Need to hear that DS will be alright

[Perchkin]

My very first post here.
I'm posting because I am beside myself with worry about my DS and I need someone to tell me that it will be all right and things won't necessarily spiral out of control :(.

A bit of background; My DS is 5 and almost certainly ASD/Aspergers. He has SPD and I worry that he also has ADHD. I have known he was "different" since a very, very early age and have consequently worked hard on getting him lots of support and help early on. He is exceptionally bright (e.g. reading by age 2) but struggles with his social skills. He is at private school where the class sizes are small and he has so far thrived there and has been extremely happy. He saw an Ed Psych when in nursery and reception and she has been very happy with his progress and feels "he will be just fine". He also sees an occupational therapist for his SPD and has a daily sensory diet. Last year he also started seeing a SLT who was working with him to improve his communication and social skills. Until very recently he has managed to "fit in" and I had no need to announce that he had special needs and indeed very few people realise that he has.

He started year 1 in September and both the school and ourselves prepared him very well for the change. In fact we did such a good job that he raced into school every day as happy as anything, whilst all his class mates struggled with the change and cried for the first two weeks!

However, everything has changed and I am struggling to both understand what is going on and to cope with my own emotions.
He is so stressed out and anxious that at the end of last term he stopped eating - completely :(. And he seemed so sad :(. I have tried talking to him but I don't think he really understands what the problem is himself. A few comments he has made during the last term rang alarm bells but I didn't think he was this anxious and stressed. He sorrowfully asks me "why am I not hungry any more mummy?". At the end of term performance he was removed from the school hall kicking and screaming and utterly desperate and out of control :(. At the brief parents evening, his teachers had nothing positive to say about him at all and the discussion was all about how he gets so worked up and unhappy.

Over the half term break i have slowly got things back on track re the eating but he has not been his usual self and we have back tracked to the stage of having total meltdowns every day about something or other. His happy go lucky self had returned however.

I believe (but could be wrong) that his severe anxiety is due to the fact that he feels he has no control over anything. Not eating is his way of regaining that control that he needs.

I had hoped it was a blip and that i could sort him out over the half term and everything would be fine. That's what I desperately wanted anyway. But this morning he became so anxious and quiet on the way to school. He thought he'd messed his trousers - cue upset (he hadn't), then needed to do a wee - cue upset because he thought he'd miss the bell, then had difficulty carrying all his bags - cue near meltdown/upset. He told me he felt lonely and asked me "why am I not happy going to school these days mummy". Today I took him into class and carried all his bags for him because I know that he really needs the extra help and support at the moment.

But I am so desperately upset for him. I'm sitting here worrying myself silly about how he is managing. I don't think his new teachers "get him" and I think they don't like him or are finding him difficult.

I have asked for a meeting with the school SENCO and left a message for his Ed Psych to get back to me. My mind is racing into overdrive and imagining all sorts of issues and problems for him and I suddenly feel very worried about his future :(.

I think I need someone to make me get it all in perspective and to hear that it will all sort itself out.

I'm so sorry this is so long but I wanted to include some details/background

I haven't really got anything to contribute from my own experience, because my DS is very much in the same place, except that his school have not been very supportive and have effectively kicked him out.

But I think it's encouraging that you were able to help him with the right approach, you calmed him down and got him to start eating again, you have put him back on the right track. I think it shows that with the right support in the right places, your DS will be happy.

At 5, like my DS, it's so hard for them to know how to manage any of this themselves. I have hope that one day my DS will be able to recognise the feelings of stress coming on and that he will be able to manage himself too.

I too worry desperately about the future. I spend far too much time imagining a very bleak future where DS ends up in prison because no one has ever taken the time to treat him as anything other than trouble.

To that end, actively seeking a diagnosis has helped us. I find everything so much easier to cope with now that I have something to Google, a word to tell people when he is having a meltdown etc. I have found that a diagnosis opens doors and makes people listen to you.

I don't know if any of that is any help or comfort, but this board is very very good at helping you to feel less alone. Hopefully someone will be along in a bit with a few more years' experience under their belts.

Perchkin, I think its really important the assessment process happens for your son. He is bright and he just needs pushing in the right direction.

I have to say i also thought of a private school for my child but changed my mind after reading some posts from TOWIE and also thinking long and hard about the possibility of my sons ASD getting worse. I just felt in a private setting it would be much harder to monitor.

School is bothering your son. There's no doubt about that.
An ed Psy - a good one - are worth their weight in gold and can do a fairly in-depth assessment quite quickly. I wouldn't wait, if you have the finances go private for that. The school will be happy to support that i bet also.

It irks e when teachers have v little positive things to say - its like there's some sort of hidden agenda there, who doesn't have any positives? Every child, EVERY CHILD has.
You need to start thinking quickly by getting the school on board and ed psy.

Above all else, your son will be ok. He has you to fight for all the support he may need. We are right here to help.

Thank you so much for your replies.
Sahkoora I'm so sorry to hear that you are struggling and getting little support from the school. It's so hard isn't it.

Polter & lesley we are not in any formal assessment process as such. I've really been doing all this on my own since he was very tiny. I started searching for a school for him when he was 2 and eventually settled on the one he is in now. I contacted the schools Senco before he started in nursery and had him assessed by an EP at that time too, who wdvised the school on what they needed to do to support him. At this stage he was a little genius who was a bit different from his peers. I got an OT involved when I realised he had some propriocepton and sensory issues. The SLT has been more recently implemented (since half way through reception). I have done all of this privately and the cost is crippling :(. However all the specialists are in agreement and working together. They agree that the small class size is really important for him (currently there are 8 in his class) And the school were fantastic when he was in reception. Most people have seen my small DS as quirky and cute and clever and funny and adorable. But the older he gets the more obvious the differences are and it hurts so much when I see him playing odd games by himself in the playground and seeing him struggle in the school play. everyone laughs at him and says what a character he is, but I feel this real and deep physical pain when I watch him. It hurts so much these days and the tears flow :(.

And the pain I have been feeling these last few weeks when i can now see he is suffering too has been unbearable :(.

But I have pulled myself together this week and gone in to speak with the school Senco and his teachers. I have a lovely new SLT going in to assess him tomorrow and I have made it very clear to all his teachers that they need to support him more at the moment. That he needs help with things such as carrying his bags, getting changed, attending assemblies and preparing him for transitions. These are all things that he had made such good progress with but he is currently so stressed that any little stresses that can be removed need to be for the time being. I think they are listening to me. I also intend to go in and speak to the head. I have worked so hard over the last 3 years to try and get everything in place for him to try and pre-empt just these sorts of problems and it was going so well until this school year where it seems we have gone back so much. He has a major meltdown every day now and can not deal with changes to his routine (even waking up is an issue atm if he wakes up after he should - sigh).

I am so proud of my DS. He is kind and funny and so clever and individual and full of life and character. But I think I am exhausted and have little support of my own. And that real and primal pain I am feeling when I watch him hurts so much at the moment. I never knew I could feel like that.

His class teachers said he had a good day today. But his music teacher told me he was very tearful in her lesson and said "Mrs M, I am so very lonely" :(

There are so many of you on here with harder struggles than I have been having and my heart goes out to you.

I have also contacted his EP and asked her to meet and chat with me, and to assess how he is getting on. I'm waiting for her to get back to me.

I forgot to add that just before half term he ended up being removed from the school hall during the end of term performance kicking and screaming and having a total meltdown. You could hear him continuing from several floors and rooms away. We were there in the audience with all the other parents and it was just awful. I wasn't ashamed or embarrassed, just so very pained for him. And I already knew. I had said to my OH that I was dreading the school play because I sensed something was very wrong and he wasn't coping :(.

I now know that he was getting upset often at school and not coping with classes and transitions and circle time and playtime and.......
And i didn't have an inkling to any of this until he stopped eating - he hid it so well with his ADHD ways :(

I've just had an email from the EP with a view to seeing him next term (by which I assume she means next year Jan 2014 onwards).
I feel that's too long to wait given the current situation. Am I being unreasonable?

I have now spoken with the schools head and feel a little reassured that steps will be taken to improve things for DS in class. I also have a new SLT on board who has started her assessment of DS.

It seems such a difficult time at the moment. All his behaviour traits are worrying me. How good it would be to be able to see into the future and know what lies ahead :(