phoebe
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Posts posted by phoebe
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We have also tried and then given up on a variety of different activities and have thus far been unable to do activity days etc that run in the holidays.
I worry about it and I think about the activities that the other kids do. i question whether we don't go because I cant face the stress etc, but at the end of the day, I know that we have tried and the result always seems to be the same. Basically G does not like instruction and thinks he knows how to do something and that if he is doing it then he can do it and he doesn't need someone "telling him how to do it."
The psych who diagnosed him recommended that we tried some clubs and that we had friends for tea and made the occasions short and hpefully successful and then built on it, but a year and a half on, I wonder whether any of that is really for G. He is happy coming home and having his screen time and chilling.
I suppose that as long as you make them aware of the things that are available and allow them to try, then you are offering what is needed. If it isn't what they want to do, at least you did your bit and made it available.
It's hard to know what is for the best, but .....................................as long as we keep trying
<'> Phoebe
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what an absolute nightmare you are having - can only offer my
<'> , thoughts and prayers for you and yours.Stay on top babe and know that you have support here.
Love and
<'> >
< <'> Phoebe
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<'> <'> <'> and where has that praying emoticon gone?
Thinking of you
Phoebe
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SAw the programme and was shocked by the reference to AS. Have come to this discussion late, but have so enjoyed laughing out loud at some of the responses
A lovely bit of light relief! - and pleased to see the sense of humour is alive and kicking amongst the posters.
Phoebe
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"You get lulled into a false sense of security that you're doing a good job and helping your child to fit into the world" (quote)
That's it exactly!!
Thank you!
When I look at all the criteria for the diagnosis , I can see he fits it, but then we have a settled period and I dunno, I suppose as a mum, i just hope and pray that the diagnosis was wrong and that I have managed to fix my parenting to a style that suits him. Long term it would be so much easier if his difficulties were my fault, cos I can fix the way i am - do you know what I mean?
We are enjoying a settled period at the moment...............long may it last.
Hope your next one is on the way soon.
<'> -
Yes, G's main trigger is when he thinks he has been unfairly treatted and will often intervene inappropriately and then get into trouble for it. We make a joke of it now and tell him to stop being a policeman!! This works sometimes!! Depending on what sort of a mood he is in!
It is an in built thing it seems and he is great at informing others of the right thing to do - but not great at hearing it if he is in the wrong.
Part of life's rich pattern on the spectrum methinks.
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Sometimes I wonder if the diagnosis was correct, G has great periods of compliance and self control, he doesn't have balance problems, he does tell jokes and seemingly understands them, and when we are in a good period, everything is rosy and our lives are different. Then WAM, for apparently no reason we are off on one again. There usually follows a long downward spiral and then a crash and then we pick up the pieces and start again with some new technique for control.
We do have loads of management systems in place that we have developed and do evolve over the years and he does still have problems at school, mainly when there is a change of teacher, or other kids are "pressing his buttons" knowing what a reaction they will get.
Does anyone else have weeks and months of controlled behaviour?
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Yep, have this problem too. With us it is also a case of getting him used to it. Even going to the shoe shop is a nightmare and how disapproving some of the assistants can be. G is obsessed with speed and being the fastest and a while ago now, we got him some shoes with "go faster stripes on". He believes they make him fast and whenever we look for shoes we find ones with a "feature" that make them fast!!
It works for us!!
Maybe you could try something similar. Also, do try the Clarkes thing.
Take Care
Phoebe
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"I remember speaking to the health visitor when my son was very young (under 1) about his head banging and mentioning it on several subsequent visits - she always said cheerily 'he'll not do it hard enough to hurt himself' but he'd bang on hard surfaces."
My health visitor added that if I was really worried that he would hurt himself, I should put a cycle helmet on him. He used to graze his head frequently even if he had been banging on the carpet
Also, he never interacted well with other children. He was my first born and I had no bench mark. I had stopped working (was just permanently exhausted) adn tried and tried mother and baby groups, NCT meetings. It was demoralising, he was always the most active, most disruptive and unruly child there. He was unaware of his or others personal space. I cant remember how many times I told him about sharing, about not snatching, about taking turns, considering others feelings..................., it was just such hard work, I stopped going. I could never get a conversation with anyone anyway!!!
Looking back there were signs, some of them, I have even forgotten, until I read something on here on in a book and remember. He is HF and Aspergers, he doesn't really obsess about one thing, but has passing obsessions. He will hear a message from school about healthy eating and will make up his own ideas about what that means and will stop eating certain foods or recently at school, they had a "banana man" visit who came with some samples and told all the kids how helathy they were etc. G took the message on board and reported when he came home that he had eaten 9 bananas! I try to explain to him that all foods are ok for you and the trick is to eat a varied diet, but if he has got something into his head, sometimes, he will eat none of his packed lunch because he thinks it is not the right food.
I think the answer to your question will vary enormously, depending on the degree to which each respondents child/ren is/are affected. Like your child, G hated haircuts and having new shoes. He still does. He always needs to be coaxed to have a haircut and will only go to the same place every time(hope it never closes)! but at least we are past the screaming, kicking and crying stage. Tried bribery, tried everything, but just had to get through it and keep going until he accepted it was a necessary thing to do which finally happened about age 6. He's 8 now.
It seems to be the language delay that you are most worried about, and I dont have any personal experience of that. Hope you get some answers soon.
Love and hugs
Phoebe
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hi Bagpuss,
What a relief - so glad you are on the right road.
Support groups are definitely worth a try.
<'> <'> <'> Take care
Phoebe
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My DS will definitely show empathy at times, but not always at appropriate times!!! He has AS.
He will always try to fix the problem, thinking he can fix everything and that he is invincible, he will approach a stranger whose baby is crying and dish out parenting advice - not always received well!
About other things like if one of the family hurts themselves, he will more often than not, not bat an eyelid and if he has caused the hurt, will refuse to apologise. Thinking that whatever the situatio, he was in the right and therefore, doesn't need to apologise.
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<'> <'> So sorry that you are having a low day.
Sadly, the reactions of others towards our kids when they are out of control is all too often judgemental and with all the ups and downs we have to handle, it is no wonder we often ask ourselves if we are doing the best for our kids. I'm sure all parents ask themselves this question, maybe we have more occasions to ask it of ourselves though!!
I try to understand their reactions by thinking that if I hadn't had my DS first, I would have probably reacted in much the same way. As parents, we all try to do the best for our kids and naturally seek to try to protect them from anything or anyone that may hurt them. I went through years of being ostracised by the other parents at the school gate for being the mother of "that naughty boy" and had the odd public dressing down over my supposed lack of control
I can't really offer any help, but would agree with the other posters that we have to deal with much more than other parents. The only people who can really understand are here, or maybe at a support group if you can find a good one!
Keep
Hope that your day gets better.
BD - you sound so sensible!
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Yep, if only I had a penny for all the times that I have heard these phrases?!
And yes, all children do use them, but I have asked my son if he even knows what boring means because he uses it even when it doesn't seem to fit the situation at all!! Despite him being highly verbal and huge vocabulary.
Liked your idea Curra - will try that if I feel i really need an answer, but most of the time, I let him get away with this response.
Take care all
Phoebe
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WE are both rh -ve as were both my parents and at least one of the in-laws
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wow badonkadonk - thank you. What a helpful reply. Many of us out here identify with the problems Loupin has raised and have holes in walls to prove it.
I'm off to buy a punchbag!!
I have just been writing my representation to the lea as my son also goes into meltdown at school and we are still trying to get him some help there - perhaps I will print your reply and buy a punchbag for the school too - might save any more destrution of school property.
Loupin - how old is your son and has he been able to do any anger management yet? I know this may sound a bit ridiculous, but some of the things Badonkadonk has said about things building up and building up, these feelings are explained and dealt with in AM training.
There is a fab book called A VOLCANO IN MY TUMMY which explains in a childs terms about anger and the changes that hapopen to your body.
After my sons last Exclusion, (he is 8) when he hurt the teacher and wreckd the classsroom as well as the quiet room )after they carried out a controlled restraint and removed him there), I did some exercises from this book with him. The one that he really identified with was a simple picture of a thermometer up the page with lines beside it that they can write on their feelings and what is triggering them, from when it first starts and he is feeling just a little agitated to boiling point. Recognising these changes should help them take time out before ever getting to meltdown. He has copies of these he keeps at school so if he is having a day when he feels he is losing it, he can try to manage himself better. A simpler one is a grudge pot, where they write down their frustraions and out them in the pot. It is a book that has been put together to help children from 6yrs up, but if your child is HF you could start sooner.
It sounds to me like the school could be more helpful. Try talking to the SENCO (They may well have a copy of the book you could borrow as it is put together with lesson plans and has an educational stance), but mainly you need to try and stop the triggers building up throughout the day and only they can help with this.
Does he have a place where he can go for time out in the day?
Does he have any support at play- time?
Again, I feel I could go on and on, but
<'> <'> <'> <'> <'> , please take care of you. hope you find something that helps.Love and hugs
Phoebe
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<'> mmmmmmmm been there too. My son is 8 now and in yr4.
Basically for us everything is about trying to prevent him going over the edge in the first place because it doesn't matter how many things we have tried to make him understand, at the end of the day if he loses it, he cannot control himself. He does not differentiate between himself and adults and thinks he is invincible. If you get in his way when he is like that you are likely to get hurt.
The main trigger for him is when he thinks he is being unfairly treated. Of course he may not actually be being unfairly treated as sometimees his sense of proportion is rather different to anyone elses. ( makes perfect sense to him of course)!
I agree with Chriss about trying not to blame him and about being there to love him, not treating him as naughty etc - often punishments dont seem to have any effect.
Things that have helped:
He is majorly into "screen time" be it gameboy, pc, playstation,whatever. we have always limited the time he is allowed to play "screen time" and have linked this time to a reward chart.
Dont know how high functioning your child is, but given their perspective on rules of play, we have been able to explain to our son the rules regarding screen time and he accepts it. He is allowed an hour a day and has a digital timer which beeps at 10 mins left and 5 mins left to prepare him for the time to stop. It is the only thing that affects him. I was amazed when I first introduced it how positively he rsponded. The trick is to think about what makes your child tick, and to encourage him to control his behaviour or else the consequences will apply.
We run a reward chart those goes backwards and forwards to school and it has evolved over the years. We link it to his screen time, but on a more positive note we link it to daily/ weekly and monthly rewards. For example if he gets a full house at school, he gets an extra 20 mins screen time. Normally his limit is an hour and time may be taken away if he has not done the right thing.
I read a book called 1,2,3 magic which is parenting advice which has been shown to be successful for children on the spectrum and those with ADHD and wouldn't go back.
I did a visual timetable for the morning and evening routine , so that instead of constantly nagging and getting stressed, I ask him to check his list to see if he has completed everything. Amazed again at what a difference it made!
Another thing I have found recently which is working at the moment is a magnetic toy. It is a magnetic stand which is available with a variety of different magnets (either dinosaurs, sea creatures, dogs, butterflies....etc) He chose the design he wanted (which in his case was dogs) and there are 15. When he does something good I give him a dog from my pot and when he hs filled up the magnetic sculpture, he gets a reward (cinema trip/ swim/ bowling)
All is written down for him and his life has been a constant stream of rules, rewards and consequences and I sometimes feel it is too regimented, but it has worked for us.
Somewhere I read, they will never be cured, if they are coping well it is because you are managing them in the right way or something like that.
Of course, we have many ups and downs and we are in a good period at the moment, so I am able to sound on top of things!!!!!
WOAH - sorry if I have gone overboard, once I start, I dont know when to stop.
Finally, I think, the period between Sept and Dec is always the most difficult school wise. He is getting used to a new teacher , a new peer group and a change in routines, whilst they are all getting used to him. There are always fireworks (for which he is excluded), but somehow over time it gets better.
Also, he has found it easier since being able to tell the time. It helps him to know when things are coming I guess.
I am sure I have now said too much. I mean well
Take care of you
Phoebe
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cat
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nor will you be needing these
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or you could get
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at least you can
about itis it REALLY Sinead O'Connor?????
Have you forewarned your husband??
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<'> <'> Oh god, I am so cross on your behalf.
My immediate reaction is to say book an appt with another dr.
How dare she say AS is not so bad and how dare she recommend you get a dog - just another thing to add to the stress of life at home. I love dogs but choose not to have one because I know what a tie they are and how expensive they can be. I also know several people who have got a dog and regretted it because it isn't the cosy "complete the family 2.2 kids and a dog thing that it is cracked up to be".
HOW DARE SHE
And lots more
I know how difficult is was for you to go today and I know how bad it makes you feel to break down and cry in front of someone. I feel for you
<'> <'> <'> <'> <'> I really do.So what next?
I too was offered counselling and thought I would take up the option (still think about it) but in this area the sessions cost about �30 a week (may be subject to your financial situation there is the ability to waive the fee) and as I only work very part time, I cant justify spending that much money. I could of course ask my husband, but the less said about him the better.........................
Why wait a week before returning with this form?
Why not write down what has happened today (copy your post) and ask to see another gp?
Some are notoriously more sympathetic than others.
PLease please dont give up on the idea getting help. You have done enormously well going today
Hope the new haircut suits you!!!!!
Love and hugs
Phoebe
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http://www.udel.edu/bkirby/asperger/grandparents.html
That is the article I was talking about
This is the specific paragraph that I showed the doc
The child?s mother looks exhausted all the time. Could that be a cause?
It?s more likely an effect. Consider what her life is like: she has to constantly monitor what is going on regarding her Asperger child, thwart anything that might trigger a meltdown, predict the child?s reactions in all situations and respond immediately, look for opportunities to teach the child social behavior without creating a scene, and so on - every minute, every day. So it?s not surprising that she doesn?t feel like sitting down for a cup of tea with you and making small talk!
The truth is that the majority of mothers of Asperger children struggle with depression. While the special services she will receive over the next few years should help in some ways, she will still be the one to deal with the day-to-day difficulties of raising an unusual child. For many mothers, this means ceaseless work, often to the exclusion of their own needs. Their physical, mental and emotional exhaustion can have a profound effect on the health and happiness of the entire family.
For this reason, mothers of Asperger children need those closest to them to give their full, unconditional support, both in words and in action.
Show your parents, friends, husband EVERYone!!
TAke Care
<'> <'> -
<'> <'> <'> <'> <'> <'> <'> I tried those kalms which are completely natural and struggled on and off like that for FAR TOO LONG. I was in such a desparate state when I finally went to the doctor, I could barely speak. Fortunately, he was great and very supportive. I did not want to go on A-D's, but could not cope and was losing it far too often, very tearful and up and down, waking up of a night and not being able to get back to sleep with the worry of everything. Being such a "coper" and having to ask for help was so difficult, but I finally decided I had to do so for the sake of my kids. I couldn't be the mum I wanted to be in the state I was in.
He gave me a prescription and the first one just didnt kick in , so I then wasted another 2 months, taking something waiting to feel better (they take 4-6 weeks to kick in). Next visit I was given a different one and it is like a miracle! He told me that to really treat the problem, you have to look at taking them for 6-12 months at least and I worried about where it would end, not wanting to become dependent (not in the narcotics anonymous sense but psychologically).
Happily, I stopped taking them about ten weeks ago after taking them for about 12 months.
Going on them gave me the strength to deal with stuff and to talk to those nearest and dearest who really didn't give me any support. In reality, long term, nothing much has changed in my world, my marriage is on the brink of collapse, my son still has major problems at school (right now I am supposed to be writing to the LA who have palmed me off AGAIN), you know all the :wallbash: and lack of help. I am able to deal with things better. I just feel better. Cant explain it. I just cope better. Must have been the A-D's.If you think the way you are feeling is more than just the normal ups and downs of your life. PLEASE, PLEASE ASK FOR HELP. GO TO THE GP. Take a copy of your post, or a copy of a paragraph from something that says about how having a SN child affects their carers. I used the one from the Nancy Mucklow article which is for the grandparents of recently diagnosed children, it just hit the nail on the head and just took it and asked him to read it whilst I cried! (If you google Grandparents, ASD's and her name it comes up.)
Look after YOURSELF for once. You are IMPORTANT.
Hope you get something sorted.
PM me if you like.
Phoebe
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We are also near(ish) and have returned to Legoland this year after a 4 year break.
The older DS got, the more obvious it became that his behaviour was not just toddler tantrums and we had stopped putting him and ourselves through the stress.
Consequently my NTdaughter (4) had completely missed out. I took her to Legoland one day whilst DS was at school and she so enjoyed it. I asked if they did anything for AS children and they told me about the exit pass, so with much trepidation (the last theme park we visited was Black gang chine and DS overloaded and had a major meltdown and was carried kicking and screaming out of the park), we set out one Saturday.
The day was such a success, we bought annual passes and I wrote and thanked Legoland for their scheme which removed so much of the pressure from the day.
So confident was I feeling that I booked Eurodisney for 4 nights at Half term. Booked a disney hotel, so we could escape quickly if we needed to, booked for a few days so we didnt have to cram everything in, prepared DS in every way I could by showing dvd, printing pictures of the hotel and the room etc etc. Tried to check out on the internet if there was any such thing as an exit poass at Disney, but it didn't look promising.
Day 1 was am absolute disaster, meltdown's DS and H and almost divorced! (AGAIN)! Then I saw someone carrying a blue card to the exit of a ride and found out to my surprise, exit pass was available for DS.
Still wrapped up with the magic of it and both kids exhausted but with some treasured memories.
Hope you enjoyed it as much
<'> <'>
Name that tune.
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give us a clue