naughty children

SingleSue

Prinzessilein wrote: »

On the whole I agree....but with reservations.

Sometimes the best solution IS to remove the autistic child. As in all things it depends on the individual child and the circumstances.

There are times when if I am stressed and have sensory overload then I can start to swear. It is not pleasant. When I was younger Mum had two choices - she could either remove me from the source of sensory overload...or she could deal with people staring at a young girl who had a really foul mouth on her and who was screaming out some really offensive stuff.

Sometimes a parent/carer has to consider other people as well as the autistic child. Whilst my needs have always come first with mum, I have always been taught that as I have to live in this strange and confusing world, I have had to learn to conform.

In the situation described in an earlier post - there were two children with possible ADHD running wild in a hospital. For the moment let's accept that they DID have ADHD....this is no excuse for disrupting the care and treatment of patients. I don't necessarily blame the children...but in that particular case the parent should have removed the children and not allow them back into that situation until they were able to behave acceptably. (The children were there as visitors not patients).

You cannot cushion an autistic child from this world. They need to learn coping strategies. But occasionally for the good of the child and for other people they need to be removed - maybe temporarily - from a situation.

I agree completely, I was more using the supermarket scenario more than anything else....if their actions was putting someone in danger, then of course, a different strategy would be used.

As for hospital, certainly not a place to try to manage behaviour, best to wait until they are much older and you can prepare them in advance...but then, I don't think hospitals are a good place for any small child (autistic or not), especially in the more high dependancy areas due to the risk of infection etc.

SingleSue

shegirl wrote: »

Depends how it is done and how it's dealt with.Sometimes you have to remove,whether it be for their safety,safety for others or because their meltdown is huge.It also depends on why it is causing a problem.It's common practice with professionals,for example,to work towards self removal from a situation for an autistic child to encourage them to have some self control -they can remove themselves,relax and then come back when they have calmed.

If you remove from a situation,you need to ensure that you build it back up and introduce stratagies.If you remove and give up or leave it to long then you have a big problem!

The self removal/coping strategies is what we worked on most with the boys, so now rather than going into full meltdown every single time, they can use their self calming/removal themselves..although sometimes they will need a little reminder and others, there is nothing you can do to avoid a complete meltdown.

I have said on here (not sure if it was this section or another) that on Christmas day, youngest felt unable to cope with all the noise and crowd at my parent's house but instead of major meltdown/stress out, he took himself off upstairs to a quiet room until he felt less stress. He also made a big step forward this year, he actually ate his Christmas dinner with the rest of us instead of on his own in the front room away from everyone.

We use the phrase...slowly slowly, catchy monkey to describe how we have to move his coping and progress on. Everything has to be broken down to its smallest component and worked on from there..too fast and he regresses back to the beginning, too slow and it would take forever and he would get stuck on a stage.

Now if only there was a magic wand to move middle son forward on personal care....really banging my head against the wall on that one fighting two issues, 1) being a teenager and 2) being Aspergic with brain damage!

shegirl

SingleSue wrote: »

The self removal/coping strategies is what we worked on most with the boys, so now rather than going into full meltdown every single time, they can use their self calming/removal themselves..although sometimes they will need a little reminder and others, there is nothing you can do to avoid a complete meltdown.

I have said on here (not sure if it was this section or another) that on Christmas day, youngest felt unable to cope with all the noise and crowd at my parent's house but instead of major meltdown/stress out, he took himself off upstairs to a quiet room until he felt less stress. He also made a big step forward this year, he actually ate his Christmas dinner with the rest of us instead of on his own in the front room away from everyone.

We use the phrase...slowly slowly, catchy monkey to describe how we have to move his coping and progress on. Everything has to be broken down to its smallest component and worked on from there..too fast and he regresses back to the beginning, too slow and it would take forever and he would get stuck on a stage.

Now if only there was a magic wand to move middle son forward on personal care....really banging my head against the wall on that one fighting two issues, 1) being a teenager and 2) being Aspergic with brain damage!

Then removal isn't such a bad thing is it,as you earlier said that removing an autistic child from the situation is one of the worst things you can do.

To teach self control and them removing themselves to calm you start removing them yourself when they are starting to meltdown or are showing signs they are about to.Then you reintroduce.They then start to recognise the signs and do it themselves.

Ahh the self care lol my son will attempt to wash himself,his hair and clean his teeth on encouragement but he isn't able to do it properly,doesn't quite understand it bless him! Trying to wash his own hair is funny though as he hates the sensation of a shower on his head so uses jugs filled with water...always completely misses his head when he tries to wet it:rotfl:

Did you notice a 'spike' in yours upon hitting puberty? I know I had a 'what the hell!!!' moment when my sons hit:o Apparently very common though,especially in the more severe,and there's the theory of autistics having increased testosterone naturally and then upon puberty obviously there's more..had a fun few weeks when it started:eek:

That's fantastic about Christmas dinner Must have meant the world to you!

SingleSue

Richie-from-the-Boro wrote: »

(2)
SingleSue,

- at what age were you made aware of your bairns illness
- and at what age did you begin to teach positive coping strategies

For myself, I have long believed this Jesuit saying to be a truism .. .. "Give me a child for for his first seven years and I'll give you the man"

If we, for the purpose of this debate only, all agree that its a truism and has empirical support when its applied to both (1) 'normal' and those in the (2) Autistic spectrum it raises in the context of #73 an often overlooked and almost 100% neglected issue, that of the parent.

Diagnosis, intervention, treatment and funding are wholly focussed on the child. Now most if not all caring people would say that's the way to should be .. .. but is it ?

Isn't it the case that the child's best chances in life will be provided not by state mechanisms and / or / medical interventions but by the lifelong love of parent ?

Objectively, early diagnosis of the child will only ever be of help if the parent is heavily supported and indeed 'trained' [#73] in those very early years of the child s cognitive learning. I have long believed that the state should re-examine the national strategy and change the emphasis / funding / structured training and support directed at the parent in those early years.

The best chances for any child 'normal' or those in the Autistic spectrum come from parenting skills. The parent of a child in the Autistic spectrum needs a lot more help and support in parenting than a parent with a 'normal' child. How on earth anyone in the big round world can believe that parents of autistic spectrum children come into the world already equipped with a well honed professional skill set to properly assist the learning needs of an autistic child is an unreasonable assumption.

In short too much endless research on the child .. .. and not enough time / money / effort on asking the parent / teaching the parent / direct evidence gathering from the parent / best parenting practice outcomes etc. Will doing what I suggest cure autism ? - no of course it won't, but what it will do is help a newbie parent get off the blocks to a quick start in those critical early years with proven positive outcomes for the autistic child much quicker than the current ' let 'em flounder and learn ' model that used to be called the 'sitting next to Nellie' school of leaning.

NOTE : the 'sitting next to Nellie' school of leaning, was and continues to be based on the active not passive learning functions and it a brilliant model however the parent of a child in the spectrum does not have the luxury of 8 hours per day one to one support and teaching. Without that 8 hours a day the state input seems to have evolved to a ' let 'em flounder and learn ' model.

Both were diagnosed officially before the age of 6. Middle son had been originally classed as ADHD, then that was taken away to be replaced with nothing (apparently I was too cheerful to have a child with different needs, so must be making it up) and then after the school insisted on a re referral (and I refused to give information, it had to be sought from outside sources), he was diagnosed with Aspergers...a complete bolt from the blue that was for me!

Youngest son was picked up at a theray session for middle son when he was 19 months old but was labelled as having autistic like behaviour until his formal diagnosis after he had started school...it was apparently very hard to diagnose him with one particular thing as he very complex needs and bits of lots of other disorders...hence the complex autistic diagnosis. As he has got older though, the autism has become much more in your face, the oddness more pronounced.

I must admit that in the early days, I did pander to them, I did avoid going to supermarkets or out for meals/cinema but they were not improving and our social life was really becoming quite restricted but I really didn't where to start.

It must be said that in the very early years, I spent an awful lot of time just trying to get youngest verbal, normal speech therapy was not helpful for him but because he didn't have an official diagnosis, he could not access the correct language therapy...so I did my own research (mainly American sites at the time), and took it from there. I first did my own style Makaton and then gradually (very gradually), got him to say single words, then two words and so on until he could say a 4 word sentence at approx age 7 or 8.

I am not sure when I changed the parenting style to proactive from reactive, think it may have been after me and hubby split and I could give clear parenting without a conflicting parenting style from hubby (he was one of the smack and shout brigade) or what made me do it in the first place....but it appeared to work a little bit more successfully than reactive and pandering parenting, so I kept at it.

I never really received training as such, I did attend a parenting group for parents of ASD children but that was more explaining to look further than just the behaviour you seen and try to understand what has triggered it and then work on that trigger...so I suppose it did give me a basis to work from.

A lot of mine has been from self research, from looking at the T.E.A.C.C.H system and adapting it to my family.....and an awful lot of patience and time.

It has not been easy, there is no doubt about it, as you are going against everything a parent feels they should be doing for their child, you want to protect and keep them happy and at times, it feels like you are being incredibly cruel to them, especially when they are so upset at being out of their comfort zone.

The boys and their needs was a major factor in the breakdown of my marriage, ex husband just could not cope with the amount of time it took for even small progress to be made or the annoyance of (especially) youngest having meltdowns in public, the constant care that was needed etc....and it didn't help when I had my breakdown from the constant and never ending work that was involved in that care (I was physically and mentally exhausted by it), on top of trying to work, keep the house tidy, make meals, appointments coming out of our ears and care for him (brittle diabetic with addisons).

It really was a horrendous time and I think it would be fair to say I was floundering with it all....and at times, failing completely.

But fast forward to today, middle son is 'well' enough to not require DLA (well in my books anyway), the care for him is more down to reminding him to wash, change his underwear and make sure he is safe with only the occassional violent and aggressive outburst (although they are still very frightening to the outsider). Ok, he is still unable to be out and about on his own for his own safety (he is very trusting and would go off with anyone), his memory is still like a fish but the caring is more top up reminding than anything else.

Youngest however, still needs a high level of care. Complex autism is not his only disability though, he has a myriad of other disabilities, mostly physical which require a lot of care, both at night and during the day on top of the continual therapy I have to do with him to keep him in this world...if I relaxed, even for a day or two, he would retreat back into his own little world where he feels most comfortable.

Mind you, no-one would ever be able to lead him away...he doesn't like people and would scream blue murder if anyone tried to even touch him, let alone grab him....but at least he isn't trying to scratch old ladies eyes out when they talk to him anymore :rotfl:

Despite all the work, they are still autistic and they will still have the tendency to go backwards if allowed....but at least they are more able to live in this world than they were.

SingleSue

shegirl wrote: »

.

Ahh the self care lol my son will attempt to wash himself,his hair and clean his teeth on encouragement but he isn't able to do it properly,doesn't quite understand it bless him! Trying to wash his own hair is funny though as he hates the sensation of a shower on his head so uses jugs filled with water...always completely misses his head when he tries to wet it:rotfl:

Did you notice a 'spike' in yours upon hitting puberty? I know I had a 'what the hell!!!' moment when my sons hit:o Apparently very common though,especially in the more severe,and there's the theory of autistics having increased testosterone naturally and then upon puberty obviously there's more..had a fun few weeks when it started:eek:

That's fantastic about Christmas dinner Must have meant the world to you!

I wish middle son would even attempt it! It is a major battle to get him into the bath, let alone him doing the job but badly.....and changing of pants? Gawd, you would think I had suggested he removes an arm the song and dance he makes of it :rotfl:

If he had his way, he would forget about washing and changing completely, his just cannot remember to do it! He often claims I am trying to force him to have several baths in the same day because he cannot remember any times in between...hence the battle to get him in the bath.

The start of puberty was not a good time in this household when middle son hit it, the violence made a re-appearance, the aggression certainly made itself heard a lot more, thankfully, he appears to have calmed down again at the moment (she says with fingers very firmly touching wood whilst crossed )

Youngest has not yet hit puberty despite being 13 (nearly 14 now) but then we were told he would go through a late puberty when he was small (he also has a growth problem)...was quite weird when he started to go through terrible twos at age 5/6! The poor thing felt so left out when people at school were talking about hair growing in the nether regions and biology lessons with pictures showing normal development, that he got a biro and resorted to drawing pubic hair on his nether regions :rotfl:

shegirl

Richie-from-the-Boro wrote: »

(2)
SingleSue,

- at what age were you made aware of your bairns illness
- and at what age did you begin to teach positive coping strategies

For myself, I have long believed this Jesuit saying to be a truism .. .. "Give me a child for for his first seven years and I'll give you the man"

If we, for the purpose of this debate only, all agree that its a truism and has empirical support when its applied to both (1) 'normal' and those in the (2) Autistic spectrum it raises in the context of #73 an often overlooked and almost 100% neglected issue, that of the parent.

Diagnosis, intervention, treatment and funding are wholly focussed on the child. Now most if not all caring people would say that's the way to should be .. .. but is it ?

Isn't it the case that the child's best chances in life will be provided not by state mechanisms and / or / medical interventions but by the lifelong love of parent ?

Objectively, early diagnosis of the child will only ever be of help if the parent is heavily supported and indeed 'trained' [#73] in those very early years of the child s cognitive learning. I have long believed that the state should re-examine the national strategy and change the emphasis / funding / structured training and support directed at the parent in those early years.

The best chances for any child 'normal' or those in the Autistic spectrum come from parenting skills. The parent of a child in the Autistic spectrum needs a lot more help and support in parenting than a parent with a 'normal' child. How on earth anyone in the big round world can believe that parents of autistic spectrum children come into the world already equipped with a well honed professional skill set to properly assist the learning needs of an autistic child is an unreasonable assumption.

In short too much endless research on the child .. .. and not enough time / money / effort on asking the parent / teaching the parent / direct evidence gathering from the parent / best parenting practice outcomes etc. Will doing what I suggest cure autism ? - no of course it won't, but what it will do is help a newbie parent get off the blocks to a quick start in those critical early years with proven positive outcomes for the autistic child much quicker than the current ' let 'em flounder and learn ' model that used to be called the 'sitting next to Nellie' school of leaning.

NOTE : the 'sitting next to Nellie' school of leaning, was and continues to be based on the active not passive learning functions and it a brilliant model however the parent of a child in the spectrum does not have the luxury of 8 hours per day one to one support and teaching. Without that 8 hours a day the state input seems to have evolved to a ' let 'em flounder and learn ' model.

'Treatment' isn't wholly focussing on the child though as parents learn about stratagies and are given ideas and,often,instruction on how to deal with things.

My son was officially diagnosed at 4,although he was 18 months when assesments were started (initially it was hearing as they thought his lack of response was due to hearing problems -none at all).He has incredibly obvious autism but back then they didn't like to diagnose until certain ages and they had been seen in a variety of settings,with and without the parent etc. We also had a Portage Worker who would come to our home,do play work with him and show us ways of doing the same while setting 'goals' for us to attempt to reach with him,working on it ourselves.

I was given a place on a program for parents of autistic kids to learn about the basics of autism,understanding it,some basic stratagies and learning how to play to encourage communication etc

After that I read a huge amount of books and done a research project with a student psychologist in which we used various studies and combined parts of different 'approved' methods to design a program for my son to encourage communication,eye contact etc etc

I've had a huge amount of contact with psychologists and my son sees one weekly.Currently we're using play in a way that teaches self control and dealing with the unexpected.I know the methods used and practice it myself.

There is a huge amount you can gain and learn to use to parent an autistic child very well if you are receptive enough to pick it up,put in the time and are not one of those who is too depressed to do it or believes they are as they are and nothing can ever change.

Our kids will always be autistic and have problems but we can all help them and assist in progress and management,but there are a few out there who,sadly,just leave it as it is and get on with a life that will never improve.

shegirl

SingleSue wrote: »

I wish middle son would even attempt it! It is a major battle to get him into the bath, let alone him doing the job but badly.....and changing of pants? Gawd, you would think I had suggested he removes an arm the song and dance he makes of it :rotfl:

If he had his way, he would forget about washing and changing completely, his just cannot remember to do it! He often claims I am trying to force him to have several baths in the same day because he cannot remember any times in between...hence the battle to get him in the bath.

The start of puberty was not a good time in this household when middle son hit it, the violence made a re-appearance, the aggression certainly made itself heard a lot more, thankfully, he appears to have calmed down again at the moment (she says with fingers very firmly touching wood whilst crossed )

Youngest has not yet hit puberty despite being 13 (nearly 14 now) but then we were told he would go through a late puberty when he was small (he also has a growth problem)...was quite weird when he started to go through terrible twos at age 5/6! The poor thing felt so left out when people at school were talking about hair growing in the nether regions and biology lessons with pictures showing normal development, that he got a biro and resorted to drawing pubic hair on his nether regions :rotfl:

Oh dear love him :rotfl::rotfl: Thankfully,my son doesn't have lessons like that at school (may sound odd but I am thankful in a way and he'll never really need sex ed LOL),I think he'd develop an obsession and start checking himself in class to compare:rotfl:


I have to bath and clean ds teeth,but he's rather severe with LDs but he does try to do a bit himself,which is all good progress! Funnily enough,a LUSH shop appearing in our city was the cause of that!! Shower Jelly (we call Jelly Soap) as soap and he eventually started trying to wash himself in it after playing with it,then solid shampoo bars makes it easier for him to try and wash his hair and it's firmer so he likes it.The oils and scents they use helps relax him too as he's very receptive to scents,so we have a double bonus there!

SingleSue

We never had portage, the woman who did it in this area had far too many on her books at the time but what we did have, was an amazing woman at the special needs playgroup youngest went to who understood him brilliantly and who very amazingly, got the trust of youngest.

She had no specialist training in autism but once youngest made that first tentative connection (which involved him just sitting down next to her - he never did that with any of the other staff or helpers), she then started researching with a vengeance, coming up with new things to try to get youngest to give eye contact or to try to prise the shutters of his mind open.

She was also an amazing support to me, always there to give me the level headed view (rather than the cuddle aww one which I hated - I wanted people to tell me if they thought I was doing it wrong) or just to talk about normal everyday things.

She was not staff, just a volunteer after retiring from a career of being a magistrate, she was an amazing lady and so intuitive to youngest.

**Patty**

Just highlights the huge gaps in different health authorities doesn't it?


Last time we saw a psychologist was when son was 8. He's 14 now.
He sees the consultant paediatrician once very 12/15 months but they openly admit, there's no input they have anymore

Learning Disability team/nurse have discharged us .....even though he still has issues with incontinency & personal care......as apparently, they can progress no further for us.

Speech Therapy has been withdrawn as , and i quote: * He does not progress at a satisfactory speed and it is felt that there are other children would would benefit more from this service*

So i have a 5ft 9 14 yr old who has no speech, is doubly incontinent & has the brain capacity of a 18 month old.......and that ^^^ is the best they can do.

Good job he's got me then

shegirl

**Patty** wrote: »

Just highlights the huge gaps in different health authorities doesn't it?


Last time we saw a psychologist was when son was 8. He's 14 now.
He sees the consultant paediatrician once very 12/15 months but they openly admit, there's no input they have anymore

Learning Disability team/nurse have discharged us .....even though he still has issues with incontinency & personal care......as apparently, they can progress no further for us.

Speech Therapy has been withdrawn as , and i quote: * He does not progress at a satisfactory speed and it is felt that there are other children would would benefit more from this service*

So i have a 5ft 9 14 yr old who has no speech, is doubly incontinent & has the brain capacity of a 18 month old.......and that ^^^ is the best they can do.

Good job he's got me then

There are differences between authorities but it depends on resources aswell.I know there are lots of autistic kids who have nothing near what my son has but he has it for specific reasons and should those reasons diminish and when things improve it will be less and just occasional (as it was before) and there may be another child who requires more help for a specific reason.It goes on what's needed where and when and whether there is anything that could be done.I know though that sometimes the CAMHS psychologists will do sessions with just parents to talk to them about their difficulties too,not sure whether that happens all around,there will always be differences (and my city used to be abismal!).

We have no speech therapy and never had an incontinence nurse or any assistance with personal care matters.It depends on needs at the time and they constantly change.I find it very sad that you have nothing though,but if you did need something don't hesitate in trying to get it:)

Just edited to add,after reading again,surely there must be something they can offer? Do you have a social worker?Just wondering if that may assist in getting any help your son may need