It saddens me to read so many stories where families struggle to get the professional support
they so greatly need.I too was one of those parents for 5 years so you all have my deepest sympathy. I worried my son wouldn't get any qualifications and his future terrified me. My son was a total refuser and turned aggrophobic for 2years, suffered awful panic attacks and had no confidence. I'm now preparing for his 18th birthday and how life has changed. He has friends girl friend and so much more confidence and has a great social life and found his way in life I have no magic formula but took a step back and took the pressure off him once he had officially left school - no more camhs or meetings and time to breathe for both of us and slowly it worked. If my son can do it believe me anyone can never give up hope xxxx

Thank you

Hi Simon - I would have hoped by now there would have been more help for the condition my heart goes out to all on here. Hope you and the family are well. Sarah x

What great news Sarah,

I am hoping that we are on the same track as my son has now been at his new school for a week with only one blip which was soon sorted.

I suspect the road out of this is slightly different for different children/families but I do think taking the pressure off really helps. The endless meetings we attended at my son's previous school did not move us forward and just made me feel worse as they were often quite negative in tone. So negative, in fact that I did not take my son to many of them as I knew he would only end up feeling worse too.

The main difference with the new school is their tremendously positive, "can do" attitude. My son's situation is a little complicated as he started having problems due to a physical condition causing regular pain. Then as he got more in control of the physical problems, he started to have intense and prolonged pain responses every time he was under stress. The previous school managed to ratchet the stress levels up even higher so he just got worse and worse until he was unable to walk. By that time taking him out of school altogether for a while seemed the only useful option open to us. This new school is prepared to look at what he needs and how things can be adapted to help him.

I share your frustration, Sarah, that things have not improved over the years. At my son's previous school there were a number of children struggling to get in through the door and I met most of them and their parents while my child was struggling to do the same thing. You'd think a school in that situation might start looking at it's own policies and structure to see how matters could be improved. But no, just more of the same old strategies of threatening children and parents with attendance officers (formerly EWOs) that clearly do not work. Depressingly, there is so much pressure on schools to be statistically successful that I cannot see many breaking out of the mould. I think my son's new school is the only one in the area to have such a positive outlook and such a strong concern for pupil welfare.

Leah your new school sounds very positive so pleased for you. I recently went to school to support a family who's son has started to refuse and the ewo was quite nice actually and supportive, but think she was a little taken aback by my knowledge of the situation lol - its so different when you haven't got an emotional connection with the child so different when its not your own. The child in this case is just I believe just can't be bothered to go and no sign of anxiety or similar, but still difficult for the family who are struggling. I wish you all the luck in the world - hang in there and you aren't on your own x

Dear Sarah

Thank you so much for posting your message of encouragement.

We are really in the eye of the storm at the moment with our 14 year old daughter. I try not to think too much about the future at the moment, as I don't think it is helpful (though not always possible to do this). We have removed as much pressure as possible and are awaiting a visit from the EWO tomorrow. It is interesting though how our daughter had no problem cheering her brother on this weekend when he was running in a local 10k race, even though she saw school friends there. When I mentioned this (as I thought she may have refused to go and see him) she said but it wasn't at school Mum, so there was no problem. On the one hand this is quite encouraging, but then I have to remind myself that she feels differently about going to school. She does seem fine when she is with her immediate family and is spending many hours with her brother. Though this is good, I would really like to see her spending time with friends, as I can see this slipping away. I did praise her for cheering her brother on, but she didn't seem to recognise that this was a real positive.

Anyway, we'll just keep going, but as you all know, it's a marathon, not a sprint.

Good luck to you all and great news about your son Sarah.

Regards.

Hi Sarah

Good to hear from you again and have an update. Always gives me hope... : )

And hang in there Sharry - your daughter sounds like she is trying to build up her confidence and confidence outside school might transfer itself to being able to manage school or some form of education in the long term. All good : )
Take care
Linda

You have to remember school isn't for everyone. If I knew then what I know now I would have saved myself lots of worry and sleepless nights. I wouldn't change how my son has turned out for the world. Our children are good kids we have to remember that. Take care all xx

Hi
I posted on here over 2 years ago but cant remember my previous anonymised username! My son was a nightmare around puberty..violent towards me always in detention and in year 9 started to school refuse. We changed his school and he virtually stopped going for his last 2 years. We went to camhs ...useful as a chocolate teapot....he hid under the table first appointment and refused to attend the second so was discharged. We filled in questionnaires that showed he had asperger traits but we never had a diagnosis. He went into school only to sit his Gcses and passed them all incredibly. Only then free from school did we we see a turning point when he finly got some control over his own life. He chose his own college his own subjects and for the last 2 years attended every single day and ended up with the highest grades possible. He went onto choose his own university and last week he drove there by himself in his own car. He continues to be exasperating with obsessive tendencies and meltdowns at home ( now expressed in throwing objects ..)whenever he is frustrated with changes...but finally I can see hope. After years of wanting either to escape from him or for him to board somewhere..i now actually miss him as he begins a new season of his life...and I am proud of what he has achieved. ...its a shame his teachers wrote him off....but we are both free of an education system badly in need of education.

Hi 'Forgetful'

What a change for your son! And you! I am so glad you came back on here and gave an update as to where things are because often we just don't know what happens after school.
I think school is just such an unnatural place for our kind of kids - it traumatises them and makes their self esteem plummet. No where else in life do they have to face so many of their peers at once - feel judged every second of the day and have to 'perform' on a regular basis. Some kids sail through that - others - like ours - just find it so confronting.

Your story gives us who are still struggling at the school end, lots of hope. I have also seen glimpses of my son in outside school situations and it gives me great hope that the future will not be so bad.

Perhaps one day when schools embrace diversity and stop giving the same assessment expectations to all - and give options - and provide smaller school environments - the list could go on......then our kids might find they can manage school.
Thanks again for sharing - I really appreciated reading that - and it gives me a more positive feeling from where we are sitting right now.
Take care - and enjoy your time you can now relax and be yourself. You have been a terrific support for your son through what appears to have been some very challenging times!!
Linda

Never give up hope...

And we must never give up on our children. A promise i made to myself a few years ago, and I still have to remind myself of this from time to time.

Hi All

I agree so much with the sntiment 'never give up hope' and never give up on our kids.

while some schools and professionals are great in dealing with children with SR, for the majority i have to say, it's like they never heard of it and never experienced a child who refused to go to school for any reason.

i suspect little will change in the near future.

so it's up to the parents to fight for everything little bit of help that is needed.

i see such a change in my daughter since she started to 'own' her life. she's a new, confident person and it makes my heart sing.

wishing you all the very best

Virginia

Dear All - I think the 'never give up hope' is so important. I often say this to my daughter, but sometimes it is difficult for her to believe it. I also often say that this is an illness and we will get through it.

We are still no further forward going to school - still seems so far away, but my girl is keeping in touch (albeit on her iPad) with friends.

Time goes on and though we are making progress on other fronts, school is a huge challenge.

It is so hard for her friends to understand how ill my girl is and that even walking down the street is a challenge (in case she sees anyone she knows).

I have reached breaking point a number of times, but then seem to find extra strength - but it is so testing.

Anyway, good luck to you all.

Regards x

Hi Sharry

Good to hear from you again but not so good to hear things are still pretty tough at your end. I know how you feel - and that point of despair seems to keep on coming back, doesn't it.

What I can say, however, is that my son also went through a 'stage' that you daughter is going through. He was refusing to leave the house, would not go down the street, was terrified of meeting anyone he knew, would draw the curtains so that if someone came to the front door no-one would see him. It was at the end of my tether as I also felt like I was captive to his anxiety and was forever trying to re-open curtains and get out of the house myself. I thought it would never end and had no idea how we were to move forward. But slowly something started changing. He started asking to go for drives in the car (I think someone on here had suggested this to me).

After several months he was able to go to the shops with me, walk the dogs around the block (no further!) and visit my mum again. It took him probably 18 months to move out of this phase. Now he even visited at home a neighbor's teenage boy who had had an operation - even accepting afternoon tea (usually wouldn't have eaten anything). We go shopping - and until he changed schools - was fine going into the local supermarket and shopping centre. Now that he has changed schools - I think he feels if he meets someone they will ask questions - so he will only shop further away. I knew we had stepped forward greatly when last mother's day he was able to go to the flower shop on his own (I was parked further down the street) and come back with a bunch of flowers and a big smile. I think it was the smile that really made my day : )

So whilst school is still a huge challenge for him - he did come out of that awful agoraphobia stage. So here's hoping that your daughter will do the same. But give the drives a go. We never got out on those drives - we just drove. At first I hated them ...but after awhile I used it to familiarise myself with places in my city I had never been before! If you are not in a city - just drives in the countryside is therapeutic.
It is also great that your daughter is keeping in touch with her friends. My son let that slide and he now regrets it.
Hang in there - you are doing all you can. Schooling and socialising will happen again some time. Small steps are all good. Even just going out the front door each day and back again might be something you set as a challenge. I remember talking to an adult who had had agoraphobia and she said she had to challenge herself with what seems silly tasks but helped enormously...going to front door, going out front door, going out front door and walking a few steps, going down to letterbox, walking down to street curb, walking a few steps in street etc. She said it took her weeks but her persistence paid off and finally she was able to get back into the world again.
Take care - stay in touch
LInda