Here some suggested organisations that offer expert advice on SN.
Desperately in need of a honk and a hug :((44 Posts)
That's about it really.
Ds is a mess, school was a disaster again today, they are still not doing remotely what they say they are and should be doing, are still doing things they most definitely shouldn't be doing and yet again have given his self-esteem a massive kick in the guts today. On top of that it's problem after problem with the TA they've assigned to him and he is too scared and totally refusing to tell anyone other than me how badly she's affecting him.
He came out of school today full of anger, frustration and despair and I know just how he feels.
My heart is breaking for my poor boy. I feel so worn down, like I can't even get up off the sofa. I just want to curl up and pretend it isn't happening, because I know I can't do anything about it all - nothing I try works - I am continually banging my head against a brick wall with all my exits blocked. BUT ignoring it isn't an option is it, I have to fight and stand up for him, because if I don't, who will?
Sat here in floods of tears, waiting for dh to finish bedtime routines so I can fill him in on today's disasters, but knowing that he won't fully get it even if I do. Marriage is falling apart as well at the moment and I no longer feel I know or can trust my dh, which is heartbreaking after 25 years together.
So sorry for the self-pitying post. I just needed to let it out somewhere.
No words really "moose". its disgraceful what the school are getting up to. I do wonder sometimes whether they realise that it is somebody's whole life they are playing with... hope it gets better for your son soon.
Thank you Dev. It's kind of you to reply.
I know I am wallowing, but all my fight seems to have left me today.
moosemama, one moment at a time, one minute at a time, one hour at a time, one day at a time, one week at a time, one month at a time, one term at a time. <hugs> <honks>
Get off the rollercoaster and give yourself permission to ignore them all. The fight can be resumed next week.
Tell him he looks peaky tomorrow and you think it would be best if he stayed at home. Invent a temperature.
You can't ignore it forever, but giving yourself time to reboot isn't going to make any difference in the longer term, and will help you get back to form.
Just say 'fuck 'em' for a day or two, and get boily mad.
Have you gone back to IPSEA?
Thanks guys. I know all I can do is fight each fight and not tackle the whole war in one go, but seriously, tonight I don't even have enough fight to face the school run in the morning. I need to deliver a reply slip to the school office and ridiculously I am too scared to go in there.
No change of getting him to take tomorrow off - it's cricket club.
I haven't gone back to IPSEA, because I think I know what the options are and basically it's a case of getting the LA to enforce, or if not we're back to judicial review to force them to do it. First step is the meeting with inclusion boss and teacher, LEA officer, EP and SENCO, but while I'm waiting to hear when it will be and who has agreed to attend things just keep on getting worse - and of course there's absolutely nothing I can do about the teacher's attitude.
Oh moose I don't know your situation fully but is there anyway ds can be homeschooled until school agree to put everything in place that should be? Can doc sign him off with stress?
I agree have a duvet day buy yourself a box of chocs and do sod all for a day.
I sympathise with your difficulties with Dh. Myself and hubby are struggling after 9 yrs together mainly due to no support for dd2 and the fact she still sleeps in our bed doesn't help! But we are plodding on as he's my rock and is supportive.
Sending you a hug
I'm sorry it's got worse Moose, I don't know what to say, would your DS countenance home ed/flexi-schooling at all?
You need a break as well, you have been in pain for quite a few months now, constantly, on top of the ongoing neuro queries, so it must be exhausting for you on a physical level
God bless cricket club.
Tell him it's cancelled...?
<eek. No way I'd get away with it, but...>
Then eat crap, drink beer, and force yourself to watch something utterly meaningless on the box. Refuse to give any of it even a minute's headspace tonight.
If dh asks, just say 'life is unremittingly crap' and demand more beer/ gin.
Is this dh uncertainty part of the new job thing? I'm sure he's rock, moose. How come you're wobbling?
Breath in breath out. Having a wobble here too. Must be something in the air eh?
HONK and << >> from me.
Hope things get better soon. Some days feel harder than others, I know. My ds was at home today because of all the anxiety . I think it's the guilt that makes you feel worse, thinking that you should be doing more to help them but knowing that practically you are already doing as much as you can. Tomorrow is another day.....
Sanna, unfortunately not. One of Ds's 'rules' is that he goes to school every day and there are things about school that he would miss, not least of all his best friend. I have discussed homeschooling with him a few times, but he flatly refuses to even consider it.
As the head of the inclusion team said to me yesterday, ds is one of the most severe 'black and white' thinkers they have on their roll and it makes him incredibly hard to deal with at times like these.
Thank you for the hug.
Hi TLP. I know and I'm really struggling neurologically at the moment, not to mention my flipping foot - well leg really. I had a really bad neuro episode while out with the kids last week that then got worse when I arrived home. I know I should have contacted my neurologist straight away, but I just couldn't, I had enough on my plate already and my usually supportive dh has decided to have his midlife crisis in the middle of all this and all but abandoned me to my fate, despite seeing the state I was in (unable to stand, talk or see properly). He said he assumed it was my medication, but seriously, I've been on the medication for months and he knows it doesn't do that to me. I think he's just had enough of me being constantly ill and is struggling with staring the reality of a future as dh in the face.
Madwoman, let's just say his response to my collapse and subsequent extremely out of character behaviour (even while I was really ill in bed) has given me enough reason to be suspicious and when confronted, he couldn't defend himself.
I don't doubt that he loves me, but I'm not sure that's enough for him to carry on 'coping' with our life as it is/has been any more, he feels cheated and wants more from life. The new job has been a catalyst for his mid-life crisis, new trendy clothes, shaving off his beard, monumental effort with his appearance, being secretive and generally behaving like the total opposite of the man I've known for 25 years. I feel like I don't have a clue who he is anymore and he's done a few specific things that make me genuinely suspicious about what he's up to.
Oh Lordy, he's normally so sensible. <sigh> might be something of nothing, dh here at one point bought tooth whitening kits. This is the guy who won't even go to the dentist, and wouldn't recognise moisturizer if accidentally fell into a vat of it. Are you sure it's secretive and not just avoiding talking about it because he doesn't want to harp on about what a great time he's having in his new job whilst you are feeling crap? <really don't want to ask but... What did you confront him about?>
Where's your mum? Any chance she can take over for a couple of days whilst you hide? Or do you not want to hide really, just get bloody angry with all the incompetents? (If you can summon the energy)
Head of inclusion team sounds very sensible. Can you use her more? Even if you have to beg? It is their job to be able to cope...
Hi moose sorry you are having to go through this.
I go through difficult patches with DP and have recently told him that Dd3 and I are going to leave if he isnt able to get on board with at least some of the strategies that work so well with Dd3.
I have big trust issues and and inclination towards walking away from complicated situations.
I really feel for you, you need your DH to be with you ATM not pulling away from you
Am honking, ((hugging)) and flapping like mad for you.
Moose hugs and honks from me. It is no wonder you have run out of steam, you have had such a lot to cope with for ages now. Was this episode the collapse at the garden centre you mentioned on Friday night thread?
Don't know what to say about your DH. Mine has never been very supportive but it sounds as if yours has in the past so maybe he will be again once he gets his head round the changed situation.
As for school, I also have a Ds who is determined to go no matter what although sometimes his OCD is severe enough to prevent it (like today). If he is that determined maybe you can hang on until at least you have had the meeting. Maybe chase it stressing things are getting worse?
And handing in things at the office. I know how you feel. After Ds primary excluded him (illegally), I still had to go everyday with Dd and take Ds with me. It is easy for me to say now, but try to remember they are the ones in the wrong who should be afraid.
Probably none of that helps. Have another hug or two.
No, unfortunately not. We're talking emptying the cache on the computer and being glued to his phone secretive here.
Can't tell you what I confronted him about on here really, but it wasn't good and he didn't have an excuse.
Mum is off for a couple of days for her birthday as of this evening.
Dh and I are supposed to be going away for the weekend with all our uni mates to a boutiquey hotel and rock night this weekend, but I seriously don't feel like going - I don't want to be around him to be honest.
Head of inclusion is fab. We spent an hour on the phone yesterday, loads of off the record stuff and lots of support from her and she's offered to round up all the professionals for the meeting to end all meetings, as they are all more likely to go for her than they are if I ask. Basically she shares our anger and frustration but she too is pushing the limits of her power to make anything happen, not least of all because we've between us ascertained that the school has fed her a load of lies (often different to the ones they've fed us). She and his inclusion teacher are as upset as we are at how much damage the school has done to ds in such a short space of time, especially after they and we have worked so hard over the past three years to get him to where he was last school year (ie happy and achieving).
Ineed, thank you. I have never had trust issues with dh - we've been together since we were 16 and I always felt we had grown together and I knew him. Seems I was wrong. It feels so much worse because he's the only person I have ever been able to trust in my life and now I feel like that trust was naive and misplaced.
NoHaudin, yes, the collapse was at the garden centre. I had a really bad head all day, but we went to look at the christmas decorations with my Mum with the dcs, as we'd promised to.
I started to feel a bit ill on the way there - assumed it was just a bit of motion sickness, as I have a bit of a sinusey thing going on, but it didn't get better when the car stopped and then I suddenly felt really odd and my head pain got a lost worse. I was trying to tell my Mum that I felt ill, but couldn't get any words out properly and I was conscious of not upsetting the dcs. I am still on crutches at the moment, so with whatever was going on with me I couldn't co-ordinate myself to get to where Mum was and alert her, so I stood there swaying and clinging onto the crutches until she looked up and noticed something was wrong. Then I managed to let her know that I was going to try and head to the cafe (which was very nearby) and she should stay with the dcs, give me chance to recover and then follow on. I struggled to get there as my left leg (the one that I have CRPS in) kept dragging and wouldn't work. Got to the cafe and it was just so bright and loud and I felt like I was going to hit the deck, so I went in the loos instead and sat on a toilet for a while until I felt slightly better. When I came out Mum and the dcs were searching for me, dcs were oblivious, but Mum was panicked. She got me some water, I had a sit down for a while and then managed to get back to the car. Unfortunately, when I got home I lay on the sofa and within half an hour realised I couldn't get up and couldn't speak without slurring so badly that I couldn't be understood. Mum had an appointment to get to and had thought I was getting better so had left, the boys were on their computer time upstairs and dd was watching tv, so I just curled up and prayed for dh to get home from work quickly (he was due home in half an hour anyway). When dh got home I was no better and he helped me upstairs to bed. I have since found out that he assumed I'd taken mega cocodamol and that's why I was out of it.
I should have gone to hospital there and then, but I missed the opportunity and there's no point if they can't see it happening 'in action' as it were. Also, it seems no matter how bad the symptoms get they are never bad enough for the neuro to class them as serious neurological symptoms.
It was horrible and dh was really unsympathetic and supportive, although to be fair, I had to take mega co-codamol for my foot on Saturday and he was shocked when he realised I could hold a full on conversation about ds1 and school etc an hour and a half after taking them. So obviously the penny dropped that it couldn't have been cocodamol on Thursday after all.
Kidneys? <dare I ask?>
Is your mum having the dcs this w/e?
I think you should go. It can't get any worse, and it might give you the opportunity to reconnect/ get some stuff out in the open. Might not be as bad as you fear?
Have you let the neuro know about the episode anyway? I think you need to make sure it is all documented. <and you know - call them next time - <weak smile> or make sure your mum and dh know they are to, and where the number is>
If dh did assume you were out of it on cocodamol, his reticence is possibly understandable? <not defending him, he seems to be being weaselly, but his realization on sat seems like a plausible reaction?>
I'm thinking possible TIA again - there might be new markers?
Those symptoms sound so obviously neurological that I'm shocked the neurologist doesn't take them seriously. Any mileage in a second opinion though I can see that that might be the last route you want to take at the moment. It must be so frightening and worse if Dh is unsupportive.
FWIW my Dcs don't seem to really notice my symptoms even when they are bad beyond saying 'Mummy's a bit wobbly' and they are a lot older than yours.
Because of my age, I know quite a few men who have done the whole Midlife crisis thing.
I am not saying this is what your DH is doing but with the new job maybe he is just feeling like a change.
When I am stressed I see DP clicking off pages on the web and texting/whatsapping more than ususal and I make 2 and 2 add up to 22.
I know I am doing it but I can help myself.
You are under a huge amount of stress ATM pls try not to jump to conclusions.
Me and DP are meant to be together but sometimes we both go into self destruct and neither of us knows how to stop.
Luckily so far we have been able to sort it out before it goes too far but when there are SN's in the family it just makes it all soo much harder.
Please try to be kind to yourself
Kidneys seem ok now thanks Madwoman. S'pose at least something got better!
Yep, Mum is supposed to be having the dcs this weekend. To be honest I considered sending dh away, the dcs to mums and having the house to myself for the weekend.
No, I haven't contacted the neuro <I know, I know> it just seemed pointless after the fact. Mum and dh have both told me to contact her, but I just can't face it.
Yes, dh's Saturday revelation was a plausible-ish excuse for that particular let-down - sadly not for others.
NoHaudin, it was video evidence of one of these attacks that launched the whole MRI (which found new lesions), lumbar puncture (which was negative) and evoked potentials (also negative) thing this time last year - although the attacks were actually in the spring and I hadn't had one for months by the time the tests took place.
They told me I was basically down as 'probably MS' and that wouldn't change until either I as dx with something else or there was more definitive clinical evidence for a full MS dx.
Then suddenly for no apparent reason, at the last appointment they did a turnaround, put me on 12 month instead of 6 month review and said def not MS - haven't a clue what it is - see you in 12 months. They did say I should contact them if I have any new 'serious' neuro symptoms, by which she said she meant, weakness on one side of the body or problems with the function of bladder or bowel. I'm guessing that, as I've had this type of attack before and the symptoms are all documented - nothing new, that there's no point in contacting her again. She said if nothing more significant arises, they will look at repeating the tests in two years. Well, actually they won't because I am NEVER having another brain MRI again in my life - two is two too many (seriously claustrophobic).
Lots of people, including my physio have suggested the Complex Regional Pain Syndrome, is connected, as it is a malfunction of the nervous system and that I should inform her that it's happened.
Oddly, when I was in hospital for blood tests during my recent kidney infection I saw her and thought I should perhaps go up and speak to her. Unfortunately I just felt too ill to get up and walk across the corridor to where she was standing.
Personally, I have feeling it's all connected to the hypermobility/EDS stuff we have going on in the family. Apparently my lesions are too vascular to be typically MS, but not vascular enough to be TIA or dementia related. The vascular element raises questions for me about EDS, especially as some of the symptoms of CRPS are also vascular in origin.
Unfortunately I think it is all such a tangled mess of connections that there's little hope of the NHS unpicking it all and coming up with potential treatment/solutions.
Ineed - he admitted he cleared the cache because he didn't want me - or the dcs to see what he'd been browsing - on the family laptop, while I was
potentially seriously ill in bed upstairs!
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