Aspergers/ASD support thread

ms_piggy

I guess I could go and speak to the doctor next week and ask, I feel like I am being a drain on everyone and do I need an appointment just for a letter?

The thing is, it must hurt as she is drawing blood but he still does it over and over. Do you think that the doctor would see that this is a problem - do other children do this?

The other question is whether you think I should give the hamster to a new home



first you are not stupid asking questions.we are not born experts on ASD and even many "experts" will not have all the answers about this condition . The only way we get answers is to ask questions.

Secondly , you are not draining anyone. The NHS is there to be used when needed and it sounds like you need it. You are simply being a good mum and asking for a bit of support with a really difficult situation. If your doctor is sympathetic it may be a good idea to go and have a chat .Explain the situation re your son and daughter sharing the same room and tell him why you feel your daughter needs respite and a place she can call her own. It's really tough for siblings and if he is on the ball he should understand where you are comung from. If doctor is no good maybe HV or CP if you have met yet.
re your son not learning from experiences with the hamster. This is classic ASD most kids will make a connection ,like your daughter has,(once bitten twice shy) but ASD have difficulty with this in varying degrees. I would discuss this with a professional as this type of information may help with a diagnosis. Also regarding the hamster bites does your son react or cry? If he does not I am wondering if he has a very high pain threshold-again an ASD trait. I knew of one boy who would stand by the iron and just burn. His mum was unaware of what was happening until she smelt burning flesh, about half an hour later this boy felt the pain and then he screamed.
I love the story about the rat! I did get rid of our cat as my son was constantly harassing her.I reasoned we would all be happier. The rat substitute could well be the solution to the problem.

penguin83

Hi all - how is everyone.

Well I have had a very intense day today. We had out consultation with the paedatrician (who was brilliant) and has officially diagnosed him with ASD. We are due to meet him and the education specialists to discuss his educational needs as well as the nursery he is currently attending to see what extra support they have available. He was also really good advising us on the practical issues such as DLA (something which we havent considered before) as this would allow me to drop a day at work. He has said he is more than happy to complete the parts of the forms he needs to.

Although I was expecting him to diagnose him, it was still hard to hear IYSWIM so feel emotionally drained today.

Part of me feels like this is the beginning of a long battle with the education - does that make sense? x

ms_piggy

Although I was expecting him to diagnose him, it was still hard to hear IYSWIM so feel emotionally drained today.

Part of me feels like this is the beginning of a long battle with the education - does that make sense? x[/quote]


Hi penguin -glad you got the diagnosis. I found I went through a grieving period even though I was expecting the diagnosis. Glad you are getting info on DLA your team sounds great.
Depending on where you live you probably will have a long battle with the educational authorities so its good you are expecting that. IPSEA and ACE are very good for advice, also the book"surviving the special educational needs system" by Sandy Row ISBN 1-84310-262-5 will give you some idea of what to expect.

blue_monkey_2

Hi Everyone,

Hope everyone is oK, thanks for your note ms piggy, I am going to go and see the doc about getting a letter about Ryan needing his own room. First I am going to give the council a call after the new year and find out just how many points we have and whether we are down for a 2 or 3 bed place (eventually) and if it is just 2 (so far they have told me that we will only get HB for a 2 bedroom place) then I will go and see the HV to see if she can write me a letter saying that, because of his unintentional aggression towards DD (he grabs her hair and tried to grab her out of bed for example) then he really needs his own room to give DD saftey as we can usually hear him getting out of bed and intercept him before anything happens. Does anyone sleep properly I wonder? Except my husband of course, lazy git, LOL!! So, I will let you know how that goes. I have this thing from the school to say that he does need constant attention - I don't know anyone who is in council accomodation to say if this makes a difference, are any of you guys in a council or HA place that would know?? I think that moving is my main worry at the moment. I have spent the last few months considering rehoming my cats but I've been putting it off. I sometimes think it is cruel to keep them here and be subjected to Ryans 'abuse' (and it is that) but then i feel bad for thinking about rehoming them, especially when you see on the news about how full the homes are and that no-one wants them this time of year. Why does every descision seem to be full of burdens these days? Just these make me feel tired and it is so hard to know what to do for the best, what makes you feel better. I was wondering if any more of you have pets and if so, how is life with them. I have 5 cats, the hamster and a snake - all of which get subjected daily to Ryan harrassing or abusing them. Is it right to keep them in a house where he does this, is it right that they get sent somewhere else, they are all over 10 (so getting on a bit) please tell me what your advice would be if anything. The cats hate him, he has been bitten again today by one of the cats and my cats are so gentle and loving to everyone and just want strokes, Ryan will stroke them (with our supervision otherwise he just does nasty things to them) and then after 30 seconds he will have had enough, grab the cat around the head and hshoulders and shove it out of the cat flap. Hmmm.... I've just read myself what I've written. Should I feel bad for wating to keep them if they are being subjected to this. Is there ever a right answer??

I know we have spoken about it in the past but looking through for something else I actually found this and wanted to share it with you - I should be working as I am shoving everything on eBay as it is a 10p day and I need to sell as much as I can, in 10 days my business is closing until we are sorted again and things are back on track - but the kids are upstairs with hubby so I have been having a browse. I thought this might be of interest:

http://www.bhas.org.uk/freeguides/dla-child-mentalgrounds.pdf

I have to confess I got a bit tired from reading so did not get to the bottom but it was after a few pages I realised just how much attention I have to give my son - it was like someone was saying about the frogs a few days ago I guess, but I wonder how much of this could be put down to age? Does anyone know what it is like to live with a 'normal' 3-4 year old boy? it is hard when you have no comparison isn't it? I bought Ryan some new trousers this morning and I got them half on and he laid flat on the floor and refused to pull them up anymore as they were new and he would not wear new clothes, apparently little things like this mean all the difference as he won't dress without a tantrum most days. So, once work has stopped I think I am going to apply then and see if it makes a difference and if I get it great, if not then it is no big loss I guess. I thought it might help if anyone else was thinking of applying for DLA, I hope so.

Anyhows, Happy New Year to you all - I can't believe Xmas is over already, where did that time go?? Off to the chip shop tonight, my weight has crept back up to 9st 6lb over the last few weeks and I've been eating way too my bread so I am making the most of the last few days, eating all the food possible so i really cannot face another chocolate or cake and then I'll be happy to look at salad everynight for tea, LOL!!

One more thing - congratulations Penguin (I did post the other day and Ryan knocked my screen off - argh!!) Please do let us know how it goes once your son is back in nursery, how they are helping him, what extra provision they are giving him, it is wonderful that you have dealt with this so early and fingers crossed it will mean more provision for him from now on.

Can I just say that since my son has got this Classroom Assisstant they have been giving him a time out if he is aggressive with the other kids. Yesterday, for the first time ever, he sat and did a time out in the corner with his legs crossed facing the wall, he was on one side his sister on the other and she was making more noise about it than he was and he just accepted I was punishing him. I could not beleive it in all honesty, he bit and she pinched - so getting the help seems to have done wonders for him. I do wonder though, how they have made this possible when I was never able to in the past? But now, i do spend time wondering about my daughter....... I thought she was just a stroppy cow....... but now I wonder......... maybe, just maybe she has a touch of ASD in there somewhere as she can be very difficult at the best of times and is also aggressive but she can leave it at home when she goes to school.

Right, I am off and leaving you in peace. love to all!! Have a NY drink on me!!

Savvy_Sue

The clothing thing can be a bit of a nightmare, can't it? If you can work out what they DO like, it helps - DS1 still only wears jog bottoms, 100% fleecy cotton, apart from 'school trousers' for best. And he rarely thinks he needs 'best'!

ms_piggy

DS1 still only wears jog bottoms, 100% fleecy cotton, apart from 'school trousers' for best. And he rarely thinks he needs 'best'!


lol did laugh at this one my DS1 and2 dont see the need for best or clean!:rotfl:

ms_piggy

blue_monkey wrote: »

Hi Everyone,

I've just read myself what I've written. Should I feel bad for wating to keep them if they are being subjected to this. Is there ever a right answer??

I think the only right answer is the answer that's right for you

Savvy_Sue

One tip with clothes, which I managed to work out entirely by chance, is if you can formulate a 'rule' around it - I offer no guarantees, and you will of course be stuck with it for ever and a day.

But, if your child is able to choose their own clothes, you may find preferences developing - eg pre-school DS1 always wore the same colour. We had red days, green days and blue days. And the pants and socks HAD to match the t-shirt, jog-bottoms and sweatshirt. Plain outers, no logos or badges, but t-shirts could have a brand, picture or logo, eg Lego Club, dinosaurs etc. He NEVER wore anything with collars or buttons.

However, with school looming, I just produced 'school trousers'. I made sure they had elastic at the waist so he could ignore the zip - this gets MUCH harder when they hit secondary school! So, we had 'colours' for the weekend and 'school' trousers, 'school' t-shirt and 'school' sweatshirt. Pants and socks were still matching, and primary colours, and the school never commented on this.

Because we had the 'rule' established, when he changed schools and had to wear a shirt and tie :eek: he once again accepted it. NEVER did his top button up, and only untied the tie for washing on a Friday. Oh, I don't think he ever tucked his shirt in either. But although he ripped the tie off as soon as he got indoors, he didn't insist on getting out of the shirt - school day, school shirt I suppose!

Come secondary school, and the addition of a blazer! :eek: :eek: However, he actually liked his blazer: it was practical, it had pockets ... and you need pockets for your bus pass, wallet, dinner card, front door key and (eventually) mobile phone! :rotfl:

And I know you can't wash clothes before they are tried on, but I always promised that clothes would be washed before they had to be worn. I do this anyway because DH has eczema, and sometimes there's a 'dressing' or starchiness to new clothes which irritates his skin. Oh, and I sometimes had to take labels out of things because they were 'scratchy'. I can relate to that, I've got a pair of PJ trousers which need a vest tucked into them to be comfy!

Plus, I don't even bother buying DS1 clothes which feel at all stiff or nylon-y. I do feel everything ... He's 20 now, and buys his own t-shirts as and when he sees one he likes - eg "If only you and DEAD people can read this, how many people can read this?" Clue, DEAD is ASCII ... Several of his sweatshirts are too short in the sleeves, his trousers have holes in the knee from where he's fallen off his bike, but he's 'fine', he doesn't need anything else, and if he did he'd go and buy it! As if! He's managed shoes, when his last pair fell apart when he was at Uni and started letting the rain in badly, but even that took him 3 days! :rotfl:

He did wear a dinner jacket to the final 6th form ball, but hasn't even taken a shirt to Uni with him. He got an award one year and was invited to a dinner: I asked if they were expecting him to be smart and he said "They'll be disappointed if they are." Afterwards I asked if he was supposed to have dressed up, and he said "Oh yes!" So I think it might have been quite smart, and he was there in his t-shirt! But you can get away with that when you're a student. I don't know if I'll be able to convince him that job interviews might be helped by a shirt and smart trousers, if not a tie and suit! :rotfl:

Savvy_Sue

Personally, I think that if you can't keep the animals from being hurt, then considering re-homing is the way to go. Being brutally honest as well, it will improve your housing chances too: there are some properties where 5 cats could be a no-no, for example an otherwise suitable property next to a family with 2 large dogs who hate cats. At least, that was my experience when I worked for a housing association.

I also remember a couple, no children, who could have been offered a flat but not if they kept their dogs. They were going to be homeless, but would not consider parting with the dogs.

Why not at least talk to the vet or your local cat sanctuary, you don't have to make an immediate decision.

blue_monkey_2

Thanks sue, I am going to go to the vets and put up some posters. I was going to ask for foster homes but I think I will start with asking if anyone wants to rehome them permanatly and then go from there. I have kind of though already about the housing situation - I do know if we go to a hostel then they have to go. If we get rehoused by the council I may be able to take a couple (I have one with diabetes and I would like to take her to make sure she gets looked after but.... Ryan.... *sigh* its a vicious circle. I think I'll put them up for rehoming and go from there if they are not homed by the time we have to move. Did you have animals when your children were younger? or does anyone with young kids have animals? Such a decision.

I did smile about all of your experiences with clothes - we are very lucky in that for school all he needs are some joggers and a polo shirt, he has a jumper but will wear it down the road, and coats never get done up even when it is minus 5 outside!! Mind you I do dress him and then 5 minutes later the clothes are off and he is then half naked for the rest of the day. I can't even remember the last time he wore trousers and pants for more than half an hour, LOL!!

Sue, i did laugh at your son in this t-shirt for the smart do, bless his heart. Do the people he is at uni with know of his ASD? what is he studying, does he live away from home from you now? How did he cope with the change?