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
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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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.
