Aspergers/ASD support thread

Snaggles

No, it's definitely not suitable for everyone - in fact I was completely amazed to find it worked for Ryan!

I'm feeling a bit the same as you, lost and bewildered and as though I'm doing everything wrong. You can only try your best though, and it doesn't matter if you make mistakes - you just learn from them and try again.

I'm just pinching this quote from Savvy-Sue, because it says it better that I ever could:

So, let's get this straight. If you were a DIFFERENT parent, your child might be DIFFERENT. But they'd still have AS, ADHD, blue eyes, brown hair, big feet, a delightful smile (however rarely seen). However, you are most definitely the BEST PARENT YOUR CHILD WILL EVER HAVE! No-one could love them more or care for them better.

sarah1975uk

Im also having problems with getting diagnosis formally for my son who is now 9. Had problems for years, now regressing so now 9 yr old acting like 4 year old speach is really bad now and flaps his hands a lot and really poor with eye contact and finds it really hard interacting with others, to name but a few of his problems. Now situation with my son has escelated where hes a bit older now and cant cope at all having oubursts at school where he cant cope. Hes been excluded because school cant cope with him either and now only allowed into school 2 hours a day secluded one to one teaching. Obviously all professionals all involved yet again! now going down the route of statementing. Hes been diagnosed dyslexic and throughout all his medical notes its says query autism/adhd. Educational psychologist has recently done an autism assesment on him (prior to this he was telling me showing signs of autism on his previous observations & by school observations) now i called them today to find out if formal diagnosis has been done and telling me mmmm out of all the boxes in 3 differnt areas my son is showing a lot of signs but not all! flamin ech either he has it or he doesnt for goodness sake. Not everyone is the same for example someone is deaf in one ear and another is deaf in both ears does that mean deaf or not ?? Feel like banging my head against a brick wall, and still no further forward to knowing what is happening with my son tomorrow let alone long term. I have had to go off sick from work to try and safeguard my job due to the fact that i cant just go to work for 2 hours a day as rest of the day i am having to be at home caring for my son. I have looked into moving him to another school, but been told better not to do it yet statement should hopefully be through in february and i can specifiy in the statement a different school that would be better suited to my sons needs.

Savvy_Sue

So I say again, IPSEA ... It really is scandalous that children with special needs are excluded rather than given statements and the help and support they need!

But Sarah, the other thing to remember is that it's a syndrome, the range is huge, your son doesn't have to 'tick all the boxes' to 'have it'.

And a diagnosis is not necessary for a statement!

Sorry, brain not working well, better go to bed ...

sarah1975uk

Savvy_Sue wrote: »

So I say again, IPSEA ... It really is scandalous that children with special needs are excluded rather than given statements and the help and support they need!

But Sarah, the other thing to remember is that it's a syndrome, the range is huge, your son doesn't have to 'tick all the boxes' to 'have it'.

And a diagnosis is not necessary for a statement!

Sorry, brain not working well, better go to bed ...

I obviosly dont want my son to be labelled at all! BUT! reality is that he has medical problems that so many professionals are recognising but the school and education system at the moment know these too BUT due to technicallity of a child being either labelled as Autistic or labelled as a naughty out of control little boy! the latter not getting any help just being excluded and ostratised (ok its late i cant spell lol) If my son has to have a million labels to get the help he desperately needs and DESERVES then so be it.

Snaggles

Hi Sarah, firstly you sound really upset and stressed out, so (((hugs))).

All I can say is just keep pushing them for a diagnosis, sometimes it just comes down to who shouts the loudest. Also, maybe keep a diary of the behaviour issues, so that you have 'evidence' and examples if they ask you how he behaves in certain situations.

I hope that you get the statement soon so you can get the help your son needs.

sarah1975uk

Snaggles wrote: »

Hi Sarah, firstly you sound really upset and stressed out, so (((hugs))).

All I can say is just keep pushing them for a diagnosis, sometimes it just comes down to who shouts the loudest. Also, maybe keep a diary of the behaviour issues, so that you have 'evidence' and examples if they ask you how he behaves in certain situations.

I hope that you get the statement soon so you can get the help your son needs.

you wouldnt beleive what the school have done to my son they have had the police out to him when ive been phoned and 15 mins away and put into handcuffs, ive been phoned every day to leave work and go and get him, and also walked into a class room with 4 teachers hold him down and son so upset and distressed that he tells me he feels not good enough.

Snaggles

That's really awful, what a nightmare for you. Is taking some leave from work an option? Would the school be able to set some work for you to do at home with him? (I don't know if this is an option or not, but I know I just wouldn't want my son to go anywhere where he was being treated like that).

Are you claiming DLA to help with the financial aspects of this (having to take time off work etc)? (you don't actually have to wait for a diagnosis to claim)

I'm going to bed now, but will be back online in the morning at some point. Take care xxx

sarah1975uk

Snaggles wrote: »

That's really awful, what a nightmare for you. Is taking some leave from work an option? Would the school be able to set some work for you to do at home with him? (I don't know if this is an option or not, but I know I just wouldn't want my son to go anywhere where he was being treated like that).

Are you claiming DLA to help with the financial aspects of this (having to take time off work etc)? (you don't actually have to wait for a diagnosis to claim)

I'm going to bed now, but will be back online in the morning at some point. Take care xxx

Hi again I have put a claim in for DLA awaiting a decison;) regarding work bad i know if i take parental leave i dont get paid, if i go off sick for a while i do. and reality is i still have bills and mortgage to pay and am also in an iva so have that to worry about too as well as my 2 other children. As for school work the school do an hour of literacy and an hour of numeracy a day with my son but do not send any work home for him to do with me. I am actually going to view a school on friday as a potential for him to be moved to when the statement hopefully comes through. Also have a review network meeting next week with school lea professionals etc so god knows what they will thow at me this time. The last meeting after he was excludeed there must have been 20 professionals discussing it all and little old me crying my eyes out in the meeting for an hour and a half reading a pretyped report that i compiled about my son and what i would like out of this situation for the best of his development and needs. so glad i typed it all up i would never have remembered it all through the tears.

Today brought me to near breaking point. Before xmas the school head arranged for the WHOLE school including DSP to go to the theatre. The head before xmas said yes ok for my son to go aswell and with his 2 hours in the morning and theatre trip in the PM he was allowed in all day. Yesturday she done a u turn and said he couldnt go, because not enough staff to manage him if he outburst considering the fact they were taking the whole school pupils. SO again he is segregated and left out. I even asked if ok for my mum who lives near the theatre to sit with my son during the performance, the head VIA her secretary said NO! no body then to sit with him on the bus over to the theatre and back. Just flamin excuses so i wrote a really strong letter to which she hasnt yet acknowledged. I hand delivered it this morning so know she has read it!

Snaggles

I think if our children ARE going to stay in mainstream education, there needs to be more awareness of ASD across the board in schools, and that includes everyone - headteachers, teachers, dinner ladies, TAs, NTAs...etc. It wouldn't even have to be intensive training, just the basics, so that they understand how difficult our children find changes of plan and routines, especially last-minute ones (and particularly negative last minute ones like you have experienced Sarah), and things like avoiding sarcasm, metaphors and expressions, and giving clear instructions. They couldn't possibly teach everyone how to handle children like ours, because each one is different, but just a basic awareness would go a long way.

purplewombat

Probably a silly question but.. does anyone know if it is the school that requests a statement does that mean that it only lasts while he is in that school? Or will it carry on when he goes to secondary school also?