Aspergers/ASD support thread

seven-day-weekend

bluemonkey, I have tears in my eyes thinking of you and your poor little boy and the rest of your family.

I don't know where you can get any help (my son never got any, as AS wasn't known when he was young), but might it be worth, if you can afford it, paying for an initial consultation with a psychologist just to get things moving? If this is innappropriate please forgive me, it is all I can think of.

My son was labelled 'naughty', 'irritating',, 'childish', all those things, he was bullied and didn't have any friends. We didn't have the particular behaviour problems that you have with your son, but we were always well aware that something was not right and that we were getting the blame.

I hope you can sort things out, but meanwhile try to have a better day and feel free to rant if it helps. PM me if you think that will help.

I'll be thinking of you.

xx

Mandles

So sorry that you are having a bad time blue monkey.It sounds like the dr is trying to pass the blame back to you for her not following up or dealing with it properly.At least you chase things up and take action to sort things out. It is funny when you think you have support from some people at school etc and then they let you down. It is all about money and funding to me and often not for the benefit of the child.

I know, to be normal, would be great.I'm sure he will learn to control himself a bit more and understand what sets him off as he gets older.Making dinner at my home is like world war 3 as i cant watch mine while cooking and there is always screaming and fighting. It is funny when people ring and say "what is going on!!??" and then i realise that this fighting and noise is constantly going on and you just get used to it!

Shopping and something as trivial as doing the washing and putting it out has to be done in the small time that mine is at playgroup as like you, the minute you leave the room they instantly start getting up to something. Mine is back in nappies at night now after being constantly being woken and having to strip the bed at 2am most nights .

Mornings are him waking me up , shouting at me, thankfully the hitting has eased.I think you said before that your dd may be a little bit asd too. I think my ds is too and he is old enough to know better but he really sets off my little lad with asd and makes life hell. That is why i seperate them as much as possible.

Life is hard and you sound like you have really just hit a low.You do brilliantly and help so many others, myself included so try not to get too down.It can only get easier (hopefully!). I know it is hard but i often look at kids who have a very poor quality of life due to different things and although i feel i am going insane , i am thankful that my lad is not like that.

Sorry about your lack of support. It really sounds like you need a break.Any chance of getting away for you and maybe even your dd? I spent a night in london and watched a show. Just one night , but it is amazing how something like that can help and lets face it, mums need to have a break so cope with this everyday.

Take care.

shazrobo

(((big hugs))) blue monkey, and mandles, what you have both described is my life, this is what we have in our house, my twins are 14 now, and believe me, we still dont get any help, one son has just got a 3 month referral order to the youth offending team for assaulting me, he is 6 foot and stronger than me, and i have to phone the police on occaisions for my own safety and that of my other son.
pycologist been of no use to us.
socail services wont give us respite, no family willing to have them, am exhausted too.
as for taking a step backwards, danny was at teh hospital on monday for a review with his pychiatrist, and they said, oh we'll try him on ritalin, as it sounds like he is hyperactive !!!!!!, they diagnosed him as ADHD at six, and had him on ritalin, which didnt help.
this time, as well as taking resperidone, they are trying him on atomoxetine, to see if that helps.
blue monkey, have you tried taking your son out for a carvery, i ask because its one of few places i can take mine, as they can get up and go get there food, as soon as we've been shown to a table, as mine cannot wait.
some days are easier than others. mine have chores at home, like drying the dishes, they have learnt that behaing in carvery works, as it gets them a night off from chores lol. still dosent help in places where they have to wait for a meal.
we dont go shopping or anthing together, unless my bf is with us, as an ex rugby player, he can rugby tackle them to the ground to restrain them.
it is hard, it can be embarrasing as parents taking these children out, but take a peep when they are asleep, they look like angels, sometimes this is the only thing that keeps me going
we have a visit from social services tommmorw as in school hols i didnt cope and took overdose, bet they still do nothing to help
sorry for rant and long post, helps getting it of chest

Carrera74

I haven't been on here for a while but am still really struggling with school.
My 12 DS attends a BESD special school. We have been having problems with them for some time.

We appealed against this school as there is no routine, no structure and no discipline in lessons. Behaviour is only dealt with when the pupils have lost it. Rules are constantly broken and it was clear from our first visit round that it wasn’t the right school for him but we lost our appeal and he has had to stay there. We have to make best of the situation but I don’t know how much more he or I can take.

We had our annual review in May and DS had become more unsettled and was disrupting a lot of lessons and refusing to take part. I may as well have been talking to myself as they didn’t’ take on board anything I said. At the end of the Summer term he was becoming more and more disruptive in lessons and try as I might to explain to school that this behaviour is because his needs are not being met, it falls on deaf ears. They just see my DS's negative behaviour and think he is playing up on purpose.

It was his second day back yesterday and he flipped as he was allowed to go on the computer at break time and he refused to come off it so they unplugged it and all hell broke loose. We have advised school that he needs to be told what time to go on, how long he has got and to be given a 5 minute warning when he is due to finish so he knows where he is at. They just switched it off at the wall. I know these are small things but it only takes a small thing like this to set him off.

I’m at my wits end. I don’t know what to do. He is in a special school with 6 children to the class maximum and yet they can still not read my son – he has been there now 12 months.

Can anyone advise what I can do about this? I have kept him off school today as he is so upset at what happened. He is always remorseful afterwards but it really gets to him. Once he snaps he can’t get out of it until he has peaked and then come out of it.

I’m really concerned that his behaviour is getting worse – he is copying the behaviour he has learnt these last 12 months at the school – kids get away with all sorts!

My main concern is educationally he’s falling behind and I’m worried that how he was taken to the peace area yesterday isn’t acceptable. I know school have rights and he was being disruptive so they had the right to take him to the peace area but I don’t think holding his arm out and bending his wrist back is the right way for a 12 year old boy – it’s the same way that prisoners are restrained!

He’s the same now as he was at mainstream primary school. We have no autistic schools in the area. I just want them to try to understand him instead of just dealing with his outbursts. I feel like banging my head against the wall.

Do any of your children attend a ASD specific school? Or do you know any in Lancashire or surrounding areas? We were definately rushed into picking a school for him and we're paying the price now

shazrobo

hi carrera, sorry the school is not supporting your son in the way they should, i really feel for you on this, but have no real advise sorry.
both my sons go to BESD schools, and they have been a life saver for me, as i know both sons are well treated, and they cater for their needs.
as for the restraint techniques, specail schools of this type do have specific training, and this is how all kids are restained, to prevent harm both to the kids, and to the adults, it is upsetting to see however.
would it be possible to send your child to a special school outside your local area.
i know at one of my sons schools, in wakefield, west yorks, they have kids who travel from as far away as malton, north yorks, and hull

Carrera74

Thanks for your post. I know it is upsetting to think he is restrained but i know that it can be necessary. My problem with school is they don't think there are any triggers - he just flips :rolleyes: DS used to attend a short stay special school and they once took him from me as he was going mad and it was upsetting to see but they did it very professionally and no harm came to him. He has been taken to the peace room before now at the high school but I think with the marks on his arm and him telling me he told them he was hurting it just makes me see even more that they don't get him. I just wish they'd learn to understand him and nip things like this in the bud before it escalates.

starnight_2

I know I'm a bit late in joining this thread etc, so hope no one minds if I jump in!

My DS is 7, and was eventually sent to a paediatrician to assess him in June, now she has said she is 98% certain it is Aspergers, though this doesn't come as a surprise to me. She still won't give a definite diagnosis as she is 2% uncertain, due to what the teacher wrote on the feedback forms. So she has referred him to psychiatry anyway as he is violent and it's getting harder for me to hold him back. I think she is hoping they will make the diagnosis, as she said she doesn't want to due to it being a life long diagnosis. Though I agree with what she is saying it is frustrating also, but I'm hoping I shouldn't have to wait too long for an appointment, though we'll see.

Does anyonw have any experience with children's psych? Will I just be going over the same stuff I did with the peadiatrician? Will they get some info from the psych? I see one myself as I'm bipolar, but I'm wondering if it is any different? I'ce started keeping a dairy as well, though I don't know that will help and I find myself just forgetting to write the small things down as I'm so used to him, it's only when I'm with my family and I have to remind them of things that I remember.

Thanks

shazrobo

hi starnight, and welcome to the thread, both my sons see a pychiatrist, and on the first visit we had to tell him everything from the begining, tho i do think they also have some records from the paediatrician,
the pychiatrist is good in some ways as they can prescribe a wider range of meds for the violence than the paediatrian can

shazrobo

carrera, is there a doctor attached to your sons school, my sons school have a paediatrican attached to the school, and i've found talking to the doctor, and getting the doctor to explain things to staff, can make life easier

Carrera74

shazrobo wrote: »

carrera, is there a doctor attached to your sons school, my sons school have a paediatrican attached to the school, and i've found talking to the doctor, and getting the doctor to explain things to staff, can make life easier

That's something I've never asked but I will do tomorrow! I'm not sure how it works as my son attends school in a separate area from where we live so we struggle with SALT etc being carried out because it's a different catchment area! Same PCT though so it shouldn't affect him but it does!