Hi everyone,

Feeling like I'm losing my way. Just can't see the way forward!

We saw CAMHS psychologist a week and a half ago. He's been doing an autism assessment - I'm not sure whether he is going to be able to diagnose though as my son answered questions with 'I don't know' a lot. Just phoned psychologist to try to get an update but he was very vague and said he should have a report next week.

Psychologist previously recommended that we apply for a statement as he thinks my son may be better off at a specialist ASD school. So, we're going down this route ... but it's a lengthy process. And will I ever get him to a new school anyway?!

We've seen EWO once and she's spoken to psychologist. So, she's not about to prosecute us - but equally isn't offering any other help (maybe because my son's current school is an independent)

Meanwhile my son's sleeping pattern is getting worse & worse. He is still determined to stay awake all night - and I just never know from day to day when he is going to be asleep or awake. Even at the weekend he wouldn't sleep normally, so we couldn't go out anywhere. And while his sleep is all over the place, even if there was any help available it would be impossible to get him to appointments.

My son is still saying the reason he can't go to his current school is because of the other children and them asking him where he's been etc. he says he would need to change his identity to go back.

I've tried to suggest that if he sleeps normally I can take him out to some interesting places during the week - in the hope that he can be educated a little in that way. But he says that he should be in school and people will ask why he's not - I've said that we'll just say we're home educating, but he won't go along with that.

I'm just not knowing where to turn and feeling like I'm making no progress! Maybe there isn't anything I can do at the moment and I just need to sit tight, but I just feel like I'm losing my son and I don't seem to be able to help him.

Sharon

Hi Sharon,

My daughter was very like this when we started on this long road. She couldn't sleep at night but slept most of the day. She said that she couldn't sleep because the minute she tried the worry monsters in her head would be up and partying and also like your son the main reason she hasn't been able to go back to school is because of people asking questions and how she will answer them. The hard thing for her is that she finds it very difficult to make up a flipant answer or even tell a lie because her worry then is that someone will catch her out and make things worse, she also thinks that she has to tell people things when they ask and just can't tell them to mind their own business. This whole thing started with so called friend passing a comment about her which she took to heart and it snowballed in her head.

What I have done over the last few months is talk to her about life, and my experiences of people that I have met in life and to be honest have laid it on the line to her that actually no one at school could really give two hoots about why she is off and that while she is sitting here at home worrying they are getting on with their lives. Now I am not saying that this has totally worked and she is still no where near to getting back to school, but she is sleeping at nights and is much more relaxed and happy about life, she misses her friends but as only a couple have actually kept in regular contact with her she can see it for what it is now, that everyone is only actually interested in a bit of gossip and that they move on very quickly.

I have also spent a lot of time talking to her and explaining that this is something that is not her fault and that together we can get through this. I am worn out with talking and going over things but little by little her mood has changed and lifted and this has especially happended since the home tutoring has started and she has had a boost because she can do the work still whereas I think she had got it into her head that she would have forgotten everything she has learnt and be so far behind that people would laugh at her. Her tutor praises her all the time and tells her how well she is doing and her self esteem and confidence is growing every day. So much so that she actually had a heated debate on twitter the other day with one of her so called friends who was part of the trigger that started this whole episode. I was so proud of her because up until now she shyed away from any confrontation even online.

Life is hard and I am sorry that my daughter has had to learn these lessons at such an early age but I am sure that when she gets through this she will be a much stronger person ready to take on the world although I am sure like me she will still always go over everything in her head whilst on the outside we look as if we are totally in control. (I am like a duck, calm and controlled on the surface but under the water pedalling like mad to keep my head above water)

If I could give you any advice Sharon it would be to give him time and try not to get stressed about it, if you can get him to talk and open up fantastic but one thing I have learnt from our experience with our daughter is that she changed once she stopped feeling guilty for what was happening and that none of it was her fault.

Take care

Sue X

Sharon,
you are doing what your son needs you to do at the minute and that is allowing him the time for him to come through all this and being there, supporting him unconditionally. big hugs coming your way!
My son's body clock was totally upturned for a long time and he was prescribed melatonin to help with that. Late drives to places he knew no one knew him also got him out . I have been blessed with a super camhs worker and also support from the e.w.o.but it all takes time and many faltering steps along the way. Can your son's appointments be made for late afternoon if that would help? You are not losing your son he's just taking a little breather from life's stresses at the moment and he will be back with a greater insight of himself and others when he is ready.
Take care,
love Lindy x

hi Sharon,

It's tough, isn't it. All that draining of energy trying to get your son to understand. I think Sue and Lindy's posts have hit the point really that might help - in regards to stepping back and just being there for your son as well as trying not to let guilt eat you away.

I found that the stepping back advice that someone on here gave me a few years ago was the start of my change of attitude. It was also the start of getting my son back. It became me and my son working together to help him with something he couldn't help - rather than me trying to get him to school because I felt so guilty if he didn't go and the school was getting on my back. It takes awhile just to embrace our children where they are as we are not quite sure where they are! But it also builds trust. This doesn't mean my son doesn't sometimes still loose the plot and blame me for everything! But...he has not sunk into a depression since I changed my attitude. The cognitive behaviour also helped him recognise his thoughts and accept he had anxiety. He is not so good at changing thoughts in the heat of the moment - but afterwards is able to see what happened, whereas before this he would not want to acknowledge anything and blamed everyone else and of course me for just not understanding.

As for the sleep. That seems to be a common problem on here. At the height of my son's anxiety - he said he did not want to sleep as that brought the morning closer. I still struggle and he does not seem to connect feeling lousy and tired in a morning with his late nights. I have to keep trying though - so whilst it wears me out - I still aim for an early night! And I am still working on removal of all technology by 8pm. My biggest problem is being consistent when I feel tired and worn out (as we do!). But I guess you could also try the technology off/removal by a certain time so that their thoughts can wind down. And Virginia and others have mentioned melatonin. I have not tried that - the doctors don't seem keen on that here.
Sorry - not sure if I have helped but we understand how you must be feeling. Take some time our for yourself - give yourself a treat - you deserve it - and hopefully you will gain some strength back to move forward again.
Take care,
Linda xx

Hi Sharon,

Your son sounds very much like my daughter, she's 12. She also is being assessed for Autism and will answer questions she's asked in assessments with 'I don't know', my niece has recently been diagnosed with ASD and she also answered with a lot of 'I don't know's' so I guess this is pretty common. We have always had problems with my daughters sleep patterns too, she's asleep right now after being awake until 5am this morning. Your situation sounds so much like mine it's uncanny, it's really hard work having to chase CAMHS constantly as well as deal with school and your child. It does leave you feeling dispondant and there are days when you feel no one is taking you seriously. How old is your son, is he comp age? I find the service you recieve from CAMHS very hit and miss, it's taken lots of pushing to get them to take any notice of us at all.
Hope you manage to get something sorted soon.

Take care

Andrea x

Hi
Sorry to read your going through a tough time.
Stick with this site it's wonderful for support and understanding.
I can't blame kids for answering 'I don't know' at times to questions. Perhaps they genuinely don't know. Can we blame them. I don't think I was too fond of answering endless questions at 12 either. lol.
Hang in there, you sound like your doing your best. It is stressful and hard but one day at a time.
Good luck.

Virginia

Thank you so much for all your replies. It really does help.

I try to talk to my son during quiet, calm times - but the opportunities seem few and far between and he really doesn't open up about how he feels. He spends a lot of time with the computer which I don't like but it is so hard to do anything about (especially if he wakes up when I want to go to bed!) This morning he has actually spent some time with me which makes a change, he's played a game, done some cooking and then watched some Top Gear (at least he wasn't in front of the computer!) I wanted to keep him up as long as possible to try to get his sleep back towards normal, but I couldn't stop him going up to bed about 1.30pm. Read him some of the 'Groovy Greeks' book while he fell asleep.

Our GP is prescribing melatonin (we saw a private psychiatrist back in November who asked him to prescribe it for us) It can work, but in general he doesn't want to go to sleep and he'll fight the effects of the melatonin.

Over the last few days he's been sleeping from lunchtime till 10 or 11pm and then staying awake all night. So it's a hard slog to try to get the sleep back towards normal. And then whenever we think we're getting back to something more normal, he'll suddenly stay awake for longer than you'd think possible and he's back to being awake all night again! But I suppose that sleep is the one thing he can control and he is really using that.

Lindy, yes, the appointments with CAMHS psychologist have been late afternoon - although my son's sleep is so unpredictable that I never know when he will be awake, and this week he's sleeping in the afternoons! We've only seen the CAMHS psychologist 4 times, and that's over a 4 month period - I had imagined appointments would have been more frequent, he had mentioned CBT in the first appointment but after that he seemed to change his mind and has only been focusing on the autism assessment.

Andrea, my son's 12, Yr7. Started a new school September 2011 for Yr 7 (a small independent school), we only got as far as Oct half-term. Thought that maybe we'd just chosen wrong school so tried another in January (independent and one that was more geared towards children who struggle in mainstream for whatever reason), but we only managed to limp through to Feb half-term. Although he was managing to fall asleep at a reasonable time, he just wouldn't get up in the mornings, so I would take him to school at whatever time I could get him up. But then the other children would ask him where he'd been and he just couldn't cope with it. So we managed 2 days after Feb half-term and then nothing since.

I think that if I could at least get his sleep to somewhere approaching normal then I might feel a little more settled. But, we've always struggled with his sleep, so it's probably never going to be perfect. At primary school he wouldn't fall asleep till very late - but then he'd just get by on less sleep.

I really appreciate all your replies.

Sharon x

Virginia - yes, I think I can understand 12 yr olds saying 'I don't know' too! If somebody had asked me questions at that age about how I felt or what made me happy or sad I don't think I'd have wanted to tell them either. I'm quite surprised that the autism assessment interview has questions that children just won't want to answer - it's hard to tell whether 'I don't know' means they really don't know or whether it means 'I don't want to tell you'. I'd have thought there were other ways to get the information by having a bit more of a conversation with the child - rather than asking a short simple question which all seemed a bit cold. Luckily when it came to the bit where things were a little more interactive with objects or he was shown pictures etc. and asked about them he did at least talk!

Sharon x

Hi Sharon,

We had the same problem with the computer and it caused more arguments between me and my daughter than her actually not going to school. My hubby said to me one day, "just leave her with it, it is all she has at the moment" and when I thought about it he was right it was all she had. Once I relaxed about it and left her to it she actually got bored of it and didn't go on it for as long, it was as if it was the only thing that she felt she had but also had control over when she no longer was able to control her feelings or anything else in her life. Hang in their Sharon, we are all in the same boat and I know for me it is lovely to know that I am not alone and others do know how it feels.

Sue

Hi Sharon,

I can't offer much advice I'm afraid as I am in the same place as you. In fact having a bad week. Can you not contact your EWO and ask about home tutoring. My friend whose daughter is 13 is also an SR has just been awarded home tutoring. The tutor comes every morning and even does cooking with her. When it comes to GCSE's, she will even go with her to the centre and wait for her. She asked her LEA about tutoring for my son as he was also in the private sector and she said it depends on the LEA. How wrong is that! I am in the process of gathering all my paper work before I approach mine.

Sharon, there is a letter on the blog section of this website from a couple of years ago- I have cut and pasted an important part re the the education act.


'....I would like to direct you to to the 1996 Education Act "The parent of every child of compulsory school age shall cause him to receive efficient full-time education suitable ;
a) to his age, ability, and aptitude, and
b) to any special educational needs he may have,
either by regular attendance at school or otherwise."

its under the date of June 2010 in the blog section. Have a look and see if it can give you some ideas on how to proceed. I am taking a back seat and leaving my son alone. I am paying for a private tutor who comes 3 times a week to do maths and science and I know this is not enough. But my son is engaging so that is something. I am trying to build up the strength for the my next battle, probably with my EWO!

Try and stay strong, I know it helps me to know I am not alone.

Sophy x

Sharon, that's uncanny, my daughter also year 7 managed until October half term also, she only went in for a couple of odd days after that!! She two was refered to a specialist school, where there are only 3 pupils in a class, again she managed a few weeks and then dropped out!