'd be okay if anything serious did happen to me so it's also a relief. Since I came home she's been quite happy continuing in her routine with her Dad and hasn't missed my input at all. In fact she barely takes any notice of me, not like the other two who have to come over for a kiss and cuddle when they get home from school. Lucy is more interested in her PC.

I have trouble getting up the stairs so I've not been taking the children to bed and the two youngest have complained a little. Not Lucy though, she hasn't even mentioned it. The first night I was home and had been helped to bed by her Dad, Lucy woke up like she normally does and came to me for help to re-settle her. I couldn't get out of bed so I had to call Dad to help. Lucy hasn't bothered me since.

So, although things have changed it's not affected Lucy as her routine is still the same. It hasn't bothered her that it's not me doing things for her so long as it's done.

I believe she is coping a lot better than I am!

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. 

Full Time School

It's Friday and Lucy has completed a week of full time school for the first time since November 2013. Actually it's probably longer because she was having regular hospital appointments, so the last time she had a full uninterrupted week of full time school was July 2013.

It hasn't been an easy week, but it could have been worse. She woke up every morning not wanting to go. We would have lots of tears and begging. It didn't help that she had developed a cold this week too. She wasn't  poorly enough to warrant a sick day but she still wasn't feeling well. It was hard but I had to be tough.

Monday wasn't too bad. She asked that Daddy would be there to take her to school as well. After her initial worries and tears she calmed down and went in bravely. She came home all smiles. We had a few more tears at bedtime but over all it wasn't a bad day.

Tuesday was not so good. There were many more tears and a complete refusal to get dressed. She went into complete meltdown and we had to give her half an hour to calm down. We don't really have half an hour to spare and we were late for school.

Wednesday we tried without Daddy. We had a meltdown as soon as she got up, mostly uncontrollable sobbing. Once she calmed down she was fine and even dressed herself and helped me make her lunch. Today we were early for school.

Thursday was the best day of the week. She was a little upset when I went to wake her but soon calmed down and we had a peaceful morning.

Friday was also going well but when I couldn't find her sister's shoes Lucy jumped on the computer while I was looking for them. I told her there was not time and we had to go to school right now and she went into meltdown resulting in us being later than we'd been all week.

Her teacher said she is doing well at school, she has had a few hiccups but nothing too bad. It's nice to see her smiling when we pick her up.

She is really enjoying her lunch. She didn't want school dinners so I am making up a lunch box for her. She chose the box herself and we made a list of the things she would like in it. We are keeping it really healthy and changing the food every day. She loves seeing what's in her lunchbox each day.

I have really missed her, I have really got used to having her at home so much. I've found this week really hard, I hate to see her upset and unable to control her emotions. I just hope that things get easier.

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.

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.

A Night At the Theatre

Last night I too the girls to see a live performance of Jaqueline Wilson's Hetty Feather.
We've been to live shows before and the girls have loved it. So far we've seen The Gruffalo's Child, Room on the Broom, What the Ladybird Heard and Andy and Mike's Tick Tock Time Machine. Lucy has coped really well, she doesn't mind being around lots of people, she doesn't mind loud noises for a limited amount of time, she enjoys the shows and interacts well. The only time I have had problems with her it wasn't a live show but a 4D movie...which included smells..that's her weak point, she doesn't like strong smells.

So we went along to watch Hetty Feather just like a normal family. I was a little worried because we were going to the evening show which finished past the girls bedtime. Leila gets tired and Lucy doesn't like her bedtime routine changed. The show was also just over two hours long, which seemed a long time to expect Lucy to sit and watch. She can watch a whole movie, but just about and most movies are only about an hour and a half. The extra forty five minutes of this show were going to make a difference.

Well, she didn't do too badly. She really enjoyed the show and was completely attentive from beginning to end.

She breaks the mould of what people expect from autistic children when it comes to empathy because she cried at all the sad parts. Well, I say cried, she sobbed, I had to sit hugging her as she cried her little heart out, I had to keep reassuring her that it would be a happy ending. It was a happy ending, and she cried at that too. I have seen her cry at things before, but it's usually involved animals. She did cry with happiness at one of the High School Musical films the first time she watched it. So, I'd say she was empathetic, very much so. Even if she has little control over how she expresses herself, at least she is expressing the correct emotions at the right times.

When the show stopped for the interval she knew it was past bedtime and insisted that we went home right then. I told her that it would be a shame to miss the second half and we wouldn't know what happened. She didn't seem to care. So I told her that if we went home right then, we would still be late for bed, so why not watch the rest of the show anyway. She wasn't happy with that but did see my point.
Finally, I persuaded her to stay if I bought her an ice-cream. This made her happy. Just like a normal child.

As soon as the second half started she was totally engrossed again.

They were both really tired but completely fired up when the show finished. As I said before, it had been a happy ending and Lucy had cried, probably a little too much, but she said she was really happy. Then we got up to leave and before we had left the auditorium she started talking about Pokemon. It was like we had not been to see the show, she didn't want to speak about it. All the way home she talked non-stop about Pokemon, Mario and Sonic the Hedgehog. So much so that my head spinned. Leila was trying to talk about the show and what she had enjoyed, but she wouldn't listen and didn't want to take part in the conversation. In fact, even when I spoke to Leila, Lucy just carried on talking about Pokemon et al. On the way home Leila sat with my niece who had come with us and ended up falling asleep on her after they had chatted about their favourite bits of the show. Normal.
Lucy talked all the way home, not mentioning the show at all. It was as if she couldn't think about it because it had affected her so much, so she talked about her favourite things instead. Not so normal.

At home we still had to go throught the normal bedtime routines even though we were nearly three hours late for bed. Eventually, she stopped talking about Pokemon, Mario and Sonic and went to sleep.

Today she has talked about the show, she remembers it all and told us her favourite bits. One part was when Hetty gets a spanking. We don't do physical punishment in this house so you'd think she'd be shocked, but the scene was performed comically and the very last spank was performed in really slow motion, which was quite funny to see being done live. This scene has been re-enacted by Lucy over and over and over and probably will be for days. (When I say re-enacted, there is no spanking involved, she just copies the faces and movements of the actors and they were when the last spank was performed.)

To us, she is normal, quirky maybe, but she's our girl and she's always been the same. The routines, the repetiveness, the randomness of her conversation topics, the incessent talking about what she wants to talk about even when no-one is listening to her, the lack of control over her emotions, to us, all normal, all Lucy.

She managed to sit through a two hour plus show and pay attention the whole time, she showed emotion at the right times, she stayed up past bedtime (although, not completely without complaint) and she enjoyed the evening. All normal, all typical for a child of her age.

People have pre-conceptions about autism, they often think that children can't sit still, always mis-behave, can't control themselves and so on. In fact, on the outside, a lot of autistic children can look just like other children, and behave just like other children. No-one on the bus home would have thought of Lucy as strange just because she was talking about Pokemon, they didn't know she'd be talking about them incessently for at least an hour, they didn't know that we'd just been to see a fantastic show and any other child would be wanting to talk about that, they didn't know that a lot of what she was saying would be repeated over and over and over. To them she was a normal, excited child on their way home to bed.

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:

• 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 

Lucy's Story

In August 2013 my little girl, Lucy, woke up with a bad neck. A visit to the GP didn't really help, he thought maybe tonsillitis but she wouldn't open her mouth far enough for him to see inside. I wasn't happy and took her to A&E. We were told she had torticollis (bent neck) and that it would likely correct itself within 48 hours. It didn't and my little girl was finding it difficult to eat or drink. A CT scan was done one her brain, but that came back ok. A couple of days later a CT scan of her neck revealed a rotated bone at the top of her spine. In medical terms, a subluxation of the atlanto occipital joint.

Now, I tried to Google this term and all that came up were medical records, difficult to understand and some quite scary. I figured that the condition might be quite rare, and apparently it is, but it does happen and it's quite scary when you can't find anything that can offer advice or help. This is why I have set up this blog. Hopefully, the next time someone searches for subluxation of the atlanto occipital joint, or even atlanto axial joint, or even C1, then maybe they will find some support in my words and the story of my little girl.

Another reason I have set up this blog is to raise awareness of Hypermobility Syndrome, because I am certain that this is why my daughter had the subluxation. I'm still travelling this journey so I want to share my story as I go and maybe help or inform others of our experiences along the way.

Lucy was first diagnosed as hypermobile when she was six years old. She'd been having pain in her knees and I'd asked the GP to investigate. He sent her to the hospital for x-rays but nothing showed. They did point out that she was hypermobile. Shortly afterwards I was having her assessed for Autism as her teacher suspected that she might be on the spectrum. I did too, but I'd kept it to myself until it was noticeable by others. As part of her assessment she was seen by a physio therapist who diagnosed her as hypermobile. She was also diagnosed as high functioning autistic, but I'll talk more about that later.

Now, being hypermobile is quite common, most people know the condition as being double jointed. However, when the hypermobile joints cause you pain and discomfort then it's known as hypermobility syndrome. The assessment is based on the history of the patient and their score on two charts known as the Beighton score chart and the Brighton Criteria 

Lucy scores 9 on the Beighton score chart. She's not been medically assessed yet on the Brighton Criteria, but seeing as she currently has a subluxation of a joint and has suffered chronic pain for years now, then it's likely that she would get a diagnosis of Hypermobility Syndrome. 

When it was first discovered that Lucy had a subluxations of cervical joint the consultant was convinced that she had had a fall. I know that she didn't (not even at school because it happened during the holidays). She woke up with condition which is very unusual. It's also scary because it means it could happen again.

In my next post I will write about what happened when Lucy was admitted to hospital and how her treatment has progressed.