New Member

[doingmyheadin]

Hi guys- Im new to the site too! My son is 14 and is hopefully having the diagnosis done in Autumn

 

Having been excluded from school a couple of times- and me going in there talking about how impossible he is (and it's not just the age- and he will probably get through it!) the child welfare lady , or whoever she is, decided that she thought he could be falling within the autistic spectrum somewhere and she felt she would put him forward for an assessment.

 

We waited and waited and waited and still 11 months on have heard nothing so we went to our local doctor and explained the situation and he has got us one which should be coming up in the Autumn.

 

Its a really long story with my son and probably not a very typical one but I will probably unravel it as we go along in here if anyone is interested! I myself am exhausted with it all as it really should have been dealt with a long time ago, but the usual story, no-one really takes you seriously unless you keep on and on and on and on..........

 

Hopefully will get to know some of you and will be able to compare demon children!!!

 

Mandie xxxxx

[Diane]

Its a really long story with my son and probably not a very typical one but I will probably unravel it as we go along in here if anyone is interested! I myself am exhausted with it all as it really should have been dealt with a long time ago, but the usual story, no-one really takes you seriously unless you keep on and on and on and on..........

 

Hopefully will get to know some of you and will be able to compare demon children!!!

 

Mandie xxxxx

 

Hi Mandie

 

Welcome.

 

My son is also 14 and he was diagnoses Oct 2007. It has been and still is a tough journey for us. Maybe we could swop stories sometime. I understand how exhausted you feel and also how difficult it is to get people to take you seriously.

 

Diane

[doingmyheadin]

Hi Diane

 

Thanks for your kind reply- Its amazing to think that there is someone else out there that might be (and have been) experiencing similar problems to me- and I can't wait to talk more about it soon but I've got to go out now so will catch up with you soon.

 

Mandie xxx

[Flora]

Hi guys- Im new to the site too! My son is 14 and is hopefully having the diagnosis done in Autumn

 

 

Mandie xxxxx

 

Hi Mandie

 

Welcome to the forum. I have a 14 yo son with AS too.

 

Flora

[doingmyheadin]

Hi Flora

 

Good to meet you! I'm sure I'm going to get all this posting lark wrong, Im not very good on computers and have never really joined in on a forum before so I apologise to everyone in advance if my posts go in at the wrong time and get sent to the wrong people etc!

 

What are your 14 year olds doing this summer hols? Mine spends most of his time glued to his PC playing some horrible addictive game- or he will go out with friends and I wont see him for 2 days!- He does everything to extreme- there seems to be no medium with him!

 

Love to know what yours are doing!

 

 

Mandie

[Tally]

Hi Mandie, and welcome to the forum.

[Diane]

What are your 14 year olds doing this summer hols? Mine spends most of his time glued to his PC playing some horrible addictive game- or he will go out with friends and I wont see him for 2 days!- He does everything to extreme- there seems to be no medium with him!

 

Love to know what yours are doing!

 

 

Mandie

 

Hi Mandie

 

My 14 year old does not do a lot. He will only leave the house if I am with him. He has an obsesson with fish cold water, tropical and Marine. He has a tank of each but 2 tropical. We spend our time going between the two aquatic centres. He is also a talented musician so each week he has a guitar and drum lesson. The rest of the time he spends on his xbox, sometimes my husband does get him to go to the gym or the swimming pool with him.

 

It gets me down from time to time. When we do get him to do anything different we are exhausted by the amount of time effort and preparation to get him there and we are often too tired and anxious to enjoy it ourselves. I keep telling myself it will get better but the older he gets the worse his anxiety becomes. I think hormones might have a part to play so when he finally comes out of puberty things might start to improve again.

[Kathryn]

Welcome Mandie,

 

My daughter had a fairly late diagnosis too, when she was 15. I hope you get some answers at the forthcoming assessment in the autumn.

 

K x

Edited August 6, 2008 by Kathryn

[purplehaze]

Welcome to the site, I also have a 14 yr old son who has ASD. his behaviour can be quite extreme and difficult too. Look forward to discussing and sharing info X

[Diane]

Welcome to the site, I also have a 14 yr old son who has ASD. his behaviour can be quite extreme and difficult too. Look forward to discussing and sharing info X

 

Hi

 

I have just signed up to the petition and have let all my contacts know about it.

[doingmyheadin]

Hi guys,

 

When I took Tom for the assessment that I was expecting to get with him with CAMS, I had to tell him at the last minute that we were going, otherwise if he had had too much time to think about it I just wouldn't have got him there.

 

It was such a build up as the school had promised to arrange an assessment for Tom which never happened (I waited months and months and didn't hear a thing- kept chasing but the school kept saying that they were still waiting) So I went to the doctors and explained all and got this appointment through for the assessment- I was thrilled.

 

Dragged Tom along- telling him a little white lie- that the school had organised it and lets just go and get it out the way etc etc . I also explained to the receptionist all this saying that if Tom got wind of the fact that I had organised it- he would probably never speak to me again(not that he speaks to me much anyway!) so please be subtle with it all.

 

Anyway we got there to find that as from last week (this is what the doctor said) they could no longer do assessments. I just couldn't believe it.

What's more, the doctor had my letter out in front of her and kept referring to it- so Tom immediately knew that this had come from me- he was furious when we got out of there. Reckoned that I was making him look like a freak and that I'm not 'special needs Mum!' You see he doesn't think there is anything wrong with him.

 

Anyway the doctor got back to me a few months later saying there is a new pilot scheme starting up soon to test for ASD and she has put Toms name down for it. It should be in the Autumn. I have told her that I don't know how or if I will be able to get him to it but she said it may not be necessary to take him along although I don't know how they can do an assessment on him without seeing him!

 

Anyway it's a step in the right direction I suppose!

[Stella63]

Hi Mandie

 

Sounds suspicially similar. AJ is 15, dxed AS when 14 and now dxed ADHD at 15. School and home have been a nightmare for as long as I can remember - struggling now to just keep him in school for the last year!

 

He also is either glued to pc or out with the 'hoodies' getting into trouble - currently under the youth justice service as well!!

 

Oh the joys.......

 

Stella x

[Diane]

I don't know how they can do an assessment on him without seeing him!

 

Hi

 

When my son was diagnosed I did what is called a 3DI assessment. This took place 9 months after we had been attending CAMHS. It would have happened sooner if i had not been resistant to the idea. 3DI is a only carried out with the parents your child does not attend. You are asked loads of questions relating to their development. I found the whole experience quite upsetting as I had to face up to what he did not do or struggled to do. The psychologist aso used evidence from the time he had spent with my son as well as feed back from the school before finally making his diagnosis.

 

With regard to your paragraphs about 'little white lies' and I'm not 'special needs Mum!' I can relate to these.

 

Keep plugging way.

[doingmyheadin]

How interesting Diane,

 

That sounds exactly what I might be up against then because the doctor did say that I would have to answer a lot of questions going right back to when he was a baby!

 

I'm completely up for that - it's engrained in my memory what a nightmare it has been bringing him up!

 

Basically I am just worried now that he is going to end up in an awful lot of trouble when he leaves school and with no support. How he is ever going to be able to hold a job down I just do not know as he has no social skills whatsoever although he's an intelligent lad. But he always gets it all wrong- he doesn't seem to have any common sense whatsoever- and however much you try, you cannot teach someone common sense. It's the most frustrating thing in the world- I seem to spend my life reminding Tom to say thank you at the correct time and please etc

 

Banging my head against a brick wall comes to mind!

 

It is strange to think that I have brought up him and his sister in exactly the same way and Steph has no problem interacting with people whatsoever but I still seem to be teaching Tom when to open his mouth and when not to! He still doesn't learn though!

 

Got to go out now but will talk later.

 

Mandie

[Diane]

Hi Mandie,

 

So much in common.

 

With help from our psychologist we have taught Alistair some of the social skills he needs to get on. He now after many months seem to be getting the hang of it.

 

 

We have had a lot of problems with getting him to attend school and now have the help of the inclusive resource who have organised a mechanics apprenticeship for him starting in september. Initially it is only one afternoon a week but they are working towards him attending two and a half days as they recognise that the school environment is one he cannot cope in. So the less time spent there the better. Getting him to agree to attend the apprenticeship has been another battle and I still do not know if he will follow through. I will find out in September.

 

Alistair also has a sister Gemma she has just turned 17. Like yours she has no problems interacting what so ever she is just NT (i think thats the what they say, still learning these abbreviations) She has been through the mill a bit because of her brother and she has had councelling sessions at CAMHS. She is coping relly well with everything now.

 

When teaching Alistair something new we just kept breaking whatever it was down in to smaller steps in fact minute steps until he is able to make a step forward if that makes sense.

 

It's good to talk. Now i sound like BT.

Edited August 7, 2008 by Diane

[doingmyheadin]

Hi Mandie,

 

So much in common.

 

With help from our psychologist we have taught Alistair some of the social skills he needs to get on. He now after many months seem to be getting the hang of it.

 

 

We have had a lot of problems with getting him to attend school and now have the help of the inclusive resource who have organised a mechanics apprenticeship for him starting in september. Initially it is only one afternoon a week but they are working towards him attending two and a half days as they recognise that the school environment is one he cannot cope in. So the less time spent there the better. Getting him to agree to attend the apprenticeship has been another battle and I still do not know if he will follow through. I will find out in September.

 

Alistair also has a sister Gemma she has just turned 17. Like yours she has no problems interacting what so ever she is just NT (i think thats the what they say, still learning these abbreviations) She has been through the mill a bit because of her brother and she has had councelling sessions at CAMHS. She is coping relly well with everything now.

 

When teaching Alistair something new we just kept breaking whatever it was down in to smaller steps in fact minute steps until he is able to make a step forward if that makes sense.

 

It's good to talk. Now i sound like BT.

[doingmyheadin]

Hi again Diane,

 

We seem to be in similar situations!

 

My daughter is 16 , so not much younger than your Gemma (i think that was her name!)

 

I don't really have a problem getting Tom to school although I have to take him in the car because he just wouldn't get there otherwise- he would either miss the bus or have a problem with someone on the bus, so I usually manage to get him calmly to school.

He gets quite pent up the nearer we get to school, and often delays getting out of the car until he sees someone he knows and I would think feels safe with- it's bizarre- me and Steph have worked him out to a t!

 

But he enjoys the routine of school, and if we don't leave on the dot of 8.10am he has a break down- he gets really stressy It's wierd because although he is really anxious and stressy about getting to school and getting home he is really the class clown, very gobby and always the one who will climb up on the school roof to get the football down etc.

 

He wanted to go to college one day a week to do food catering (when they had to decide their GCSE options) but I put him off it because I know that he probably wouldn't last a minute there as he would be out of his familiar stomping ground and routine and I just think it would be a disaster- more importantly he is clever enough to stay on at school and take the equivalent GCSE's.

 

I just feel that all the time I can keep him at school where he is familiar with and where everyone sort of knows his challenging behaviour, he has a better chance.

 

Good luck to Alaister at college- it will be really good for him to start something new in a new environment etc- I really wish him all the best- keep me informed as to how he does!

 

Mandie

[Diane]

Hi Mandie,

 

It is good to hear that Tom enjoys school. Lucky you.

 

Alistairs mechanics course is not being done through college but a charitable organisation called NARCO who teach disaffected children. He will be taught on a one to one a lot of the time but they will encourage him to work sometimes in a group of not more than five other children. I think in any one day there are no more than 10 children on site. It is a lovely set up and I have my fingers crossed that it will work out for him. Hopefully he will walk away with his city and guilds in mechanics. Towards the end of the course he will be given a placement with a garage and if he proves himself then an offer of a job is often made. We shall see. We are a few years away from this yet a lot could happen.

 

How does your daughter cope with Toms behaviour?

 

Diane

[purplehaze]

Hi

 

I have just signed up to the petition and have let all my contacts know about it.

 

 

Thanks Diane, our children need traind understanding staff. X

[purplehaze]

Hello Diane and doingmyheadin, My son who is 14 dx with ASD and has a statement to support him in school (still have loads of problems). I also have a daughter who is 17-she keeps me sane.

 

My son loves bikes/things with wheels-so when he had the choice to do motor Vehicles and I thought this would really help him-but didn't think about the noise, size of the room, who was going to teach the lesson. Well my son misses most of the lessons and stays in study support. You deffinately need to make sure the right support is in place so they can achieve their best. X

[doingmyheadin]

Hi guys,

 

Interesting that both your boys are into mechanics or cars, I wish Tom would get into anything but his x-box!

Are they taking it seriously do you think or are they just doing it to keep their Mums happy?! It's brilliant though anyway as it will give them a target and something else to focus on and also will teach them some life skills too, which is so important.

 

I don't know if Tom really likes school that much, as often he will try pulling sickies and usually I work out that it was something Tom was anxious about that was going to happen that day. It could be something like , he has upset someone the day before, could have been a teacher or a pupil but he will have to face them again the next day or it's because he knows he has got to do a detention that day which means he misses his bus home and he has to get the train which means having to walk across town to the station on his own- so it's not the detention he minds doing it's the nervousness about walking 5 minutes to the station and who might be out there! (of course he would never admit any of this.

What he likes about going to school is the routine.... he knows that we get up at 7- well he gets up 20 minutes before we leave, he has breakfast, we leave the house at 8.10am and I drop him at school for 8.30am. When we get to school though, before he gets out of the car he gets really anxious again though (he even often gets really bad stomach ache)- he will start fiddling with his shoelaces or pretend to look for something in his bag, but me and Steph know that it's just him stalling getting out of the car waiting to see someone he knows, someone he will feel safe with.

Sounds pathetic, doesn't it- particularly as Tom is so gobby and lairy once he is in a 'comfortable place'- if you get me.

 

Steph is brilliant, she has had times over the years when she has felt like killing him but I think now she has had to listen to me waffling on about it for so long with the few people I feel who will half understand she can understand the problems he's got and she tries to be a little more patient with him. Also now that she's 16 the age gap really seems to be widening and she's hardly ever here.

 

How do your girls get on with their brothers?

[purplehaze]

Hi guys,

 

Interesting that both your boys are into mechanics or cars, I wish Tom would get into anything but his x-box!

Are they taking it seriously do you think or are they just doing it to keep their Mums happy?! It's brilliant though anyway as it will give them a target and something else to focus on and also will teach them some life skills too, which is so important.

 

I don't know if Tom really likes school that much, as often he will try pulling sickies and usually I work out that it was something Tom was anxious about that was going to happen that day. It could be something like , he has upset someone the day before, could have been a teacher or a pupil but he will have to face them again the next day or it's because he knows he has got to do a detention that day which means he misses his bus home and he has to get the train which means having to walk across town to the station on his own- so it's not the detention he minds doing it's the nervousness about walking 5 minutes to the station and who might be out there! (of course he would never admit any of this.

What he likes about going to school is the routine.... he knows that we get up at 7- well he gets up 20 minutes before we leave, he has breakfast, we leave the house at 8.10am and I drop him at school for 8.30am. When we get to school though, before he gets out of the car he gets really anxious again though (he even often gets really bad stomach ache)- he will start fiddling with his shoelaces or pretend to look for something in his bag, but me and Steph know that it's just him stalling getting out of the car waiting to see someone he knows, someone he will feel safe with.

Sounds pathetic, doesn't it- particularly as Tom is so gobby and lairy once he is in a 'comfortable place'- if you get me.

 

Steph is brilliant, she has had times over the years when she has felt like killing him but I think now she has had to listen to me waffling on about it for so long with the few people I feel who will half understand she can understand the problems he's got and she tries to be a little more patient with him. Also now that she's 16 the age gap really seems to be widening and she's hardly ever here.

 

How do your girls get on with their brothers?

 

Hello, Alot of ASD children like objects that have wheels or spin etc. My son loves spending time taking bike parts apart and customising them.

 

If only my son could do things to keep me happy unfortunately his brain doesn't work like that. LOL

 

My son dosn't like school either and would drop out if he could, he has learning difficulties as well so struggles alot with the work. He is always in trouble because he flips out for little things-usually sensory or anxiety. My son also has a bowel disorder which is due to stress and anxiety. He has a statement for 20 hrs plus support a week and is still struggling, we are going to have a meeting in September to try and work things out.

 

My daughter is a mature 17 yr old and could at times strangle her brother . She can be scared of him at times (he can be very agressive/impulsive) and other times she just argues with him like brothers and sisters do. She does get upset that he shows no love or atachment for her and finds it very hard to beleive that he doesn't hate her. His autism makes him very cold at times and we are very loving, so it is hard. But over the years I have been able to teach him how to act, so on my birthday he buys the same present every year and best of all he nows allows me to kiss and cuddle him when he is calm. X