Aspergers/ASD support thread

softwaremad

Tell the school lol! scream it from the roof tops out is better than in - always remember you are her mum you know best!

If the school now they can get extra funding & support for your dd if required!

Your not mad you know we have all been there!
they are a bunch of useless bums who have not got a clue what it's like to live with the disability 24/7

If you read a few books on nuclear phsyics and then told them what to do and how to deal with things im sure they wouldnt hold back in telling you where to go!

Down with the "Proffesionals" Parents rule!

Mandles

If stuck for things to do i just saw this elsewhere http://www.picturehouses.co.uk/autism . It is Autism friendly screenings of films in picturehouse cinemas. There are quite a few dotted around the country. The leave the lights on low and also turn the volume down and also they can be noisy!

lottylouj

how was everyones easter holidays? mine was ok well we all survived them!

i hate social services poking there nose in and trying to take over when they aint wanted, i didnt want or need them involved in the 1st place, its not as if the kids are at risk.
still no further forward with dd, the school aint asked how things are, still waiting to see the phsycratrist(sp?) on tues, still being told not to say anything to anyone. this is so frustrating, even the talk of sending her to a special needs secondary school has stopped.
im so fed up, you get over 1 hurdle only to find 5 more!!

anyway rant over
hope everyone is ok

softwaremad

ohh you rant on lol! get it out! its better than blowing up like i do at the ineptness of all the so called officials!

i just dont understand how they can get you so wired then proceed at a slugs pace! initially you are led to believe it will all happen within a week which sends you into panic mode! they are bad people!! laugh at them lol its the only way to get through it!

Mandles

lottylouj wrote: »

how was everyones easter holidays? mine was ok well we all survived them!

i hate social services poking there nose in and trying to take over when they aint wanted, i didnt want or need them involved in the 1st place, its not as if the kids are at risk.
still no further forward with dd, the school aint asked how things are, still waiting to see the phsycratrist(sp?) on tues, still being told not to say anything to anyone. this is so frustrating, even the talk of sending her to a special needs secondary school has stopped.
im so fed up, you get over 1 hurdle only to find 5 more!!

anyway rant over
hope everyone is ok

I know, i am after a grant but i know i will have to get social services involved if i do so am leaving it.
This secrecy is daft.I give everyone a month from when they say that they will do something and then chase them up. You have to push for what you want and it is stressful but once you have it you can sit back and relax(hopefully). I dont care what they said, i would still at least talk to her form teacher about it. She may then be able to help her now .The training that they are given will get her better results from your child. e.g you say to my child "would you like to draw a car?" he will say "no" (percived as naughty) instead, if you say "draw me a car" he will draw a car. He thinks you are giving him a choice as with what he has he needs specific instruction like that.
So if i were you i would talk to the teacher , he/she who deals with her most may have an idea herself of what she thinks she has and even better she can give you examples of abnormal behaviour that you may not have noticed that you can then pass on when she is assessed.

rosie-marie

Hello. I hope I'm not disrupting anyones posts, but I could do with a bit of advice/encouragement.

I have a lovely little boy who has profound Autism, he has severe communication problems but no behavioural problems as such. Over the years we have adjusted our home and lifestyles to help him and although its been difficult I feel we've done a good job of helping him.

Now, I have been told from lots of people that Autism gets easier for a child as they get older, in that we find coping strategies etc. And I would say this is true for our little boy as his communication and learning has much improved over the past few years. However I starting to really worry that his sensory problems are becoming increasingly worse not better. He has always been sensitive to noise and light but never to an extreme where he would be very distressed. Over the past few months however he has relied on putting his hands over his ears and needs shades during the day. The slightest noise makes him upset and our house has to be kept very, very quiet all the time (which is hard for siblings). School is now getting him down because of all the noises and lights. Its starting to worry me that his Autism is getting worse rather than better - I get really anxious every time he puts his hands over his ears. We are taking him to DRs to have his ears checked out but can't get an appointment til tuesday morning. He is nearly 8 by the way. Thank you for reading this and for any advice.

Mandles

rosie-marie wrote: »

Hello. I hope I'm not disrupting anyones posts, but I could do with a bit of advice/encouragement.

I have a lovely little boy who has profound Autism, he has severe communication problems but no behavioural problems as such. Over the years we have adjusted our home and lifestyles to help him and although its been difficult I feel we've done a good job of helping him.

Now, I have been told from lots of people that Autism gets easier for a child as they get older, in that we find coping strategies etc. And I would say this is true for our little boy as his communication and learning has much improved over the past few years. However I starting to really worry that his sensory problems are becoming increasingly worse not better. He has always been sensitive to noise and light but never to an extreme where he would be very distressed. Over the past few months however he has relied on putting his hands over his ears and needs shades during the day. The slightest noise makes him upset and our house has to be kept very, very quiet all the time (which is hard for siblings). School is now getting him down because of all the noises and lights. Its starting to worry me that his Autism is getting worse rather than better - I get really anxious every time he puts his hands over his ears. We are taking him to DRs to have his ears checked out but can't get an appointment til tuesday morning. He is nearly 8 by the way. Thank you for reading this and for any advice.

My ds is apergers but i have a relative with autism like your son. Hopefully it may be something that the dr may spot that is wrong like ear infection or something that may be making him go like this, headaches, who knows but it is possible so just maybe look at that possibility for now. I know my relative now in her teens has gone through phases where she has been horrendous but she has got better again. It may be a phase hopefully.

I know where you are coming from with the siblings . Mine can't have sleepovers because of my ds but when the summer comes they can have as many as they like in the tent in the garden and make as much noise out there as they like. They love it . Just an idea for them. Hope it all goes well and hopefully someone with better first hand knowledge will post a reply.

softwaremad

i dont think that the children's autism gets better - i think it gets easier as we learn how to cope with each different behaviour as they do - covering ears to reduce noise intake is a classic coping mechanism that autistic children learn for them selves. as they get older there is more for them to be aware of so they go into sensory overload more often - i have never kept my house quiet my daughter has adapted to this whereas my niece is extremely sensitive to loud noises (she doesnt have asd) as my sister made the house silent for her - a rod for her own back i think! but hey we all have our ways of coping!

3onitsway

Hi rosie-marie - My son has also improved a lot over the years with communication etc - he doesn't speak, but has his ways of letting us know what he wants/likes. We don't know if he'll ever have speech.
But, his ear sensitivity seems to have got to be more of a problem for him - although its only certain noises! He really, really dislikes his 8 year old sister singing/crying/moaning and now has a baby sister who's crying really upsets him! But he can sit somewhere continuously banging something very noisily - maybe thats ok because its his own noise?!?!
With an 8 year old drama queen, and an 11 week old baby, we certainly can't keep the house quiet - maybe he'll learn to cope - or maybe someone on here can give us some hints on what to do?

Js_Other_Half

Some children do well with ear defenders?

http://www.ultimateear.com/product.htm