Aspergers/ASD support thread

blue_monkey_2

starnight wrote: »

I'm here to vent.

Having seen the doc before christmas and told the school would receive a letter and referred to ed psych, I feel I've been patient so far as the school have heard nothing... not unusual for things to be running late! So today decided to phone paediatrician secretary and find out how much longer it would be... wel they are 2 MONTHS behind in their typing. Realistically this means the ed psych won't receive referral until end of Febuary, start of March, and the chances of them seeing DS before end of shcool year is slim. I am one frustrated parent, though the secretary did say she would speak to paed and see if they could get the letter typed faster

I waited a year initally, might have even been a tad longer than that, to be referred - it is just a waiting game. The services are so overstretched and this is because there is more awareness of the conditions - you need to weigh up the good vs the bad. I was on my last week of waiting before I decided I was going to get a private referral instead. If you have the money, please consider this. No you should not have to but if you want something done quicker you need to pay for it.

My friend did not even manage to get a referal so paid just under £500 for her daughter to see the ed psych and she said it was the best money she ever spent. The lady spent 3 1/2 hours with her daughter and had a full in depth report to give to the school within a few days - and those things had to be implemented as she had as much weight as one tied to the school. The one at school will not give you this time and the report will not be so quick. because of the time spent with the little girl, the EP also picked up a problem with her daughters eyes that meant she could not see the letter on the page of writing and she is now getting treatment for that and the school prints the work landscape instead of portrait for the children.

Sometimes, if you want something badly then go private and get it done yourself.

10 years back I had problems with my ovaries and it was before children so it was important to me. A scan on the NHS was taking 6 weeks to come through so I went private - doc referred me in the morning I'd have a scan in the afternoon/evening after work (in MY time!). I had one every other day in fact so they could see what the problem was, they could see the cysts growing and then when they were going. I did this for 2 months. It cost me a fortune but this was never something the NHS was going to do so for me, it was worth it. I saw the gynacolagist privately and he put me on his NHS list and I was in for an op within 4 weeks. There has ALWAYS been a 2 tier system so if you can afford it, pay for it. The service you get will be worth it and more in depth. But a few months is good, we waited much longer than this. I was referred to CAMHS and the ADHD nurse 2 years ago - my son is still waiting to hear if/when he will be seen.

blue_monkey_2

seven-day-weekend wrote: »

Yes, so do I AND I totally agree with SS's post quoted above. They have to learn to deal with unfairness. You can't make it fair because it is not. You and he have been dealt a different hand to most, but you have to play the hand you have been dealt, therefore it has to be dealt with differently.

I hope that he gets the help he needs.

I sometimes feel I am a bit of a bi tch to my children to be honest. I do NOT give them their own way all the time, I negotiate or stretch the truth over things and it helps them to adapt to different situations. Obviously not all the time but sometimes.

Lets take for example, sandwiches. My son HAS to have them square, but sometimes on autopilot I'll cut them into triangles. He will, if I let him, kick off big time over this but one day I said the square cutting knife did not work today (I had no idea why I said it) and he eventually ate the sandwich and now he will 'accept' triangle sandwiches after a bit of a fuss (and the same old lie trotted out). This was my turning point.

My son will one day be an adult and he HAS to LEARN that life is not fair in any way shape or form, it often has disappointments and yes we have tears and tantrums but if I give in I make a rod for my own back, he is always going to want to give in and we will always have trantrums.

You are the parent you have to be sly and cunning and beat them at their own game. This applies to all children but with ASD children you have to work a little harder.

The chore chart works wonders for us and I am teaching them important skills, they are 6 and 8 but why should I be picking up dirty pants until they are 20? They have a money boxs that 'adds up' how much is in there and they can see the amount going up, so by doing the chores they get a reward. I simply chuck spare change into a small box in the cupbaord, I do not miss the odd £1 here or there but mounts up and I use it for giving them at the end of the week.

Some parents will let their children walk all over them and, despite his conditions, I will not let my son do this. It is a condition, not an excuse and this is something I always bear in mind. I like to think that I am teaching them important lessons for later life as bad manners and being rude is not acceptable (at work/school for example). However, apparently I am also the 'worst mother in the world' most days. I am not here to namby pamby my children, I have children that need extra guidance and I'll give them that and not give into them all the time. Sometimes it gets to me but other times I see the child my son is growing into and I am proud of them. Of course I'd like them to by like my friends kids, popular, playing football, can have people round for tea or go out for the day, however that was not the card I was dealt so I am playing it as best I feel fit.

However, your son needs help with the changes that are coming into his life - HE does not understand them, HE was not consulted on these changes was he, you went off and did them without explaining to him what would happen. It has nothing to do with seeing the doctor, he needs YOU and he needs to be prepared for that change. Go and get a lifelike baby doll and keep it in a cot in the nursery or your room where the baby will sleep. He cannot hurt the doll. Prepare him NOW for how the baby will need to be picked up, bathed, fed and cuddled. It might seem odd to others but ignore them - it is your job to prepare your children for the MASSIVE, MASSIVE, MASSIVE upheaval this baby is going to bring into their lives. Starting now.

There is always a reason for the violence so you need to find out what that reason is. It could be the way someone is eating, they can hear a noise that they do not like and it annoys the, it could be a word you are using or the way you have said something to them. You need to find out what this reason is and help him deal with these. A lady at our group said her son would have outbursts after writing, it turned out he could hear and feel the scratching noise of the pencil on the paper and was having a meltdown over it. Simple things that we take for granted can be huge for our children.

However, as I am THE worst mother in the world today you could choose not to listen to me. :rotfl: I have had a REALLY tough few days. Oh, and also its not fair that DS gets more pocket money because he did his homework without crying about it according to DD. We had some tears over that but she wanted the money eventually (I would not let her have it while we had tears). She is still bleating on about that, it's been since Sunday. Apparently, life SUCKS. :rotfl::rotfl::rotfl: Ask me in 3 weeks when I have PMT and my response will probably be a little hormonal but that soon goes. I am here to ensure my children fit into life and do the very best for themselves.

I was devastated that my son got nothing in his spelling test last week so we have ramped it up now, I could say that his ADHD is an excuse, he could not concentrate but I am not going to let my son become a failure band spent all his time using this condition as an excuse. Hopefully this weeks results will be better ones.

blue_monkey_2

Breast_Cancer_Survivor wrote: »

Thanks for taking the time to reply. :A

He hasn't heard me talk about putting him in care & i'd never say that to him, infact I don't want to I just want to get him some therapy or counselling.

He has always hurt his brother & sister so the 2 boys have pretty much always had their own rooms, his brother used to get taken to hospital in an ambulance quite regularly when they shared for a few months..

I've had problems with him since he was a toddler tbh he used to head butt us when he was in a strop & punched my adult next door neighbour in the face when he was 5 or 6.

He doesn't actually have a dad as he left 4 weeks before Liam was born although he does have a step dad they have never really gotten on.

I've tried to get him to participate in after school activities but he point blank refuses to go which is a shame as I know it would do him good.

He doesn't get pocket money but when he is good I buy him Microsoft points for him to use on his Xbox.

He doesn't actually have chores set but I will ask him to unload the dishwasher occasionally which sets him off so it's best not to bother.

I'm going to ring NAS Monday as I feel it's the only option I have left & i'm so hoping that they can help.

I've highlighted a few things really. First the stepdad, why does he not get on with him? I guess that this is going to be offending but this is your son and you have bought a man into HIS house (yes, he was there first), why would you do that to a child with disabilities without finding out whethere there was any conflict? If there was ANY tension it should not have happened because, as you have found out the tension is there. Liam will then take this tension out of others around him who are more vunerable. ie. his brothers and sisters. And now, you and the baby.

Also, do I remember that your husband is also off work ill at the moment? This must be confusing for him too as there is no routine, routine has been disrupted. ASD children NEED routine, they need to know where they are at, and this routine is not there. Is he a visual learner? because if so you need to write his day down so he knows what is coming next.

As for 'sets him off'. Tough. Give him jobs to do, make him responsible for something, give him a sense of importance as he is not feeling it right now.

Can I ask what you do when he is violent? How do you punish him? He should still be punished for what he has done. Having the condition is not an excuse, he needs to learn how to control his anger. You need to help him how to do this. Get a book called 'The Red Beast' by KI Ghani, it is for younger children but it might help him understand his anger and how best to deal with it. However, there will be a reason for it and usually it is disruption and not being able to cope with what is going on around him, be that noise, change, uncertainty, or people that he does not like being in his space. You need to find out what that is and what the trigger is. And to be honest, if he did keep on putting his brother in hospital, why did you not take the step to remove his brother from that situation and either have him, or Liam, sleep in with you?

I guess it sounds like I am picking but I am trying to understand what is going on here. As I say, my son started biting because he knew the end of xmas holiday was coming - and even I did not pick up the reason why, back at school he has now stopped. He could not tell me but I will know for next time.

starnight_2

blue_monkey wrote: »

I waited a year initally, might have even been a tad longer than that, to be referred - it is just a waiting game. The services are so overstretched and this is because there is more awareness of the conditions - you need to weigh up the good vs the bad. I was on my last week of waiting before I decided I was going to get a private referral instead. If you have the money, please consider this. No you should not have to but if you want something done quicker you need to pay for it.

My friend did not even manage to get a referal so paid just under £500 for her daughter to see the ed psych and she said it was the best money she ever spent. The lady spent 3 1/2 hours with her daughter and had a full in depth report to give to the school within a few days - and those things had to be implemented as she had as much weight as one tied to the school. The one at school will not give you this time and the report will not be so quick. because of the time spent with the little girl, the EP also picked up a problem with her daughters eyes that meant she could not see the letter on the page of writing and she is now getting treatment for that and the school prints the work landscape instead of portrait for the children.

Sometimes, if you want something badly then go private and get it done yourself.

10 years back I had problems with my ovaries and it was before children so it was important to me. A scan on the NHS was taking 6 weeks to come through so I went private - doc referred me in the morning I'd have a scan in the afternoon/evening after work (in MY time!). I had one every other day in fact so they could see what the problem was, they could see the cysts growing and then when they were going. I did this for 2 months. It cost me a fortune but this was never something the NHS was going to do so for me, it was worth it. I saw the gynacolagist privately and he put me on his NHS list and I was in for an op within 4 weeks. There has ALWAYS been a 2 tier system so if you can afford it, pay for it. The service you get will be worth it and more in depth. But a few months is good, we waited much longer than this. I was referred to CAMHS and the ADHD nurse 2 years ago - my son is still waiting to hear if/when he will be seen.

Thank You for that, I actually forgot about going private! My mum had already offered to help me pay for private appointments to get him the help he needs, but the nhs appointment came in, so this is definitely an option. I feel like I need to push it as he is in P5 now, next year he will studying for his transfer test, so in November 2012 he will be taking the transfer test (well we'll see, I'm not sure about this). I'm going to look around while waiting for the secretary to get back to me.

blue_monkey_2

If you have the money I'd definately choose paying for it as the Ed with me MUCH more thorough than the school one (he'll probably get 15/30 minutes there) and all that is found out HAS to be implemented by the school. It does cost a lot but (IMO) is worth all the money to understand your childs problems/needs and get them the help they need at school. You'll have an appointment within a week usually, going privately.

Good luck. Glad you was not offended by the suggestion.

SallyUK

Has anyone got an 18 year old Asperger son/daughter who is meantime studying for A Levels?

Could you tell me how they're getting on and whether or not they seem stressed?

My son mainly has a lack of social skills and I really feel that he needs to go out to different places, and to meet other people. The only thing is he won't go on his own, so it would have to be with us, as a family - he doesn't have many interests apart from Marvel comics, music and books.

Can anyone suggest how I can help him get out and about more socially, where we could go, what we could do etc - after all, if he does succeed in getting into Uni, he's going to have to develop these skills and fast!

Sal
x

Savvy_Sue

SallyUK wrote: »

Has anyone got an 18 year old Asperger son/daughter who is meantime studying for A Levels?

Could you tell me how they're getting on and whether or not they seem stressed?

My son mainly has a lack of social skills and I really feel that he needs to go out to different places, and to meet other people. The only thing is he won't go on his own, so it would have to be with us, as a family - he doesn't have many interests apart from Marvel comics, music and books.

Can anyone suggest how I can help him get out and about more socially, where we could go, what we could do etc - after all, if he does succeed in getting into Uni, he's going to have to develop these skills and fast!

Not any more ... and mine was always very mild, but I know where you are coming from.

Now, first thing to say is that none of mine 'do' stress. DS1 wasn't always self-confident, certainly didn't believe what school staff said about his capabilities - why was it that he couldn't tell a lie but presumed everyone else lied about him?

and in 6th form in particular, he had a gaggle of friends who made him look normal, because they were definitely 'interesting'. if you've never heard a 17yo lad discourse, at length, on which entrance and toilets are the best in Harrods, and why the others are inferior, you've missed a treat. so much of a treat that I tried to avoid giving that one lifts ... although that's the one who's engaged! so there's hope for them all ...

social life - not a lot. he did his paper round. at 17 he got a job at the local cinema and that worked well. he went on school ski trips, and enjoyed them, to my astonishment, but I always warned the staff that there was no point trying to make him join in the apres-ski disco, he'd really be FAR happier with his nose in a book.

going to uni was scary, yes. but I'd taught him to shop, cook and do his own laundry. we'd made contact with the student disability services and concluded he probably didn't need help immediately - yours might, it should be there if he does - so we drove him up, dumped his bags, made sure he knew the name of the lad in the room next to him, and ran before i burst into tears. The father of the lad in the room next to him took the same course of action, although I don't know that he was likely to burst into tears, but clearly neither he nor we were sure whether to leave or not.

now, do NOT discount Marvel comics. or music. or books. others will share his tastes. DS1's 'obsession' by that stage was juggling. they'd given them a session at the start of 6th form (it activates different bits of the brain, apparently, which I never had!) and our house enjoyed a steady late night rhythm of swish swish swish swish thump swish swish swish thump swish swish thump as he practised. so he unpacked his balls and rings and clubs, and within a day they were all round the communal kitchen, he'd joined the juggling society, and he's still friends with the lad in the room next door ...

DS2 and DS3 are not Aspies, although they may have picked up a few odd behaviours on the way. school got very worried about DS2 because he wasn't 'engaging' with his peers at school. he was doing Scouts so we didn't worry and he was happier in 6th form. he set off to uni, joined some societies, and has also developed social skills.

Now, no-one ever expressed any such worries about DS3's social skills, but he is the one who doesn't seem to have got 'stuck in' at uni like his brothers. so it's not as simple as it looks.

when I was worried about how DS1 would cope with things he didn't seem any good at (like using the phone!) I'd say "you'll have to do that for yourself when you go to uni", and he'd either take it on board and practise, or wait until he needed to do something.

so I don't know if this is something you need to worry about now, or work on now, or just flag up - in the same way as you flag up the need to do your own laundry, sort out food etc. students are a very diverse and tolerant bunch, on the whole, and as long as his lack of social skills doesn't make people feel threatened you may be able to let him get on with it. I think all of mine would have felt stressed if I'd insisted on them doing things which just weren't them, IYSWIM.

SallyUK

Moring Savvy Sue

Thanks so much for taking the time to reply, that was really helpful!

Especially the part about "using the phone" - this is something that he just won't do, unless he's forced to - lol - he'll occasionally reply to my texts, but when I try to ring him, it always goes unanswered! lol. (What if he never keeps in touch when he goes away?!)

We went to a wedding recently and whilst he was fine during the day, speaking to other guests etc, as soon as it came to the evening reception and the music and dancing started, he was off to his room!

He seems quite ok at the moment and is keen to go to Uni, but I keep imagining him sat in his room on his own! I'm absolutely dreading the time when it comes, where we have to take him to wherever he is going and having to leave him there - I get so upset now at the thought of it - although I'm trying very hard not to let him see this.

I asked him the other day whether any of his college friends were going to Uni to do the same course as him and he said yes, but they hadn't applied to the same uni. I said "Oh, that's a shame, at least you would have known someone" - but he replied and said no it was better for them not to go, as it would mean he'd have to make some new friends when he got there. So maybe I'm just being a normal Mum and worring about nothing, but I can't help doing it anyway!.

I just feel he needs to go out more and "practice" socialising more.

Thanks again for replying,

Sal
x

Savvy_Sue wrote: »

Not any more ... and mine was always very mild, but I know where you are coming from.

Now, first thing to say is that none of mine 'do' stress. DS1 wasn't always self-confident, certainly didn't believe what school staff said about his capabilities - why was it that he couldn't tell a lie but presumed everyone else lied about him?

and in 6th form in particular, he had a gaggle of friends who made him look normal, because they were definitely 'interesting'. if you've never heard a 17yo lad discourse, at length, on which entrance and toilets are the best in Harrods, and why the others are inferior, you've missed a treat. so much of a treat that I tried to avoid giving that one lifts ... although that's the one who's engaged! so there's hope for them all ...

social life - not a lot. he did his paper round. at 17 he got a job at the local cinema and that worked well. he went on school ski trips, and enjoyed them, to my astonishment, but I always warned the staff that there was no point trying to make him join in the apres-ski disco, he'd really be FAR happier with his nose in a book.

going to uni was scary, yes. but I'd taught him to shop, cook and do his own laundry. we'd made contact with the student disability services and concluded he probably didn't need help immediately - yours might, it should be there if he does - so we drove him up, dumped his bags, made sure he knew the name of the lad in the room next to him, and ran before i burst into tears. The father of the lad in the room next to him took the same course of action, although I don't know that he was likely to burst into tears, but clearly neither he nor we were sure whether to leave or not.

now, do NOT discount Marvel comics. or music. or books. others will share his tastes. DS1's 'obsession' by that stage was juggling. they'd given them a session at the start of 6th form (it activates different bits of the brain, apparently, which I never had!) and our house enjoyed a steady late night rhythm of swish swish swish swish thump swish swish swish thump swish swish thump as he practised. so he unpacked his balls and rings and clubs, and within a day they were all round the communal kitchen, he'd joined the juggling society, and he's still friends with the lad in the room next door ...

DS2 and DS3 are not Aspies, although they may have picked up a few odd behaviours on the way. school got very worried about DS2 because he wasn't 'engaging' with his peers at school. he was doing Scouts so we didn't worry and he was happier in 6th form. he set off to uni, joined some societies, and has also developed social skills.

Now, no-one ever expressed any such worries about DS3's social skills, but he is the one who doesn't seem to have got 'stuck in' at uni like his brothers. so it's not as simple as it looks.

when I was worried about how DS1 would cope with things he didn't seem any good at (like using the phone!) I'd say "you'll have to do that for yourself when you go to uni", and he'd either take it on board and practise, or wait until he needed to do something.

so I don't know if this is something you need to worry about now, or work on now, or just flag up - in the same way as you flag up the need to do your own laundry, sort out food etc. students are a very diverse and tolerant bunch, on the whole, and as long as his lack of social skills doesn't make people feel threatened you may be able to let him get on with it. I think all of mine would have felt stressed if I'd insisted on them doing things which just weren't them, IYSWIM.

Savvy_Sue

SallyUK wrote: »

Especially the part about "using the phone" - this is something that he just won't do, unless he's forced to - lol - he'll occasionally reply to my texts, but when I try to ring him, it always goes unanswered! lol. (What if he never keeps in touch when he goes away?!)

I keep in touch with my older two on MSN - DS3 won't speak to me that way any more! Actually I used to do that even when they were living at home: somehow typing "GO TO BED" was less of a nag than TELLING them. Even though I don't always chat when I see them online, I see they're online and know they're still alive. They also tweet regularly, so I keep an eye on that (but don't tell DS2 ...)

DS3 says I can phone him, because he won't let me be his friend on Facebook. I haven't yet instituted the weekly phone call: MIL calls us every Sunday night soon after 9.30 pm!

But you also learn that no news is good news ...

I think the phone is problematic for them: they're not good at 'reading' faces or body language, but the phone is even worse because it is just a disembodied voice and they can't work out where it's coming from or who it is or what it's about.

With the phone calls DS1 HAD to make, and even with the other two, we will have a quick practice - you're phoning Grandma to say "thank you for my card and present." Ask if she and Grandad are OK. Say we are looking forward to seeing them. Or you're phoning HMRC to ask about a refund of the tax you shouldn't have paid. Tell them your earnings for the year were less than £5000 but you paid tax on some of it. Ask how you get it back. You'll need your payslips - look, there's your tax office reference and NI No, they will probably ask for them.

SallyUK wrote: »

We went to a wedding recently and whilst he was fine during the day, speaking to other guests etc, as soon as it came to the evening reception and the music and dancing started, he was off to his room!

:rotfl: we went to a wedding too, and when the disco started all our 3 were in the 'quiet' lounge with the old fogeys. Apparently DS2 can only dance if he's drunk, and he realised I wouldn't want him getting drunk in public.

But the good news is that he was OK during the day, talking to other people. He CAN do it, and he WILL do it, when he has to and when the situation is right. TBH I hate trying to socialise in noisy situations too, it's just too much like hard work yelling at people over the music!

SallyUK wrote: »

He seems quite ok at the moment and is keen to go to Uni, but I keep imagining him sat in his room on his own! I'm absolutely dreading the time when it comes, where we have to take him to wherever he is going and having to leave him there - I get so upset now at the thought of it - although I'm trying very hard not to let him see this.

I asked him the other day whether any of his college friends were going to Uni to do the same course as him and he said yes, but they hadn't applied to the same uni. I said "Oh, that's a shame, at least you would have known someone" - but he replied and said no it was better for them not to go, as it would mean he'd have to make some new friends when he got there. So maybe I'm just being a normal Mum and worring about nothing, but I can't help doing it anyway!

You are a completely normal Mum, and we have these worries about any of them, you'd still feel this way even without the AS. Trust me ... even though DS2 did have school friends at the same uni, doing the same course, I STILL worried! and it sounds to me as if he's got this sussed in his mind at least.

SallyUK wrote: »

I just feel he needs to go out more and "practice" socialising more.

I would try not to worry about this, especially if he seems at all 'stressed' by 6th form as you suggested in your original post. It's all a question of priorities.

the other question is the extent to which he socialises at school. He may feel he's doing enough there.

SallyUK

Morning Savvy-Sue

Thanks again for replying, it's good to hear about your children too.

Actually, I speak to my DS quite often on MSN too and he is still living at home! lol He seems to "chat" loads on there, so I actually enjoy that.

When he was little, he used to sing at the top of his voice, especially if my Mum was in the car with us, and as he got older, he was absolutely fabulous at playing keyboard and went to lessons with my friend every week. Then we left Scotland to move to England and he never went near the keyboard again - such a waste of talent. I even suggested that he start again, but he won't have it.

He loves music, Beyonce, Rhianna, all the divas etc - but he never ever hums along or moves or anything like that, I just can't understand how he can listen to music and not sing along or hum along! LOL. He loves going to concerts too, believe it or not, and I would have thought he'd hate the crowds there!! But he still doesn't sing along.

Yes, you're right, at least he does know how to behave and to speak to people when he needs to, he just won't ever do it first.

At least he knows we're proud of him, no matter what, and we do keep reinforcing that to him.

I'm still not looking forward to him leaving home though :eek:

Oh and for what it's worth, my son won't add me to his Facebook either!! lol

Sal
xxxx