Tonsilitis, sex changes and liver failure

So it's been quite the week in our house, I'd no sooner got Freya back to school after Easter than Lucas started being sick, after a few days he began complaining of a sore throat and it wasn't until the screaming started that I began to consider he may have tonsillitis. Lucas being Lucas he wouldn't let me look in his throat so I took him to the dr. Thinking I was doing the right thing I explained what the dr would need to check which of course included looking in his mouth and a tongue depressor and the possibility of some banana medicine. Of course he decided there was no way anyone was looking in his mouth and when she tried to use the tongue depressor to look at his tonsils he started gagging and clapped both hands over his mouth and that was that. She decided he probably did have it anyway due to his other symptoms and prescribed some antibiotics. I knew he wasn't going to take it because he will only take orange nurofen and nothing else so we started mixing it in with his drinks. By this time he was really poorly, he couldn't move, he had a temperature and he was just screaming and screaming about his throat and tummy hurting. He hadn't eaten for 4 days at this point and then he decided that drinking was too painful also, he wouldn't have ice cream or an ice lolly or anything including the orange nurofen. I ended up calling nhs direct because I thought if I can't even get any fluids in him we're going to have to take him to hospital as I couldn't bring his temperature down and he was getting weaker and weaker. One of my older kids had a febrile convulsion at 5 and it was the scariest thing ever and I was terrified Lucas would end up having one. The lady on the phone seemed unconcerned, she suggested I either just pin him down and force the medicine in?! or just let his body fix itself. He's surprisingly strong for a 5 year old and trying to force him to swallow something just resulted in  him vomiting and more screaming about his stomach, you'd think he'd have been too exhausted to fight but it's amazing where we find the strength when we think we're under attack! 
In the end he decided he would try a tiny bit of apple juice so we managed to get some antibiotics in him and he started to perk up.

Then one day last week my daughter told me she wanted a sex change, she is 18, she's always been quite manly, the way she dresses, her mannerisms and since she cut her hair at 16 (her dad forbid it until then?!) she looks like a boy and people that don't know her assume she is. She told me she was gay a few years ago and asked me several times as a child if she was meant to be a boy and I always just said no don't be silly, she's always been angry /aggressive and I know she hasn't felt she fitted in but she also has asd as do I and I know we have a more male way of thinking and I prefer jogging bottoms and big tops because they are more comfy. I have noticed she's been very embarrassed by her boobs since they arrived but again put that down to the fact most girls don't like them when they first get them but that was 5 years ago now. She is very funny about using the ladies toilets but I put that down to other peoples perception of her looking like a boy and people do stare at her. I have another daughter who is gay but she loves her body and doesn't hide it so my daughter can see that being gay doesn't mean your trans. She has been suicidal for over a year but has never told any therapist or me about how she felt. Now she's told me she's already been to the Dr to ask to see someone, she's changed her name and wants top surgery and hormones asap as she feels she's spent long enough in a body she despises,of course the Dr told her it would take several years to which she said she'd rather die. I guess my worries are what if she regrets it? What if she thinks this will make her happy and it doesn't? What if she's confusing feeling male with the autistic thinking and fancying girls? I can't say any of this to her. I've tried so hard to use her new name the last few days and refer to her as him but then he asked me to go and buy him some tampons because he finds it too humiliating, that totally screwed with my head, all the way up to Tesco I was thinking, I'm going to buy tampons for my son! I want to support my child 100% but I've got her dad on my case and what on earth am I going to tell my 80 year old mother who is a strict old fashioned Christian who couldn't accept her being gay?!

On the same day as this transgender revelation Mike went for the results of his recent blood test following on from the scan he had, it turns out he has signs of liver damage. This immediately seemed ridiculous, he has had maybe 2 alcoholic drinks in the 8 years I've known him, he eats no junk what so ever and exercises regularly. He went into panic mode, he says he read somewhere once that people with his condition are more likely to suffer liver problems and most don't live past 50. I have searched and searched the internet and can find no evidence to support this but that said most of the list of problems associated with the condition aren't even mentioned and one went so far as to say they wouldn't have any problems?! He has a letter from his dr at Guys hospital in London from years ago saying it would not get any worse but I found plenty of sources online saying it gets worse with age and he has definitely deteriorated since we've been together. So now he's got to have more tests done :( 

Exhausted.....

I'm exhausted,

I was half way through my shift at work on Friday when I suddenly realised I didn't have my car keys, I went into a panic, checking every pocket over and over. Finally I decided I must have left them in the car so I went out to check, I couldn't find the car. It took me a good five minutes of thinking oh my god how am I going to tell my husband the car has been stolen because I left the keys in it before I remembered he had driven me to work as he had to go back to the doctors.
One of my colleagues looked at me and said "Ella, you have way too much going on in your mind"
If only they knew the half of it, when people ask how things are they never really want to know and even when they know of some of your struggles it would take too long to list them all so you just give snippets of updates while thinking they don't really care or want to know.

Mike had been to the doctors earlier that day as he's been having terrible pain in his stomach and feeling very ill, he had a hernia diagnosed about 6 years ago and I've been nagging him to insist something is done about it for years. He saw two doctors who were both very concerned and told him he needed full blood works done and to come back to see the emergency doctor at 5pm. Much to my disgust the emergency doctor told him there was nothing they could do for him, threw some indigestion tablets at him and told him to go on his way!
I am fully aware how stretched the NHS is but if I can get a referral for a nasal drip which is annoying and disgusting but isn't causing me any pain then I'm damn sure my husband who already has a spinal condition that means he's in pain all day every day should be able to get help with something that can be fixed and is causing him to be unable to go about his daily life and on top of his disability is affecting his quality of living.
Of course this isn't going to be sorted unless I stick my oar in and go with him to the doctors and fight his case.
Problem not solved.

A few weeks ago I lost it because he "needed" me to email someone about a problem he's got with a property he owned with his ex wife, I don't really want to have any involvement with things regarding their marriage and I have so much on my plate already that I really felt he should have been able to sort this himself. He said I was being unsupportive and he has supported me through all my problems with the girls so I sat down and wrote the email to which I've had no reply.
Problem not solved.

My 18 year old daughter moved back in a month ago after a breakdown in relationship with her dad, she has lived with him for 6 years as we were unable to get along but he is now treating her the way he used to treat me and I didn't want her to have to go through that so I said she could come here and I would help her as best I can. She has been having suicidal thoughts and been unable to attend her catering course due to feeling unsafe around the knives in the kitchen.
She was diagnosed with Aspergers about 5 years ago and has always struggled to control her emotions and anger in particular but her dad and ex girlfriend told her not to take her medication because she would get addicted and they would make her feel worse!
Needless to say my husband is not well pleased about the addition of another of my children to the household with additional needs and went so far as to say if she was still here in a month he'd have left, they are both still here!
As you can imagine it has taken quite a lot of work to get her the help she needs, as she is now an adult and not under any team she needed to be seen at a&e by the psychiatric team which as it happened ended up happening when she went into one at college and said she was going to kill herself. However despite telling them she now lived with me they made all the referrals to the town her dad lives in because she was still registered at the doctors there. So we've so far had 3 referrals either rejected or passed on to the team where I live, she was given medication by the hospital but of course all this farting around about who is responsible just leaves her with no support at all.
Being here is very difficult for her and us, she has zero tolerance for noise, kids, joining in with family activities etc and responds inappropriately towards the children when they say or do things that annoy her, which is pretty much anything and everything. We don't have space for her so she has to sleep on the sofa and has nowhere to put her things or any personal space to escape to when it all gets too much, she's also very grumpy about being woken up at 7.30am when we have to get the kids ready for school.
She wants to live on her own but I have my reservations about that, she has not got good, if any safety awareness, she doesn't wash, change clothes unless I nag her, she is very shy but defensive and dresses and looks like a boy so she is quite a target for bullying. Her dad did not keep his house in a habitable manner and therefore she thinks it is fine to live like this. I am worried if she lived alone she would be even more isolated and depressed and would be unable to take care of herself. Unfortunately the options for young people are usually hostel accommodation which is over run with drug users and other people who are struggling to integrate into society, not an ideal environment for a vulnerable, impressionable young person.
So for now I am getting nowhere fast with a solution to this.

My 19 year old is my biggest headache, if there's a rule she'll repeatedly break it, if there's any effort at discussion she doesn't want to talk about it, if she's not benefitting from a situation she won't be involved with it. She was diagnosed with unstable emotional personality disorder a few years ago and has since gone out of her way to live up to the diagnosis. Personally I think she just has autism like the rest of us but because she said she could read other peoples emotions and understood her emotions they felt she wasn't on the spectrum.
I used to think I knew what other people were thinking or feeling too and I am very tuned into myself and what makes me tick, I'm a very emotionally turbulent person and I would say now that it is not that I can't recognise others emotions but that I am too unstable already to take them on as well, I feel them too much so I push people away and become angry and aggressive to get them to back off so I can breathe, my own thoughts and emotions are too much for my brain to handle, there really is no room for anyone else's, I'm not been mean or cold and it's not even that I don't care, despite the fact I say that all the time to get people to leave me alone, it's more that I can't allow myself to care because I'm already at breaking point dealing with myself.
Anyway she causes constant conflict between myself and my husband, from where I am it seems like they both spend all their time telling me tales about the others behaviour in an effort to turn me against the other. My husband thinks I am unaware of how rude and disrespectful she is because I do not react in the way he would expect, so he spends all day every day reminding me about what she does/says, how she can't even follow the rules when we let all rules go except two. Needless to say I am fully aware.
I have actually never had to deal with someone who can turn everything you say around until you end up talking about something completely irrelevant, nothing is ever her fault or her responsibility.
I have tried so hard to help her, she has been seen by every support group available and she has thrown every bit of it back in their faces. She says she's fine, she doesn't need help or support or her medication and then 2 days later she is inconsolable with depression and no one loves her or cares about her. While I've been trying to help the 18 year old all she keeps saying is "you never helped me"??!! It's beyond frustrating and I get to the point where I have to step away and think I just can't help you, you can't help someone who doesn't want to help themselves and I think she quite enjoys acting like the victim. She would tell all these people how awful her life was and they'd come round and check on her living conditions and see she had a beautifully decorated double bedroom with a double bed, a large tv on the wall, an x box, access to Netflix in her room, an I-phone that mum paid for, a family who had bent over backwards to try to help her and they were just at a loss as to what she felt she was missing. Now I admit I'm not the best at emotional support but I sat with her just last week and said there is nothing you are going through that I haven't been through, there is nothing that you can't come to me and talk to me about, I told her I loved her, she sat and cried. This week we are back to the fact I'm using her to get my other daughter housed? This is because she house surfs with friends and I've told her she needs to be here at least 4 nights a week or technically she's not living here and she will get her friends into trouble staying so often with them. No one cares about what suits her and it's not fair to expect her to do something to help her sister if she's not getting anything out of it.
Here is a problem that I don't think will ever be solved.

My 21 year old is pregnant with her third baby, she has just found out it's another girl so I'm expecting her to be pregnant again by this time next year in the quest for a boy. You would think I'd be delighted about another grandchild but as it goes she's still asking me for money on an almost weekly basis, it's always for food/gas/electric/nappies but they're never without fags and my son in law smokes weed. When you go over there's always takeaway boxes and cans of coca cola everywhere. She is the most devoted mother but her practical housekeeping skills leave something to be desired, on pointing this out her husband just gets angry that I'm being "rude". I help because I have been in the situation where I couldn't afford to eat or had to choose between having £5 gas or electric. My mother and husband tell me I shouldn't help as they will never learn to manage on their own but I find it hard to stand by and watch, I do however feel that if you're going to ask for help you should be willing to accept advice on how to manage your finances but they don't want to know about that. My daughter works full time at a nursery so her husband stays at home and looks after the girls but whenever we go over he's in bed.
Again I foresee this being on ongoing state of affairs.

My eldest was finally diagnosed with Postural orthostatic tachycardia syndrome (POTS) a condition in which a change from lying to standing causes an abnormally large increase in heart rate. It's a complicated thing that I haven't fully wrapped my head around and most doctors haven't even heard of. She was having severe chest pains and palpitations and nearly passing out during exercise. It took 2 years and an unnecessary operation to get an accurate diagnosis and she'd even been told after a tilt test that it definitely wasn't POTS?! She also has focal atrial tachycardia.
So it's not a life threatening condition but given the symptoms was very worrying, apparently it can be improved with changes to diet and lifestyle but she's currently got another years wait to see the only guy who specialises in POTS in the uk apparently. Her medication helps with the pain but doesn't take away the other symptoms and it means she will never be able to have children because whatever is in the drug will kill the foetus, they also told her some horror story about a lady who had come off her medication and got pregnant only to need an emergency operation as her baby was not getting enough oxygen.

This is copied from POTSUK.ORG

The Autonomic Nervous System

The Postural Tachycardia Syndrome (PoTS) is an abnormality of the autonomic nervous system (sometimes called ‘dysautonomia’). The autonomic nervous system (ANS) is in charge of all bodily functions that we don’t have to think about, such as:

• Heart rate and blood pressure regulation
• Digestion
• Bladder control
• Sweating
• Stress response

The sympathetic nervous system is part of the autonomic nervous system. It produces the ‘fight or flight’ or ‘stress’ response. When activated, a chemical called norepinephrine is released. Amongst other things, this causes an increase in heart rate and blood pressure.

What should happen to my blood when I stand up?

When a healthy person stands up, blood vessels contract and heart rate increases slightly to maintain blood supply to heart and brain.

What happens when I have PoTS and stand up?

 In PoTS, this automatic adjustment to upright posture is not working correctly, resulting in an excessive rise in heart rate, increased norepinephrine in the blood and altered blood flow to the brain.

 

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So it's just a worry and obviously a sadness for my daughter that she may not be able to have her own child. She is trying so hard to find what she needs to cut out of her diet to help the symptoms but is finding being on a student budget a struggle and her partner is more of an all you can eat takeaway guy than a lets try this lentil bake type. Any time she has to go to the dr she has to explain what it is and she even had one gp laugh in her face a few weeks ago when she said basically my body doesn't understand gravity! It must be very frustrating. She has started her own blog though and is already in touch with quite a few fellow sufferers so I think that is helping keep her going.

I'll start with Freya as I may need to gather strength and come back to talk about Lucas!

Freya is still doing wonderfully well at school although little things are starting to be mentioned to me by the teachers about her behaviour or things she says and does. I don't have much patience for it if I'm honest, they know she has a diagnosis so why would you wonder why she has taken you so literally or done something that might be considered a bit odd? She wet herself a few weeks ago and her teacher seemed so shocked, "she's never done it before" I nearly said well think yourself lucky it wasn't a pooh but I managed to say "it's fine it happens quite a lot at home". Sometimes I feel annoyed that I have to remind her to go to the toilet when she's been talking about dodecahedrons since she was 3 but then I remind myself how busy my own head is and I do think she has a genuine reduction of sensation down there, it is nearly a daily occurrence for her not to make it in time for a pooh.
She has started French lessons which of course are a doddle for someone with a memory like hers, I let her join the choir against my better judgement as her singing at home is painful at best. She has changed gym to one where she can progress to swinging on beams and such seen as she seems determined to try and kill herself by climbing and hanging off stuff, hopefully this way she will learn to do it safely?! She has also just moved up to Brownies from Rainbows.
Her behaviour at home is not much better than it has been for years, she will still respond to the 1,2,3 magic most of the time but when she's flipped into that hyper phase you can't reach her, fortunately we can recognise the "look" she gets just before that happens most of the time so if you're quick you can get in there with a distraction.
She does irritate the hell out of me, all the stuff she does are things that push my buttons, being loud, constant talking, singing, running and jumping off stuff constantly. One day I'm going to film her "sitting" on the sofa, it's more like an upside down beetle having a seizure. It takes a LOT of effort on my part to not dampen her spirits, I try to remind myself she is just a happy child (mostly) and above all that I do not want her to grow up as I did believing she is an irritating person or she'll end up like me, just not bothering to interact with people for fear of irritating them. I have a vague memory of being that happy, confident child.

So, on to Lucas! Sigh......
I don't even know where to start.
He's made friends with someone at school who likes to swear, I know this because during half term the swearing almost stopped only to be reintroduced to every sentence on the first day back at school.
We've tried ignoring it, correcting it in a nicey nice "we don't use those words" way, correcting it in a "you can go and sit in your room if you are going to carry on" way, nothing is working, he thinks he's hilarious.
The trouble with Lucas is that he doesn't care about anything, there is nothing he owns that he cares about enough to take away as punishment/incentive, he doesn't do anything because he won't participate in anything, star charts that promise something a week down the line are no good, he doesn't care about something a week away or even later today, and worst of all he doesn't care about punishments. I try not to smack them but he's had the odd smack when he's just persisted in defying me while laughing his head off and guess what? he doesn't care about that either, he just laughs even more or gets angry and then you get punched or spat at.
My daughter with the children was just the same, I never worked out a way to get her to conform and she can't tell me why she behaved the way she did although she does acknowledge now that she was a complete arsehole. (her words)
Freya gets very upset by the swearing so most days consist of him swearing at her and her screaming at him to stop it, which of course is really funny as far as he's concerned! I can only imagine what the neighbours must think!
A few weeks ago he came out of school and it was quite cold so I leaned down to do his coat up, he full on spat in my face, not like a raspberry a proper spit. I was impressed with myself that I managed not to react especially as there were lots of mums and kids walking past. I just wiped my face and told him that wasn't nice, so he turned and spat at Freya?! He then decided he wasn't going to walk home and dug his feet into the ground, we usually have some sort of trouble getting home most days as Freya is not road aware and doesn't listen to me saying not to run off and then Lucas either won't walk or just runs into the road for fun, I managed to get him to the top of our road and had to see Freya across the road to run home and get Mike, for some reason daddy doesn't get any of this crap. I actually bought him some reigns at one point as he'd managed to get away from me and had had a near miss with a car, the problem is he is soooo strong, I'm not a total weakling but it's like wrestling an ox.
He definitely has more rage than Freya although she has a very stroppy side too. It's like parenting Dr Jekyll and Mr Hyde, I feel like every day is spent walking on egg shells trying not to set him off. I am aware that this has probably led to his opinion that he is running the show but despite what my mother thinks we don't give in to his every whim, we have just decided to choose our battles or we'd be in constant conflict. His consumption of hot chocolate seems to upset people greatly, I am a member of a number of mum groups and have posted about his behaviour before and the opinion is the hot chocolate is to blame, how can any child be expected to behave with so much sugar running round his system?
When Freya was smaller you may remember she had a thing for ice lollies, she was eating several a day, it was a constant bone of contention with "professionals" who came to the house. 4 years later she doesn't eat several ice lollies a day, sure she still likes them and she may ask for one most days but the answer is usually no and she will have something else, my saving grace is that she loves fruit!
What's my point? I don't believe that the hot chocolate or sugar is to blame for his moods, he has autism, it makes us cranky, he was a little sod well before he started drinking hot chocolate and I don't think having all that milk is the worst thing he could be eating. In the past I have used hot chocolate myself as a means of not eating, due to an inability to prepare meals or because I thought I was fat, either way I kind of understand the attraction so I give him a hot chocolate pretty much whenever he asks for one unless it's very close to a meal time and usually he will accept no at those times. It's still got to be in the dog beaker so it's barely half a cup full at a time.
I have managed to convince him to have juice in a cup with a straw as I was getting worried about his teeth although the dentist tells me they are perfect. Unfortunately he still likes to throw things when he's done with them and he's not bothered whether the cup still contains any contents when he lobs it across the lounge or down the back of the sofa.
He is still eating with his fingers!
You just can't ever relax with him, I'm on constant alert and if I haven't seen him in 5 minutes I know he will be up to something.
He's ruined the laminate upstairs as his latest thing is carting water back and forth from the bathroom when he's meant to be in bed. I sleep on the floor in his room but do try to get some me/adult time before bed when they are meant to be settling down, currently it's nearly 10pm before he finally collapses into bed and he's awake again by 6.30am if he sleeps through. Freya on the other hand would be asleep within 10 minutes of her head hitting the pillow at about 7.30pm if she could get any peace and quiet!
He's still in nappies at night, much to my mum's disgust, I'm not bothered about it, I'm pretty sure he won't still be in one at 18, I'm still trying to get him to pee in the toilet rather than all over the floor but I hear that's a boy thing!
90% of the time I'm still not allowed to do anything for him, it has to be daddy, this is causing me a severe headache as time goes on and my marriage seems to be unravelling day by day.
I've been reading a book called "how to hold onto your kids" it's basically about trying to maintain a good enough relationship with your children that they do not begin to turn to their peers for the support they should be getting from you. A lot of it makes sense to me but it's incredibly hard to keep giving to a relationship where you feel you're getting nothing in return. What's keeping me going is his anxiety. I don't understand so much of what he does but I do understand his anxiety and I can see that some things he does are in an effort to hide his vulnerability ie: acting like the class clown, he really isn't that confident, mouthy little boy.
I booked him into an activity over half term, Freya was going too but it was a venue they hadn't been to before. I was dubious whether he'd stay. When we got there there was a huge queue, not a good start. He had started at home as soon as it was mentioned he was going. "stay with me mama" we tell them both everything in advance and it is always made clear that if they're not happy they don't need to stay. I know that he will generally be fine once he's there but it only takes a little thing to upset him and if there's no one there in that moment that can take the fear away then that's that you've got a meltdown on your hands and even we can't help him then.
The whole long 10 minutes in the queue consisted of "stay with me mama" over and over and over. When we finally got to the front I asked if I could stay and the lady said no but I could sit outside the room, he was happy with that. One lady took him off to get a colouring sheet and he attached himself to her for the rest of the session. It was 3 and a half hours long! It started at 8.45am and I hadn't had any breakfast nor thought to take a book or something to amuse myself. The staff were very kind and offered me a drink and biscuits and even gave me a phone charger when my phone died. One man assured me he had experience with kids with special needs and told me to go home and he'd watch him but I didn't, I didn't want to betray his trust, I'd told him I'd stay so that's what I did, who's to say that something might not have gone wrong and I'd have needed to be there, it didn't but it might have done.
In the 4 weeks it's taken me to write this post, his school teacher has approached me and asked for a meeting with herself and the senco to see what they can put in place to help him. Up to this point they seemed to keep telling me everything was fine but I'm guessing suddenly it isn't. We've yet to have the meeting as it's been cancelled twice now but in the mean time we went to the nurse led clinic at the child development centre to discuss his behaviour, I wanted ideas for the swearing really but we ended up talking mainly about his anxiety and his lack of progress at school. She has refered him to an OT and we have been put on a waiting list for help with his behaviour, we've already done all the courses that they can offer. I don't know how he behaves at school but I can imagine he finds all the noise and movement hard to deal with. The nurse suggested letting him use his headphones, having him do his work in a quieter space, having his chew toy as we call it, (he has munched through about 3 school tops now) seeing if he can do his letters on an I pad rather than using a pencil as he can't hold it correctly and seems to have little control of his movements, breaking down his tasks. Also there should have been an autism advisory teacher come into school to see him which as far as I'm aware hasn't happened. It's parents evening tomorrow so that should be fun!

I managed to persuade Mike to go to a dads group last night for dads with kids with additional needs in the hope that he will have a good moan about us all there and maybe stop bitching about us under his breath as he moves about the house! Of all the things he does that annoy me this is my biggest hate, I've told him a million and one times that it's not acceptable to be being mean about us where we can hear him but he has this idea that if he says things quietly it's not offensive? On the other hand if I raise my voice in frustration I'm being aggressive?! I am the bad one and he is the poor long suffering victim. He also claims when we had counselling that the counsellor said he needed an outlet to express his frustrations but I do not remember the guy suggesting he just spend the day putting us down, I think he was suggesting maybe writing it down.
As you can imagine, when someone is slagging you and your kids off all day every day it has an effect on the way you feel about them and lessens your desire to want to be with them especially in an intimate sense, in turn that just brews more resentment on his part and so it goes round and round.
Don't get me wrong, I love my husband, but the longer we're together the more I feel that he's just not a nice person, I am no saint by any means but even when I'm angry I don't attack people's appearance or criticise them I address the behaviour as the thing I don't like.

So I got pulled in after school today with 3 other parents about the boys using bad language and saying mean things to others. I'm not sure Lucas was even listening and his teacher seemed optimistic it wouldn't happen again now they'd been told not to do it?!
I had to say we'd been told by the nurse to stop correcting him and just ignore the things he says which of course goes against what he's being told at school so no doubt that scored me a black mark.
On escaping Lucas ran off up the road with his friend and straight across a road, I managed to catch up to them but as they were together they were just egging each other on saying "don't listen to my mum or your nan, follow me to my house" and his friend saying "here's a stick, keep hitting your mum with it all the way home!?! I managed to pick him up but then his friend was following!
I was totally burnt out by the time I got home and have since been sat here thinking what is the point of him attending school? I can't think of one positive that has come out of it. The socialising causes so much anxiety for him he's just dealing with it by being really naughty, he isn't learning anything from what I can tell and has no interest in doing so, he's upsetting other children and disrupting the class. I have read the local council advice on home schooling and it seems if your child has additional needs you need to get permission from the council which seems a bit backwards to me, surely it's more detrimental for "normal" children to miss out on a conventional education than a child who is never going to learn in the restricted setting of a school classroom where they continue to try to bash square pegs into round holes in the hope eventually they will fit in?
The first time I had children in primary school I did as I was told and believed they knew what was best for my children but having had 4 children go through the education system already I know that they don't know best and they don't/can't/won't help children with behaviour problems, I'm not blaming anyone for that but it highlights to me that having perfect attendance, volunteering for the PTA, handing in your homework every week with the best presented piece that clearly mum or dad did, does not mean that you are going to leave school with a fabulous education or even half happy memories of your time there.
Some of the other mums were upset about the chat today after school, I expect they felt it reflected on them and their parenting skills and I have no doubt that that was part of the intention of the chat but it didn't bother me at all, I know my child, I know what we go through and I know what's coming 5 and 10 years from now and that's what I'm focused on, the bigger picture, making sure these 2 are emotionally secure adults, that they know I am here no matter what mistakes they make and I will always love them and do what I feel is best for them. For Freya that means a LOT of input, lots of activities and opportunities to excel and yes education but for Lucas that means finding a way to reach him through things that interest him, a lot of time spent exploring his emotions and making sense of them, it means quiet time and time away from Freya where it's ok not to talk.
I have always felt overwhelmed by the responsibility of parenting, there is very little enjoyment in it for me, it's a job and one I take very seriously. It frustrates my husband no end the way I bend over backwards to help the older girls and I get called all sorts of names for it but at the end of the day my children are my life and a life that I chose, yes it's bloody exhausting and frustrating and it feels like there is never time or money for the things that I want to do but that's just part of being a mum.

Nordesthetics Lithuania Tummy Tuck Breast Implant review

I arrived in Lithuania on 24th Oct 2017 with my sister, we flew with Ryanair and came in half an hour early so I was happy with that, I hate flying! Luton to Kaunas - 3 hours.
We were met at the airport by one of the clinic drivers Victoria and after a short wait for another lady who'd flown in from London we were off to the clinic.
The first thing that struck me about the clinic was that it wasn't called Nordesthetics, it is called Grozio Chirurgija, they have 3 clinics in Kaunas and I think Nordesthetics is just an umbrella name.
The plastic surgery clinic is very nice inside, clean and modern.

I had my bloods taken promptly and then my consultation with Dr. Sakalauskas. The consultation was very thorough, each operation was explained to me in depth including possible complications and expected outcomes. I had intended to have fat transfer to my breasts as we have a family history of breast cancer and I was worried about implants. On examination the Dr said I didn't actually have enough fat to make this worthwhile, this was a surprise as my own Dr had told me I was centrally obese. We discussed implants and he reassured me they would be safe placed behind the muscle and would not interfere with future breast screening. We tried some sizes and agreed that a 2 size increase was about right. I have always had very small breasts and didn't want them to be big, I just wanted to look female in my clothing. 

I was given a bra to put on to put the breast shaped silicone boob into and a vest top to put on over it which gave a better idea what I'd look like in clothing.  

After sorting the payment and paperwork we were taken to our hotel. 

We stayed at the kaunas hotel in the main tourist area. The room was a good size and clean and comfortable.

We walked up and down the strip outside the hotel looking for somewhere to eat and eventually found a nice Italian just round the corner. 

My surgery was booked for 9am the next day so I was picked up at 8.30am. On arrival I was taken to a private room and asked to put on my operating gown, I was getting nervous now! The anaethetist came to speak to me and then I went down to be drawn on by Dr Sakalauskas, this was my only complaint about the whole experience as this was done downstairs in the original consultation room which meant I had to walk past a few people waiting in reception in my gown and dressing gown which felt awkward. 

Once I was marked up it was back to the room to wait for my drip feed to be put in.

 You can see the area for the liposuction on my back and the skin area to be cut away on my stomach, one breast was lower than the other so I have a larger mark under that one for him to try and match them up. 

I'm a total baby about needles but was so scared by this point I just wanted it to be over. The anaethetist came back to take me down to theatre, I have been walked into operating theatres before and it's always a bit unnerving seeing all the equipment but he told me to lie down then covered me over with a lovely quilt, black with multi coloured flowers 😊 it was such a lovely touch and made me feel like I was just going to have a lovely sleep not be butchered to death!

He let me know he was going to start and gave me an injection into my drip feed. I have had a fair few operations and sometimes being put to sleep has been awful with the room spinning and a feeling of pressure on my head but this was very gentle I just felt a tad drowsy and that was the last thing I remember. 

When I woke up I thought they obviously hadn't started then felt my boobs and realised I was done! I remember shaking at some point but I've had that before after general anaesthetic so I wasn't concerned and they gave me a big heater and it soon stopped. I wasn't in any pain and just slept on and off.

This is how I looked when I came round enough to talk to my sister, very glamorous! 

Dr Sakalauskas came to speak to me soon after and told me my muscles had been 11cm apart. I was gobsmacked, no wonder I hadn't been able to fix them with exercise! He also gave me a bit of paper saying how much skin and fat had been removed. 

They really like to feed you and the food was pretty good if only I'd been able to enjoy it! As soon as I tried to eat I was sweating and felt sick. The nurses were very attentive and consistent with pain killers, anti biotics, sleeping pills and anti sickness injections. 

By the second day I was staring to feel quite rough, I still couldn't eat and felt really sick and dizzy. The anaethetist quickly appeared and ordered a blood test to check my haemaglobin levels and 2 minutes later a nurse appeared to take it. It was the most relaxed I've ever been about a blood test I just didn't care by this point. My blood tests came back normal and the Dr explained he thought it was due to the sudden tightness and restriction to my stomach and lungs that I was feeling sick, it was hard to breathe but he had warned me that might happen when be closed the muscles. Today was the first massage, it wasn't enjoyable and my breasts made all sorts of noise from the air trapped in the cavity which is totally normal but was unnerving all the same. We were encouraged to try to walk and later in the day they removed the catheter so then i had to get up to use the toilet.  Trying to reach the underneath of your garment to do it back up everytime is no small feat! The nurse helped the first time I went. Weirdly I could breathe easier when sat on the loo! 

I enjoyed watching the lights in the next building in the evening it felt homely. 

I shared my room with another lady who'd had a tummy tuck, she was Swedish but spoke good English and it was nice to have company. We encouraged each other to get up and use the loo etc on the second day. She had quite a bit of discomfort from her drains, mine did not bother me at all. 

On the third day I had to have my dressings changed and drains out before leaving, this was a little uncomfortable but I was glad when they were out. They gave me all the extra dressings and antiseptic spray I needed to look after the stitches for the next 2 weeks as well as pain killers, anti biotics and instructions for taking it all. I had another massage in the morning. 

I didn't really feel ready to leave for the hotel, it seemed like it would be impossible to walk downstairs to the taxi and I was worried about being sick on the journey. It was about ten minutes back to the hotel and the driver was very careful to avoid pot holes and let me put the window down. 

It was hard work and I felt self conscious when we got to the hotel as I was bent over walking. We got back to the room and I was happy to be there and able to relax. The hotel is well situated for places to get coffee and snacks so my sister was able to pop out and get me a hot chocolate and cake when I felt better. 

I managed to make it down for breakfast in the morning and met another lady walking up and down the hallway bent over, she'd had the same operation although she was a day ahead of me, it made me feel better to see someone else in the same boat. 

My sister got lunch from the supermarket across the way and I just basically sat in bed watching the English nature channel all day, many many episodes of Paul O'Grady for the love of dogs! 😄 

At dinner time we ordered food for room service which was only a €3 charge. I managed to find some plain chicken and rice and ate about half of it. 

Trying to sleep was a whole different ball game without the electric bed to help me get up and down and get me in a position that was comfortable. You are advised to sleep on your back, I cannot sleep on my back and this caused me the most problems. I tried lying on my side but that hurt the breast not resting on the bed, I discovered if I wedged a pillow between my breasts to try and support the top one that was fairly comfortable and I could get some sleep but it was not great sleep. 

The next few days went the same until the last full day when I decided I'd brave going to the shopping mall, by taxi of course, as I wanted to buy the kids little presents. It was hard work and we struggled to get help finding the taxis to go back to the hotel, they are sat at one end. 

Dressings were changed every other day and the elastic strap on the breast garment goes above the breast one day and below it the next. I was glad when I could have a shower although being out of the support garment felt worse than being in it. 

I didn't think the bruising was that bad, my stomach mostly felt numb and I wasn't really in any pain apart from when I lay on my side. 

We flew home 6 days after arriving, 5 days after the operation. Before the flight I had a final appointment with Dr Sakalauskas to check all was healing well and I was ok to go home. This was at one of their other clinics which wasn't particularly nice looking from the outside but the clinic itself was just as nice as the one where I'd had the surgery. 

I was terrified, terrified I wouldn't manage the walking at the airport, terrified someone would notice I was in pain and deem me unfit to fly. I just wanted to get home but didn't want to do the journey. 

For reference Ryanairs website says you can fly 5 days after simple abdominal surgery or 10 days after complicated abdominal surgery, I didn't feel like what I'd had done was simple but then it is fairly common. Anyway I got away with it, I was more or less straight when walking, I managed to pull my case and my sister lifted it up for scanning etc. The hardest part was queuing to board, it was so packed and I was trying not to get hit by someone and there was nowhere to sit so I tried to sit on my case but that required using your ab muscles so I just had to stand. It seemed a long walk to the aeroplane and I was glad to sit down. 

I'd been sitting all week but with my feet up, sitting properly in a chair was uncomfortable. I've had varicose veins in the past so I was worried about the flight, my sister kept making me get up and walk down the Isle, I felt like an idiot keep getting up and got stuck at one end when they started serving drinks and was hanging onto the wall to try to stand, people probably thought I was drunk! 

I was so glad to get home and my mum had come to the airport to meet me even though she was going straight back home on the bus as my husband and kids had come to get me. 

I have been doing a lot of resting since I came home, I've watched 7 seasons of once upon a time on Netflix in just 3 weeks! I went back to work last weekend at 3.5 weeks after surgery and that was tough. I work in a supermarket but because I haven't been on my feet for more than an hour, a 4 hour shift was pretty brutal. 

It's 4 weeks today since my surgery and I am just starting to feel a little stronger, I managed to tidy my sons bedroom yesterday, it took me 5 hours with a few breaks. 

It still hurts my boobs a bit to lie on my side, I'm still wedging a cushion in between them to support the top one. I'm still struggling to breathe deeply especially when walking. When I sit for more than ten minutes the top of my stomach seems to seize and then when I stand again it is quite sore, it feels like it's ripping. I try to stretch up a bit but I'm worried about tearing the internal stitches. I had the external stitches out at 2 weeks which they made a bit of a fuss about at the gp as they don't deal with things done privately but because I'd had it done abroad they decided they had a duty of care to do it.

These are at 2 weeks after the stitches came out. I have some swelling here but it's not bad. 

This is what my stomach looked like before I went. I was quoted £7500 for a tummy tuck with muscle tightening and lipo in the uk, in Lithuania it's just under £2000.

I would never have been able to afford to have it done here and certainly wouldn't have been able to have my breasts done as well. I've been depressed about having tiny boobs my entire adult life, I've been walking around for 5 years with this huge belly constantly being asked if I'm pregnant, not being able to find anything to wear that would hide it or I could feel comfortable in. It affected me so much I wouldn't leave the house unless I had to. I hated myself, I felt ugly and couldn't believe my husband could find me attractive so I'd hide from him, avoiding physical contact as much as possible. 

Am I a different person now? No and yes. 

I still have autism and all the personality challenges that come with that. I still have crooked teeth and a bump in my nose and persistent acne on one side of my face. I'm still mum to 6 crazy kids and 2 soon to be 3 grandchildren. 

But I don't hate what I see when I look in the mirror anymore. I'm not punishing myself for the failings of my body. I worked hard to try to fix myself with diet and exercise and it didn't work, it was never going to close that 11cm gap. I don't feel like I have to hide anymore or be ashamed. I'm not perfect but it's enough for me. 

I've still got recovering to do but would I do it again? Absolutely. Would I recommend the clinic? In a heartbeat. It was a risk going abroad for surgery but one I'm so glad I took.  

My advice to others would be don't spend years being unhappy, I wish I'd had this done 5 years ago. It is tough having 2 procedures done at once but if you have good support you'll be fine. It's not vanity when it affects your self esteem and there's nothing wrong with wanting to look nice anyway! I've been slim all my life and I finally feel like myself again and that is definitely worth the few weeks of discomfort. 

This is a link to the core programme I've been doing to fix my core function

https://laurenohayon.com/?rxf=60  Affiliate Link you can also get a $10 discount by adding my code af1060 at checkout

Evening before surgery vlog

This is the link to the next vlog on my surgery


https://www.youtube.com/watch?v=UvdODqo9I24

Autism research

So yesterday I went to Cambridge University to take part in an autism research project looking at the experience of parenting for people with an autism diagnosis. It was broken down to focus on the following questions.
1. What are the positives of parenting?
I really struggled with this one, I find parenting so hard. For me the positives are having someone to love always and hopefully one or more of them will love you back forever.
2. What are the challenges of parenting?
How long have you got?! There are so many challenges for people with autism.
First and foremost you've got to put someone else first, that's really hard, it means putting yourself in their shoes to some extent to try and work out what they need.
There's a fair chance you'll get a kid on the spectrum so don't count on them being able to tell you what they need. Both having the same thing doesn't mean you'll understand all their struggles especially if they are the opposite to you with regards to sensory input.
It can be hard to focus on the task at hand, I often think about putting on tea then get distracted and then everyone is starving, I forget there's food on and it boils in, gets burnt etc I'm no better organised in the morning than them so if it wasn't for my husband we'd probably be late for school every day.
I can't support them emotionally, this is a big one for me, I probably wouldn't have had kids if I'd known this. There is no room in my brain for other peoples problems, I don't want to hear about so and so at school and after about 60 seconds of being talked at about any subject I've switched off and my mind is elsewhere. I have managed on the whole to find partners who do this really well and this has helped and allowed me to just get the practical stuff done, I'm hot on returning letters, checking for lice, getting teeth brushed, making sure they're not living on junk food etc and laundry, I think I live for laundry. I can't work out where to start with tidying up but I can have your clothes you took off at 8am returned to you washed and dry by lunchtime!
Having to meet other parents, school runs, after school clubs all involve being social and making small talk, the school run in particular really stresses me out, surrounded by loads of people talking, sometimes I try to join in and usually feel I've got it wrong and some days I just try to hide and hope no one will see me.
Noise, kids make a LOT of noise and when you can't stand noise that's a problem.
Kids are demanding, they want answers straight away which I often can't give them especially if there's lots of noise, I try to tell them I'm thinking about said request but they have little patience.
I'm tired, all the time, so just keeping up with them and on top of the tasks of running a house can be overwhelming.
3. How would you describe your approach to parenting?
I used to have a very regimented approach to parenting with the older 4 and now I am probably too laid back. There are some things I'm not prepared to compromise on, being rude and breaking things but I let a lot of their behaviours go because otherwise I would spend my whole life moaning at them.
It's nice if they do well at school but I'm not that bothered about it I would rather they were happy and had a more rounded education including exploring the natural world and travelling and an understanding of other cultures.
4. How would you describe your relationship with your child?
It was suggested the relationship with your child may be dependant on whether they have a diagnosis but that isn't true for me. I have a different relationship with all of them, some I'd say I had a good bond with, others I feel distanced from and some I just can't understand and that makes it hard to build a good relationship. I don't miss my children when I'm away from them which is something I've always felt guilty about so it was comforting to find I'm not alone in that. My children are all quite independent, perhaps because they've learnt they can't rely on me to help them although I am actually amazing at fighting their corner when they need me to. They don't seem to need me and rarely show me any affection.
5. Is there any support that would be useful for autistic parents?
My reply to this was leave us alone. As parents of children on the spectrum we are forced to attend courses to learn about autism so we can learn to change for our child because they cant, not very helpful when you're also autistic. We are forced on parenting courses as we seem clueless how to handle these small strong willed people, we are told we must rein in their behaviour so they don't disturb the outside world and we must help them to change so they can fit in with the "normal" kids.
My friend was telling me the other day that when her son was first diagnosed she went on a course with the national autistic society who said it was highly inappropriate to send parents of autistic children on parenting courses as it suggests it is a parenting failure which of course it is not.
Making us go to support groups to meet other autistic parents is not helpful, we don't like social situations and personally I find people like me quite irritating.
What would be useful is someone to do the things I can't, practical things like cleaning, shopping, playing pretend with the kids. That said I was once offered help from home start which did include those things but I found it to add even more stress having to worry about the state of the house and just knowing someone was coming to the house once a week was horrid.

It was quite an enjoyable experience in the end and I was glad I went.

Pre op vlog

This is the link to my first video logging my tummy tuck journey

https://www.youtube.com/watch?v=bZMbRM5m384

Tummy Tuck!

Those that have read my post on diastasis recti will know how we've come to this point, if not then I have basically got a massive belly left on my otherwise slim frame which leads to me being asked if I'm pregnant on a fairly frequent basis. I have come to hate what I see in the mirror, nothing I wear can hide it and I avoid leaving the house unless necessary so I don't have to suffer the embarrassment and questions of looking like I do.
My youngest child is 5 at Christmas, I've tried all the advice to lose my belly but even the programmes specifically designed for diastasis recti have not helped either close the gap or the appearance of my tummy.
So when I decided to breed our ragdoll cat I decided there and then that I would use the money for a tummy tuck. Unfortunately she'd need to have 3 litters before I could have it done in the uk so I made the decision to look at having it done abroad.
The first company I contacted told me they only accepted cash?! They then refused to do it when they learned I have autism? The reasoning was that some people with ASD are anatomically different from normal people and the surgeon was worried about how safe it would be to intubate me?! I think this was nonsense I have had plenty of operations and no one has ever suggested such a thing to me before. I think it's more likely that when I listed my medication which includes risperidone they just decided I must be a psycho and didn't want to know. I think it may have been a blessing in disguise really.
I then found another company that seemed a bit more legitimate, they have been used by the tv for makeover programmes and I could find a few genuine reviews from people from the uk who'd used them so I booked my surgery date for 25th October 2017!
I managed to convince my sister to come with me as obviously my husband will need to look after the children and I should be really excited about it.
Instead I find I am absolutely terrified, I am genuinely terrified I'm going to die. I have read all the stories of women who went into cardiac arrest during the operation or died of blood clots or infection a week or so after the operation. I have also googled the thousands of operations that go smoothly but this is giving me little comfort.
Why would I think I would die you might wonder? Well I feel like I'm a fairly unlucky person, if something bad is going to happen it's probably going to happen to me. I have an inability to imagine myself growing old or seeing my youngest 2 grown up so therefore I convince myself it must be because it isn't going to happen. With all the recent terrorist attacks I've become terrified to go anywhere because I can visualise being caught up in an attack and dying. I also have had varicose veins removed from my legs twice and have a large lump behind one knee so I feel I'm a good case for a blood clot. I've had a fair amount of surgery and wonder if this will just be pushing my luck too far?
There's also the overwhelming guilt, what would life be like for my little 2 if I didn't come home? Freya would have no parents, my husband would really struggle to look after them both on his own, would he give her up? And all this because I despise my body?
I have had to come off my medication because they can react with anaesthetic which no doubt isn't helping my mood but I don't know how to get through the next few weeks without being either depressed or in a total panic. Everyone I speak to about it thinks I am being totally ridiculous.
I have told mike where the Halloween and Christmas stuff is and am considering writing the kids letters in case I don't come home.
I've considered cancelling the operation but the thought of spending the rest of my life looking like I'm 7 months pregnant is as bad as the thought of dying.
Just to add to my stress Ryanair have decided to cancel loads of flights after I'd just booked with them so I'm hoping mine won't get cancelled too nearer the time as you can't take out any travel insurance when you're going abroad for surgery!
I am hoping to do some videos of my journey to help anyone else who may be considering this surgery or clinic as there isn't much out there at the moment. Wish me luck!