I'm lost...in how to help my DS???

[whatthewhatthebleep]

My DS asd/adhd has just started secondary last week....
He has managed 3.5 days (thurs full 1st day, fri half day, mon and tues)...
He was nervous but excited and looking forward to going...thursday and friday seemed to go well and he came home saying he had had a good day, etc...not saying much at all but seemed ok....
He was upset/angry monday morning but he managed to go and he got through the day
Tuesday we had tears, very angry but again he managed to go...was dizzy and tearful at school but got through the day ... became increasing ill feeling with headache and dizzy, terribly pale and I began thinking he maybe had a virus of some kind...we were up for school wednesday morning but he looked awful and the headache was still with him..he was crying and exhausted, black circles around his eyes....so I phoned into school to explain he would be absent.....
He lay in bed all day, slept a bit and watched dvd's, gave him painkillers for his head, etc...eating ok and drinking ok...
Thursday...repeat of wednesday...I talked with him..explaining that I was concerned about his headaches and the dizziness, etc and if he felt no better on friday morning then we would go to see the GP....probably a virus but we will go anyway...
so bedtime came....supper, spoke again about going to GP in the morning.....well he has broken down...in an awful state, seems so overwhelmed, anxious and telling me he just can't go to school...he can't do it....again really angry, shouting through tears and completely distraught....I'm so upset for him but trying to say that he has to go to school...every child must, etc...that I will phone school...discuss things and I promise I will help him to do this and so will his school....he's not convinced though and is just sobbing and sobbing (he rarely has ever really cried much so this is serious shit for him)...I'm heartbroken he is feeling so out of his depth and lost...scared and defeated by it all.

I'm so worried about him...he's ill with all of this, sleepless and in such a negative place with it all.

I just don't know what to say or do to try to alleviate his worries and fears...
He is at the moment got a dvd on with a drink and some custard....I have come away downstairs and am writing this....hoping someone is out there and reading this and may have some advice or something....

He has an 'exceptional needs' statement...1:1 when he needs it and support base to access ....he has gone in with a full timetable but is saying he only feels any relief when he can be in the support base...it's quiet and he feels safer there....he is telling me that he has felt he is going to pass out when he is dizzy....I'm now thinking this is anxiety and panic that's causing his 'illness'....

Oh bless his little heart
He must have been terrified !
Can you explain his hours? 1.1 when he needs it? I dont understand this. How do they make that call ?!!! They should be sticking to him like glue in these first few days IMO to make sure this transition goes smoothly..... THEN back off if they find that he doesn't need siomeone on his shoulder all the time.
Ds ( 15 asd/ dyspraxia ) has 15 hours funded ( no statement)...In practice, there is someone with him in every lesson bar 1. He is totally looked after.
I would have been spitting mad if my ds had come home in that sort of state.
Am on your behalf
This is not good enough.... THEY have mucked up ( not your ds) Phone up school in morning ( keep son at home with you in morning) ... Speak to head of year/ form tutor/ senco and arrange meeting. Did he have transition sessions over the summer hols or anything? How did they SAY they were going to handle his transition to secondry? He needs proper support in place.
Aww... In the meantime I hope your ds calms down and is getting a good nights sleep .Ds's school use an anxiety scale with ds to check on him regularly ( he also panics and faints if things get out of control)... Are they doing stuff like this with your boy? Have they got strategies in place? It doesn't sound good tbh.
Hope you are managing to sleep too! ( bad back is keeping ME up tonight)
Good luck... Just state what your boy needs for this to work.

You're poor little boy! I had tears in my eyes reading you're post, I cant imagine how hard it is for you.
I feel you're son is probably struggling with the huge amount of anxiety that being in a new invironment causes, I don't know what you're sons diagnosis is, but presume he is asd.
Could he possibly be eased into school with an agreed reduced timetable? Or better still , take the pressure of attending off completely with flexible attendance. If you reduce his anxiety about HAVING to go to school in the first place, perhaps the days he goes he will begin the day in a better place, a stronger calmer one where he has been given some control?
I would be concerned with how I'll and tired he look/feels. His emotional well being is , IMO as important if not more important , than getting an education.
He will not learn in that state. Try taking the pressure off completely to see if he
slowly then takes steps to go himself. more important that getting him in, is getting him to be happy to go and happy when he gets home. Not , at the moment,how long he is there.
How was he at his primary school?did he cope with long days there? How is secondary different?
Be strong with his teachers, you know him best, trust you're instincts, they will be right.
Let us know how he gets on. Have a coffee, relax and talk to him, what would he be happy with.
I really hope things improve for you.

Whatthewhatthe I actually feel reading this. Your poor boy. Of course he is going to find the transition hard and I am surprised that school are relying on his asking to access help at this difficult time.
As trout said, he needs full blown support at the moment surely, and to have it reduced bit by bit as he adjusts to the demands.

Can you keep him out til you have chatted to year head/ SENCO?
Does he have a sensory diet to help him manage his own anxiety?

I wrote an email last night and sent it to his Principal Support Teacher...I've just phoned to ask that they pass on a message for her to read her email from me....just waiting for her to call me.

My DS had an enhanced transition in place...he had many visits to HS over several months and was looking forward to going. He actually had a full week before the summer as his primary school couldn't/wouldn't support him to be able to go on his P7 class trip.... so he was familiar, excited and was seemingly in a good frame of mind about going to HS...

In Scotland the support statement doesn't have set hours and is about a level of funding applied to the statement award for the support. The application was asking for 18 hours+ and I was led to believe that the outcome was very positive and they had it all covered and reassured me they would be supporting him full-time with either 1:1 or shared support 2:1 in every class (depending on his needs for different subjects) eg 1:1 for science, woodwork, hands on stuff and sports, etc...actually he has had PE on his timetable on 2 of the days he's been but didn't take part at all (which I expected)...

He was tearful and dizzy on tuesday at school and went to the support base (he told me this though...I didn't get a call about this from school)...I was disappointed the school didn't get in touch about it...if he hadn't been able to tell me...I wouldn't know about it still....I'm a bit annoyed about this tbh....he isn't often able to tell me things and this was important...they should have told me...

I think he will need shorter class time and a staged timetable....and maybe shorter days at the moment...I'm just waiting for a call back to discuss how to go forward from here....
My DS is sleeping still and I'm leaving him...
I wondered about whether he would be following a full time table or if they would stage it gradually as he settled in and felt he could manage more but it seems he has been thrown in at the deep end...and has been drowning and I didn't know it...and they didn't see it either???
I'm so upset but my anger is becoming bigger as I think about this more...they are meant to know what they are doing...I have been trusting them to look after him...and he's now in a really shit place....how does this happen....so badly???...My heart breaks for him...it's so bloody horrible and torturous for him...
I can't make him go there when he's feeling like this...I just can't see him like this....I won't betray him and throw him to the lion's....it's how this feels now...

I have sent email's to his psychiatrist and his CBT therapist...neither is available on the phone today...I'm hoping I will hear from them soon....

He is still sleeping and I'm just glad it is the weekend now...maybe I can help him relax and feel well enough come monday morning....

I've spoken with school now...I passed the phone to my DS....he has agreed he will try to get to school and go to the support base ...from there it will have to be determined what he might manage beyond this....
I'm not so sure come monday that he will even manage to get in his taxi...never mind get ready, etc....

I got an appt for next thursday with his psychiatrist to discuss things....

Awaiting further contact from other prof's and further advice.....

and breathe....we have 2 days to relax and hopefully find a better disposition and a route forward...

whatthe you and poor ds have been through a terrible time (((hugs))) no wonder you are angry. Hopefully have a nice relaxing weekend now that school is off. If ds is unable to get ready for school on monday keep him off until he is ready and take things day by day going on how much he can manage. My ds been off school from november last year (im scotland too) with various problems (anxiety being one) so i know how you feel. Hope your both chilled now have lovely weekend

Thank you shazian ...it's always so difficult to predict....we were both feeling so positive and my DS was in a good place with looking forward to HS....it's such a huge step backwards for him though....

It's horrible when our worst fears seem to be realised....

I was originally going to apply to a small independent school which is specialist in education and my DS needs...but was assured and promised that my DS would have all the support and help he might need....I believed this....3 days in and he's a wreck and I don't know what monday will bring now...or how this can be turned around for him....

Did the school explain what went wrong with the support ?
I hope you both have a lovely relaxing weekend and that he is ok to go after the weekend.

no...the support teacher did say...she had envisioned this possibility and had a good idea that he wasn't coping as well as he was saying he was....it's all a bit ...........
However...I have brought in everyone involved by email and will be being far more robust in what happens next and what they may plan to do to address all this....
I feel bad that I entrusted my DS into this situation and he has ended up in this mess....it just shouldn't happen!!!...when I have been working tirelessly with everyone to make sure they have the clearest picture possible of my DS and his needs and issue's.....it seems I have been only half listened to or something...I don't know how we got to this position...really I don't....I feel so shitty that I didn't realise sooner and had no idea what was happening for him....

He's been being so very brave and trying so hard to cope....it's just awful and I can't help feeling guilty he has gone through all this and I didn't see it or help him sooner....

Aww bless Whatthe poor you dont feel bad you are a brilliant mum it is the school that let your poor ds down, not you. Cant believe the support teacher had an idea he wasnt coping yet did nothing to help . Dont be so hard on yourself after all you did the right things to make the transition go smooth and as ds seemed happy to go HS you werent to know he was so anxious/upset. Hopefully now the school are aware of the situation they will be understanding, sympathetic and more important.... put the proper support in place x

Your poor old DS. Do you think he's been trying really hard at school and managed to appear to be coping? My DS2 is just about to start Y8. He has 20 hours 1:1 but the school have been able to support him full time so far. It takes time for the TAs to get to know your DC and the warning signs that they are struggling but it's a shame they have got it so wrong already.

Try to take a deep breath and start from scratch. The communication is very different in a secondary, parents seem to be kept at arm's length, which is appropriate for NT teens and pre-teens, but not for our DC. Try to find out who you are best to contact and have a daily wrap up with them for the first week or so. The school may be reluctant as they won't be used to so much contact, but it sounds like you will have to be 'firm' with them. They are probably used to dealing with DC whose parents don't give a fuck get so involved.

I really hope it gets better for your DS quickly. Take it gently, go at it just a bit more than he would really like or he may get the wrong messages.

yes you're right ellen ...I know the HS are just getting familiar with him, etc...but one of the biggest area's for him is heightened anxiety and running, hiding, etc...he has floundered alone these days in school and really I think it just hasn't been communicated properly, what his issue's are and the careful eye that should have been on him???
They started him straight into a full timetable too...so this shouldn't have happened either???...I didn't know this was happening....he bowed out of the sports 2 times, was dizzy, crying and stressed and was mindful enough to seek help in the support base and not run off, etc but the school didn't even inform me he had been in the support base in this state....and he may not have told me about this...I would never have known about it.....when I asked about this today...the support teacher verified that yes this had happened....and didn't at the least even apologise for this oversight....

I'm worried that this obvious sign wasn't taken care of and something wasn't done to address it at all.....how bad does he need to be...really???? I'm losing faith rapidly in this and very worried about what may lie ahead because of this....

I like your suggestion about 'checking in' daily, etc...I will definitely be doing this at least for a while....until things settle down ...which I am desperately hoping will happen for him....
I'm sorry I am venting a bit...it's not towards anyone here and I really appreciate the replies from everyone....I'm just...well upset, pissed off and maybe want to lay blame and anger somewhere....I hate that my DS is suffering like this and nobody seems to have bothered it seems...even though he was in this state....I don't understand it...

it's the.... how very fucking dare anyone allow this to fester and do this to my child!!!!....

If he's dizzy try Traveleeze or some other travel sick medicine.

My DS takes one every morning and he no longer feels dizzy.

sorry...I'm not sure of your circumstances but I'm not sure travel sickness is relevant really...is panic and anxiety alleviated by travel pills??...is this wise....really???

I don't mean to be rude but I'm failing to see the connection and why this is a good idea...self medicate with something unrelated to my DS's dizziness....I'm not sure his doctor's would be impressed either tbh...

what the, indigo's circumstances are as complex as most regular posters. And she's not particularly pro-medication for most things (unlike me... powerful prescribed drugs have been blinking marvellous for our family ) so if she says it helped her ds, it really must have.

I'm sure what she meant was, perhaps its worth asking your pharmacist or GP if travel sick pills are worth trying as a temporary quick fix, since they can work for other types of dizziness and sickness too.

Not sure why I'm bothering to reply to you.

But yes, DSs dizzyness appeared to be due to panic and anxiety.

But in reality both the panic and anxiety and the dizzyness was caused by inner ear problems. Which is what travel sickness pills help.

Do you really think its going to hurt to give him something you can buy over the counter at Boots for a few days? Really?

In that case, don't do it. Simples.

I could have just blamed all DSs problems on his Aspergers.

But I didn't.

Instead I have spent all my energy working out what was really causing the Aspergers symptoms, like panic and anxiety, and have been fixing the underlying causes.

With tremendous success.

indigo I only read what seemed a a rather sweeping statement...forgive me for questioning what I read....I don't know your circs, I have no prior reason to feel that your 1st post was so obviously incredibly helpful and had ANY particular grounds to understand what your meaning might be....

When someone sends a statement without some inference to how they came upon a useful 'tool' which has helped them...it isn't automatic for anyone to simply say 'oh, right, sounds great...I'l go and buy some to try then'...I didn't read enough in your post and simply questioned the circumstances and how travel sickness meds were relevant....I can't read your mind, I don't have knowledge of your experience and your post told me nothing to realise how helpful it was....

I hope you understand where I was coming from...and that I had no intent to upset you....or anyone else...

I only asked because I didn't understand and that seemed fair enough to me....I'm sorry you have read me negatively....your post was a statement with nothing to allow me an understanding of where your advice was originating from.

Thank you....I am able to appreciate what you are saying now and will consider trying traveleeze for my DS....curiously...my DS has had grommet 2 times in his early years....I am now wondering if perhaps this dizziness may be due to his ear issue's resurfacing....I will buy some tomorrow and give them a go.....thank you...really
Please don't think harshly of me....

Sorry, I didn't mean to be short with you either.

I guess my first post was a little short in detail :)

I'm not at all surprised your DS has had ear issues in the past. Almost sll kids with ASD did. Almost all kids with ASD have inner ear problems.

I bet he also has tummy problems. Constipation or diarrhoea or bloating. Again, almost all kids with ASD do

yes he often has 'softer' bowels and has been sent home from school for having possible bug and I've had to keep him home 48hrs a few times (school policies on it) but I knew it was 'just him' and how he is....years!!

He's also a child who gets too many headaches and eye twitches or too much blinking (eyes tested) his vision is good but his eye's are 'lazy' (there's a proper Dx name for this condition but I never wrote it down and can't now remember))and he's prone to losing focus, (words and lines move around so he can't follow it properly) and control by most afternoons....we have been trying to do excercises (tromboning, and side to side, etc) to try to strengthen the eye muscles....though we are pretty lax and it's not helped much)

I'm going to try him with the traveleeze and fingers crossed it may help his dizziness and this sort of 'feeling out of it' he describes to me...it really scares him and is probably making it all even worse with his anxieties and fears....

I think I will also go back to GP and find out about referral again for his ear's...to find out if there is something going on I have missed all this time. Did your DC have a further Dx on ears? Have ENT done tests and been able to advise any treatment at all?...Did you happen to just try the anti-sickness meds and found that they helped...??

My mother has had Labarynthitis (spelling???)...she still gets bouts of it when she is run down or has any other bug or sickness....it flares up again...apparentely this will continue for her...I'm going to recommend she try the traveleeze too!!

I'm so glad that you posted a reply to me...it's so uplifting when you feel you can actually DO something to help....thank you indigo

I'm wondering if his ear and inner ear pressure's are the also linked directly to the frequent headaches that he has....it's so good to think I might be uncovering something I can do something about!!

For his bowel problems try going gluten free / dairy free. (If you haven't already).

Very often it makes a dramatic difference. Sometimes it isn't enough and there are even more foods that need to be cut out.

For his vision problems try this eye tracking program.

I got the idea for travel medicine from the book 'Smart, but feeling dumb'.

But, in general, I'm treating DSs inner ear problems with neurodevelopment therapies (First retained reflex therapy, and now Tinsley House). It's going well and he's improved heaps.

So the travel sick medicine is only a temporary solution till the neurodevelopment therapy actually fixes the inner ear problem.

brilliant indigo ...you have given me loads to be looking into and finding out about....
I'll look for the book, bookmark the eye tracking link you gave me and look into tinsley house....and who, what, etc this is....

Feeling somewhat clueless and that I should have been doing more for DS....I feel naive and that I have failed to do more to find more ways to help and support him....
I've had barely any back up, support or advice since Dx about what or where to go for advice...and I think I have just been dealing with fall-out within school issues, bullying and things that I haven't been aware of enough and doing more iykwim....just always seeming to be keeping my head above water....missing a lot of things and not feeling able to do more than I was....
My DS was Dx (at long last) at 9yrs old so I was so caught up in the battle of red tape and jumping through hoops, trying to get things heard and supported, etc...I have barely had a breath from things to re-focus on dealing with and studying more to find things of help....I have been reading more recently and since I came onto MN I know much more than I ever have before and really appreciate others experience and advice....
People seem so clued up, where I feel quite ignorant often ....making headway though... .....thank you so much....

MN has been a lifesaver to me.

I have learnt so much from here.

I hope you can start to make some real progress soon.

All I can say is - it can be done. You can significantly improve your DSs symptoms.

Good luck.