he stayed out all night

[hev]

they took him out for day yesterday,when they got back it was late and they said he couldnt go out again,he stormed out anyway,we was all searching about for him,got to 11.15 and he strolls in my mums saying he was sleeping at his mates,mum said no but off he went,my parents in their seventies and they told me today they cant handle stress any more dad has cancer and its too much,they have been brilliant and i understand it . he came home here today and for no reason started calling me a paedophile out my front,full view of the neighbours then ran in and locked us all out,got a knife and started going for us with it social services were due here and when the man came steven was all smiles!!i told the man what had gone on,steven laughed,they gonna sort out overnight respite for next week they reckon,good friday tomorrow,i dont think it will be in my case,dreading tomorrow

[butterfingersbimbo]

oh chic dont know what to say, but want to send you a big hug <'>

[Clare63]

Don't think words are enough, what you need is action, lets hope the respite comes sooner than expected.

Thinking of you Hev

<'> <'> <'>

Clare x

[curra]

Hev,

 

<'> <'> <'> <'> <'> <'>

 

I hope the overnight respite helps.

 

 

CurraXX

[Bagpuss]

Hev <'> <'> <'>

[baddad]

<'> <'>

[David Matthew Baker]

<'> >< <'> <'> <'> <'>

 

I hope things get better soon. Wishing you all the best, David.

[something vague]

Hi Hev,

 

I hope things get better for you soon and SS come up with some good support. I think once that is up and running you are going to have more people who know how difficult it is for you and hopefully they will start loking for some solutions. <'> <'> <'> You are doing a brilliant job

 

SV

[Alexandra]

oh my goodness, hope you get the respite,

 

and things improve really soon xxxxx

 

<'> >< <'> >< <'> ><

[Frangipani]

Hi Hev,

 

How long has be been behaving like this, is it only since he hit puberty????

 

This is very typical behaviour and I have spoken with parents on other forums about this and they agree Risperdal is the only thing that has been trialled on ASD kids that works and calms them down, stopped them acting as if they were possessed by some demon, and stops them being physically and verbally abusive.

 

I truly feel seeing a new Paediatrician that Specialises in ASD & ADHD from all your posts I have read to date, it sounds like he has both, just like my son.

 

Look on all the posts from people that have trialled it and stuck with it, because they do see their little bundle of joy 'happy' again. Not so aggressive, I truly think it is worth a try in your sons case.

 

You need to commit to it for at least a month, but make sure you have the best doctor on hand, and if you have any problems, you SHOULD be able to pick up the phone and ring them.

 

Some parents try meds and toss in the towel way too soon, the other thing is, different med react differently with different kids, so just because any of the ADHD type drugs works for one, there are over ten different brands and your Paediatrician will know which one will work for your son.

 

Risperdal seems to work very successfully and probably one of the most popular ones for ASD kids.

 

Many parents will disagree with me, but their child I believe isnt a little tyrant like my son was and yours IS without it.

 

What have you got to loose???? besides your sanity, or your son ending up in detention, I know many situations like this.

 

Reading your posts over the last month alarm bells are going off - your boy needs help and I dont believe putting him in Residential school is the be all and end all.

 

Many will totally disagree with my post, and I put up and shut up many times on here, but I am not going to keep quite in your case any longer. Seek another Paediatrician, read the posts in Meds and see how many success stories there are. It wont make him 100% perfect......trial your son for a month and let your son tell you, or watch your son over that time, I am sure you and your family will be blessing the stars.

 

Puberty triggers off this out of control behaviour but its 10 times worse for some ASD kids I feel you are putting up with a lot more than you should as he is your first son and you think you should be able to manage and should be able to handle it, but, it isnt going to get better without some intervention as I have suggested.

 

Sorry if I sound like I am repeating stuff you already know, I just think its worth one more try, I know you tried and failed, but it takes time and patience the doctor needs you to keep a diary noting everything you see, and communicate what is happening day by day, then the Paediatrician will say no or yes, or he would be better suited to this other medication.

 

If the Paediatrician gets it right, you will no longer need 'respite care' you will have your family back, only you can make this decision, I have said enough, just hope you and your family get the RIGHT advise this time so you can step OFF this merrry go round your on, tell me about it, I have been there.

 

Trust me Hev, Wishing you and yours all the best

 

L & P

 

F xx <'> <'> <'> <'> <'> <'> Hey its 2am in the morning here so havent had a chance to edit anything as I am very tired, so just remember we all care, you have been through the mill for long enough now. You are an awesome mum with a HUGE heart, high five!!!!!

[bid]

For us, at any rate, I was happy for my son to go to a residential school instead of being heavily medicated as he was before when he was in mainstream. We have been fortunate that he hasn't needed any medication again, after being heavily medicated from the age of 8 to 15.

 

We all have different experinces, and all are valuable.

 

Bid

Edited April 6, 2007 by bid

[hev]

bid do you think the residential was more effective than the medicine?

 

he has got worse since puberty Fran,much worse,im wondering if this is a phase which will pass,im very confused about everything to be honest,not coping well today

[hev]

have looked on the medication threads and i have found posts on risperdol and risperdone,what one are you meaning fran?if you can do links can you do the one you mean?thanks

[bid]

Oh Hev, I wish I could give you easy answers, hun <'>

 

I can only tell you about my experience.

 

My son had been on Ritalin from the age of 8. At other times he was also on and off an additional medication for anxiety. By the time he was 14 he was on also Sertraline. When he went into crisis, his consultant wanted to put him on Risperidone too.

 

I felt he had been medicated for all this time essentially to make him 'cope' in mainstream. I decided enough was enough as all these meds had never really sorted out his difficulties. I took the decision to take him off all his meds as we waited for him to go to a residential school because I believed that what he needed was the right, supportive, specialist environment. I felt that in my son's case, the meds just tried to mask problems, not actually sort them out.

 

For us this worked, and although he has had wobbles, he hasn't needed to go back on any meds.

 

BUT...this is just my child. I don't know enough about medication to advise you. You would need to talk to his consultant. I know some people have found Risperidone very helpful during a crisis. For some people, I believe the combination of meds and a residential school has worked well, too.

 

You know Steve the best, and you also know your wider family situation best. I had to consider the safety of my other children and the impact on their mental health, too.

 

Have you visited any schools yet? That's the best way to get a really good idea of what residential is all about.

 

Good luck, hun, and I hope you get the support you need sooner rather than later <'> <'>

 

Bidx

Edited April 6, 2007 by bid

[hev]

thanks bid <'> <'>

 

havent visited any schools yet,got a multi agency meeting with lea and school after easter,by the time its sorted he would have left school by then i reckon anyway!!everything takes so long and at the moment every day seems an eternity

[Frangipani]

Hi Hev & Bid,

 

I can see Bid is against meds, well I am for them, so lets agree to disagree here SO we can way up the odds.

 

In MY sons case I dont agree with the comments 'heavily medicated just to attend school'! Before we made the decision to stick with meds have a read on. My son has been to five of the best specialists as I too didnt like the meds, but each said IN MY SONS case he needs to be on meds 365 days of the year. Not just to attend school, but to allow him to function and communicate freely and more relaxed. Perhaps I should bring my son into the equation, so he can share his story. He is old enough to say so, he loves his meds, we have tried every avenue to have him off them, even if he went to Residential school, they would keep him on them.

 

Without meds he has no eye contact, becomes non verbal, violent because he gets angry wants to say something but his brain wont process the thought so he could put into words on how he feels. I didnt just go "OH I will put him on meds"..... after the end of the assessment period and ongoing updating of assessments they ALL AGREED my son needs to be on meds for LIFE!!!!!!!!!!! Not just to go to school.

 

He was placed on these and is reviewed every three months. Quote from special school teacher, without regular meds he was worse than all the kids at special school, even in special school they recommended I go with the Paediatricians advise and recommended four other Specialists to do various tests and assessments, this was over a period of working closely with this group for 3 years, it wasnt a decision made lightly, my son had huge problems in and out of school.

 

As I said in the first post to you did all things spiral and get out of control by Puberty???? Because as I have tried to explain many times on here, my sons Paediatrician explained to me it is common for everything to go pearshaped when they reach Puberty. None of his meds would work, we had to start from square one ALL OVER AGAIN, and review everything, as my son presented behaviours exactly like Steve and I was afraid of the safety of him and my daughter and myself.

 

My son went through the EXACT SAME BEHAVIOURS that you have been describing about Steve; for the past 6 months, I have quietly read your posts, but said nothing as I know there are a lot on here that would happily throw the book at me for speaking out on meds as they have in the past. Which is wrong when they dont know the full picture of MY CHILD which I have tried to explain. You can't be biased and say one size fits ALL. We all know that anyway.

 

Risperdal the medication has been successfully helping kids with Autism and extreme behaviours like your son and mine, for almost 10 years now.

 

In my sons case: To explain, in PUBERTY, something becomes 'unwired' Ritalin & Catapres that used to help him 'be a person' that could freely express himself STOPPED WORKING AT PUBERTY!!!!!! Everything went down hill. The addition of 'Risperdal' was the ONLY way to settle my boy down. AGAIN I visited 3 other specialists for second and third opinions as I didnt want my son to have to take ANY meds. They ALL wanted my son off meds but after spending months with him agreed he would need to be on them for life.

 

His Paediatrician said how amazing it was for children with Autism and after going over my sons history AGAIN said trust my sons Paediatrician he is one of the BEST!!! Well the proof that Risperdal was the RIGHT CHOICE FOR MY SON was out of the mouth of my son B.. After 3 or 4 weeks, he came up to me and gave me a hug and said thankyou Mum for all the trouble you have gone to to sort out my Meds and getting me this new medications he said he feels 'great' he went on to explain how he got so mad and wanted to punch holes in the wall as he just couldnt put words into a sentence, just in the home, forget about even attending school. But he also said when he was in class his brain felt like it was working properly for the first time. He said before taking Risperdal at school, he would walk in the room and just couldnt get the gist of the conversations that were going on, like he just didnt have the mental energy to fit in, but he also said that was also the same at home with me and my daughter, he just couldnt relate his feelings, even though I was always patient and took time with him.

 

After 3 weeks on Risperdal I noticed my boy smile again, and my daughter and I were relieved as prior to Risperdal we both thought this was the end, if it didnt work, we would have to put him in Residential care. As I only have two children I wanted to avoid this at all costs. But the meds were not my choice the were "my sons choice'. He would be happy to come on here and back up everything I have said. We went from the nightmare you are going through right now, to one happy family again. Thanks to Risperdal, and he has safely been on the meds since the age of 12 and have since had many more second and third opinions about it, and they all say, he is functioning so beautifully on it, he is a success story for it. My memory was I was happy that I could sit down with him and chat again and he actually made sense. He was happy in his alone time too, this was the biggest factor. This is why I have been PRO Rispedal.

 

I have been listening to you Hev, I believe this is worth a trial for a month and let Steve tell you what he thinks. But make sure you have the best Paediatrician and a diary on hand and note all the changes in behaviours, no doubt they will 'all' be positive.

 

Steve & B.. are very similar just from my own observations, I would love you all to be one happy family and believe it can be achievable with Risperdal.

 

With regards to the links on the forum, I suggested you read the posts in Meds the topics titled Risperdal, but Hev, you know Steve, you are at your witsend and so are your family ask your GP to refer you to a good Paediatrician that 'specialises' in ASD & ADHD. If this doesnt change Steve's world then consider Residential. It may be all you need to do to make a huge difference in Steve's world.

 

As I said to my son Diabetics need Insulin, Epileptics need Carbamezepine, ASD & ADHD kids need med or Risperdal. My son also has slow release Concerta with the Risperdal.

 

God luck Hev, in what ever decision you make,

 

Love

 

Fran xx

 

Love

Fran xx

Edited April 7, 2007 by Frangipani

[bid]

Fran,

 

I am not at all 'anti-meds'...if you re-read my post you will see that I have very carefully spoken only about my experience with my son. I have said that I don't know enough about meds to advise Hev about her son.

 

I have not dismissed meds...if you look back you will see that I have said I understand they can be very helpful in a crisis situation.

 

However, I think it is equally important not to dismiss a residential school for AS. I know nothing about residential schools for AS in Australia...they may be very different to those in this country. But I can share our experience of a residential special school for AS in the UK.

 

Bid

 

Don't want to hijack your thread, Hev, so I'll leave it there <'>

Edited April 7, 2007 by bid

[Suze]

<'> , oh Hev...................I really don,t know how your coping...to tell you the truth I already thought your son was taking meds...

 

My son only takes melatonin to help with sleep anxiety etc....but I do have a friend whose son takes Risperdol(or whatever it,s called).Her son had suffered badly at school things escalated ...he was expelled and out of school for 2 yrs.As he got older things got worse.....self strangulation......running in front of cars......etc .His physch recommended meds and things have become a whole lot better.He now copes at a specialist unit.I was talking to his mum last week and they regularly review things , she takes every day at a time, and has the guidance of a good physch.At christmas they took him off the meds.........the deterioration was quick , he was seen asap and they began again.His mum told me after what they,ve gone through as a family she could,nt have coped any longer , .............I really don,t know how to advise you as things just seem to be getting worse and worse for you, but both Fran and Bid have both had more experience of this than me.Take care .love suzex.

[annie]

<'> <'> Hev <'> <'>

 

Mod hat off

 

I just want to add our experience having lived here and Australia. Alex is diagnosed AS and ADHD, both being diagnosed in Australia. Alex's behaviours were very similar to Steve's, very impulsive, no regard for authority etc. etc. He was put on Ritalin for 2 years when he was about 8yo. We and Alex's paed. decided to remove the medication as his appetite was suppressed (he's very thin anyway), he was becoming more and more lethargic and when the Ritalin was wearing off meltdowns were worse than ever. After coming off the Ritalin, Alex's behaviour wasn't really any different, so we all felt that we had made the best decision. The problem that we had in Australia was that in school support was non-existant. School wanted him out because they couldn't handle him, but the only other alternative was an Autistic school which would have been the wrong place for Alex. An ASD unit attached to a mainstream school did open just before we came back here (4 years ago), but the waiting list for a place was huge. Not being able to find the right education for Alex was the main reason for returning to the UK.

 

When we arrived back here, all sorts of school problems happened including countless exclusions ending with Alex self harming and being put on Prozac and Melatonin. We withdrew Alex from his mainstream school (with an ASD unit). Straight away, we noticed a big improvement in Alex's health and behaviour. As Alex had a statement, we fought to get an education package which suited Alex's needs which involved small group learning with teachers that cared and were very supportive. In no time, the Prozac and Melatonin were withdrawn and Alex's mental health got on an even keel . He is now doing very well, meltdowns are very rare and he is meds free.

 

All I can say is that every child is different and what works for one may not work for another. We never tried any other meds apart from Ritalin, Prozac and Melatonin, but the answer for us was to change Alex's style of education. Being in Australia for most of his educational life gave Alex no other alternative, we were given the choice of trying other meds while we were there, but decided against it. Since being back in the UK, I do think that meds are used less than in Australia. The right support in the right education setting on the other hand over here (even if it takes a fight to get it ) is much more commonplace than in Oz.

 

Annie

xx

[Frangipani]

<'> <'> Hev <'> <'>

 

Mod hat off

 

We and Alex's paed. decided to remove the medication as his appetite was suppressed (he's very thin anyway), he was becoming more and more lethargic and when the Ritalin was wearing off meltdowns were worse than ever. After coming off the Ritalin, Alex's behaviour wasn't really any different, so we all felt that we had made the best decision.

 

Obviously your son functions well without medication...........

 

The problem that we had in Australia was that in school support was non-existant.

 

You are one case, you seem to be generalising as if this is the case for all of Australia.......

 

 

School wanted him out because they couldn't handle him, but the only other alternative was an Autistic school which would have been the wrong place for Alex. An ASD unit attached to a mainstream school did open just before we came back here (4 years ago), but the waiting list for a place was huge. Not being able to find the right education for Alex was the main reason for returning to the UK.

 

This was just bad luck, in your situation and very unfortunate for Alex, ASD kids are well catered for over here in and out of mainstream.

 

When we arrived back here, all sorts of school problems happened including countless exclusions ending with Alex self harming and being put on Prozac and Melatonin. We withdrew Alex from his mainstream school (with an ASD unit). Straight away, we noticed a big improvement in Alex's health and behaviour. As Alex had a statement, we fought to get an education package which suited Alex's needs which involved small group learning with teachers that cared and were very supportive. In no time, the Prozac and Melatonin were withdrawn and Alex's mental health got on an even keel . He is now doing very well, meltdowns are very rare and he is meds free.

 

 

You mentioned earlier, that your son managed well without meds, this is an isolated case, I feel you are not taking into consideration kids that are lower functioning ASD's compared to Alex, also, Alex had a lot of changes moving overseas from school to school, these alone would have added to Alex's problems which he needed medication for, just for a brief period. Again, your son is clearly not as severe as Hev's son, or mine.

 

 

All I can say is that every child is different and what works for one may not work for another. We never tried any other meds apart from Ritalin, Prozac and Melatonin, but the answer for us was to change Alex's style of education.

 

That may be the answer for kids with mild Aspergers which you have said several times your son copes well in special school without meds. Again a bit one sided

.

 

 

Being in Australia for most of his educational life gave Alex no other alternative, we were given the choice of trying other meds while we were there, but decided against it. Since being back in the UK, I do think that meds are used less than in Australia. The right support in the right education setting on the other hand over here (even if it takes a fight to get it ) is much more commonplace than in Oz.

 

So you have gone from Moderator to a Specialist Paediatrician, do you have a medical degree to back up your claims, and insult every parent that gives their child medication on this basis, that Australia medicate more than the UK, that is a really profound Statement coming from a Moderator.!!!! Who only lived in Australia for 4 years. I think you are putting your personal bias in here and not giving Hev a fair chance to make up her own mind. I dont think she should be making this decision being swayed either way by us, but to speak with her Paediatrician before she turns her whole family situation upside down and ships her son off to Residential care, and again, you said nothing about your son taking Risperdal, so I dont appreciate the tone of your post, that is why I have replied as so......!!!!!!

 

I dont believe any comparisons can be drawn here.

 

Sorry Hev, and I agree with Suze's post, this is what we are really dealing with here. Enough said, I just wish you all the best Hev. I would ask any other parent that has tried and tested Risperdal will speak positively about it Hev, this is not being 'heavily medicated' like Diabetics need Insulin, Epileptics need Carbamazepine, I believe those with lower functioning ASD and ADHD benefit a lot by taking 'Risperdal. Dont make this sound like the kids are heavily medicated...... that totally unfair.

 

Just one other thing, Bid, I wasnt referring to you or your comments at all, I made a generalised statement, as many people make the statement 'heavily medicated' I am not quoting anyone in this thread. Just people in general, and their comments towards my posts in the past, without naming names.

 

Good Luck Hev, in whatever you do. Steve's happiness is what this is all about, at the end of the day.

 

Love

Fran xx

[annie]

I've pm'd you

 

Annie

xx

[bid]

Two things, Frangipani:

 

First of all, you did refer to me, here:

 

I can see Bid is against meds

 

Secondly,neither Hev nor myself, nor I believe anyone on this forum whose child goes to a residential school or is thinking about this provision for their child, would do this:

 

ships her son off to residential care

 

My son went to a residential school for AS, and this is the type of school Hev is looking at for her son. It has nothing to do with residential care, which is a completely different provision in the UK.

 

Bid

Edited April 7, 2007 by bid

[Flora]

This has nothing to do with me but I feel the need to make an observation.

 

There is nothing in either bid's or annie's posts that suggests they are imposing their views on either hev or anyone else! All they they did was relate their own experiences with no imposition at all. There was no strong opinion from either of them, just observations based on their own experiences. I think that Frangipani is reading something that simply isn't there, and getting annie and bid's posts mixed up to boot!

 

 

Flora

[louxx]

<'> <'> <'> <'> <'>

[baddad]

Whoo boy!

Hadn't looked at this thread for a couple of days - don't things go off quickly around here!

 

hev, hen - I'm neither for nor against medication - all I can say is that for Ben (HFA and co-morbid ADHD) dietary changes and responsive support strategies worked far more conclusively than meds did. That's not the case for all kids though, and if meds are tried and work for the childs benefit (rather than the schools etc) that's fantastic. The only way of finding out, is to look at the options, check out the possible side effects - short and long term (some of these things are none to easy to come off of either) and trial them with medical support...

Residential school: Personally, I think this could be the greatest opportunity for Steve to get the educatiuon the current school can't provide, and may possibly be the best thing that could happen in terms of your inter-family relationships too. Additionally, Steve may well get the opportunity to make some real networks and friends outside of the family unit, which from your posts hasn't really been happening for him where he is. Residential school is not an 'easy option' for parents - it's a b****y hard one! If it's the best one (and from the information you've provided i think it is) Steve deserves that, and so do you. We're talking 'greenhousing' here - not 'warehousing'...

 

Tarzipan - Not sure where you get the idea anyone is being 'pro' or 'anti' meds... what I see is you giving your very positive experiences while others have detailed their less positive ones... all sounds quite well balanced to me.

I do have one concern though, and that is the suggestion that the need for meds can be measured by a childs 'place' on the spectrum. Personally, I don't think that has got anything to do with it - I think the need for meds (or otherwise) is based on individual chemistry, physiological and psychological make-up, and anyone anywhere along the spectrum may find their lives enhanced or adversely affected by them. A side issue of that would involve who's perception is taken as the 'yardstick'...

Quite clearly your own son, by telling you directly, has indicated that medication has been helpful to him. That's great, but with somebody with severe communication problems the judgement may be an outsiders judgement - and there are plenty of care homes who would regard a severely depressed but passively 'drugged' client as preferable to a happy but boisterous non-medicated one. At a less extreme level, I have seen many, many children with ADHD receiving ever larger doses of ritalin because as their academic career progresses the school continually move the goalposts on behaviour that THEY feel they can cope with. Neither situation is in the best interests of the person receiving the care.

 

Sorry for hi-jacking your thread a little Hev - hope my contribution has been helpful in some way

 

L&P

BD

[Guest flutter]

well we had the script for the meds

we did not give her them cos hubs was convinced that hers was hormonal, he was right, ( but i wanted to medicate cos i was being badly beaten!)

she is at a school where she is happy, 2 years ago, i assumed she would be at a specialist school.

it would have broken my heart to send her away, but as many here can attest it can be the making of a child, and i would have done it, because she needs the best as do all our kids,

i know my child is differnert from yours, and we have to find the right place for them and us

and if that means a bit of a break away then so be it, cos i bet steve will come back a diffenret kid, i assume as years ago ( my bruv was at a barnardos school for "maladjusted!") that most of the staff, are deep in physchology and stuffs, so would be able to support, and offer and closer proffesional support and oppinion.

sorry i ramble ( as per yes i know!!)

((hev))

xxx

[curra]

<'> <'> Hev <'> <'>

 

Mod hat off

 

The right support in the right education setting on the other hand over here (even if it takes a fight to get it ) is much more commonplace than in Oz.

 

Annie

xx

 

OMG, are thing THAT bad in OZ? (no offense to anybody, it's only supposed to be a joke)

 

Now, talking seriously, some AS children need a lot more help than just the right support at school, as it has been in my son's case. M needs a very low dose of Risperdal to calm him down, that has been necessary in order to help him with counselling otherwise he wouln't respond to it. As to residential school, I think that is also something that dependes on the needs of the child and the type of family. I prefer to have my son with me because he's a child with too many social fears and before he can make a minimum of contact with other people I don't think he would be feeling happy away from the safety of his home. But that is just my son's situation.

 

Good luck Hev, I hope that you get the help Steve needs!

 

Curra

[hev]

only just logged on tonight sorry if i started a dodgy topic,i didnt mean to

 

steve is on clonidine tablets 40 mg a day but they are not making any difference to him, the reason hes still on them is because i have to see cahms before he can go off them as going off them suddenly causes high blood pressure,got appt on 20th.

 

i am going to talk to cahms about risperdol as this is a living nightmare,steve needs help with everything,he gets upset about his behaviours so im gonna see what doctor thinks

 

i am very hopeful about residential,ive got my head round the fact hes going,he will be home weekends and if it works for him i will be so pleased,hes not coping at home so we are going to try residential to see how it goes.

 

thanks for all your advice(even bighead )it is always appreciated and does help me

[Frangipani]

I've pm'd you

 

Annie

xx

 

Thanks for clearing that up Annie, <'>

 

Hev, Bid and others,

 

I will just explain a few differences to the Australian system versus the UK system, that I often have trouble understanding.

 

But more than that I just want to clear up my previous posts so you understand my comments.

 

Its easy to get lost in translation of communication over the internet.

 

With regard to medication I believe 50% of kids diagnosed with ADHD and AS are on medication and really shouldnt be...... I know there are a lot of angry people out there that make statements that the parents dont give a toss and just put them on meds just to shut them up. I agree this happens and find it really sad and unfortunate, but at the same time there are kids like my son, that had there whole life spelt out at a very early age because their disabilities were so obvious and pronounced, so when people trash meds, they also trash the parents with children that are 'severley disabled' by their condition, and that is written on many of my sons reports.

 

I have put on my boxing gloves over the years to defend the minority of us that truly have NO choice but to give meds and for life.

 

QUOTE: Curra: As to residential school, I think that is also something that dependes on the needs of the child and the type of family. I prefer to have my son with me because he's a child with too many social fears and before he can make a minimum of contact with other people I don't think he would be feeling happy away from the safety of his home. But that is just my son's situation.

 

I was put in this situation when B.. was 6 years old, a woman said I would be much better off if I put my son in an 'institution' not residential school, when I got home I realise there is no way in the world my son would cope in that environment and neither would I being separated from him or my daughter.

 

At a round conference meeting at my sons school when he was about to start Year 1 there were twelve people present that were involved in his life 3 teachers 2 special needs teachers and rep from special school, Our Paediatrician, Principal, myself and my ex husband, around the table my sons Paediatrician spelt out my sons whole life and what it was going to be like, and why he had to be on meds 365 days a year and possibly for life..... He also mentioned in his later teens or twenties we could be faced with suicidal tendencies etc etc.... from what he was saying, my son needed me more than anyone, and he needed the best support we could get from all these people, the school got a bucket load of money to build outdoor play equipment and many other benefits the school received by taking in my son. They said yes to everything, we were blessed but not so blessed.

 

With regards to Residential school, I may have appeared a little negative, (sorry Bid, will explain) but deep down if I believed a school like this could have changed B..s world I would have been banging down the door, to get him in.... Where my negativity comes from here is my NT father was put in a Catholic boarding school when his father went to war, he never forgave his mum for doing it, and I have a couple of friends that did it as the family was big and they had successful businesses and the business came first, well some coped well but some came out with more emotional problems than before they went in there, and I believe they all have hidden resentments.

 

Again, if you have children in Residential care or are thinking about doing it, make sure that you keep a close relationship with your child so they dont feel fobbed off, and have some of these emotional scars like my father did for life.

 

Anyway, Bid has had a lot of success in this area, and sure she can only speak positive about it, we are lucky to have Bid's experiences to help see it from a positive perspective.

 

I am just disappointed for Hev and the length of time she has had to wait for answers. Over here in Australia, we just ring the Paediatrician, and demand to be seen, and say this is URGENT, I demand someone see my son asap. Over here you would be told to come straight in even without the GP's referral, and worry about the referral later. My sons Paediatrician has fought tooth and nail to make sure my son gets the best of everything, and its not a hot house, he has referred me to 5 other top specialists maybe more he has tests and assessments coming out of his ears for my son over the past 16 years, if he could wave a magic wand to get Bobby off meds he would have found it.

 

I just get frustrated for you Hev as I feel CAMHS or whatever its called are like 'so slow'!!! I would be mounting huge protests and writing letters to the MP's and anyone and everyone to get to the top of the list, or not even bother with them, find a Paediatrician like I have, he will sort them out, our Paediatrician sorts out everyone on our behalf with letters and Phonecalls, even knows which forms to fill out etc...

 

I guess this is hard sitting back and seeing the support we have had, and what the system appears to be in the UK.

 

Hev, perhaps if you printed off the past 6 months posts and start up a diary of them and pound on a Paediatricians door, I believe they will put those boxing gloves on to fight for you Hev, you are too exhausted to do it yourself.

 

Again after speaking with Annie, your system is a lot tougher with a lot more red tape. If only we could break down those walls. Mount a huge protest outside Tony Blairs office, petitions, but not doubt many already have.

 

I vaguely remember the 'Ruth Kelly' egg jokes, eegsplain 'Special Education' hope I havent started you off again.

 

Hev, this is very frustrating!!!! I know I am not aloud to talk about doses of medication but I know a lot about how Catapres works as my son had to take it from the age of 7. This was my main concern for you pushing for an appointment with the Paediatrician. My sons meds were reviewed every 3 months by Law, your sons challenging behaviour over the past six months tells me Catapres isnt helping and he needs an urgent review of his meds by a Paediatrician that specialises in ASD & ADHD. This is where the diary would help. My son is 6 ft 3 slim build not too skinny not over weight and he only has a tiny dose of Risperdal to make a huge difference. I still feel until you got some headway with CAMHS this would really help, If my Paediatrician were to read your posts and meds details I am sure he would say your doctor is a quack. My sons made friends and done many things he couldnt do prior to Risperdal he only had one friend, who stuck by him from Kindy. Now he has ongoing friends I I can say with 100% accuracy in his case Risperdal did that, and my son would back it up. But if you do choose to look at the meds, read 'Suze's posts' and others that are happy to reassure you, but make sure you have a doctor you are going to have for the next 10 years that you can rely on for Steve, even if you dont go with meds. Just from my experience, start building up a history and stick with one that you trust.!!

 

Good luck Hev, <'>

 

Love

Fran

[bid]

Frangipani, my son went to a residential school, he was not in residential care!!

 

Again, I'll say that residential school is completely different from residential care, and I wish you would stop lumping the two together and using the two terms interchangeably.

 

Sorry, I know you mean well, but I also don't need to be reminded to maintain a close relationship with my son, and I don't appreciate the comments about 'emotional scars'.

 

Bid

Edited April 8, 2007 by bid

[Guest flutter]

this is getting out of hand

and im not sure it is helpin hev in any way

fran no offence, but we all do things differnetly, and i have scars, as do many of us, and this mean we work ###### hard not to give them to our kids! in fact my dd was not diagnosed, cos i would not let the powers that be into my home

i have seen bid's son on here, and met her, and cannot for one minute imagine that her son is or will be scarred from being at a specialist school! and would our discussion be like this if it was a specialist school for music or for sport.

x

[bid]

Thank you, Flutter <'>

 

And can I say I thought your DD was lovely when I met her (and you, too!! ).

 

Bidx

[Cat]

I went to hell and back with my son when he hit puberty - hit being the operative word - I really do feel for Hev and she will do what is right for her son and her family.

 

I wish that I had had some options open to me for my son. He was out of school we had no statement and no where left to go - of course if it happened today I would know what I had to do but at the time I was clueless. I think that Residential School would probably have been the best option for us had it been offered to us. However I knew that I did not want him on medication and so we rode the storm which lasted about 5 years and it did take it's toll.

 

I am not anti-meds but having now met and being in touch with several parents who went that route and now bitterely regret doing so I am pleased that I managed to avoid this route - however I have puberty on the horizon again with my youngest son so I am not in the slightest bit complacent about this but I do know that I would have to be totally desperate to go that road.

 

One parent I met is now an ardent campaigner where meds and ASD are concerned her son has now been detained in a secure mental institution for about 14 years. His Mum firmly believes that it was the reaction to the medication that he was first given that brought about what happened to her son. He was given Neuroleptic drugs many of which have ben named in this debate and there is now an active group of autistic adults who campaign against these drugs being prescribed for people with autism http://www.dinahm.pwp.blueyonder.co.uk/

 

There are always two sides to every story and until I have walked a mile in someones shoes I have no right to judge but medication is not always the panacea parents hoped it would be. A few miles down the road they realise that the panacea has turned out to be anything but. There is a HUGE movement of parents now in the UK who are trying to make sure that parents at least know both sides to the story and can then make informed decisions.

 

Cat

[Frangipani]

Frangipani, my son went to a residential school, he was not in residential care!!

 

Again, I'll say that residential school is completely different from residential care, and I wish you would stop lumping the two together and using the two terms interchangeably.

 

I also don't need to be reminded to maintain a close relationship with my son, and I don't appreciate the comments about 'emotional scars'.

 

Bid

 

Sorry Bid,

 

I didnt mean it to come across like that. They were not meant to undermine your decisions.

 

Where I typed Residential Care that is a typo error.

 

I was simply trying to explain my experiences and how it affected my father and some of my friends. I have many friends that absolutely love Residential School. In Australia they call it 'Boarding School' popular with wealthy families or families from the country that dont have local schools as Australia is so far and wide kids would travel 400km just to get to the nearest school, so many of them board at schools and colleges and absolutely love it. A lot of parents that are running businesses and are at it 14 hours a day find them really helpful, the kids are happy.

 

I quoted 'Curra's" response and gave my feeling about B.. attending one and agreed my son wouldnt understand and would be exactly the same as Curra's son, frightened and confused, it simply wouldnt have been an option for my son. I also stated and admitted I was personally negative about them and I realised why............QUOTE: My father on the other hand, his memories of it were those of abandonment, and thats exactly what his mother did.

 

I made these comments 'to Hev or parents thinking about placing there child in care, do they think their child would cope, or understand why they are there!!!! QUOTE:, make sure you keep close contact with your child to anyone thinking about putting their child in one because the people that I know didnt enjoy it was because their parents literally dumped them and never came near them, thinking that was the best thing to do.

 

I wasnt referring to you Bid. sorry if you took it that way. I was just simply sharing my 'personal fears' some people may have fears for one reason or another, these are mine.

 

I did say......

QUOTE:

 

Anyway, Bid has had a lot of success in this area, and sure she can only speak positive about it, we are lucky to have Bid's experiences to help see it from a positive perspective.

 

I genuinely mean that!!!

 

Sorry Bid, if you took it any other way, it wasnt meant to be like that.

 

Fran xx <'>

[bid]

Thank you, Fran <'>

 

Bidx

[hev]

i think us lot on here should go in the big brother house think what interesting tele that would make

[baddad]

I think they would have to rename it the 'Oh brother' house......

[hev]

or the BIG BOTHER house

[bevalee]

Hi Hev <'>

 

Haven't been here for a long time, it took a while to catch up with what you've going through with S.

 

I know Residential isn't for every child but for some of us it works with meds or without. Do you remember the problems that i used to have with R. He's 6ft 2in now and at residential college, still takes a small dose of meds and doing really well. he still wobbles every now and then, but for us it was the right choice.

 

Hope it all works out for you

 

Beverley

[hev]

oh my old friend bev <'> <'> <'> i lost your phone number can you pm me it agin please?

 

so pleased r is doing well,i remember you really went through it like me didnt you,at the moment i cant see things will ever get better but residential is what im looking at,everything is such a fight though and i feel worn out at the moment,just got to wait for another meeting with lea which is booked for after easter