Aspergers/ASD support thread

penguin83

Good Luck for tomorrow Sam - we had our first one about 2 weeks ago and it was very detailed but we got some answers - will be thinking of you x x

PasturesNew

penguin83 wrote: »

Morning all - just in case anyone is interested "After Thomas" is on ITV this afternoon at 4. I watched it when it was on last year before we knew A had Autism and it was really good. It is about an Autistic boy and is supposed to be quite realistic. x x

Never heard of it, just spotted this post. Watching it.

NoahsPennilessMummy

Hi
Only just found this thread.

My son Noah has autism. He is now 4 and a half and was diagnosed at 2 so quite early on.

I didnt realise that difficult births are linked with autism. I was induced and it took 3 days to finally give birth, had epidural but it failed freezing only my legs which was helpful....not.
It took the doctors a while to get Noah out as they used ventouse and various forceps to no avail and eventually dragged him out using a huge pair.
He was on the large side at just under 11lbs and he had ripped all my cervix and I had 2 episiotomies.....had to go to theatre to be stitched afterwards.

There were a lot of other problems with the birth mainly down to people not knowing what they were doing and poor attitudes and I struggled to get over the birth not being the experience it should be....i think this contributed to the post natal depression I ended up with....and am still on anti d`s but thats by the by.

Noah cried almost non stop as a baby and nothing seemed to calm him.
He had no interest in toys as he grew into a toddler and didnt seem to know what to do with them. He lined things up and flapped his hands a lot....sadly I had no idea about this being part of autism and I just thought it was cute:o

once he started going to playgroups he would not play with kids and walked up and down flapping away in his own world.
He had no speech or sounds even when getting on for 2 and made no attempt to imitate speech sounds.

I took him to HV who referred him for speech assessment....the SALT told us he had a problem and they suspected ASD. He was referred immediately to a place called Ryegate which is for children with these problems.
He had an assessment and was diagnosed straight away....he started there 3 days a week having speech and play therapy and intense therapy with specially trained nursery nurses.
He was there a year and got a statement straight away.
He went to mainstream nursery with full time support and this week started mainstream school( after a long battle with school and LEA)....he has support 15 hours per week but am fighting for more.

I love Noah more than anything and would not change him as it wouldnt be him without his ways......am gradually learning how to adapt things to help him.
Somedays I do wish we could eat out now and again......an absolute no no....and that we could go shopping without having to strap Noah into his disabled buggy.....he runs around shops, rolls around the floor and cant cope with the noise and smells of supermarket.
I have recently ordered some ear defenders for him in an attempt to block out some of the excess noise which bothers him....will let you know if they are successful or not lol.
I hope evryone finds the support they need on here as it is stressful at times...hugs to all

claire
x

Carrera74

I've come on for a rant. Not sure this is the right place to do so but I have to have a moan cause I don't know what to do.

I got a call from the SENCO this afternoon to say my son had had a bad afternoon at school. From what I can gather he has had a good morning but then refused to go into class this afternoon. I know my son and I know something would have triggered this but school are adamant he was fine one minute but then not the next. He refused to go in class but then seems to have gone in where he then started shouting out at one particular child (who he absolutely adores most of the time!). He then began throwing things at the same child. The TA and the teacher have tried to get him to leave the class for time out but when he is at this stage he starts to shut down and his anxieties take over and come out in violence. He has apparantly threatened this child saying he was going to really hurt them and mentioned that he was going to stab them!!! I hear this sort of stuff from him now and again mainly when he is overtired or out of his routine. It hurts like hell but it's like he is saying things to get a reaction out of the person or to hurt his own feelings. I don't think he would do this. I really don't but when my OH has gone in to collect him this afternoon things had escalated and he was in the cloakroom in complete shut down. He used to do this last year when he was finally excluded and sent to the short stay school (a godsend!!) but now I feel like he is going back to how he was. Mainstream really don't 'get' him and to be honest I wonder if they actually want to. The head has called a meeting tomorrow for teachers only and commented that what he said when he threatened his friend was not acceptable (i know that!) and they'd have to meet to discuss. I think I should have been invited to this meeting but both the SENCO and Head had left school at 4pm when I rang to tell them this. I also feel that the Head really doesn't like my boy. He is hard work but when he was at the short stay school they really got to know him and brought the best out in him but now it seems like he is going back to his old depressed self. It breaks my heart. He is having the ADOS next month and I am praying that the results will label him once and for all. I'm sick of being treated like a second class person because of how my DS deals with things that he can't cope with. He won't even talk to me tonight as he is so upset at himself.

NoahsPennilessMummy

Hi love

Not much of any use that i can say but I send you (((hugs))).

I think you should go to the meeting too.....it is your son after all and they shouldnt be discussing him without you present....could you speak to the school in person or on phone tomorrow and find out what time the meeting is.

How old is your son?
Mine is only 4 and a half but it seems like its a lifetimes challenge..you just get on top of one problem and another starts.

My son has just started mainstream this week but it has been a fight to get him there and i get the feeling the head didnt really want him either.

Is there any alternative way of educating your son/ any other school which he would find easier to deal with?

Sorry I cant be much use but i hope it did you good to have the rant.
PM me anytime for a rant I dont mind;) .

hope everything gets sorted soon

claire
x

Carrera74

Thanks for that Yes ranting has certainly took the edge off! He's 10 now and starts high school in September. I was half hoping that with the extra hours support he has got that he would cope until the formal assessments comes back and his statement can be changed (I pray it comes back with something more than just 'behavioural').

He's always been very individual. Nothing like my daughter and I knew something wasn't quite right but it's only been picked up at school over the last couple of years. I've known since he was a baby that things weren't quite right but always put it down to the rubbish relationship I was in with his Dad. I'm still convinced experiencing that hasn't helped too but that's a rant I'll save for another day!

You're spot on about getting on top of one problem and something else appears - I always think if it's not one thing it's another - not very positive though, oops!

I'm going to contact school first thing. I think I should be there too but I'm worried I might get a bit over protective and actually blurt out to the Head 'Do you actually want him to be here' etc etc!

I hope your little boy (and you) get the support you need and he gets through mainstream okay. My son had a couple of terms at a special school (the Heads description and in front of my son!). They were a god send and I can't praise them enough. Unfortunately it's only short term and he stayed for a term longer than he should. I'd have loved him to stay there. He really came out of himself but he wanted to go back to mainstream with his friends and they thought he was ready. It's just a shame that really he just can't cope and unfortunately it seems that mainstream are unable to help him as he needs. He has extra support as per his statement but I wonder what good this actually does as the support I'm sure isn't qualified to support children like my son.

Oh dear, another rant!!

seven-day-weekend

Miss-spent wrote: »

Yes, yes all so true

I have tried so hard to make his life 'normal' and to 'normalise' him. I have alos tried the 'tough love' by sending him off to uni but that didn't work.
I just want him to be happy.
Pasturesnew are you happy?

This little post has made me cry.

This could be me and my son (he is nearly 28) - he never really had any friends at school or college, got bullied , used and abused....I could see other boys who were not as 'nice' as my son, but they were popular and had friends....he did have a best friend who was as 'different' as he was but they went to separate schools and then his friend upped and went to Australia when he was 18 without telling anyone....me and my husband both desparately wanted our son to be happy....

But over the years he has matured and learned to manage his condition much better. He now has several good friends (they are all 'different' in one way or another), and in 2007 got himself a lovely girlfriend who is also an Aspie.

Just keep being there there for your son, keep giving him that special type of love that we have for our Aspies, keep helping him when he needs it, keep explaining things that seem obvious to you and me, keep giving him the extra support that he needs, ....he will grow and learn and I'm sure when he is older he will have some friends.

I still have to do things like go to the bank with my son if he has to do anything complicated. He still can't find his way anywhere outside our home town. He still won't sit near an ashtray or use matches. He still can't tie his tie and occasionally has trouble with his shoelaces.

(But he is a whizz with computers and strategy games, is very articulate and literate, personable and he can memorise word-for-word whole chunks of text or speech from a book or film if he has enjoyed it. He is also very good at taking control if any of his friends needs some help).

These are all part of what makes him unique and special and as he has matured he has assimilated these things and learned coping mechanisms.

Your son, I'm sure, will do the same.

Sorry for the waffle, hope it has helped a bit.

I do understand. It is heartbreaking.

((((hugs))))

shazrobo

hi Carrera, (((((big hugs)))))i know exactly what your going through and its heartbreaking to hear another family go through the same. i remember when my boys were 10, and in mainstream school, it really felt like the support staff wern't qualified to deal with my sons behaviours. also felt the head didnt want my sons there either, and they were always getting excluded. unfortunatly things got worse for me when they started mainstream secondary school, they were both excluded within the first week, it was so stressful, and they had meetings also that i were not invited to. things did improve tho, firstly daniel got a place at a special school, the only "real" one in the area, his twin brother josh couldnt get a place, as they said they couldnt cope with them both within the same class. so josh got a temp place at another special school, (named a teaching resouce unit?) most kids only go there for a few weeks before returning to mainstream. no mainstream would take josh, so his statement was changed and he is now the only permanent pupil within that unit. not an ideal situation, as he makes no long term friends, but not such a big deal, as he prefers the teachers company to other kids anyway.
both are 12 now, and are happy going to school, and have mainly good days, which is such a big change from when they were in mainstream.
trying to say things look bleak but they can work out for the best

shazrobo

seven day weekend, sometimes i have to admit to being in denial, and hoping that my sons will outgrow their differences, your post has made me realise they most probably will not, at 12 they still intrested in noddy, and take cuddly toys almost everywhere, especially in the car. sad to think that i'll prob never get a break from my sons even when they've left school, i'll still be helping them out, tying laces etc. not bitter just sad, i have found it such a struggle coping with them both alone for so long with no support or respite, so tiring, exhausting.
hope nobody thinks too badly of me for posting my feelings like this, would just like a day off, even just one day off a year would be nice

samf1971

(((((big hugs)))))))) to everyone having crappy days or just to those in need of a big hug - me included!

Been to Paed today and, saw one paed first who asked questions like you say from birth etc up to now, asked what Ben can and can't do, examined him overall, weighed measured etc and after discussing everything said that he wanted Ben to have a blood test Wednesday to confirm it wasn't a chromasome abnormality or fragile x, but he did say that he doubted that very much and said basically that things pointed to Autism, but at this stage didn't want to give it a label & that he would probably be able to officially diagnose nearer the summer after Ben has been to the different referral people, more SALT and referred to complex communication disorder dept and also we signed a form for him for the Education dept (a H-EN form) He also got me a leaflet giving me lists of pre school activites like tots groups which are specially aimed at Special needs and also will refer to the Specialist Social Worker who will contact me with support groups etc and also he said about DLA and tht she was ber good and would help fill in forms - his words were that looking after Ben would be much harder than looking after another 2 year old so that I would be able to get more help.

Think thats everything, I guess the basic gist of the meeting was that Ben is autistic on the spectrum (as I guessed) and after a few referrals we'll be a bit clearer as to how severe.

I'm more upset than I thought actually, it's as if even though I knew more or less, At the back of my mind I somewhere thought that someone might just tell me that it was all in my mind and there was nothing wrong with him, but I'm so glad I've referred him early and started the ball rolling so expect to be hearing lots more from me!